Critical Inquiries For Social J Edited by Marina Morrow PDF

CRITICAL INQUIRIES FOR SOCIAL JUSTICE
IN MENTAL HEALTH
Edited by Marina Morrow and Lorraine Halinka Malcoe
An exceptional showcase of interdisciplinary research, Critical Inquiries

for Social Justice in Mental Health presents various critical theories, meth-
odologies, and methods for transforming mental health research and fos-
tering socially just mental health praxis.
Marina Morrow and Lorraine Halinka Malcoe have brought together a
diverse group of scholars, activists, and practitioners whose work exposes
and disrupts the biomedical, neoliberal, and individualistic practices that
permeate contemporary mental health research, policy, and practice. The
contributors employ a variety of methodologies including intersectional,
decolonizing, Mad studies, feminist, post-structural, transgender, queer,
and critical realist to interrogate how power relations manifest in local to
global mental health systems and their impact on people with mental dis-
tress. By privileging the voices of people with lived experiences of emotion-
al distress and psychiatry, the collection encourages the reader to envision
systems and supports designed from the bottom up, in which the people
most affected have decision-making authority over their formations.
Critical Inquiries for Social Justice in Mental Health demonstrates why and
how theory matters for knowledge production, policy, and practice in men-
tal health, and it creates new imaginings of decolonized and democratized
mental health systems, of abundant community-centred supports, and of
a world where human differences are affirmed.
is professor and chair of the School of Health Policy

m a r i n a m o r ro w
and Management at York University.
lorraine halinka malcoe is associate professor of social epidemiol-

ogy in the Joseph J. Zilber School of Public Health at the University of
Wisconsin–Milwaukee, and adjunct professor in the Faculty of Health Sci-
ences at Simon Fraser University.
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Critical Inquiries for Social
Justice in Mental Health
EDITED BY MARINA MORROW

AND LORRAINE HALINKA MALCOE
UNIVERSITY OF TORONTO PRESS

Toronto Buffalo London
© University of Toronto Press 2017
Toronto Buffalo London
www.utppublishing.com
Printed in Canada
ISBN 978-1-4426-4920-0 (cloth) ISBN 978-1-4426-2662-1 (paper)
Printed on acid-free paper.
Library and Archives Canada Cataloguing in Publication
Critical inquiries for social justice in mental health / edited by Marina Morrow
and Lorraine Halinka Malcoe.
Includes bibliographical references and index.

ISBN 978-1-4426-2662-1 (paper). ISBN 978-1-4426-4920-0 (cloth)
1. Mental health services – Research. 2. Social justice – Research. I. Morrow,

Marina, 1963–, author, editor II. Malcoe, Lorraine Halinka, 1962–, author,
editor
RA790.5.C75 2017 362.2072 C2017-900530-8
University of Toronto Press acknowledges the financial assistance to its

publishing program of the Canada Council for the Arts and the Ontario Arts
Council, an agency of the Government of Ontario.
University of Toronto Press acknowledges the financial support of the Government

of Canada through the Canada Book Fund for its publishing activities.
Funded by the Financé par le

Government gouvernement
of Canada du Canada
Contents
Preface ix
Introduction: Science, Social (In)Justice, and Mental Health 3

l o r r a i n e h a l i n k a m a l c o e a n d m a r i n a m o r ro w
Part One: Foregrounding Social Justice Theorizing
1 “Women and Madness” Revisited: The Promise of Intersectional

and Mad Studies Frameworks 33
m a r i n a m o r ro w
2 A “Third Space” for Doing Social Justice Research 60

viviane josewski
3 Global Psychiatrization and Psychic Colonization: The Coloniality

of Global Mental Health 87
china mills
Part Two: Decolonizing Research and Practice
4 Mental Health in Africa: Human Rights Approaches

to Decolonization 113
mohamed ibrahim
5 Dancing with Complexity: Decolonization and Social Justice

Dialogues 138
ru b y p e t e r s o n a n d s a b i n a c h at t e r j e e
vi Contents
6 Melq’ilwiye (Coming Together): Re-imagining Mental Health

for Urban Indigenous Youth through Intersections of Identity,
Sovereignty, and Resistance 165
nata l i e c l a r k , pat r i c k wa lt o n , j u l i e d ro l e t , ta r a t r i bu t e ,
g e o rg i a j u l e s , ta l i c i a m a i n , a n d m i k e a r n o u s e
Part Three: Gendering, Discourse, and Power
7 Is It Normal or PMS? Women’s Strategies in Negotiating

and Resisting Negative Premenstrual Change 197
ja n e m . u s s h e r a n d ja n e t t e p e r z
8 Depression in Workplaces: Governmentality, Feminist Analysis,

and Neoliberalism 229
k at h e r i n e t e g h t s o o n i a n
9 Gender Non-conformity or Psychiatric Non-compliance?

How Organized Non-compliance Can Offer a Future without
Psychiatry 255
jemma tosh
Part Four: Media as a Site of Social (In)Justice
10 (De)Pathologization: Transsexuality, Gynecomastia, and the

Negotiation of Mental Health Diagnoses in Online Communities 285
t. garner
11 “One in Five”: The Prevalence Problematic in Mental Illness

Discourse 312
ta n ya t i t c h ko s k y a n d k at i e au b r e c h t
12 Madness in the Media: An Intersectional Analysis of Educational

Films and Television Programming, 1940–69 333
w e n dy c h a n a n d d o ro t h y e . c h u n n
Part Five: Refashioning Research for Social Justice Praxis
13 Ethics, Research, and Advocacy: The Experiences of the NAOMI

Patients Association in Vancouver’s Downtown Eastside 365
s u s a n b oy d , dav e m u r r ay , a n d n ao m i pat i e n t s a s s o c i at i o n
Contents vii
14 Using Arts-Based Methods to Create Research Spaces That Encourage

Meaningful Dialogue 386
i n d r a n i m a rg o l i n , t e r ry k ru pa , s e a n k i d d ,
da r r e l l bu r n h a m , daw n h e m i n g way , m i c h e l l e pat t e r s o n ,
and denise zabkiewicz
15 Disrupting Dominant Discourses: Rethinking Services and Systems

for Women with Experiences of Abuse 413
l o u i s e g o da r d a n d v i v i a n e j o s e w s k i , w i t h j i l l c o ry ,
a l e x x a a b i - jao u d é , l o r r a i n e h a l i n k a m a l c o e ,
and victoria smye
16 An Intersectionality Approach to Resilience Research:

Centring Structural Analysis, Resistance, and Social Justice 443
s a r a h c h ow n a n d lo r r a i n e h a l i n k a m a lc o e
Contributors 475
Index 487
Preface
Books typically have a long period of gestation, arising from multiple in-
fluences, intellectual encounters, and conversations. This collection is no
exception. Critical Inquiries for Social Justice in Mental Health began to
germinate during several years of exciting national and international col-
laborations among scholars, practitioners, and activists who have been on
the cutting edge of researching and redressing social inequities in men-
tal health. These collaborations were nurtured through the Centre for the
Study of Gender, Social Inequities, and Mental Health (2009–15),1 which
included thirty-two scholars2 from Canada, the United States, the United
Kingdom, and Australia, as well as an advisory committee and multiple
knowledge brokers with representation from a wide range of community
organizations, government departments, and social justice advocates. The
centre quickly rose to the forefront of developing research methodologies
to investigate how social inequities, and the oppressive systems that sus-
tain them, operate in mental health.
From its inception the centre foregrounded the contributions of people
with lived experiences of mental distress and psychiatry. It fostered dia-
logue across differences in mental health experiences, scholars from diverse
disciplinary backgrounds, and people working in different sectors of men-
tal health. The centre was committed in its operations to finding ways to
ensure that people who had experienced psychiatrization could engage with
the centre without having to assume psychiatric labels or identities. In hir-
ing research assistants and in adjudicating competitive trainee fellowships,
the centre encouraged applicants who could bring their experiences of psy-
chiatry and the mental health system to their work, as well as those who
had lived experiences of resisting other forms of social marginalization.
The centre had research teams in five related theme areas: violence, mental
health, and substance use; mental health reform and policy; criminalization,
x Preface
mental health, and addictions; recovery and housing; and reproductive and
sexual mental health. All centre teams were multidisciplinary and multisec-
toral in their composition. The centre supported a peer-reviewed, seed grant
program, which resulted in numerous original research projects and knowl-
edge exchange activities. Annually from 2011 to 2014 all centre affiliates con-
vened in Vancouver, British Columbia, for a series of “Critical Inquiries”
workshops in which investigators presented and discussed their emerging
research that linked theoretical developments related to social inequities and
social justice to research, policy, and practice in mental health. These events
also showcased the innovative work of scholars, activists, and artists from
outside the centre’s immediate circle, thus enhancing international exchang-
es about critical scholarship in mental health. The centre also hosted a yearly
summer training institute to advance critical theory and practice in mental
health; these covered, for example, dialoguing decolonizing and Mad studies
approaches in mental health, and exploring the concept of burn-out in the
context of social activism. Overall the centre’s body of work has advanced
the development of critical theory and methodological approaches – includ-
ing feminist, intersectional, post-structuralist, critical realist, and decoloniz-
ing – for understanding and addressing structural forms of oppression, and
power relations manifested in mental health and other systems that govern
and regulate the lives of people experiencing mental distress.
Acknowledgments
The idea for this book collection was inspired by the incredibly productive
exchanges that the Centre for the Study of Gender, Social Inequities, and
Mental Health afforded and the numerous relationships that were built in
the process. We would first like to thank the centre’s core staff (Brenda
Jamer, Lupin Battersby, and, in the early years, Renée Cormier), other
staff on projects (Julia Weisser), the graduate students and community-
based researchers who received centre research traineeships (Thanya Al-
Saadoon, Quinn Bennett, Sabina Chatterjee, Althea Crawford, Meilan
Fang, Mohamed Ibrahim, Viviane Josewski, Nathalie Lozano-Neira, Ruby
Peterson, and Jake Pyne), and the centre’s post-doctoral fellows (Benita
Bunjun, Susan Hardie, Cindy Holmes,3 and Richard Ingram) – several of
whom are contributors to this book, and all of whom made important
intellectual contributions to the centre. We would like also to appreciate
several individuals who worked on the centre’s advisory committee or as
knowledge brokers: Cecilia Benoit, Madeline Boscoe, Beth Jackson, Cat
Omura, Susan White, Jennie Williams, and branwen Willow; they made
Preface xi
significant contributions, especially to our discussions about policy and

practice. We thank the many non-centre members who pushed centre
collaborators’ thinking on social inequities and mental health by shar-
ing their work and perspectives at the annual workshops and training
institutes: Marion Allaart, Gord Bruyere (Amawaajibitang), Khatidja
Chantler, Natalie Clark, Elizabeth Cole, Megan Davies, Parin Dossa, Eric
Fabris, Adrianne Fitch, T. Garner, Rachel Gorman, Sharalyn Jordan, Mary
Ellen Kelm, JoAnne Lee, Farah Mawani, Siobhan McCarthy, Zarina Mulla,
Cindy Patton, Vikki Reynolds, Sara Scott, Ann Travers, Gursharan Virdee,
Jijian Voronka, and Jie Yang. We also thank the centre’s research team
members (see note 2 to the preface); this book would not exist without their
many contributions towards creating new knowledge that promotes more
socially just understandings of and responses to mental health.
Finally, we thank Marguerite Pigeon for her fine editing and advice, Janine
Farrell who assisted in identifying contributors, Sapna Singh for careful for-
matting of the manuscript, Kara Mannor for detailed proofreading, and
the manuscript reviewers for their suggested revisions. From University of
Toronto Press we thank our editors: Eric Carlson, Lisa Jemison, Stephen
Shapiro, and Angela Wingfield. Eric believed in our ideas from the start,
and Stephen and Lisa shepherded the book through its final stages. The
book would not have been possible without the financial support of the
Institute for Gender and Health, Canadian Institutes for Health Research,
and the Simon Fraser University Publication Fund.
A Note on Language
Mental health and mental illness are concepts that reflect how psychiat-
ric discourse has become naturalized. Many, ourselves included, contest
their uncritical use, which (re)produce relations of power, where psychiatry
is understood as the “ruling regime” (Burstow, 2013; Smith, 1987). Well
aware of the importance of power in language, we struggled with how best
to recognize critiques of dominant mental health discourse while engag-
ing both individuals who radically critique psychiatry and individuals who
work in mental health care, services, and supports. In addition, although
this book emphasizes the role of the social in mental health, we maintain
space for considerations of the complex and dynamic interrelationships
among bodies, biology, and society in ways that do not dictate or favour
biomedical responses. Thus, in the introduction to this volume we use a
variety of terms, sometimes referring to the common language of psychia-
try, but more often using terms such as mental distress, emotional distress,
xii Preface
emotional suffering, or mental difference to disrupt the power of psychiatry

and, in the latter case, to signal that not all people experience changes in
consciousness as distressing, and, indeed, they might see these as produc-
tive (see Fabris, 2011; O’Hagan, 2014). Likewise, contributors to this book
use the language of mental health and mental illness in various ways, each
according to the aims of their work.
Social justice, as noted by Viviane Josewski in chapter 2, is often a poorly
and inconsistently defined concept, especially in its pairing with mental
health. Most discussions of mental health, and even of mental health eq-
uity, do not adequately interrogate the values or underlying epistemologi-
cal and ontological assumptions guiding scholarship in this field. In our
use of the term we follow Josewski in rejecting a purely distributive justice
paradigm and instead promoting a critical relational concept of social jus-
tice grounded in the politics of recognition (Young, 2011), (re)distribution
(Rawls, 1971), and parity of participation (Fraser, 2003).
Looking Forward
This book is an important contribution to the field of mental health. The

collection highlights the original work of centre affiliates and others who
start by recognizing that dominant research and practice paradigms in
mental health are inadequate for understanding and responding to the
wide array of experiences that are currently labelled and diagnosed as men-
tal illness. Moreover, they share a concern with how government, profes-
sional, and health system values, guiding approaches, and models of care
can serve to re-inscribe, rather than ameliorate, existing social and health
inequities. In response, they explicitly apply emerging critical theories and
methodological frameworks to knowledge production in mental health as
a means of shifting the field towards social justice praxis.
We intend Critical Inquiries for Social Justice in Mental Health to speak
to multiple audiences – to people who have lived experiences of psychia-
trization and who may be working as advocates on the front lines of the
mental health system, or outside of it; to scholars and graduate students
who are developing alternatives to dominant approaches in mental health;
and to practitioners and policy actors who are working to create more so-
cially just mental health systems and supports based on self-determination
for people with mental distress/difference.
Distinguishing this book from the outstanding radical critiques of psy-
chiatry and the mental health care system published in recent years in the
Canadian context (for example, Burstow, 2015; Burstow, LeFrançois, &
Preface xiii
Diamond, 2014; LeFrançois, Menzies, & Reaume, 2013) is its predomi-

nantly intersectional approach and its emphasis on anti-colonial critiques
and decolonizing praxis, as well as transgender perspectives. Its focus is on
the application of a range of critical theories, methodologies, and methods
for producing knowledge that will advance social justice in mental health
research, policy, and practice in Canada, other Western nations, and the
global South. Critical Inquiries for Social Justice in Mental Health show-
cases a diverse collection of scholars, activists, and practitioners whose
work intentionally exposes and disrupts normative institutional and orga-
nizational practices in mental health, such as in social and professional
discourses, diagnostic practices, and media representations. Contributors
not only provide critiques of the status quo but also offer cogent strate-
gies to resist the harmful practices they document, thus charting a path to
social justice in mental health.
About the Editors
As editors of this book who are committed to intersectional and self-

reflexive praxis, we want to briefly situate ourselves and make visible our
social positions, experiences, and commitments, which may inform the ways
in which readers take up our work. Marina Morrow is a Canadian-born,
White settler with European roots. Marina came to social justice work
through her engagement with feminist anti-violence activism as an agita-
tor and a front-line worker in rape crisis centres and shelters in British
Columbia and Ontario. She returned to graduate school in order to make
sense of the stories of the women that she had witnessed, which often in-
cluded abuse at the hands of psychiatry, and to understand better the so-
cial and structural origins of oppression. These early experiences laid the
foundation for the next two decades of her research, which have focused
on interrogating the social, political, and institutional processes through
which health and mental health policies and practices are developed, and
on tracking mental health reforms in the context of neoliberal political
regimes. Marina was pivotally involved in the genesis of the Centre for the
Study of Gender, Social Inequities, and Mental Health and, as its director,
played a key role in the centre’s development.
Lorraine Halinka Malcoe was reared in a working-class, non-tradition-
al, bi-racial family in the United States; she is racialized as White, the
granddaughter of immigrants, and a reluctant re-settler of Turtle Island.
Trained as a social epidemiologist, she has increasingly become dismayed
with the limited theoretical, epistemological, and ethical foundations of
xiv Preface
research, education, and practice that are dominant in the fields of public
health and mental health. In her research Lorraine has collaborated with
Indigenous nations, community-based researchers, community organiza-
tions, and activists to address health inequities, child health, mental health,
mass incarceration, and violence against women. She develops social jus-
tice–centred approaches to her work and activism by drawing on critical
race, intersectional, and decolonial scholarship and on social movements
and community knowledge, and by listening to those who have experi-
ence in resisting multiple forms of marginalization. From its inception
Lorraine was integrally involved in the Centre for the Study of Gender,
Social Inequities, and Mental Health, and she served as the director of
training and as a co-leader of the Violence, Mental Health, and Substance
Use team.
NOTES
1 The Centre for the Study of Gender, Social Inequities, and Mental Health
(2009–15) was funded by the Institute for Gender and Health of the Canadian
Institutes of Health Research. Marina Morrow was the centre’s director and
principal investigator. For more detail on the centre’s activities see http://www
.socialinequities.ca.
2 For a list of the centre’s co-investigators see http://www.socialinequities.ca/
about/team-and-bios/.
3 Cindy Holmes was funded separately through the Michael Smith Foundation
for Health Research.
REFERENCES
Burstow, B. (2013). A rose by any other name: Naming and the battle against
psychiatry. In B.A. LeFrançois, R. Menzies, & G. Reaume (Eds.), Mad matters:
A critical reader in Canadian Mad studies (pp. 79–90). Toronto: Canadian
Scholars’ Press.
Burstow, B. (2015). Psychiatry and the business of madness. New York: Palgrave
Macmillan. http://dx.doi.org/10.1057/9781137503855
Burstow, B., LeFrançois, B.A., & Diamond, S. (Eds.). (2014). Psychiatry disrupted:
Theorizing resistance and crafting the (r)evolution. Montreal: McGill-Queen’s
University Press.
Fabris, E. (2011). Tranquil prisons: Chemical incarceration under community
treatment orders. Toronto: University of Toronto Press.
Preface xv
Fraser, N. (2003). Social justice in the age of identity politics: Redistribution, rec-
ognition, and participation. In N. Fraser & A. Honneth (Eds.), Redistribution
or recognition? A political-philosophical exchange (pp. 7–88). London: Verso.
LeFrançois, B.A., Menzies, R., & Reaume, G. (Eds.). (2013). Mad matters:
A critical reader in Canadian Mad studies. Toronto: Canadian Scholars Press.
O’Hagan, M. (2014). Madness made me: A memoir. Wellington, New Zealand:
Open Box.
Rawls, J. (1971). A theory of justice. Cambridge, MA: Harvard University Press.
Smith, D. (1987). The everyday world as problematic: A feminist sociology.
Toronto: University of Toronto Press.
Young, I.M. (2011). Justice and the politics of difference (2nd ed.). Princeton,
NJ: Princeton University Press.
CRITICAL INQUIRIES FOR SOCIAL JUSTICE
IN MENTAL HEALTH
Introduction: Science, Social (In)Justice,
and Mental Health
lorraine halink a malcoe and marina morrow
Social injustice abounds in mental health1 policy and practice. In far too
many societies – past and present – it has been commonplace and socially
acceptable for people labelled as mentally ill to be treated as non-persons.
People with emotional distress or mental difference have been feared, de-
rided, stigmatized, criminalized, and brutalized; their behaviours, mobility,
and life chances have been routinely restricted and blighted through insti-
tutional and interpersonal discrimination and coercive practices (includ-
ing in housing, employment, education, policing, and courts) and through
paternalistic and forced medical and psychiatric “treatments,” including
institutionalization, imprisonment, and compulsory community treatment
(Appignanesi, 2007; Burstow, 2015; Chapman, Carey, & Ben-Moshe, 2014;
Fabris, 2011; Foucault, 1961/2006; Foucault, 1965/1988; Gomory, 2002;
Porter, 2002; Warme, 2013). Indeed, in many Western countries, including
Canada, mental health inequities continue to be actively promoted by the
state, its institutions, and the “helping” professions – purportedly in the best
interests of the “mentally ill” – through myriad laws, social policies, and
practices that severely restrict the rights, freedoms, and capabilities of peo-
ple with (presumed) mental illness diagnoses (Burstow, 2015; Chammartin,
Ogaranko, & Froese, 2011; Metzl, 2009; Morrow, Wasik, Cohen, & Perry,
2009; Perlin, 1992; Shimrat, 2013).
Despite the pervasiveness of mental health injustices, not all people who
have been labelled as mentally ill experience the same kind or degree of soci-
etally induced harms. Their positions in prevailing social hierarchies – orga-
nized by shifting boundaries of race, gender, social class, sexuality, physical
ability, age, etc. – profoundly shape those experiences. For example, men-
tal illness diagnosis has long been used as a form of social control against
women, lesbian, gay, transgender, working-class, and Black communities
4 Lorraine Halinka Malcoe and Marina Morrow
(Caplan, 1987; Caplan & Cosgrove, 2004; Metzl, 2009; Tosh, 2011; Ussher,
1991). Children and elderly people have also been subjected to dispro-
portionate diagnoses and psycho-pharmaceutical treatments (LeFrançois
& Coppock, 2014; Mills, 2014; Olfson, King, & Schoenbaum, 2015). For
example, electroconvulsive therapy (ECT, formerly known as electroshock
therapy), which has been clearly shown to cause permanent brain damage
and memory loss, is most often used on elderly women (60–65 years and
older) and even on children (Burstow, 2015; van Daalen-Smith, Adam,
Breggin, & LeFrançois, 2014; Weitz, 2013). Moreover, Indigenous people
with emotional suffering have experienced severe and disproportionate
state violence – including death – due to processes of settler colonialism en-
acted through law and medicine. As Razack’s (2013) analysis of Indigenous
deaths in custody has shown, a presumed diagnosis of alcoholism, “a
problem that began in colonialism” (p. 359), is used to explain away the
excessively high numbers of Aboriginal people who die in police custody
in British Columbia, “with the inevitable consequence that [these deaths]
cannot be connected to the violence of an ongoing colonialism” (p. 352).
Science – or what has stood for science – has produced the knowledge,
the “evidence,” that undergirds and enables these injustices. Although un-
derstandings of mental health and illness are generated across a range of
disciplines – including sociology, anthropology, Indigenous studies, phi-
losophy, literature, and history – only certain kinds of evidence are mobi-
lized by professionals, media, governments, academics, and policymakers
who most influence the development of mental health systems (Thachuk,
2011). In particular, biomedicine – including the “psy-” sciences (Rose,
1998), neurobiology, pharmacology, and epidemiology – has essentially
driven out other explanatory frameworks of mental health, especially with-
in academic knowledge production and knowledge that emerges from the
state (including the police, the criminal legal system, and the child welfare
system) (Burstow, 2015; Chan, Chunn, & Menzies, 2005; and see in this
volume Boyd, Murray, & NAOMI Patients Association, and also Morrow).
Attention to biomedical evidence production that shapes mental health
policy and practice reveals that much of it serves to maintain status quo
power relations, thereby sustaining and deepening social inequities (Mills,
2013; Morrow, 2013).
In contrast to mainstream knowledge production, Critical Inquiries for
Social Justice in Mental Health produces counter-knowledge. As a whole the
collection demonstrates that experiences of emotional suffering and mental
difference occur within wider historical, structural, cultural, and political
contexts – locally and globally – that fundamentally influence how mental
Introduction 5
health issues are framed, named, and studied; how mental health treatment,
care, and supports are conceived and implemented; and how all of these are
experienced by individuals, their families and friends, and society at large.
Contributors elucidate theory-driven research and analysis grounded in new
applications of Mad studies and intersectional, feminist, decolonial, post-
structural, queer, transgender, and other critical methodologies that inter-
rogate power relations among societal actors, the state, and other oppressive
systems. They tackle the foundations of biomedicine through analyses of
diagnostic regimes, discourses, historical and new media, and institutional
and organizational practices. They document diverse strategies for resist-
ing the dehumanizing and harmful practices embedded in mental health
research, service delivery, and policy. As well, contributors offer new ways
to reimagine the research process, including methodologies for decolonizing
mental health on local and global scales, and participatory, arts-based, and
intersectional methods for producing knowledge that advances socially just
mental health praxis.
In what follows we provide a deeper analysis of dominant approach-
es to mental health research and clarify key critical theories taken up by
contributors. We then provide an overview of the book’s organization and
chapters. We end by detailing three tangible social justice strategies – il-
luminated across chapters – for transforming mental health research so
that the knowledge produced fosters equity for all people who experience
mental distress/difference.
Dominant Ideologies, Epistemologies,

and Praxis in Mental Health
Mental health has been receiving unprecedented public and policy attention
in Canada and other Western nations (Friedli, 2009; Hogan, 2003; Kirby
& Keon, 2006; Mental Health Commission of Canada [MHCC], 2009;
MHCC, 2012). Worldwide there have been strong calls to action from pro-
fessional sectors – such as editorials in The Lancet and via policy statements
and reports of the World Health Organization (WHO) (Horton, 2007;
Thornicroft, 2007; World Health Organization [WHO], 2013) – and compet-
ing calls from scholars deeply critical of the WHO and biomedical global
mental health approaches (see Mills and also Ibrahim in this volume).
The official story of mental health being told by biomedicine increasingly
claims that all forms of emotional suffering are “disorders” (Thachuk, 2011;
Whitaker, 2010) and that “mental illness” is a major contributor to the total
global burden of disability and disease (Bloom et al., 2011). Biomedicine
claims further that it has developed effective methods of screening, diag-

nosis, and treatment for these disorders (Thachuk, 2011) and thus calls for
psychiatric and especially pharmaceutical mental health “services,” includ-
ing in institutionalized “community” settings (Pearson, Janz, & Ali, 2013;
Sunderland & Findlay, 2013; Thornicroft, 2007; WHO, 2001, 2013).
Absent from this official story are perspectives and forms of evidence
that start with an analysis of power and consider the social, political, cul-
tural, and economic production of mental health problems and solutions.
Absent too are the diverse voices of experience – psychiatric survivors and
others who have lived with various forms of social marginalization and (not
unrelated) emotional suffering and thus have important knowledge regard-
ing the utility of mental health reforms, supports, treatment, and care (for
example, Burstow, LeFrançois, & Diamond, 2014; Capponi, 1992; Millet,
1990; Nana-Ama Danquah, 1999; Shimrat, 1997).
The limits of biomedicine are largely due to its adherence to reduc-
tionism, biological determinism, individualism, and unfounded notions
of objectivity. As Krieger (2011) has explained, a fundamental postulate
of biomedicine is that “the parts” explain “the whole,” which is both an
“ontological and epistemological” stance because it “makes claims about
both how the world works and how it can be known” (p. 136). In terms
of understanding population-level distributions of disease, Krieger argues
that biomedicine is premised on a set of three underlying ideological com-
mitments: “it emphasizes biological determinants of disease amenable to
intervention through the health-care system, considers social determinants
of disease to be at best secondary (if not irrelevant), and views populations
simply as the sum of individuals …” (p. 137).
Under biomedicine the question of population distributions of disease
becomes “a question of disease in individuals, which in turn is reduced
to a question of biological malfunctioning” (Krieger, 2011, p. 137). In the
mental health field, mental illness is seen and presented as an objective
material biological problem, located within the individual, and separate
from culture and society. The solutions to mental illness – and even to
social inequities in mental illness – are likewise confined to the individual
and the biomedical. As Krieger further explicates, “this biologic substrate,
divorced from its societal context, thus becomes the optimal locale for in-
terventions, which chiefly are medical in nature” (p. 137).
Yet, the social matters deeply. Historical analyses demonstrate that our
understanding of – and labels for – human experiences and responses have
not only varied dramatically across socio-cultural contexts but too often
have been in support of dominant oppressive structures (Appignanesi, 2007;
Introduction 7
Foucault, 1961/2006; Foucault, 1965/1988; Metzl, 2009; Shorter, 1998, 2008;

Ussher, 1991; Watters, 2010). For example, in the United States during the
rise of the Black Power movement in the 1960s, diagnoses of schizophrenia
shifted away from women to being applied primarily to Black men as a way
of blunting and punishing social activism (Metzl, 2009). As well, a host of
diagnoses have been applied specifically to women to describe a range of
responses to sexism and life transitions like menopause (Appignanesi,
2007; Ussher, 1991; see Morrow and also Ussher & Perz in this volume).
One exemplary case study concerns largely working-class young women
and adolescent girls at the State Training School in Illinois in the late 1800s
and early 1900s: enacting notions of sexual purity based on eugenics ideol-
ogy and social divisions of gender, race, class, and sexuality, (mostly) wom-
en reformers and professionals labelled these women as “sex delinquents”
and “mentally defective” and then disciplined them via involuntary com-
mitment laws (Rembis, 2011).
The effects of biomedical thinking are simultaneously pervasive and
largely unnoticed, extending far beyond the boundaries of biomedicine:
“biomedicine speaks … through the implicit ways that it teaches us to in-
terpret ourselves, our world, and the relationships between humans, nature,
self, and society. It draws upon and projects cosmology (ways of ordering
the world), ontology (assumptions about reality and being), epistemology
(assumptions about knowledge and truth), understandings of personhood,
society, morality, and religion (what is sacred and profane) [all italics in the
original]” (Gordon, 1988, p. 19).
Despite the profound ways that biomedicine shapes society, far beyond
what it can demonstrate scientifically, biomedicine still claims objectivity
for itself. As Gordon (1988) articulates, “although biomedicine both con-
stitutes and is constituted by society, this interdependency is nevertheless
denied by biomedical theory and ideology which claim neutrality and uni-
versality” (p. 19). These claims to scientific objectivity are directly related,
within mental health, to biomedicine’s upholding of scientists, academics,
and physicians as the sole experts capable of defining disease (or health),
framing research, and proposing solutions.
Still, the claimed benefits of biomedical understandings and solutions
in mental health are increasingly being questioned, including from within
the “psy-” disciplines. For example, there is mounting evidence of the iat-
rogenic harms of its most heavily promoted approach – the use of psychi-
atric medications (Bielefeldt, Danborg, & Gøtzsche, 2016; Gøtzsche, 2015;
Moncrieff, 2009). Clinical studies show the limited long-term effectiveness
of pharmaceutical solutions and indicate that anti-psychotics (often used
to treat diagnoses of schizophrenia), benzodiazepines (used to treat diagno-

ses of anxiety), and anti-depressants too often cause dependence, impede
people’s functioning and recovery, and lead to worse long-term outcomes
(for example, Barker, Greenwood, Jackson, & Crowe, 2004; Gøtzsche, 2015;
Nielsen, Hansen, & Gøtzsche, 2012; Whitaker, 2004). Moreover, attempts
to even agree on the cluster of symptoms that warrant a diagnosis of men-
tal illness have been hotly debated, as evidenced in the historical and cur-
rent debates surrounding the successive revisions to the Diagnostic and
Statistical Manual of Mental Disorders (DSM) that practitioners use to in-
form diagnosis and treatment (British Psychological Society, 2013; Caplan,
1987; Caplan & Cosgrove, 2004; Frances, 2013; see in this volume Morrow,
Tosh, and also Garner).
Evidence production and responses to mental distress are also shaped
within particular social policy contexts (Morrow, 2013; Morrow et al.,
2009; see also Morrow in this volume). In Canada substantive social policy
changes over the past twenty years (Finkel, 2006), coupled with the ongo-
ing erosion of community-based and peer-run mental health supports, have
entrenched clinical and biomedical responses to mental health concerns
(Morrow, Frischmuth, & Johnson, 2006; Morrow, Wasik, Cohen, & Perry,
2009). In the global context – where austerity measures and the expansion
of neoliberal political paradigms have promoted individualistic understand-
ings of complex social problems – capitalism and market domination,
through the will of corporations, call on individuals to assume the roles and
risks of the state (Braedley & Luxton, 2010; Brodie, 2007). Under neolib-
eralism, people with lived experiences of mental distress – especially those
simultaneously marginalized by multiple oppressive systems – are patholo-
gized, criminalized, and disempowered by the state and medical care sys-
tems (Metzl, 2009; Morrow, 2013). Neoliberalism also erodes social justice
in mental health by severely limiting access to mental health care systems
and supports, while buttressing pharmaceutical solutions (Morrow et al.,
2009; Whitaker, 2010; also Morrow in this volume).
Critical Theories for Social Justice in Mental Health
In this book we do not limit the term critical theory to its classical phil-
osophical articulation, which arose out of the neo-Marxist focus of the
Frankfurt School, but rather consider it a set of ideas that “views thinking
critically as being able to identify, and then to challenge and change, the
process by which a grossly iniquitous society uses dominant ideology to
convince people this is a normal state of affairs” (Brookfield, 2005, p. viii).
Introduction 9
Thus, critical theory is explicitly tied to social justice aims. It analyses pow-
er and power relations, as well as the shared assumptions, problem for-
mations, and commitments of disciplinary discourses. Of importance to
mental health research, critical theoretical approaches disrupt and eschew
binaries (for example, sex/gender, ability/disability, objective/subjective)
that serve to reinforce dominant ideologies and reproduce injustices. As
well, we include non-Western epistemologies, such as Indigenous knowl-
edges and decolonizing methodologies, under the umbrella term of criti-
cal theory because of their fundamental concerns with undoing both the
ideological and the material harms of colonialism, and with promoting the
self-determination and sovereignty of Indigenous Peoples (Smith, 2012).
In accordance with the book’s emphasis on exposing and disrupting
dominant relations of power, we employ Josewski’s critical relational con-
ception of social justice (chapter 2 herein), which she argues is most ap-
plicable to the forms of justice called for by Indigenous, Mad, and disabled
people’s movements. Josewski develops this concept, drawing on Young’s
(2011a) articulations of the politics of difference and of recognition and
on Fraser’s (2003) notion of “parity of participation,” which locates justice
in social arrangements that remedy both misrecognition and maldistribu-
tion. As Josewski explains, Fraser (2003) argues that material resources
must be distributed “to ensure participants’ independence and ‘voice’” and
that “the institutionalized cultural patterns of interpretation and evalua-
tion [must] express equal respect for all participants and ensure equal op-
portunity for achieving social esteem” (p. 5). Adding to Young and Fraser,
Josewski employs intersectional analysis and praxis to operationalize the
critical relational nature of social justice in mental health policy, practice,
and research and to advance critical scholarship directed at eliminating
structural inequities in mental health.
In defining social injustice in mental health, we turn to Young’s (2011b)
notion of structural injustice. As she delineates, structural injustice oc-
curs when “many policies, both public and private, and the actions of
thousands of individuals acting according to normal rules and accepted
practices contribute to producing [unjust] circumstances” (Young, 2011b,
pp. 47–8). Thus, the realization of social justice in mental health requires
exposing (a) the specifics of how socio-structural processes – enacted by
multiple oppressive systems and the individuals within them – stigmatize
and constrain the choices of people diagnosed with mental illness; (b) how
these processes (re)produce and maintain inequitable life chances across
socially defined populations; and (c) how medical, pharmaceutical, legal,
and criminal systems, as well as the media, create hegemonic discourses
that construe social problems as the fault and responsibility of individuals.

Contributors to Critical Inquiries for Social Justice in Mental Health take
up this call for an analysis of structural injustice by applying a range of crit-
ical theories to elucidate socio-structural processes operating within men-
tal health research and across state institutions and mental health systems,
to imagine alternatives to dominant biomedical and neoliberal discourses
and practices, and to provide strategies for developing equity-enhancing
individual, societal, and community-level mental health responses.
The study of sanism is likewise important for understanding social
(in)justice in mental health. Sanism has been defined as “the irrational
prejudices that cause, and are reflected in, prevailing social attitudes to-
ward mentally disabled persons, and those so perceived” (Perlin, 1999,
p. 4). The concept has been used to draw “attention to a broad set of values
associated with the idea of sanity, and unsettl[e] the status of those values
as self-evidently superior” (Ingram, 2011, p. 2). Scholars who use sanism as
their starting point often identify with the Mad movement and Mad stud-
ies, both of which seek to challenge medicalized, individualized models of
mental health and to reclaim the idea of madness as a positive and pro-
ductive identity (Burstow, 2015; LeFrançois, Menzies, & Reaume, 2013).
Through the paradigm of intersectionality, sanist ideology and practices
are seen to be intimately interconnected with other oppressive systems.
Intersectionality as a concept emerged most recently from the writing
and social justice activism of U.S. Black women, especially during the sec-
ond wave of feminism in the United States (Collins, 1986, 2000; Combahee
River Collective, 1977; Davis, 1981). In part, Black women proponents of
intersectionality were contesting the claims from many White feminists that
gender should hold an exalted place (both as an analytic tool for under-
standing oppression and as a rallying point for activism) over other forms
of oppression arising from racism and capitalism. The term intersection-
ality was coined by Kimberlé Crenshaw in the context of legal studies
and the development of critical race theory (Crenshaw, 1989, 1991) to elu-
cidate how oppressive systems and institutions are mutually reinforcing.
However, without naming it as such, intersectionality has been theorized by
Indigenous women activists and activists in the global South since at least
the nineteenth century (Clark, 2016; Collins & Bilge, 2016, p. 3). Central
to intersectional theorizing is that, “when it comes to social inequality,
people’s lives and the organization of power in a given society are better
understood as being shaped not by a single axis of social division, be it race
or gender or class, but by many axes that work together and influence each
other” (Collins & Bilge, 2016, p. 2).
Introduction 11
Many feminist scholars and activists have embraced intersectionality

for its analytic power in explaining interlocking “processes of differen-
tiation” (such as racialization and gendering) (Dhamoon, 2011) and the
resulting penalties and privileges produced by systems of domination –
colonialism, racism, sexism, heterosexism, ableism, capitalism, and san-
ism (for example, De Leeuw & Greenwood, 2011; McCall, 2005; Morris
& Bunjun, 2007; Roberts & Jesudason, 2013; Viruell-Fuentes, Miranda,
& Abdulrahim, 2012).
Seen as essential for understanding oppression in its multiple forms,
intersectionality foregrounds lived experience – that is, people’s own de-
scriptions and understandings of their lives. In mental health, applying
intersectionality requires that our analyses begin from the diverse knowl-
edges of people who have experienced psychiatrization, emotional suf-
fering, and/or mental difference and who have resisted – individually and
collectively – societal and institutional stigmatization, discrimination,
disempowerment, and dehumanization. However, even lived experience
can be co-opted. Indeed, the stories of psychiatric survivors have been ap-
propriated by mental health organizations and professionals to legitimate
their work – what Costa et al. (2012) refer to as “patient porn” because
of the ways in which these practices exploit survivors for the careers and
aims of professionals. Thus, intersectionality also foregrounds bottom-up
decision-making processes – what Spade (2011) has labelled “trickle-up
social justice” – that are wholly accountable especially to those who are
experiencing the worst manifestations of intersecting oppressive systems.
There is now a burgeoning intersectional scholarship emerging in men-
tal health and Mad studies (Burman & Chantler, 2003; Gorman, 2013;
Rossiter & Morrow, 2011; Tam, 2013). For example, Kanani (2011), in her
review of U.S. and Canadian literature on race and madness, illustrates
how the co-construction of these social concepts has justified historical
and ongoing colonialism and racism, including slavery and exclusionary
immigration policies. Her close reading of the literature reveals the histori-
cal “relationship between colonization, psychiatry and the construction of
the abnormal, racialized, other” (p. 3), as well as how diagnostic practices,
ECT, and other seriously harmful psychiatric treatments have been used to
socially control and punish people of colour.
In another example, this one on the intersections of age, sexism, and
sanism, Burstow documents the contemporary disproportionate use of
ECT in the “treatment” of elderly (mostly middle-class, White) women
diagnosed with depression, despite clear evidence of its long-term and per-
manent harms (Burstow, 2006, 2015; van Daalen-Smith, 2011). Indeed, a
comprehensive multi-site, multi-instrument prospective study of the cogni-

tive effects of ECT found that women suffered greater and more persis-
tent cognitive damage than did men following ECT, and that “adverse
cognitive effects … characterize routine treatment with ECT in commu-
nity settings” (Sackeim et al., 2007). Burstow (2006) argues that “ECT
constitutes … state-sponsored violence against our most vulnerable sisters
… [it is] an act of violence in a web of violence committed both by a total
institution [psychiatry] authorized by the state and by patriarchal society
more generally” (pp. 119–20). Linking this scholarship to social justice
praxis, many scholars and anti-psychiatry activists, including Burstow,
have called for a ban on ECT (Burstow, 2006, 2015; Weitz, 2013).
As intersectionality theory and praxis have travelled away from their
roots in feminist activism and scholarship by women (and queer people) of
colour, their potential for advancing social justice has been muted, particu-
larly in some formulations taken up by academic feminism (Bilge, 2013).
To avoid “doing intersectionality in ways that undo it [italics in original],”
Bilge (2013, p. 411) argues that intersectionality must be reconnected with
“the political subjectivities and struggles [of] less powerful social actors
facing multiple intertwined oppressions.” Reconnecting intersectionality
to its politicized roots requires understanding intersectionality not only as
an analytic lens and methodology for research but also as “a powerful tool
to build more effective alliances between movements to make them more
effective at organizing for social change” (Roberts & Jesudason, 2013,
p. 313). Several book contributors take up this challenge by linking their
intersectional analyses of mental health systems, policies, and practice to
social movements and to organizing for social justice.
Organization and Chapters
Critical Inquiries for Social Justice in Mental Health is organized into five
sections: (1) Foregrounding Social Justice Theorizing; (2) Decolonizing
Research and Practice; (3) Gendering, Discourse, and Power; 4) Media as a
Site of Social (In)Justice; and (5) Refashioning Research for Social Justice
Praxis. As a whole the collection demonstrates why and how theory matters
for knowledge production, policy, and practice in mental health, and it of-
fers a multitude of critical research approaches for producing knowledge
beyond the biomedical and neoliberal status quo. The book begins by delv-
ing into critical theory and its intimate connections to grassroots struggles
for social justice in mental health, and ends by elucidating specific methods
for integrating theory, research, and practice to achieve socially just mental
Introduction 13
health praxis. In between, contributors delineate approaches for decolo-

nizing mental health, discursive methods for illuminating the politics of
mental health policy and practice across the gender spectrum and diversity
of people who experience emotional distress, and media analyses that il-
lustrate the dynamic workings of power, including the power to resist.
Foregrounding Social Justice Theorizing
Part 1 presents the theoretical foundation of the book. Contributors pro-

vide new articulations of major critical theories – intersectionality, feminist,
Mad studies, social justice, and decolonial – for the purpose of reframing
mental health scholarship and practice to foreground social justice and
to produce evidence in support of transformational social change. Using
multiple critical theoretical lenses, part 1 allows the reader to reimagine
the possibilities of equity-oriented mental health research and praxis that
could be truly inclusive of all peoples and communities, locally and glob-
ally, who experience mental distress/difference, and especially those with
interlocking disadvantaged positions in social hierarchies based on race,
social class, indigeneity, gender, citizenship, sexuality, ability, and age.
In chapter 1 Marina Morrow explores the parallel histories, theories, and
tensions arising from early feminist critiques of psychiatry and the anti-
psychiatry and mental patients’ liberation movements. Drawing from the
Canadian context, she interrogates the discursive regime in mental health
within the current neoliberal political climate, illustrating how biomedical-
ism and neoliberalism have enabled systemic oppressions. Morrow advo-
cates for a new and more socially just approach for naming and responding
to mental distress – that of combining the frameworks of intersectionality
and Mad studies. In the face of the power invested in psychiatry, Morrow
argues that an intersectional Mad studies approach holds the best theoreti-
cal potential for producing liberatory knowledge, social change, and social
justice in mental health.
In chapter 2 Viviane Josewski delves deeply into social justice theorizing.
She asks, “Which dimensions and whose social justice claims are under-
examined in the analysis, why, and to what effect?” Her critical reading
of multiple, competing social justice theories reveals the limits – and po-
tential harms – of conceptualizing the root causes of (and remedies to)
mental health inequities solely through a (re)distributive justice paradigm.
She turns to intersectionality and a critical relational understanding of
social justice in mental health that addresses issues of redistribution and
recognition through Fraser’s (2003) notion of “parity of participation.”
Josewski emphasizes our ethical and political responsibilities for generat-

ing action-oriented knowledge that addresses the relational and intersec-
tional nature of the multiple injustices undergirding structural inequities
in mental health.
China Mills (chapter 3) takes on a crucial – and too often ignored – anal-
ysis of the entanglements of psychiatry and colonialism: how the colonies
were central to the development of “global psychiatrization” – the “univer-
salization, pathologization, and biologization of distress” – and not only
how psychiatry was, and is, a key tool of colonialism but also how psychia-
try itself can colonize. She delineates the processes through which psychia-
trization and colonialism have sought to destroy and erase diverse ways of
“knowing, being, and doing” and of understanding distress, while natural-
izing oppression and pacifying resistance. She traces the ongoing efforts
by the World Health Organization and the Movement for Global Mental
Health to reconfigure and diagnose the effects of global social injustices as
“mental illness” requiring medical, psychiatric, and pharmaceutical solu-
tions. Mills ends by highlighting ongoing resistance to the hegemony of
psychiatric knowledge systems, in the form of local knowledge and in user-
and survivor-led movements worldwide.
Decolonizing Research and Practice
Across the globe Western-centric, colonizing, and racist practices are em-
bedded in the mental health systems that are supposed to support people
with mental distress, and in the research that disregards the histories and
knowledges of Indigenous communities. Part 2 takes up this challenge by
providing methodological approaches for decolonizing mental health sys-
tems, research, and everyday social justice praxis. The contributions build
on the works of other Indigenous activists, scholars, and allies who are
striving to restore traditional healing practices and Indigenous worldviews
as these relate to mental wellness (Browne et al., 2009; Mussel, Cardiff, &
White, 2004; Tait, 2008; Williams & Mumtaz, 2008), and on the works of
those who are bringing Indigenous knowledges to the practice of research
(for example, Tuhiwai Smith, 2012).
Mohamed Ibrahim (chapter 4) examines colonial psychiatry across the
African continent and the decolonizing efforts to resist and replace it. Ref-
erencing his own practice as a psychiatric nurse in Kenya, Ibrahim compel-
lingly traces the historical and ongoing practices and effects of biomedicine
and psychiatry as agents of the colonization, oppression, and racialization
Introduction 15
of Africans. He thereby illustrates the ongoing legacy of colonialism, where

Indigenous spiritual and health practices have been actively undermined
and replaced by Western psychiatric practices, leading to harmful practices
and, too often, to gross human rights violations. Ibrahim calls for indi-
genizing, decriminalizing, and de-stigmatizing mental health. He ends by
describing the galvanizing work of Africa-wide and global movements of
consumer and psychiatric survivor activists to decolonize and democratize
mental health systems.
In chapter 5 Ruby Peterson and Sabina Chatterjee tap into the powerful
legacy of open discussion and storytelling in Indigenous knowledge tradi-
tions. Rooted in their multiple identities, including as allies (Peterson as an
Indigenous woman, and Chatterjee as a mixed – Indian and German –
woman of colour), they use a dialogical approach to convey the benefits
and costs of structural violence and colonial oppression, while engaging
decolonization as everyday practice. Through their shared stories and con-
versations they highlight the strengths of dancing with complexity – a means
of honouring Indigenous history, cultures, and Peoples while holding dif-
ferent standpoints and identities. Drawing on Indigenous teachings of con-
nectedness – where “wholeness is the foundation” (italics in original) – they
show how this dance helps them stay committed to social justice advocacy
while operating within “structurally violent silencing systems.”
Natalie Clark, Patrick Walton, Julie Drolet, Tara Tribute, Georgia Jules,
Talicia Main, and Mike Arnouse (chapter 6) present methods for decolo-
nizing research in their exploration of identity, culture, and mental health
among urban Indigenous youth in Canada. The authors worked with
Elders, urban Indigenous youth, community partners, and Indigenous uni-
versity faculty and allies, using a participatory action research design in-
formed by an Indigenous intersectional framework and Indigenous ethics.
Their findings unsettle fixed concepts of indigeneity, gender, and sexual-
ity and demonstrate how mental health systems based on Western value
systems can damage the bodies and identities of Indigenous youth. By
centring the voices of their participants, Clark et al. created new research
and knowledge, including new narratives about mental health that avoid
illness as a starting point.
Gendering, Discourse, and Power
Part 3 presents critical theory approaches for analysing how people both
contest and make use of pathologizing discourse, how gender formations
and responses to emotional distress and mental difference are governed in

medical and workplace contexts, and how they intersect with other cat-
egories of marginalization and difference (such as disability and citizen-
ship). Feminist and transgender perspectives are absent from most mental
health research, policy, and service design. Contributors in part 3 use criti-
cal realist, feminist, Foucauldian, and transgender approaches to reveal
how medical and psychiatric diagnostic categories (including “gender dys-
phoria” and “premenstrual dysphoric disorder”), and neoliberal business
and government initiatives on workplace depression, surveil bodies, reify
sex/gender binaries, and maintain inequitable social hierarchies. As well,
contributors discuss possibilities for advancing social justice in mental
health policy and practice.
Jane Ussher and Janette Perz (chapter 7) adopt a critical realist epistemolo-
gy to explore diverse women’s lived experiences of menstruation, premenstru-
al change, and premenstrual distress. Their material-discursive-intrapsychic
model allows for an understanding of women’s embodied and psychologi-
cal experiences of premenstrual syndrome (PMS) within the material and
relational context of their lives. They contrast two empirical studies (one
of primarily Anglo-Australian women and one of Assyrian and Karen
women who came to Australia as refugees). Their findings show that, for
Anglo-Australian women, the pathologized view of PMS negated not only
women’s strategies for coping with cyclical bodily changes but also the some-
times-positive effects of premenstrual change. In contrast, the Assyrian and
Karen women did not always associate negative premenstrual change with
biomedical diagnoses like PMS; rather, their experiences of premenstrual
change were shaped by gender, class, and migration.
In chapter 8 Katherine Teghtsoonian supplements Foucault’s analytic
of governmentality with a feminist approach in order to analyse business
and government responses to depression in the workplace and, in particu-
lar, their relationships to “neoliberalism as a governing ethos” and to the
production and effects of systemic inequities. Teghtsoonian argues that
Foucault’s concept of governmentality can reveal how governing practices
in the workplace become aligned with neoliberal policy orientations and
government goals, to frame workplace distress as a problem of individu-
als’ lack of adjustment to their work environments. Yet, drawing on Li
(2007), Teghtsoonian contends that governmentality fails to provide in-
sight into the relationships among political-economic processes, neoliber-
alizing policies, and mental distress as these operate in the workplace and,
especially, in motivating activism and social change.
Introduction 17
Jemma Tosh (chapter 9) applies a critical feminist approach – which

draws on transgender, critical psychology, post-structuralist, and inter-
sectionality perspectives – to provide a critical historical overview of the
pathologization of gender non-conformity by psychiatry. She then extends
these critiques to current psychiatric diagnostic practices. Tosh discursively
analyses the current DSM diagnostic category of gender dysphoria, show-
ing how it can be seen as a form of organized psychiatric non-compliance.
Although psychiatry pathologizes non-compliance (with medical gender
assignments), Tosh illustrates its liberatory potential for all who are ex-
cluded by psychiatry. She details how feminist, trans, intersex, and queer
activists have organized around non-compliance to increase accessibility
for gender-affirmation procedures, to depathologize transgender identities,
and to envision trans-led medical systems and “a future for gender non-
conforming individuals without psychiatry.”
Media as a Site of Social (In)Justice in Mental Health
Many critics have analysed mass media as a site for reproducing dominant
social discourses about mental distress that reinforce power structures and
limit the lives of people experiencing distress (for example, Olstead, 2002;
Ward, 1997). Now, with the emergence of new media landscapes, the rules
are changing; there are openings to disrupt negative portrayals of people
with mental distress, but there are also avenues for corporations (including
Big Pharma), government, and others in power positions to shore up status
quo ideas about mental illness. Part 4 exposes the power of traditional and
new media (including online forums, multi-platform campaign materials,
and archival educational documentaries) to shape societal understandings
of and responses to emotional distress and mental difference. It also explores
how individuals and activists can harness media for social justice aims.
T. Garner (chapter 10) contrasts online narratives describing the lived
experiences of two groups of men who seek chest surgery to remove un-
wanted breast tissue – cis men (whose bodily sex aligns with their gender
identity) and men who are medically defined as transsexuals. Exploring
how these men use online communities to negotiate, perpetuate, and resist
medical and psychological understandings of their experiences, Garner’s
analysis offers new ways to understand how access to these surgeries is
governed by medicine. Medicine acknowledges the distress of cis men with
“excess” breast tissue, but only trans men’s distress and desire for chest
surgery are pathologized through a mental illness diagnosis of gender
dysphoria. Garner shows how experiential narratives generate important

knowledge, which can promote social change that upholds “difference as
difference” rather than “difference as deviance.”
In chapter 11 Tanya Titchkosky and Katie Aubrecht use an interpretive
sociology lens to ask, “What images of people, problems, and adequate
responses are entering the lives of those targeted by awareness campaigns
through the ubiquitous mental illness discourse on prevalence?” Using
content analysis of publications about mental health that are circulated
by global organizations, national governments, agencies, and corporations,
Titchkosky and Aubrecht illustrate the pedagogical intent of this material
as convincing the public that mental illness is an omnipresent problem that
is poorly addressed. They contest this discourse and reveal how it is impli-
cated in processes of social exclusion and in the rationalization of social
inequality. They invite examination of assumptions about prevalence and
the ways that this discourse operates within the context of public health to
justify particular interventions.
Wendy Chan and Dorothy Chunn (chapter 12) apply an intersectional
analysis to documentary films and television programming between 1940
and 1969. They examine the social construction of madness and mental ill-
ness portrayed in films that target the clinical education of mental health
professionals and experts, and in public educational films that target middle-
and working-class parents and their children. Chan and Chunn’s analysis il-
lustrates the dominance, during the post–Second World War period, of the
eugenics notion of “mental hygiene,” as well as the competing beliefs in the
social causes of “deviant” behaviour and in the “psy-” or medical model of
mental illness. They reveal how both the social and the “psy-“ approaches
are premised on the unwavering faith in experts and their ability to deter-
mine what constitutes “normal” behaviour. This chapter demonstrates the
value of intersectional and historical analyses for contemporary struggles
that seek to deconstruct common-sense images of people with mental dis-
tress or mental difference.
Refashioning Research for Social Justice Praxis
In the final section, authors develop and apply critical methodologies for con-
ducting ethical research that produces knowledge and evidence for advanc-
ing social justice in mental health. Although much criticism has been levelled
at the dominance of biomedical knowledge production in mental health, less
scholarship has focused on developing new research strategies to counter its
dominance. Here contributors draw on multiple critical theories (including
Introduction 19
intersectionality and queer theory) to detail evolving research approaches

such as participatory and arts-based methods, feminist critical discourse
analysis, and a new conceptual framework designed to shift knowledge pro-
duction in mental health so that it is informed by and responsive to the direct
experiences and activism of people whose lives are most negatively affected
by powerful decision makers operating within oppressive systems.
Feminist participatory action research has long been seen as one way to
enact social change through the research process (Creese & Frisby, 2011).
However, projects that are genuine collaborations between researchers and
social activists are rare. Susan Boyd, Dave Murray, and the North Ameri-
can Opiate Medication Initiative (NAOMI) Patients Association (NPA)
illustrate the power of this bottom-up approach (chapter 13). The NPA,
an advocacy and support group comprising former research participants
in the high-profile NAOMI clinical trial of heroin-assisted treatment in
Vancouver’s Downtown Eastside, invited Boyd (an academic) to join its
members in designing research to foster ethical drug policy changes. Their
findings are an indictment of current drug-substitution studies and re-
search approaches that ignore the lasting impacts on communities. The
work of NPA illustrates how communities who experience extreme mar-
ginalization can come together to support one another; connect to kindred
local, national, and international organizations; push for change in how
governments and academics conduct research; and generate new knowl-
edge and evidence to advocate for progressive social policy.
Indrani Margolin, Terry Krupa, Sean Kidd, Darrell Burnham, Dawn
Hemingway, Michelle Patterson, and Denise Zabkiewicz (chapter 14) make
the case that arts-based research methods are well suited to capture the
little-understood aspects of mental health recovery that are based on gen-
der, age, and racialization. They use arts-based mediums to engage three
groups of women (older women, racialized women, and young women) liv-
ing in three different locales in Canada to address the question, “What are
the important moments, people, places, events, activities, and milestones
in your recovery?” Key themes that emerge relate to personal identity, the
importance of relationships and family, and the fulfilment of meaningful
roles. The research reveals that differences in the recovery experience vary
based on social identity and place. Margolin et al. argue that arts-based
methods can be used in ways that are consistent with intersectional ap-
proaches to restore our understanding of the vital role of social experience
in mental health recovery.
Louise Godard and Viviane Josewski, with Jill Cory, Alexxa Abi-Jaoudé,
Lorraine Halinka Malcoe, and Victoria Smye (chapter 15), critically
re-analyse focus-group data of women with experiences of violence and

mental health and/or substance use concerns. They use critical feminist dis-
course analysis guided by an intersectional lens and show how services and
systems that are intended to support women end up negatively affecting their
ongoing experiences of vulnerability and oppression. The authors’ findings
illuminate the discursive and structural constructions of the problem of vio-
lence against women and the ways in which these constructions shape the
harms and benefits experienced by women accessing services and supports
in health, mental health, legal, and social service systems. The authors ad-
vocate for improved responses to women by revaluing women’s knowledge
and adopting a violence- and trauma-informed approach that not only
“situates women’s experiences of violence within multiple oppressions” but
also ensures that women have adequate supports, social assistance, and safe,
stable, and affordable housing.
In the final chapter, Sarah Chown and Lorraine Halinka Malcoe draw
on emic notions of resilience rooted in gay men’s activism, as well as on in-
tersectionality and queer theory, to propose a new conceptual framework
for resilience research in gay men’s health based on five principles. This
research should, they argue, incorporate historical and structural analy-
sis; foreground interlocking systems of domination at work in producing
health inequities among diverse gay men; affirm resistance; centre knowl-
edge production by gay men who experience and resist multiple forms of
marginalization; and engage researchers in self-reflexive praxis. After eluci-
dating each of these complementary principles, Chown and Malcoe apply
them to an analysis of research articles on resilience among gay men to
show how their framework can guide future resilience research towards
explicit social justice aims.
Critically Inquiring: Cross-Cutting Strategies

for Social Justice in Mental Health
Mental health is a key site for social justice action. Critical Inquiries for
Social Justice in Mental Health illuminates various critical theory ap-
proaches to mental health research, all of which explicitly link knowledge
and evidence production to social justice praxis. The book is organized
into five sections based on common critical methodologies and topical ar-
eas of inquiry. Yet, across these sections, we wish to highlight here three
common strategies that emerge for transforming mental health research so
that it fosters elimination of inequitable power relations in society and in
mental health systems, and it supports the full humanity and potential of
all people experiencing mental distress/difference.
Introduction 21
First, central to the application of critical theories is the emphasis on chal-

lenging dominant epistemologies. Every chapter herein challenges domi-
nant epistemologies as one means to achieve social justice in mental health.
Contributors do this work by employing critical epistemologies (such as
feminist, Indigenous, and critical realist) and making visible the ideologies,
assumptions, aims, and commitments of powerful actors and institutions
(including psychiatry, medicine, media, government, and business). They ex-
pose these underpinnings, in part, through illumination of normative think-
ing and other socio-structural processes rooted in dominant discourses and
practices (for example, DSM diagnostic categories), and by employing epis-
temologies that privilege the vantage points and perspectives of people and
communities who have experienced – and resisted – the greatest harms from
inequitable power relations. Thus, contributors do not assume that academ-
ics are the exclusive – or even primary – holders of expert knowledge. Many
contributors draw on experiential, activist, and Indigenous knowledges to
explore experiences of – and responses to – mental distress and mental dif-
ference, not as problems of individuals but as produced by complex relations
of power, ideologies, and socio-structural processes that maintain interlock-
ing systems of domination. For example, authors unpack how dominant
epistemologies present categories of mental illness, indigeneity, sex, gen-
der, and sexuality as ahistorical, binary, and fixed concepts, and they instead
reveal the fluidity and contested production of these concepts. As well, sev-
eral contributors interrogate colonialism as a fundamental determinant of
individual and community health and wellness.
The value of applying critical theories to the study of mental health in-
equities is not limited, as Teghtsoonian (chapter 8) has clarified (regarding
Foucauldian approaches), to “criticism as an analytic practice of unsettling
the taken-for-grantedness of how things are” (italics in original). Rather,
contributors employ intersectional ethics and approaches to give rise to
an explicit social justice stance in their research. Thus, a second common
research strategy is contributors’ emphasis on conceptualizing, designing,
and interpreting their research in relation to people’s resistance against
coercion, domination, and injustice. Contributors use research to docu-
ment both individual acts of resistance and social movements (including
psychiatric user- and survivor-led, gay men’s, feminist, and anti-colonial
movements), they connect their theories and methodologies to these forms
of resistance, and they reshape research agendas to build power in mar-
ginalized communities and to affirm resistance. For example, contributors
document the historical and contemporary role of social movements in
contesting the abuses of psychiatry and forcing attention onto the histories,
lives, and stories of individuals and communities who have experienced
colonial violence, and onto the damaging effects of diagnostic categories

and other psychiatric practices. In an effort to illustrate that oppressive
systems are rarely monolithic, contributors delineate a multiplicity of ways
in which individuals resist psychiatrization, criminalization, and normal-
ization in their day-to-day actions and reactions to unjust social policies,
research and institutional practices, and mental health systems.
Building on resistance in its multiple forms, a final cross-cutting strategy
employed by contributors is that of using critical research methodologies
to reimagine, wholescale, mental health systems and supports. Contributors
imagine anew systems and supports designed from the bottom up, based
on local and Indigenous knowledges, and on structural and intersectional
analyses rooted in the positions of people experiencing emotional suffering
or mental difference (and especially those multiply marginalized by inter-
locking oppressive systems). Crucially, they imagine entirely new structures
in which the people most affected by the systems, supports, and services
that are designed to meet their needs have decision-making authority over
their formations. Documented in this volume are anti-psychiatry, Mad, and
anti-colonial movements in North America and the global South; trans-led
mental health initiatives; gay men’s activism; and unions and other advo-
cacy organizations led by people who use criminalized drugs. By tracing re-
search to people’s movements, resistance, and activism, by highlighting new
applications of critical theories (including intersectional, decolonial, femi-
nist, transgender, and post-structural), by centring knowledge production
in social justice ethics, and by extending critical research methodologies
(including participatory action, Indigenous, and arts-based) to support the
leadership and knowledge of people with lived experiences of psychiatri-
zation and marginalization, Critical Inquiries for Social Justice in Mental
Health creates new imaginings of decolonized mental health praxis, of an
abundance of people- and community-centred supports, of mental health
systems free of punishment and coercion, and of a world where human
differences are affirmed.
We hope this collection inspires further research, resistance, imaginings,
and action for social justice in mental health.
NOTES
1 Please see the preface, pp. xi–xii, for a discussion of the usage of the terms
mental health, mental illness, emotional suffering, emotional distress, mental
distress, and mental difference.
Introduction 23
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the astonishing rise of mental illness in America. New York: Random House.
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tervailing force to the realization of mental well-being for Canada’s Aboriginal
young people. International Journal of Mental Health Promotion, 10(4), 21–31.
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/1/9789241506021_eng.pdf ?ua=1
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Press. http://dx.doi.org/10.1093/acprof:oso/9780195392388.001.0001
PART ONE
Foregrounding Social Justice Theorizing

1 “Women and Madness” Revisited:
The Promise of Intersectional
and Mad Studies Frameworks
marina morrow
Introduction
When Persimmon Blackbridge and Sheila Gilhooly launched their Still

Sane exhibit in Vancouver in 1984, the second wave of the feminist move-
ment was well underway. The exhibit comprised moulded casts of Sheila
Gilhooly’s body, crafted by Persimmon, on which were inscribed Sheila’s
powerful story of being committed to a psychiatric hospital for being a
lesbian (Blackbridge & Gilhooly, 1985).
Still Sane marks a powerful moment in feminist history when women
who had survived abuse at the hands of psychiatry began to speak and write
about their experiences. Indeed, amidst the rapidly changing social land-
scapes in Canada, the United Kingdom, Australia, and the United States
feminists were developing an analysis of patriarchy that included critiques
of heterosexism, imperialism, racism, and psychiatry (for example, Cade,
1970; Chesler, 1972; Combahee River Collective, 1977; Davis, 1981; Greer,
1970; Millet, 1970; Morgan, 1970; Smith & David, 1975). Concomitant
with the feminist movement were two new forms of social mobilization: a
burgeoning mental patients’ liberation movement,1 led by people who had
been harmed by psychiatry (Beckman & Davies, 2013; Chamberlin, 1990),
and an anti-psychiatry movement, led by activists who highlighted the
abuses of psychiatry from within the psychological professions2 (Breggin,
1979, 1983, 1991; Laing, 1960; Morrison, 2005; Szasz, 1961).
In what follows I revisit early feminist critiques of psychiatry and their
relationship to both the mental patients’ liberation movement and the anti-
psychiatry movement. This history sets the stage for an interrogation of
the current discursive regime in mental health, with a focus on biomedical-
ism and neoliberalism and the ways they support intersecting structural
34 Marina Morrow
forms of oppression – sexism, racism, colonialism, and, notably, sanism.

I draw examples from the province of British Columbia to illustrate how
these discourses have shaped mental health and social policy decisions that
have negatively affected diverse groups of women.3 I end by advocating for
a merger of intersectional and Mad studies frameworks as the most pro-
ductive way forward for activists and academics who are pushing for social
change and social justice in mental health.
Revisiting History
Feminists during the second wave criticized psychology and psychiatry for
naturalizing and essentializing women as members of a weaker, more men-
tally fragile sex (Caplan, 1987). In the ensuing decades these critiques in-
tensified, and feminists sought to illustrate how patriarchal understandings
of sex and gender were manifest in the professional practice of psychiatry
(for example, Burstow, 1992; Caplan & Cosgrove, 2004; Penfold & Walker,
1983; Smith & David, 1975; Appignanesi, 2007; Ussher, 1991). Alongside
these critiques were writings by women of their personal accounts of men-
tal distress4 and experiences with psychiatry (for example, Blackbridge
& Gilhooly, 1985; Capponi, 1992, 1997, 2003; Millet, 1990; Nana-Ama
Danquah, 1999; Shimrit, 1997). Collectively these works illustrated how
psychiatry had bolstered patriarchal power to censure lesbians, blame
women for their experiences of physical and sexual abuse at the hands of
men, and reinforce racism and narrow social and cultural understandings
of femininity. Notably, feminist science studies introduced epistemological
frameworks that valued women’s lived experiences and challenged andro-
centric science practices and the objective-subjective binary (for example,
Haraway, 1988; Harding, 1987, 1991; Martin, 1991). These developments
gave epistemic privilege (hooks, 1984) to the first-hand narratives emerging
from the front lines of psychiatric institutions.
Of course, feminists were not alone in their critiques of psychiatry.
Chamberlin (1990) makes a distinction between the mental patients’ lib-
eration movement and the anti-psychiatry movement. Mental patients’
liberation was a grassroots movement of people who had experienced the
harms of psychiatry and institutionalization. Its participants used many
of the same tools and frameworks that had emerged from other libera-
tion movements in the 1960s and 1970s in North America, such as con-
sciousness-raising to address internalized oppression and what Chamberlin
(1990) calls “mentalism” (now more commonly referred to as sanism). As
Chamberlin (1990) notes, “the struggle against internalized oppression and
“Women and Madness” Revisited 35
mentalism generally was seen as best accomplished in groups composed

exclusively of patients, through the process of consciousness-raising (bor-
rowed from the women’s movement)” (p. 324).
The anti-psychiatry movement was “largely an intellectual exercise of
academics and dissident mental health professionals” (Chamberlin, 1990,
p. 323). Psychologists and psychiatrists, disenchanted with the direction of
their professions, highlighted the abuses of psychiatry and attempted to per-
suade their colleagues to change their practices (Breggin, 1979, 1983, 1991;
Laing, 1960; Morrison, 2005; Szasz, 1961). In this way the anti-psychiatry
movement and feminist academic critiques of psychiatry were similar. Both
emerged primarily (though not exclusively) from the perspectives of pro-
fessionals (either academics or clinicians), and neither necessarily made
space for the voices and experiences of people who had actually lived in-
stitutionalization and the harms of psychiatry. However, feminist critiques
were distinct in their criticism of the way in which psychiatry was shaped
by sexism.
The intensification of psychiatric de-institutionalization in the 1970s fu-
elled the growth of the mental patients’ liberation movement, as people
emerged from mental hospitals with vivid survival stories of abusive
practices (Blackbridge & Gilhooly, 1985; Capponi, 1992, 1997, 2003;
Millet,1990; Shimrit, 1997). They channelled their activism towards the
development of organizations and programs run by former patients (for
example, the Mental Patients Association and the West Coast Mental
Health Network in Vancouver, and Judi Chamberlin’s (1978) work in the
United States); the development of magazines (for example, Phoenix Ris-
ing in Toronto, In a Nutshell in Vancouver, and Asylum: An International
Magazine for Democratic Psychiatry and the Icarus Project in New York);
and, more recently, the launch of websites, blogs, conferences, and formal
networks dedicated to critically evaluating psychiatry and broader mental
health care systems (for example, MindFreedom and Mad in America in
the United States, the Critical Psychiatry Network in Britain, the Interna-
tional World Network of Users and Survivors of Psychiatry, and the Mad
Society of Canada)5 and to preserving the history of de-institutionalization
and psychiatric survivors (History of Madness, http://www.historyof
madness.ca/, and the Toronto Psychiatric Survivors’ Archives, http://www
.psychiatricsurvivorarchives.com). Thus, by the 1980s large cities in Can-
ada, the United States, and the United Kingdom had become hubs of
activism against psychiatry and had begun to advance the history and
perspectives of people who had been the subjects of psychiatry (Capponi,
1992, 2003; Crossley, 2006; Shimrit, 1997).
36 Marina Morrow
The feminist movement, the anti-psychiatry movement, and the mental

patients’ liberation movement have all played pivotal roles in critiquing the
psychiatric paradigm and the medical model of mental illness, exposing
the abuses of psychiatry and challenging its claims to objective knowledge.
Although feminist academic critiques overlapped with and sometimes ran
parallel to mental patients’ liberation, the two movements have not always
had an easy relationship. Indeed, as Chamberlin (cited in Harris, 2003) has
rightly observed, “when you talk to women who identify as feminists, and
you mention that you’re involved with mental health issues, they always
mention Phyllis Chesler’s book Women and Madness. But Phyllis Chesler’s
a psychologist and it’s a book in which somebody else talks for us. And this
comes from a movement that says that women should speak for themselves,
but somehow they think it’s OK that a psychologist should talk for women
who are ‘mentally ill’ and getting locked up. She gets it so wrong in that
book, and it really hurts me when that’s considered a feminist classic” (p. 1).
Thus, psychiatric survivors have often distanced themselves from the
feminist movement, viewing it as elitist and academic (Burstow, 2005), and
critiques of psychiatry have not always been a priority of feminist agendas.
Instead feminist clinicians and academics turned towards the development
of women-specific mental health services and resources (Morrow, 2007,
2008). Although women-centred services have helped to keep the structural
causes (for example, sexism, violence, racism, poverty) of women’s mental
distress in the public spotlight and have disrupted strictly biomedical un-
derstandings of mental health, what has been lost is a more radical critique
of psychiatry; that is, the feminist political urgency around the rights of
women diagnosed with mental illness has dissipated. This urgency has been
retained by Mad activists and by the emergence of Mad studies in the acad-
emy, which has been spearheaded largely by people with lived experience of
psychiatrization.
Despite the work of feminists and Mad activists, since the 1990s the
structural causes of mental distress have further receded from public aware-
ness. Within the psychological professions some have argued that there is
now a firmly entrenched biomedical paradigm, if not always in practice,
at least within contemporary psychiatric discourse (Luhrmann, 2000;
Martin, 2007; Rose, 2007). In this context, maintaining structural (as op-
posed to individually focused) analyses of issues like violence, poverty, co-
lonialism, racism, and gendered discrimination in their intersections with
mental distress has proven difficult. Furthermore, feminist and anti-racist
scholars and activists who write against biopsychiatry while also trying to
make meaningful social change (Chan, Chunn, & Menzies, 2005; Metzl,
2009; Ussher, 1991, 2011) struggle with the limited conceptual frameworks
available to describe mental states and experiences of mental distress.
Ussher (2005), in her articulation of a “material-discursive-intrapsychic”
(MDI) approach, has perhaps come closest to providing a theoretical frame
work that captures the tension between wanting to acknowledge women’s
individual experiences of psychic pain and not wanting to reinforce strictly
biomedical understandings of the origins of this pain. Ussher’s MDI mod-
el (described in more detail in chapter 7) uses a critical realist epistemol-
ogy that recognizes the materiality of the body while understanding that
this materiality is mediated through language, culture, and social and
political contexts. MDI thus recognizes the interconnections between the
body, the psyche, and material reality.
In order to develop better conceptual frameworks for acknowledging
individual distress without compromising our understanding of the social
and political origins of this distress, we first must unpack the powerful
discursive and political functions of biomedicalism and neoliberalism,
the task to which I now turn.
The Knowledge-Power Nexus: Biomedicalism and Psychiatry
On the eve of the 2013 publication of the most recent version of the
American Psychological Association’s Diagnostic and Statistical Manual
of Mental Disorders (DSM-5), the British Psychological Society’s division
of clinical psychology (DCP) released a powerful statement calling for a
major overhaul in the way mental illness is understood: “The DCP is of
the view that it is timely and appropriate to affirm publicly that the current
classification system as outlined in DSM and ICD [international classifica-
tion of disease], in respect of the functional psychiatric diagnoses, has sig-
nificant conceptual and empirical limitations. Consequently, there is a need
for a paradigm shift in relation to the experiences that these diagnoses refer
to, towards a conceptual system not based on a ‘disease’ model” (British
Psychological Society, 2013, p. 1).
The statement goes on to discuss how diagnostic classification minimiz-
es both the role of psychosocial factors in mental health, and the links
between people’s experiences of distress and their social, cultural, familial,
personal, and historical contexts, leading to over-emphasis on biological
interventions, such as medication. Perhaps most importantly, the DCP
claims that the diagnostic system is “embedded in a Western worldview. As
such, there is evidence that it is discriminatory to a diverse range of groups
and neglectful of areas such as ethnicity, sexuality, gender, class, spirituality
38 Marina Morrow
and culture” (for example, Bayer, 1987; Busfield, 1996; Fernando, 2010;
Shaw & Proctor, 2005, as cited in British Psychological Society’s DCP posi-
tion statement, 2013).
This declaration contextualizes my argument within the current political
climate, where debates internationally about the relative role of the biologi-
cal and the social in mental health have been fuelled by revisions to the DSM.
It is important to foreground psychiatry, the pharmaceutical industry, and
psychiatric practices as key points on the knowledge-power nexus and to
highlight the DSM as psychiatry’s primary modus of operation. Psychiatry
and psychiatric practices have been the target of scholarship and activism
grappling with the divide between the dominant science of mental illness
and people’s subjective experiences of distress and mental health care
treatment. Indeed, an understanding of psychiatry and its reach is nec-
essary for grasping the relationships between “scientific knowledge, bio-
medical institutions, social action and subjective experience” (Pickersgill,
2012, p. 328). To this end, Pickersgill (2012) reminds us that psychiatry is a
complex entity. For example, his review of critical sociological discourse on
psychiatry illustrates how the dominant functions of psychiatry (standard-
ization of subjectivity, medicalization, and the recourse to neurobiology)
are shaped in their interactions with clinical practice and shifting attitudes
about mental illness. Further, Pickersgill illustrates the successful mobiliza-
tion of medicalization and biomedical discourses by activist patients seek-
ing a cause for their mental distress (for example, U.S. war veterans and
the diagnosis of post-traumatic stress disorder), and those arguing for
a broader, more inclusive understanding of the brain (for example, the
neurodiversity movement spawned by people diagnosed with autism and
their allies). Key to my argument is Pickersgill’s claim that psychiatry is
multidimensional and that “‘science’ and ‘society’ mutually constitute and
legitimate one another” (p. 330). Thus, for Pickersgill (2012), the idiom of
co-production is a better way to understand this dynamism.
Such complexity and co-production are evident in an examination of
the tensions in the discursive field in which psychiatry and its practices are
actively engaged. Although these tensions have long historical trajectories,
it is with the advent of psychiatric de-institutionalization that governments
and those in the psychological sciences (psychology, psychiatry, and crimi-
nology) have been pushed to figure out how best to support people experi-
encing mental distress in communities. As the psychological sciences have
moved away from psychoanalytic explanations of mental illness in favour
of biomedical understandings and pharmaceutical interventions, tensions
have emerged from within these fields regarding what constitutes mental
illness and how best to understand its etiology. These tensions are played
out in scholarship but more saliently in the day-to-day practices in mental

health, as well as in the activism that resists psychiatric practices and prof-
fers alternatives.
Tensions over etiology are currently framed within debates about wheth-
er mental illness should be understood primarily through the biomedical
lens of illness or through models that understand the contributions of
both the biological and the social in mental health. The former comes pri-
marily from the psychological professions, the latter from public health
and mental health promotion (Goldner, Jenkins, Prairie, & Bilsker, 2011).6
However, in the context of dominant professional debates even the di-
chotomy of biological versus social is somewhat simplistic. While most bio-
logical scientists would agree that the causes of mental distress are complex
and interact with social factors (that is, they would support more multidi-
mensional models), Thachuk (2011), drawing on the work of Rose (2007),
argues that, “while in theory no one might explicitly endorse such a reduc-
tive approach, in practice the biomedical model of mental disorder informs
a broad range of institutional practices. The disproportionate amount of
attention that biogenetic variables receive within psychiatric research and
practice, coupled with the extent to which these theories are promoted by
special interest groups and how this moulds (and distorts) public percep-
tion, is at least enough to suggest that biological psychiatry represents
what Nikolas Rose refers to as a ‘style of thought’”7 (p. 147).
Indeed, the brain itself is embodied and exists in a social context, a fact
that Rose (2014) suggests must be emphasized by social scientists; that is,
“if you take something like the understanding of the human brain, it’s im-
possible to understand it unless you recognize that the brain is embodied,
and unless you recognize that the embodied brain is intrinsically, not just
extrinsically, enmeshed in its social and cultural and experiential world –
and that’s not just an add on” (p. 3).
Mindful of insights by Pickersgill and others into how biomedical
dominance may not translate into purely biomedically driven practices at
the clinical level (Lester, 2007; Light, 1980; Pickersgill, 2012), I nonethe-
less argue that the dominant public health and policy discourse in mental
health today is biomedical and has become reductive, in part, because of
the exigencies of mental health care systems in neoliberal policy contexts.
Further, biological understandings of mental illness emerge from different
disciplinary traditions than do social explanations, and the siloing of these
forms of knowledge means that a deep understanding of the relationship
between the biological and the social in mental health does not yet exist.
In instances when the two lines of explanation are brought together, the
biomedical dominates.
40 Marina Morrow
Yet, experiences of the mind can never be understood outside of social,

cultural, and historical contexts, which influence both the way a person’s
experiences and behaviours are understood and the kinds of interventions,
treatments, or supports that are offered or, too often, forced upon the in-
dividual. As these contexts are imbued with inequities that further compli-
cate social responses, it is useful to examine the literature that does take up
the social aspects of mental health.
A recent review of this literature suggests that evidence about the role
of inequities in mental health falls into several overlapping categories
(Ingram, Wasik, Cormier, & Morrow, 2013). These categories include lit-
erature that utilizes a social determinants framework (for example, Alegría,
Pérez, & Williams, 2003; Candy, Cattell, Clark, & Stansfeld, 2007; Li,
Mattes, Stanley, McMurray, & Hertzman, 2009); literature that focuses on
specific social locations or processes (for example, gender and ethnicity) to
establish relationships between mental health and social context (for ex-
ample, Harris, 1997; U’Ren, 2011); literature that addresses equity in the
context of access to services (for example, Marmot, Friel, Bell, Houweling,
& Taylor, 2008); literature that focuses on using a critical sociological
lens to understand inequities and mental health; and finally, Mad studies,
post-colonial, and intersectional literatures (and, I would add, decolonizing
frameworks) that challenge psychiatry as a problematic Western construct,
thus troubling the whole concept of mental illness (for example, Adelson,
2008; Caplan, 1995; Caplan & Cosgrove, 2004; LeFrançois, Menzies, &
Reaume, 2013; Metzl, 2009; Tait, 2008; Tang & Browne, 2008).
All of these approaches acknowledge the role that the social environ-
ment plays in mental health; however, only some (for example, critical
sociological, Mad studies, intersectional, feminist, post-colonial, and de-
colonizing frameworks) give explicit attention to power and social justice
as these play out in psychiatric practices (Ingram et al., 2013). The latter
also pay explicit attention to the structural underpinnings of social ineq-
uities (for example, discriminatory laws, ideologies that prop up racism
and sexism), and, in the context of feminist scholarship, place particular
emphasis on gender and race and, in some instances, on categories of dif-
ference and processes of differentiation (Rossiter & Morrow, 2011). What
sets Mad studies apart is its attention to the role of sanism, which is used
to understand the discrimination against people diagnosed with mental ill-
ness but goes further in its aim to unsettle assumptions about rationality,
normality, and madness (Ingram, 2011; LeFrançois, Menzies, & Reaume,
2013; O’Hagan, 2014; Perlin, 2000).
Specific to post-colonial and decolonizing approaches is the goal of
investigating colonialism and its ongoing damaging effects on mental
health, and exposing the ways in which psychiatry has historically been
used as a tool of colonization (Mills, 2014; Summerfield, 2012; see Mills
and also Ibrahim in this volume). Decolonizing approaches therefore val-
ue the contributions of Indigenous knowledge and Indigenous practices
(see Peterson and Chatterjee and also Clark et al. in this volume).
Scholars using critical sociological, Mad studies, feminist, post-colonial,
and decolonizing frameworks offer critiques of dominant paradigms in
mental health and develop and enhance frameworks for understanding so-
cial inequities and their role in mental health. Many studies also empirically
apply frameworks to generate new evidence about how inequities function
(Burman & Chantler, 2003; Morrow et al., 2010). Another key feature of
this literature is that social and structural processes that undergird people’s
experiences of mental distress are seen as inseparable from the contributions
of the biological and the genetic in shaping these experiences. That is, the
social environment not only contributes to mental illness but also surrounds
all of its treatment and policy responses; indeed, the environment shapes
knowledge production itself.
Given the diversity of the frameworks outlined above, what is strik-
ing is that only a very limited range of this scholarship has been actively
understood as evidence by policymakers, governments, and the psycho-
logical professions, namely that arising from biomedicine, neurobiology,
and pharmacology (Thachuk, 2011). Thornicroft and Rose (2005) have
referred to this as the “epistemological crisis on the status of evidence”
(p. 2) in order to illustrate the historical privilege placed by psychiatry and
medicine on evidence validated by randomized controlled trials and oth-
er forms of quantitative evidence, over that generated from more socio-
logically oriented studies through qualitative research that supports and
includes people with lived experience of mental distress. The point here
is not to pit qualitative and quantitative approaches against each other but
to recognize that certain forms of evidence have held more sway for no
good scholarly reason.
Thus, the serious tensions that exist with respect to understanding the
etiology of mental illness have an impact on what are seen as the most
effective frameworks and policies for supporting and caring for people ex-
periencing mental distress. In addition, debates over what constitutes evi-
dence stymie the translation of diverse forms of knowledge from research
into policy (for example, Hankivsky, Blackwood, et al., 2007; Kingdon,
2010; Waddell et al., 2005).
Although dominant biomedical understandings of mental illness have
meant that state resources and policies have been concentrated on medi-
cal forms of care (for example, psycho-pharmaceutical interventions and
42 Marina Morrow
hospital beds) rather than on community resources (for example, housing

and income supports), there is also evidence to suggest that some mental
health practitioners and policy decision makers recognize the importance
of qualitative forms of evidence and do find ways to attenuate strictly bio-
medical understandings of mental health to attend to equity issues and so-
cial context (Gamble & Stone, 2006; Jackson & Haworth-Brockman, 2007;
National Collaborating Centre for Methods and Tools, 2012; Pederson,
Hankivsky, Morrow, & Greaves, 2003; Status of Women Canada, 2014;
Whitehead et al., 2004).
Scholars and practitioners have also worked to provide for the basic social
needs of people experiencing mental distress. One example is the housing
first model (Tsemberis, Kent, & Respress, 2012). Housing first recognizes
housing as foundational to mental wellness and puts forward the idea that
people must have housing before any kind of treatment and support can be
successful (Tsemberis, Kent, & Respress, 2012). However, within housing
first models, biomedical treatment still plays a central role; that is, inequi-
ties are not foregrounded over an illness model. Programs that completely
de-emphasize biomedicine are rare but do exist. One such example is the
Finnish program out of Keropudas Hospital called “Open Dialogue,”
which treats people experiencing their first episode of psychosis through
a process of dialogue, most often without (or with very minimal) use of
anti-psychotic medications (Seikkula et al., 2006). Research has shown that
80 per cent of people going through this program do not show any active
psychosis after five years, and 85 per cent are able to return to active em-
ployment (Seikkula et al., 2006). Yet this model and others like it have not
been widely adopted in mental health systems, illustrating the bias against
any evidence that does not serve to prop up biomedicalism and the phar-
maceutical industry.
In summary, the way we come to understand mental illness is co-
constructed through a range of scholarship, discourses, and practices,
though it is clear that some of these have more salience in the current knowl-
edge production, practice, and policy context than do others.
Biomedicalism, Neoliberalism,
and Contemporary Policy and Practice
Biomedicalism is reinforced through the shift towards neoliberalism, which

has dominated governmental practice and policy development in Canada,
the United States, and the United Kingdom over the last thirty years. I ar-
gue that biomedicalism and neoliberalism mutually reinforce individualistic
understandings of social problems, and blunt the scholarship and activism

that point to complex interactions between the biological and the social
(Morrow, 2013; Morrow, Wasik, Cohen, & Perry, 2009).
Broadly understood, neoliberalism “is a set of practices centred on an
increased role for the free market, flexibility in labour markets and a recon-
figuration of welfare state activities” (Willis, Smith, & Stening, 2008, p. 1).
As a set of economic policies that centre the “free market,” deregulation,
and privatization, neoliberalism allows economics and the free market to
dominate all spheres of government (Armstrong, 2010; Connell, 2010). As
Connell (2010) writes, “the debate is about how to get the market working
better, not about what should replace the market” (p. 22). Thus, neoliber-
alism has effectively shut down debates about socialism because govern-
ments from all parties now adhere to neoliberal values. For Braedley and
Luxton (2010), this narrowing of debate has one crucial outcome: “neo-
liberalism is no longer an alternative to hegemonic political thought as it
was in the mid-twentieth century. It is hegemonic political thought” (p. 10).
Neoliberalism has particular implications for social justice, both with
respect to how neoliberal policies have deepened inequities and how so-
cial movements have organized to resist it (Smith, Stenning, & Willis,
2008). Neoliberalism can also be understood as a form of governmentality
(Foucault, 2008) and as constitutive of discursive practices that influence
the understanding of our social world. Thus, neoliberalism has been said to
be responsible for creating new identities, with a shift from collective forms
of identity to more individualized ideas about what constitutes subject for-
mation (Rose, 1996). Indeed, one cornerstone of neoliberalism is its pro-
motion of the autonomy of individuals from the state (Braedley & Luxton,
2010; Teghtsoonian, 2008; Yalnizyan, 2005). When translated into policy,
neoliberalism promotes individualistic understandings of complex social
problems (“responsibilization”),8 the increased use of market mechanisms
in health- and mental-health-care delivery (“managerialism”), and welfare
state retrenchment in favour of self-reliance and volunteerism.
Consequently, neoliberalism dovetails with biomedicalism because both
are focused at the individual level, rather than the social and structural lev-
els. In a neoliberal climate individuals are increasingly asked to assume the
roles and risks of the state, while governments avoid addressing systemic
problems, resulting in, for example, increased unemployment and poverty
(Braedley & Luxton, 2010; Morrow, Wasik, Cohen, & Perry, 2009).
In the Canadian social policy context neoliberalism has been actual-
ized through massive cuts to social programs and through substantial pol
icy changes in the health and social service sectors (Finkel, 2009). These
44 Marina Morrow
changes have had deleterious effects on mental health care systems and, es-
pecially, on housing, income supports, and employment programs (Morrow,
Frischmuth, & Johnson, 2006; Morrow, Wasik, Cohen & Perry, 2009).
Policy changes and cuts to social programs are particularly concerning in
the wake of the closure of large psychiatric institutions, where funds have
not typically been reallocated to community-based supports (Morrow et al.,
2010). The result is mental health care systems that are plagued by the lack
of resources, making access to publicly funded care virtually contingent on
DSM diagnostic criteria, and seriously delimiting the provision of preventa-
tive care and supports. By prioritizing psychiatric and acute mental health
care, the mental health system, under neoliberal regimes, has assured that
biomedical understandings of mental distress have prevailed over para-
digms that emphasize the role of equity and social supports in mental
health (Morrow et al., 2009).
Although the forms taken by neoliberalism differ in different contexts,
several examples from the Canadian provinces illustrate my point. Through
the 1990s and into the present day some provincial governments (notably
British Columbia, Ontario, and Alberta) introduced work-for-welfare pro-
grams (Ontario), tightened access to disability and employment insurance
programs (British Columbia), failed to raise social assistance rates to meet
climbing costs of living (British Columbia), and stressed self-reliance and
volunteerism (Alberta). These changes have had implications for people
with mental health problems with respect to income security and employ-
ment opportunities (Morrow, Wasik, Cohen, & Perry, 2009).
In British Columbia changes have been documented following the shift
in government in 2001 from a social democratic party, concerned with im-
plementing a proactive and equity-informed approach to mental health,
to the Liberal Party (for example, Morrow, Frischmuth, & Johnson, 2006;
Morrow et al., 2009). Under the Liberal government, mental health ser-
vices were decentralized to the provincial health regions, and the province
abandoned its leadership role in mental health reforms that had begun
to take root in the form of policies related to a recovery-oriented system
and the appointment of an advocate who could help document system-
wide problems (Morrow et al., 2009). The Liberal government quickly
disposed of the position of the provincial advocate, reduced the staff in
the mental health division of the ministry by 70 per cent, and instituted
some of the deepest cuts to social programs in Canadian history (Morrow,
Frischmuth, & Johnson, 2006). The cuts to income-assistance programs
were accompanied by a tightening of eligibility for income assistance and
the repeal of the Disability Benefits Program Act (which was replaced
by the Employment and Assistance for Persons with Disabilities Act)

(Morrow, Frischmuth, & Johnson, 2006). These two policy changes were
particularly devastating for people with mental health problems because
they triggered a massive re-assessment of people on disability assistance.
In the wake of several highly publicized suicides by people who were in
the midst of this re-assessment, the BC government was forced to halt the
process for applicants with diagnoses of mental illness and allow them to
continue receiving disability benefits (British Columbia Auditor General,
2004; Morrow, Frischmuth, & Johnson, 2006). Nevertheless, the govern-
ment continued on its course, and the new criteria were systematically
integrated into the system, resulting in unduly arduous practices and pro-
cedures for people trying to access disability assistance, which continue
until today. In terms of employment programming, funding was provided
for new, performance-based models that favoured large, cross-disability,
business-oriented organizations over small community-based initiatives
tailored to the needs of people experiencing mental distress. Although
the results of this policy change have not been systematically tracked,
evidence suggests that people who are experiencing mental distress and
trying to access employment supports are being squeezed out in favour
of less stigmatized applicants (Morrow et al., 2009).
In the ensuing years, although some funds have been reinvested into
supports (for example, housing), the community-based mental health pro-
grams, especially those that focus on peer support or specialized supports
for certain populations (for example, new immigrants, women) have contin-
ued to be cut in favour of funding more medicalized forms of support (for
example, assertive community treatment, ACT). Cutbacks are particularly
evident in British Columbia in the wake of the 2012 closure of Riverview
Hospital (the province’s only large psychiatric hospital). Closing Riverview
did not result in any new funds going to community-based mental health
supports for people transitioning out of a hospital setting. In light of fewer
and fewer community-based supports, biomedical approaches are becom-
ing the default form of treatment for most people. This default use of bio-
medical treatment has resulted in deepening concerns about the rights of
people diagnosed with mental illnesses and the role of the state in enforcing
treatment (Boyd & Kerr, 2016; Chammartin, Ogaranko, & Froese, 2011;
Fabris, 2011; Van Veen, Teghtsoonian, & Morrow, forthcoming).
Policy changes have occurred alongside an intensified governmental dis-
course in British Columbia that promotes individualism and independence
through, for example, an illness self-management discourse (Teghtsoonian,
2008; also Teghtsoonian in this volume) and the discourse of recovery
46 Marina Morrow
(Morrow, 2013). The increased dominance of these discourses undermines

the possibility of understanding the social context in which people live and
the structural barriers they face.
The foregoing examples, though not exhaustive, illustrate how neoliberal
ideology has influenced economic and social policy to substantially shape
the design of services and supports for people experiencing mental distress.
Governmental practices that are informed by neoliberalism and embrace
biomedicalism prop up, rather than ameliorate, structural and systemic
forms of oppression like sexism, sanism, colonialism, racism, ableism, and
poverty and hinder people’s ability to participate as full and active citizens
in community life. Thus, the twin ideologies of biomedicalism and neolib-
eralism militate against the integration of frameworks in mental health that
would help to understand and address inequities better.
In this climate, biopsychiatry dominates, and structural understandings
of human suffering are abandoned in the call for “better” diagnoses, phar-
maceutical solutions, and neurobiological research, rather than the radi-
cal systemic change envisioned by feminists, mental patients’ liberation
movement, and anti-psychiatry activists of the 1970s and 1980s. From this
perspective, the continuing and changing role of intersectional and Mad
studies interventions is both essential and fraught with challenges.
Theoretical, Policy, and Practical Potential

of Intersectionality and Mad Studies
In order to respond to the diverse understandings of mental health and

mental illness that have come about through activism, governmental poli-
cy and practice, and academic discourses, one must first acknowledge the
range of discursive practices at play and the tensions inherent in them. By
naming the diverse knowledge base, including (and centring) lived expe-
rience, we can make visible the way in which, despite the dominance of
biomedicine and psychiatry, other explanatory frameworks are being used
to understand the complexity of mental distress. Visibility is the first step
towards shifting the power balance and the discursive landscape.
Intersectional and Mad studies frameworks have the potential to fore-
ground the structural contexts in which mental distress occurs and to
stretch our understanding of what is considered acceptable human expe-
rience. Intersectionality comes to us from the work of women of colour
and Indigenous feminist activists and scholars (for example, Combahee
River Collective, 1977; Crenshaw, 1991; Davis, 1981). Intersectionality
as an analytic approach or a methodology brings to the forefront an
understanding of power as it is mediated through a range of social rela-

tions based on, for example, gender, race, culture, ethnicity, sexuality,
ability, and class. Intersectional scholars are interested not just in intersec-
tions, per se, but also in what these intersections have to say about power
(Dhamoon, 2011). Central to intersectionality is the foregrounding of lived
experience, that is, people’s own descriptions of living various intersections.
People’s understandings and experiences of their lives, especially when af-
fected by poverty, racism, colonialism, and other systems of power, are seen
to offer key epistemological contributions to the understanding of social
inequities (Rossiter & Morrow, 2011). Thus, intersectionality has the poten-
tial to more cogently mine social inequities as they pertain to mental health.
Intersectionality can also factor in the specific forms of discrimination ex-
perienced by people diagnosed with mental illnesses; that is, it can lead to
a fuller understanding of sanism in its intersections with other systems of
oppression (Gorman, 2013; Legghio, 2013).
A burgeoning scholarship on intersectional approaches to mental health
research and policy is emerging (for example, Burman & Chantler, 2003;
Clark et al., 2013; Rossiter & Morrow, 2011), illustrating its powerful po-
tential as an analytic framework that can produce a better understanding
of how relations of power are structured and how these relations have an
impact on people’s experiences of the mental health care system. For ex-
ample, in the work of Clark et al. (2013) (and Clark et al. in this volume)
the use of decolonizing methods in conjunction with intersectionality
shows how culturally safe practices that are based on Indigenous traditions
and knowledge can enhance the lives and well-being of Aboriginal youth.
Another example can be found in the intersectionality-informed work of
Burman and Chantler (2003) on service responses to South Asian women
who attempt suicide or self-harm. Their research reveals that race and
culture are often privileged over gender by mental health providers in the
development of culturally “sensitive” responses to the mental health con-
cerns of women. This has led to an increased trend in the United Kingdom
towards using traditional healers in the context of South Asian mental
health services; however, Burman and Chantler (2003) found that these
interventions (like many in mainstream mental health services) sometimes
reinforced heterosexism and sexism and, thus, oppressive practices against
South Asian women.
Furthermore, though still in its nascent stages, intersectionality is begin-
ning to be used to guide policy development, analysis, and implementation
(for example, Hankivsky, 2012; Parken, 2010). Examples of policy appli-
cations include the Intersectionality-Based Policy Analysis Framework
48 Marina Morrow
(IBPA) (Hankivsky, 2012) and the multi-strand method (Parken, 2010),

both of which have been used in the Canadian context by policymakers
and providers seeking to apply intersectionality to their work (Hankivsky,
2012; Morrow, Battersby, Cook, & Hardie, 2014). A recent example can
be found in the use of the multi-strand method in British Columbia to
examine the policy of self-directed care in mental health. In self-directed
care, people experiencing mental distress get financial supports to choose
the kind of services and supports they can access, including non-medical
supports (Alakeson, 2008; Cook et al., 2010; Cook, Morrow, & Battersby,
in press). The multi-strand method involves convening an “evidence pan-
el,” comprising policy actors and service providers that represent different
equity groups (“strands”). The panel then undergoes a series of work-
shops designed to help develop equitable social policies (Parken, 2010).
One group in British Columbia that used the multi-strand method came to
understand the structure of mental health care payments in the Canadian
public health care system, the way in which these favoured particular kinds
of services (psychiatric) over others (psychological or social services), and
the role that successive governments have played with respect to the re-
trenchment of the welfare state and the proliferation of neoliberal ideolo-
gies (Cook, Morrow & Battersby, in press; Morrow et al., 2014). Thus, the
multi-strand method surfaced numerous systemic barriers that were con-
sistent with an intersectional understanding of the role of power and its
distribution in the mental health care system (Morrow et al., 2014).
Meanwhile, the emerging field of Mad studies is a project dedicated to the
study of madness and psychiatrization, and the oppression and agency of
Mad subjects (LeFrançois, Menzies, & Reaume, 2013). Mad studies emerged
historically from the work of Mad activists (following on the legacy of the
mental patients’ liberation movement) who were protesting the abuses of
psychiatry and documenting their lived experiences of what was labelled
mental illness. As this activism merged with the work of academics, Mad
studies began to coalesce into a distinct field, drawing some of its ideas from
the field of critical disability studies, which is dedicated to exploring the role
of the social and the political in defining disability and in deconstructing
what constitutes the “normal” body (Corker & Shakespeare, 2002; Davis,
1998; LeFrançois, Menzies, & Reaume, 2013). Described as an “interdis-
ciplinary and multi-vocal” praxis (LeFrançois, Menzies, & Reaume, 2013,
p. 13), Mad studies brings activists, scholars, and people with lived experi-
ence together to push the boundaries of what we understand as mental ill-
ness and to challenge the complex power relations at play in mental health.
Although there are some interesting historical convergences between the

development of intersectionality and the theorizing of sanism as a form of
discrimination against people diagnosed with mental illness (Ingram, 2011;
Perlin, 2000), Mad studies activists and scholars are only just beginning to
adopt intersectional frameworks in their work (for example, Gorman, 2013;
Legghio, 2013; Tam, 2013). Thus, intersectional Mad studies scholars are
beginning to name sanism as a form of oppression akin to sexism and rac-
ism, and to explore the implications of this for understanding experiences
of madness, as well as for policy and practice in mental health (Gorman,
2013; Ingram, 2011; Ingram et al., 2013; Morrow & Weisser, 2012; Perlin,
2000). Gorman (2013), for example, discusses the politics of the current
Mad movement and cautions against an emerging “Mad nationalism,”
which can fall into the trap of essentializing madness and blunt the wider
intent of anti-oppression work that seeks to draw connections between
madness and other forms of oppression.
The integration of an intersectionality paradigm in Mad studies has the
potential to attend to interacting forms of oppression and privilege, includ-
ing through analyses of the power vested in psychiatry, the structure of
mental health care, and the lived experiences of Mad people. An inter-
sectional Mad studies approach can provide a framework that is attentive
to both the lived experiences of mental distress and the structural contexts
in which that distress emerges and is experienced. This approach can also
provide us with new language and ways of understanding these experiences
that do not re-inscribe strictly biomedical understandings of mental dis-
tress. Although clearly feminists are key contributors to Mad studies’ theo-
rizing and activism, the concept of sanism has not yet been fully explored
for its contributions to intersectional theorizing. Thus, intersectional schol-
ars must begin to think about the ways in which sanism constitutes a form
of oppression, and to work on theorizing sanism as it manifests in conjunc-
tion with other social processes.
Currently a tension is at play between intersectional scholarship and Mad
studies scholarship, a tension that must be exploited to a productive end:
a more cogent analysis of the structural foundations of social inequities
as they play out in the lives of people subject to psychiatric interventions.
Intersectional Mad studies approaches have the ability to inform current
Mad activism and to reignite feminist activism surrounding the lived expe-
rience of mental distress. Finally, these approaches can powerfully speak
back to biomedicalism and neoliberalism by mobilizing activism that resists
the state’s attempts to isolate and individualize human experiences.
50 Marina Morrow
NOTES
1 The terms used to describe this movement have varied. Groups forming in
the early 1970s tended to use mental patients’ liberation, mad liberation, and
insane liberation (see Chamberlin, 1990, and Chabasinski, 2014). In the 1980s
and 1990s psychiatric survivor movement began to be used (Capponi, 2003).
Currently, psychiatric survivor, Mad activism, Mad pride, and Mad politics
are all in use.
2 It should be noted that the actual individuals who participated in these
various forms of activism sometimes overlapped; that is, some feminists were
also anti-psychiatry activists, and some anti-psychiatry activists were also
mental health professionals.
3 Although the author uses examples from her own research and that of others
in Canada and British Columbia, they have relevance to other jurisdictions.
4 As discussed in the introduction, the language used to describe various
mental states is highly political and often contested (see Burstow, 2013,
for a discussion of terminology in mental health). In this chapter I favour
the term mental distress because it de-emphasizes the biological connotations
of more traditional terms like mental health and mental illness. I retain the
use of the terms mental health and mental illness when they are being used
to describe a context in which these terms are routinely used.
5 Many conferences have offered a critical perspective on psychiatry. Three
recent ones in the Canadian context are the Madness, Citizenship, and Social
Justice Conference in Vancouver, 12–15 June 2008 (http://www.sfu.ca/
madcitizenship-conference/); Psych Out: A Conference for Organizing
Resistance against Psychiatry, in Toronto, 14 October 2009; and the annual
Critical Inquiries workshops organized by the Centre for the Study of Gender,
Social Inequities, and Mental Health, in Vancouver (2009–2014) (http://www
.socialinequities.ca).
6 It should be noted that some Mad activists eschew an illness framing
altogether in favour of an understanding of madness as productive (Fabris,
2011; O’Hagan, 2014).
7 By “style of thought” Rose is suggesting that biological psychiatry is so
normalized as the dominant discourse that it becomes a routine way of
thinking about mental health and mental illness.
8 Responsibilization is “a term developed in the governmentality literature to
refer to the process whereby subjects are rendered individually responsible
for a task which previously would have been the duty of another – usually
a state agency – or would not have been recognized as a responsibility at all”
(O’Malley, 2009, p. 276).
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2 A “Third Space” for Doing Social
Justice Research
viviane josewski
The recognition that systematic differences in health outcomes within and

across populations are largely determined by social factors and, hence, are
remediable through social and political action has moved the concern for
health equity and social justice high on national and global research agendas
(World Health Organization [WHO], 2008, 2013). Thus, the goal to reduce
inequities in health has become a major public health priority; yet, “how
to best achieve this goal is not well understood” (Smith, Smith, Harper,
Manuel, & Mustard, 2014, p. 384). To date, Canada, like many other coun-
tries, has not made significant strides in advancing equity and social justice.
Developing effective responses to inequities in health is challenging given the
complex nature of social inequities in health and the multiple injustices as-
sociated with them (Hankivsky, 2011). This is particularly true for inequities
in mental health,1 which, though embedded within “the context of specific
social and structural determinants of health,” have been said to “operate dis-
tinctly and are overlaid with the additional stigma and discrimination that
often accompanies a mental illness diagnosis” (Ingram, Wasik, Cormier, &
Morrow, 2013, p. 6). Social justice–oriented research that sheds light on the
ways in which multiple systems of oppression and domination are linked
and operate within different contexts is thus especially important.
At the same time there remains a significant degree of ambiguity within
the literature on health inequities when it comes to defining the meaning
of social justice (Braveman, 2014; Ingram et al., 2013). This observation
highlights the little interest that the field has shown until recently in en-
gaging the work of ethical and political philosophy and thus its potential
relevance, and indeed “criticality,” for improving the understanding of and
responses to social inequities in health (Peter & Evans, 2001).
A “Third Space” for Doing Social Justice Research 61
The uncritical reliance on poorly defined and inadequately theorized

conceptions of social justice and equity must not be mistaken for an ab-
sence of ethical discourse. As inequities in health refer to those differ-
ences in health that are deemed to be “unfair and unjust” (Whitehead &
Dahlgren, 2006, p. 4), any engagement with the matter is thus bound to in-
volve some value judgment, whether or not the underlying ethical reason-
ing is made explicit (Peter & Evans, 2001). This means that it is not always
clear which discourse informs which theoretical approach and framework
for addressing inequities in health (Kirkham & Browne, 2006). Moreover,
while common agreement exists on the values of equality and fairness
underpinning the notion of social justice, there are growing concerns that
these common-sense agreements may have “obstructed rigorous scrutiny
and obscured significant tensions in its [social justice’s] application to pol-
icy,” as well as practice and research (Kirkham & Browne, 2006, p. 324;
Sherwin, 2012; Varcoe, Pauly, & Laliberte, 2011).
Such concerns have to be understood within the context of multiple,
competing social justice discourses, which are in turn informed by numer-
ous and at times contradictory ethical and social theories (Pauly, 2008;
Young, 2011). To engage in any meaningful discussion about social justice
in mental health, it is therefore critical to push further into the ethical and
moral domain. In this chapter I undertake a critical reading of social justice
discourses in relation to mental health inequities to consider more explic-
itly the ways in which theories of ethics, society, and social change inform
contemporary conceptions of social justice, and their application in mental
health research, policy and practice.
Starting with a brief survey of the major frameworks for theorizing in-
equities in mental health, I explore how different understandings of, and
responses to, studying and redressing inequities in mental health interface
with different ethical theories and justice paradigms. This is not intended to
be a comprehensive review of social justice theories and frameworks; rather,
it is meant to illuminate the underlying values, beliefs, and assumptions and
to enhance understanding of the potential weaknesses, strengths, and possi-
bilities of different ethical frameworks and notions of social justice for theo-
rizing social inequities in mental health and enacting social justice agendas.
Pursuing this line of thought further in the next section of the chapter, I
explore the policy, research, and practice implications of adopting a health
equity lens that is informed by a critical relational conception of social
justice in mental health. I begin by offering some thoughts on what mental
health service delivery and policy would look like if a value was placed on
62 Viviane Josewski
a critical relational understanding of mental health inequities. I then shift

the gaze to critically reflect on the meaning of a relational ontology for so-
cial justice as a fundamental starting point for research, explicating episte-
mological and methodological compatibilities and discrepancies with what
might be considered disparate theoretical traditions and research paradigms.
While I want to be cautious to not discount the importance of the re-
search undertaken from any particular research paradigm, a core argument
of this chapter is that the way in which we conceive of the relationship be-
tween society and its individual constituents has implications not only for
the explanatory methodology but also for the version of social justice that
is, and in consistency can be, endorsed. In keeping with this view, I con-
clude by endorsing intersectionality as a research paradigm that is particu-
larly fitting to, and able to accommodate, a critical relational conception of
social justice in mental health.
Frameworks for Understanding Inequities in Mental Health
From a review of the literature, it quickly becomes apparent that the vari-
ous theoretical frameworks for conceptualizing inequities in mental health
lead to differences – some subtle, others less so – that carry important im-
plications for framing research problems and methods and for understand-
ing the causes and outcomes of, and interventions for, inequity in mental
health. A dominant approach to examining inequities in mental health uti-
lizes a social determinants framework. This perspective emerges primarily
from the field of population and public health, and links social factors as
defined by socio-economic position, race or ethnicity, gender, and so on,
to differences in health outcomes between and within different populations
(Raphael, 2006). Within the burgeoning literature on the social determi-
nants, the predominant moral concerns are the inequitable distribution of
resources, such as income, housing, and access to health services, and the
unfairness in the social patterning of health outcomes according to such
differences as gender, race, class, and disability (Graham, 2004).
Frictions exist within this social determinants approach, however
(Graham, 2004; Raphael, 2006). Both Graham (2004) and Raphael (2006)
criticize social determinants frameworks for inadequately theorizing and
responding to the structural determinants that drive inequities in mental
health. Moreover, as a growing cadre of critical mental health scholars
contend, “although the context and specific social and structural determi-
nants for health can overlap with mental health, inequities in mental health
also operate distinctly and are overlaid with the additional stigma and
discrimination that often accompanies a mental illness diagnosis” (Ingram

et al., 2013, p. 6). For example, unlike for most other physical illnesses, treat-
ment for mental illness sees people with psychiatric diagnoses routinely
stripped of their rights (for example, involuntary hospitalization) on the
basis of mental health laws.
Reflecting the perspectives of people with lived experiences of mental
health diagnoses, Mad and psychiatric survivor movements argue that san-
ism and psychiatrization are key axes for understanding the social justice
claims arising from inequities in mental health. Sanism denotes the struc-
tural forms of discrimination produced through hegemonic assumptions
about rationality, normality, and madness that affect people with a men-
tal health diagnosis (Diamond, 2013; Perlin, 2003). Psychiatrization is a
structural form of oppression and inequity that, along with other forms
of oppression, systematically pathologizes, stigmatizes, and discriminates
against people diagnosed with mental illness (Liegghio, 2013).
In keeping with a characterization of social justice in terms of oppres-
sion and domination, another burgeoning approach to studying mental
health inequities emerges from intersectional and post-colonial frame-
works. Building on the foundational work done by Black and Indigenous
feminists, intersectional scholars foreground understandings of mental
health in its multiple and simultaneous intersections with social inequi-
ties, including racism, classism, and genderism (Collins, 2004; Hankivsky,
2011; hooks, 1989). Taking an explicit focus on colonialism2 and ongo-
ing manifestations of neocolonialism, post-colonial feminist perspectives
draw attention to unequal relations of power that are the legacy of the
colonial past and the neocolonial present, and other forms of unequal re-
lations embedded within mental health policy, programming, and practice
(Anderson, 2004; Browne, Smye, & Varcoe, 2005).
As the preceding examination of contemporary approaches illustrates,
there is little doubt that the concept of social justice is central to current
scholarship and policy development. Nonetheless, rather than providing
substantive direction for research, policy, and practice, current conceptu-
alizations of social justice tend to be fragmented and incoherent (Daniels,
2006; Peter, 2001).
Social Justice at the Crossroads: The Intersections

of Ethical Theory and Mental Health Inequities
To date, little interdisciplinary dialogue has occurred regarding the inter-

face between ethical theories and the theorizing of mental health and social
64 Viviane Josewski
inequities. While the paradigm shift from a predominantly biomedical un-

derstanding towards a broader social understanding of health and illness
has been instrumental in establishing a growing interdisciplinarity between
health sciences and social sciences, such critical interdisciplinary exchange
has rarely been extended to questions of applied moral philosophy (Ruger,
2010). Meanwhile, theories of social justice within the literature on mor-
al and political philosophy have historically been silent on the topic of
health (Peter, 2001). Exploration of the merits of different ethical theories
and approaches to social justice in relation to the multiple frameworks for
understanding, studying, and addressing mental health inequities is thus
an important starting point for the discussion of equity in mental health.
Turning to the literature on moral and political philosophy, I begin by re-
viewing some traditional philosophies of social justice and their implica-
tions for conceptualizing inequities in mental health, their root causes, and
their remedies. I then offer an alternative view of social justice that pro-
motes a relational theorizing of social justice claims to encompass matters
of recognition and participation, and inequities in mental health.
The (Re)Distributive Paradigm, Social Justice, and Mental Health
Historical and contemporary theories of social justice have often revolved

around the (re)distributive justice paradigm (Beauchamp & Childress,
2001). At the core of this paradigm is a concern with the “morally prop-
er distribution of social benefits and burdens among society’s members”
(Young, 2011, p. 16). In determining what constitutes a fair distribution,
however, social justice discourses within the (re)distributive paradigm
draw on different ethical theories, including utilitarian, libertarian, and
egalitarian theories (Beauchamp & Childress, 2001), each proposing dif-
ferent criteria, applications, and justifications for conceiving social justice
in mental health.
u t i l i ta r i a n a p p r o a c h e s
Interested only with maximizing the common good, utilitarian judgments
about social justice place a distinct premium on social utility to the exclu-
sion of any concern about the distribution of benefits and burdens – apart
from consequences for the aggregate welfare (Beauchamp & Childress,
2001). Nevertheless, utilitarian thought remains deeply entrenched in public
policy (Venkatapuram & Marmot, 2009) and, in particular, mental health
policy (Ibell, 2004). For example, as Wodak (2007) highlights, utilitarian
arguments bear strongly on current discussions about harm-reduction
approaches to substance use, showing little or no ethical concern for the

injustices and structural inequities that make up the social context of
substance-use and harm-reduction practices (Pauly, 2008). Instead, cur-
rent political debates about the harms and the costs of harm reduction
tend to be dominated by individualistic decontextualized understandings
of addictions and by a conception of social justice that is concerned only
with the harms of drug use pertaining to the aggregate welfare of society.
Drawing attention to the increased surveillance of individuals accessing
methadone maintenance treatment, as well as to the ongoing stigma and
discrimination they face, Smye et al. (2011), for example, argue for more
nuanced inquiries into the complex intersections of harm-reduction prac-
tices with mental illness, stigma, and other forms of discrimination and
social exclusion. These are ethical issues that a purely utilitarian-informed
ethics can neither capture nor problematize.
l i b e r ta r i a n r i g h t s - b a s e d a p p r o a c h e s
As libertarianism “endorse[s] individual rights, individual freedom, and
the liberal idea that people ought to be free to determine their conduct
and lives as they see fit, so long as they do not violate others’ rights,” it is
often referred to as a strand of liberalism (Palmer, 2009, p. 123). In keep-
ing with this view, libertarian theories of social justice emphasize a rights-
based approach to social and economic liberty (Beauchamp & Childress,
2001). Similar to human rights–based approaches, which are increasingly
evoked by health inequities scholars to portray inequities in health as hu-
man rights violations (see for example Ibell, 2004, and Tarantola, 2007),
a libertarian view focuses on rights as the relevant unit of social justice,
which are understood to be equally applicable to “every human being, re-
gardless of gender, color, religion, language, family, or other accidental
feature” (Palmer, 2009, p. 18).
However, there are a number of distinguishing features of libertarianism,
which include the moral superiority that it places on individual property
and negative rights, in particular the right to non-interference, and on the
rule of law rather than the political authority of the state (that is, the idea
of the minimal state) (Freeman, 2001). A libertarian discourse is thus com-
mensurate with the tenets of neoliberal ideology (for example, individual-
ism, free market) and its contemporary policy manifestations (for example,
dismantling of the welfare state, privatization, deregulation) (Larner, 2000),
wherein positive obligations of governments are almost never considered
reliable prima facie and thus tend to become indirectly subject to legal rath-
er than moral interpretations of obligations (Minkler, 2008). For example,
66 Viviane Josewski
as Macfarlane (2013) argues, in Canada government responses to access

cases raised through the Canadian Charter of Rights and Freedoms have
been truncated to delegating responsibility to the judicial system, especially
in controversial cases, such as access to abortion or supervised injection
facilities. This is problematic because courts too are generally reluctant to
enforce positive obligations (Macfarlane, 2013).
Similarly, it is easy to say that freedom from coercive and often abusive
treatment practices, such as forced sedation, seclusion, and restraint, has
intrinsic value and that it is a prerequisite for redressing institutional re-
traumatization of people with mental health and substance use issues.
However, without attending to the structural and social conditions for
freedom to exercise autonomy in matters that affect peoples’ lives, this eth-
ics promotes an “impoverished conception” of social justice (Wildeman,
2012, p. 267). Building upon Susan Sherwin’s (2012) and Jennifer Nedel-
sky’s (2012) concepts of relational autonomy and judgment respectively,
Wildeman (2012), for example, unpacks the liberal ideal of autonomy and
the associated ideal of rationalist liberal individualism, which underpin
the pathologizing, explanatory model of psychiatric assessments of de-
cision-making capacity as a basis for involuntary psychiatric treatment.
Psychiatrized people enter a double bind when facing a “forced choice
between negative freedom and psychiatric paternalism” (Wildeman, 2012,
p. 280). Thus, “to truly support the autonomy of oppressed patients and
research subjects, what is often required is serious change in the social
circumstances in which the choice is being made” (Sherwin, 2012, p. 18).
e g a l i ta r i a n t h e o r i e s
Egalitarian theories of distributive justice acknowledge that people’s life
opportunities are not utterly under their control and that it is therefore
up to the state to equalize differences in advantage and disadvantage that
lead to unfair distributions of opportunities and outcomes (Beauchamp &
Childress, 2001). For example, according to Rawls’s theory of justice as
fairness (1971) – regarded by many as a milestone in twentieth-century po-
litical philosophy – social inequalities are “inevitable in the basic structure
of any society” (p. 7) and arise from both the “social” and the “natural lot-
tery” of life (p. 72). Owing to this presumably random distribution of pri-
mary social and natural goods, for Rawls, social justice resides in the ways
in which social institutions “distribute [or, more precisely, redistribute] fun-
damental rights and duties and determine the division of advantages from
social cooperation” (Rawls, 1971, p. 7).
Within this conception, issues of inequalities in health are firmly placed

within the category of natural goods – that is, outside the disposition of
society and the realm of social responsibility. Rawls’s theory thus does not
easily translate into a right to health, although this “does not necessarily
apply to health care, which is a social benefit that resides considerably
more in our power to distribute equitably through external and potentially
enforced or enforceable means” (Van Niekerk, 2005, p. 85). Moreover, in
keeping with the assumption that most adults are healthy, able bodied,
and autonomous, Rawls’s development of social justice as fairness cen-
tres on the individual rights and duties of independent or autonomous
moral agents. As feminists and care ethicists have pointed out, such moral-
ity is problematic because it implicitly construes dependency as a differ-
ence measured against a standard of normal, as in “normal mental health”
or a “normal healthy body,” and fails to take into account the realities
of human interdependence and “the kinds of needs [and responsibilities]
that arise from these experiences” (Hankivsky, 2004, p. 42; Sherwin, 2002,
2012). According to Morris (2001) and others, this is particularly relevant
to social justice issues experienced by people with physical, mental, and/or
cognitive impairments because it systematically effaces their voices and ex-
periences of vulnerability as recipients of care (Liegghio, 2013). To address
this, Morris (2001) argues for a stance that acknowledges that “indepen-
dence is not about doing everything for yourself but about having control
over how help is provided” (p. 8).
In a similar but somewhat different critique, Amartya Sen (1999) argues
that what really matters is the substantial freedoms of individuals to con-
vert goods and services (means) into capabilities to live well (ends). Ac-
cording to Sen’s proposed capability approach, such variations in people’s
substantial freedoms arise from personal and socio-environmental factors;
some of these differences will be individual, while others will be structural,
related to gender, class, race, caste, and so on. Conceptually, Sen’s frame-
work has been lauded for helping to put human agency, coupled with
a concern for context, at the centre of the stage of social justice claims.
Yet, as critics of Sen have pointed out, his capability approach lacks sub-
stantive direction for determining the how and the why of social justice
claims (Deneulin & McGregor, 2010; Robeyns, 2003). This is not to say
that capabilities-informed approaches have not been useful to some criti-
cal scholars in interrogating how structural inequities in mental health op-
erate (see for example the work of Kim Hopper, 2012), but their criticality
and analytical leverage, as it pertains to advancing the understanding of
68 Viviane Josewski
social justice in mental health, will depend on the particular features of

theorizing applied.
Read together with the preceding evaluation of other distributive jus-
tice theories, such a critique points to a more general limitation: “the
distributive paradigm implicitly assumes that social judgments are about
what individual persons have, how much they have, and how the amount
compares with what other persons have” (Young, 2011, p. 25). As a result,
Young (2011) argues, (re)distributive theories view individuals as passively
positioned consumers of services and interventions, and preclude an un-
derstanding of the social, political, and ethical meaning of human dif-
ferences that arise from gender, class, race, ethnicity, sexuality, ability, and
geographic location. This is problematic because, as illustrated above, to
morally assess the complex inequalities experienced by people with mental
health concerns, social justice theories must be able to address the inter-
secting issues of voice, institutionalized patterns of cultural valuing, and
unequal power relations that give rise to people’s profound experiences of
discrimination, suffering, and oppression.
For this reason (re)distributive justice claims aimed at advancing eq-
uity in mental health are at best weak and at worst precarious because
of the inherent risk they present for reifying descriptions of positionality
as attributes of individuals, rather than as socially constructed markers
of unequal relations of power (Young, 2011). Take, as an example, the
case of increased rates of poverty among people with both mental and
physical impairments. Rather than studying the disabling and discrimi-
natory environments that deny people labelled with disability access to
adequate educational and employment opportunities, the (re)distributive
social justice approach, because of its insensitivity to questions about the
structural forces that shape the organizational and distributional prac-
tices of societies, tends to conceive of mental illness itself as the impeding
factor in people’s ability to become educated or economically productive
members of society. As Brock (2000) and others have claimed, such im-
poverished accounts of social justice and equity in the health sector have
led to a tendency to “focus on healthcare to the exclusion of other factors
that have greater impact on health and health inequalities” (p. 286). Thus,
if we can agree that “we are concerned not just with health care but also
with health outcomes, and if there are serious social inequalities in health
outcomes that cannot be traced back to differential access to health care,
then conceptions of health equity have to go beyond health care” (Peter,
2001, p. 160).
Towards a Critical Relational Understanding

of Social Justice in Mental Health
In response to the shortfalls in theorizing social justice within the redistribu-

tive justice paradigm, a number of alternative ethical frameworks have been
proposed. One such framework centres on an ethics of care, which origi-
nally emerged from a recognition of women’s experiences of caring respon-
sibilities, and of interdependent relationships as being significant spheres
of moral practices in the reality of most women’s lives (Hankivsky, 2004;
Llewellyn & Downie, 2012; Sherwin, 2002, 2012). In this context some fem-
inists and care ethicists have argued for the moral superiority of particular
types of relationships, including mother-child and friendship, demanding
their adoption as exclusive models for moral reasoning. However, more
recent approaches converge on the need to expand this focus and find a
meaningful relationship between the two distinct ethics of justice and care
(Hankivsky, 2004; Sherwin, 2002).
Feminist relational theorists begin from this insight. Informed by the post-
modern recognition of group differences as fluid, multiple determined, and
relationally mediated, relational approaches to social justice emphasize the
heterogeneity of experiences (Gewirtz, 1998). As Koggel (2012) elucidates, a
distinguishing feature of relational accounts of social justice is thus that
“liberal theory’s cherished notions of autonomy, justice, or equality are not
relinquished, but, instead, they are reinterpreted in and through the network
of complex and ever-changing relationships in which each of us is situated”
(p. 71). In so doing, Llewellyn and Downie (2012) explain, “their starting
point facilitates a revision of dependence, independence, and interdepen-
dence and an approach with which to evaluate and consider these relation-
ships and their implications” (p. 7).
social justice as a politics of recognition

In keeping with this relational understanding, Iris Marion Young (2011)
proposes a politics of difference as an alternative, politicized foundation
for social justice theorizing. Such politics attend to the “importance of
social group differences in structuring social relations and oppression” and
help to shed light on economic, cultural, and political forms of injustices
that arise when certain groups of people are systematically denied recog-
nition and voice to participate as full citizens (p. 27). Drawing on criti-
cal social movements and, in particular, on the Mad and disabled people’s
movements, this moral focus on recognition makes Young’s framework
70 Viviane Josewski
particularly relevant to social justice issues that compromise the lives and
life opportunities of people with psychiatric (and non-psychiatric) dis-
abilities. Echoing Young’s call for recognition as a matter of social justice,
Mad activism, for example, explicitly embraces “madness” as a legitimate
state of being (LeFrançois, Menzies, & Reaume, 2013). As Liegghio (2013)
explains, non-recognition of “psychiatrized people as legitimate knowers
with legitimate knowledge and ways of being” in the form of epistemic
violence constitutes a major form of injustice for people labelled with men-
tal illness (p. 129). Recognition of “difference as legitimate” is therefore
key to effecting a shift in the institutionalized patterns of cultural valuing
that continue to pathologize, silence, and dehumanize people with various
experiences of mental distress (Liegghio, 2013, p. 127), and ultimately to
enabling “the forming of a positive identity” (Wildeman, 2012, p. 270).
In a similar vein but with a different voice, Indigenous scholars have reit-
erated the need for recognition as a central dimension of collective and in-
dividual healing and recovery from trauma, mental health, and addictions
problems (Clark, 2012). The historical tendency of the mental health care
system in Canada has been to exclude the perspectives of First Nations,
Métis, and Inuit peoples from mental health policy and programming
(Josewski, 2012; Smye, 2004). Thus, though diverse, Indigenous scholar-
ship collectively calls for social justice to be addressed through recognition
and implementation of Indigenous self-determination, which as a goal of
social justice “is expressed through and across a wide range of psychologi-
cal, social, cultural and economic terrains” (Smith, 1999, p. 116).
However, critics of Young’s framework have argued that by privileging
difference Young’s approach fails to establish a normative grounding for
determining social justice claims and adequately addressing the looming
essentialism of identity politics (Fraser & Honneth, 2003b; Kirkham &
Browne, 2006). Moreover, Fraser (2003), in particular, has challenged the
subordinate position of (re)distributive justice in Young’s examination of
social justice, asserting that issues of (re)distribution and recognition are
equally imperative to an analysis of social justice.
In response to such critiques, postmodern feminists have argued that,
in keeping with an understanding of the contingency of knowledge and
truth, the emphasis of a feminist ethics is not so much on fixing in place the
“form or content of responsibility” but rather on enabling “the conditions
of its possibility” (Shildrick, 2003, p. 188). As Shildrick (2003) puts it, this
means that “the question of responsibility cannot be settled in advance,
and it cannot – without loss – be assigned to any external and normative
order” (p. 189). In that reading, the task of a responsible ethics must then
be that “of exploring the possibilities of new connections that continually

evolve across the terrain of unassimilable differences … [and] to negotiate
the encounter between differences that have no fixed place and no foresee-
able end” (Shildrick, 2003, pp. 190–1).
In this vein, Young recognizes group identities and differences as mul-
tiple, contingent, unstable, and contradictory, and uses these as starting
points for outlining a relational ontology of groups as fluid dynamics em-
bedded within an ever-changing network. Analogously, social group differ-
ences, such as disparities in mental health, are, according to Young (2001),
better understood as expressions of “structural inequality [that is] as a set
of reproduced social processes that reinforce one another to enable or con-
strain individual actions in many ways” (p. 2). Thus conceived, oppression
does not neatly fit the traditional dichotomous model of power, where an
oppressed group needs to have a correlate oppressing group; rather, as
Young suggests, oppression, like power in the Foucauldian sense, cannot
be localized but is diffused, “employed and exercised through a net-like
organization” (Foucault, 2000/1976, p. 98). The contribution of a politics
of difference as a framework for social justice is to make visible and chal-
lenge those relations by allowing for group difference, dissent, and antago-
nisms in decision-making processes. By so doing, Young’s understanding
of ethics allows for an open-ended, evolving, interactional, and negotiat-
ed process of making meaning of difference and its social, political, and
economic implications. Moreover, Young’s model highlights the obliga-
tions, in the form of collective action, that diverse agents have because of
their participation in structural social processes with unjust outcomes, and
thereby offers new possibilities for discussing the interconnections of moral
responsibility that diverge from standard models of moral and legal re-
sponsibility (that is, the liability model) (Young, 2006).
Ultimately, Young’s alleged shortcoming of neglecting to specify uni-
versal normative notions for social justice may thus be more accurately de-
scribed as an illustrative approach to “tak[ing] contingency seriously and
accept[ing] the impossibility of fully determining the nature and parame-
ters of any event in advance” (Shildrick, 2003, p. 192). Moreover, in taking
up and further developing a relational ontology of social groups, Young’s
model produces an affirmative feminist politics that approaches boundar
ies as provisional and strategic, at the same time contesting the essential
ism of identity politics and the assimilationist Western ideal of liberation
that continuously seeks to transcend group differences. Outside the norma
tive parameters of mainstream philosophy, Young’s politics of difference
as a framework for social justice thus emerges as radical alternative to the
72 Viviane Josewski
individualistic foundationalism of a (re)distributive justice paradigm. And

yet, it is precisely on this point that Young’s model can be challenged.
( r e ) d i s t r i b u t i o n , r e c o g n i t i o n , a n d pa r i t y o f pa r t i c i pat i o n
Returning to Fraser’s insight into the subordinate place of redistributive
justice in Young’s model, the fuller argument is that “justice today requires
both redistribution and recognition” (Fraser, 2003, p. 9). While conceding
with Young (2011) that “it is a mistake to reduce social justice to distribu-
tion” (p. 15), Fraser critiques social justice frameworks that conflate issues of
maldistribution and misrecognition, epiphenomenalizing either class struc-
ture or status order to one another, and rendering it impossible to explore
the intersections between them. This is problematic because insensitivity
to the mutual imbrications of institutionalized relations of socio-cultural
status subordination and economic ordering “can give rise to unintended
effects” that risk re-inscribing social and economic inequities (Fraser,
2003, p. 64).
Academic and activist accounts (LeFrançois et al., 2013) of the roots of
inequities faced by people with diagnoses of mental illness and/or disabili-
ties in both misrecognition and misdistribution help illustrate this point.
For this exercise it is useful to begin by separating out the analytically dis-
tinct types of impediments that psychiatric and other disabilities impose
on participatory parity. One approach is to “disentangle the limitations
associated with disabilities that are medical problems from those that are
social problems, as well as from those disabilities that should not be con-
sidered problems at all but instead are manifestations of the inevitable un-
evenness of opportunities available at various stages of life” (Silvers, 2001,
p. 58). Central to this is the conceptual differentiation of impairment from
disability, as premised by the social model of disability (Morris, 2001).
According to Morris (2001), experiences of impairment refer to “the
functional limitations of our bodies and minds,” while the term disability
is better understood as the disabling social barriers of discrimination,
social stigma and prejudice that are reinforced and maintained through
institutional discourses and practices (p. 2). In rethinking these concepts
through Fraser’s lens of social justice, the concept of impairment invokes
social justice issues associated with maldistribution, while that of disability
constitutes a matter of misrecognition.
To elaborate, a capitalist society oriented towards “optimal economic
results” prioritizes efficiency (Hankivsky, 2004). People with functional
impairments of their bodies and/or minds have been largely excluded or
marginalized from the wage economy (Oliver, 1990), contributing to a sys-

tematic economic (and social) “devaluing of the ‘unproductive’ Mad bodies”
(Tam, 2013, p. 285). As a result, people with psychiatric and non-psychiat-
ric disabilities – especially chronic conditions – face significant barriers to
employment (Morrow, Wasik, Cohen, & Perry, 2009).
These structural inequities of economic arrangements function to sys-
tematically deny people with physical, mental, and/or intellectual impair-
ments the means and resources they need to participate in public life as full
citizens. As Morrow et al. (2009) discuss, a disproportionate number of
people with disabilities, including psychiatric disabilities, are unemployed
or underemployed, live in poverty, and are dependent on ongoing income
and social supports, often in the form of welfare. This makes people with
disabilities “particularly vulnerable to the caprices of welfare state restruc-
turing” and suggests that any effective solutions for redressing these ineq-
uities must improve “access to a wide range of economic and employment
supports” (Morrow et al., 2009, p. 669).
Yet, despite international research evidence that establishes the condu-
cive role of income supports and employment participation by people with
psychiatric disabilities for mental health recovery, within Canada many op-
portunities to enact these strategies are missed. Overall responses by gov-
ernments at both federal and provincial levels remain inadequate, and the
relations to questions of difference as presented by diverse critical voices
of and on behalf of psychiatrized people and people with disabilities re-
main undertheorized (Morrow et al., 2009; Tam, 2013).
While substantive literature has challenged the conventional binaries
of sanity-insanity (ability-disability) and criticized their discursive repro-
duction and oppressive consequences for people with mental illness and/
or disabilities (LeFrançois et al., 2013; Morris, 2001; Perlin, 2000; Silvers,
2001), the ethical framing of implications for mental health care has been
predominantly centred on social justice claims for recognition, reflecting a
discursive “decoupling of claims for recognition from claims for redistri-
bution” (Fraser & Honneth, 2003a). For example, as Morrow et al. (2009)
note, although the implications of welfare-state restructuring for health
and well-being have been examined within the literature, “almost no docu-
mentation of the implications for mental health care exists in the Canadian
context” (p. 656). As well, to date little attention has been paid to the ways
in which different employment models intersect with the particularities of
different impairments and diverse social locations that shape the lives of
people with psychiatric disabilities (Morrow et al., 2009).
74 Viviane Josewski
This signals a crucial gap in understanding how the political economy

of madness produces relational differences between people across socio-
political and cultural contexts, with varying effects (Tam, 2013). Arguably,
this gap also results in a structural barrier to effective support for the social
justice goals of progressive recovery models and the practice of citizenship
for people with psychiatric disabilities (Morrow et al., 2009). In this vein,
Morrow et al. (2009) argue that to remove barriers to meaningful occupa-
tion, employment, and income security for people living with psychiatric
disabilities requires “a move beyond the divide between employment and
welfare, common to both neo-liberal and Keynesian/social democratic wel-
fare regimes,” as well as a recognition of psychiatrized people as “deserv-
ing” (p. 670). Their differing needs would not then be pathologized but be
seen as ethical entitlements for equitable involvement in decision-making
in private and public matters that concern their lives.
In much the same way, Fraser (2003) contends that any approach to
social justice “must [therefore] allow for the full complexity of these rela-
tions” (p. 48); that is, it must account for the differentiation and “mutual
irreducibility of maldistribution and misrecognition, as well as their prac-
tical entwinement with each other” (Fraser, 2003). To this end, she asserts,
it is imperative to conceive of maldistribution and misrecognition as two
analytically distinct yet interrelated dimensions of social justice.
To integrate these dimensions into a single normative framework, Fraser
(2003) adds the notion of parity of participation as the normative nexus
of her conception of social justice. According to this norm, “justice re-
quires social arrangements that permit all (adult) members of society to
interact with one another as peers” (p. 36). Two conditions are prerequisite
for participatory parity: “First, the distribution of material resources must
be such as to ensure participants’ independence and ‘voice.’ Second, the
institutionalized cultural patterns of interpretation and evaluation express
equal respect for all participants and ensure equal opportunity for achiev-
ing social esteem” (p. 5).
As taken up by a growing cadre of critical health scholars, such an in-
tegrated normative framework offers analytic leverage for analysing and
reframing social inequalities in health and mental health by refocusing us
to consider the intersecting impact of historically and socially mediated
patterns of cultural valuing, as well as economic and political dimensions
of distribution and representation, respectively, on health and human
suffering (Kirkham & Browne, 2006; Morrow et al., 2009; Varcoe et al.,
2011).
Operationalizing a Critical Relational Interpretation of Social

Justice in Mental Health Policy, Practice, and Research
As different conceptions of social justice foreground certain dimensions

of inequities and champion different, and at times conflicting, solutions
for how to remedy these, by making explicit the particular conception of
social justice employed, one not only “enhance[s] understanding of poten-
tial theoretical approaches to underpin action for addressing inequities”
(Sherwin, 1999, as cited in Pauly, 2008, p. 7), but also maintains ethical
integrity at each level of policy, practice, and research.
For instance, if the objectives of social justice in mental health are in-
terpreted through the normative lens of parity of participation for people
living with mental health problems and/or diagnoses, the policy initiatives
and interventions would have to address the multiple systems of oppres-
sions that shape the lives and life opportunities of those people – ranging
from concerns for inclusion in decision-making processes, to initiatives to
decrease stigma, to the creation of a wide array of services, such as sup-
portive and independent housing, educational opportunities, mechanisms
for meaningful occupation, and income security. Thus, if a critical relation-
al understanding of social justice were valued, then mental health service
delivery and policy would be organized in ways that reflected a relational
understanding of social inequities in mental health, which situates the lived
experience of people with mental health issues within the context of multi-
ple intersecting systems of oppression. Policymakers and service providers
alike would need to acknowledge the ways in which they themselves, their
actions, and institutions are implicated in the reproduction of structural
violence3 – through the culture of the mental health care system that rein-
forces negative stereotypical conceptualizations of the Other through the
practice of psychiatric labelling, as one example – and the moral obliga-
tions that spring from this.
The explication of these moral obligations requires taking a number of
proactive steps to realize a philosophy of care that extends beyond the
boundaries of biomedicine and custodial models to relational and con-
textualized models of care that are grounded in the diverse perspectives
and experiences of people with mental health issues and that are concerned
with the economic, cultural, spiritual, and political dimensions of mental
well-being. While the specific articulation of these steps depends on the par-
ticular community context, the creation of an empowerment council – an
independent organization run by current or former clients of mental health
76 Viviane Josewski
and addictions services – and the introduction of the Bill of Client Rights
at the Canadian Centre for Addiction and Mental Health (CAMH), for ex-
ample, may offer some insight into the ways in which an organization can
begin to change the organizational culture of mental health care systems
by building on the philosophical foundations of the recovery model of care
and the social justice principles of parity of participation, of recognition,
and of redistribution.
In the context of research, an explicit commitment to social justice and
praxis that derives from such a critical relational interpretation of social
justice directs us to turn the reflexive gaze inward and critically analyse
whether our theoretical positioning and resulting methodological frame-
works for studying inequities (such as those associated with mental health)
are endorsed by our espoused social justice orientation and vice versa. In
this regard, Kirkham and Browne (2006) point out that certain theoretical
perspectives tend to promote different types of readings of social justice.
Sharing a deep-rooted propensity to perceive reality as individualistic
and static, empiricism and its attendant positivist or post-positivist meth-
odologies and epistemologies, for example, are apt to prop up distributive
aspects of social injustice, which, as an objective condition, can be ac-
curately measured and diagnosed across diverse populations. One of the
most contentious effects of this tendency is towards “upwards conflation”
(Archer, 1995), which, in the field of theorizing mental health inequities,
denotes the focus of the analytic gaze on inequalities in social position
and an insufficient attention to the processes that shape this distribution
(Graham, 2004). Such truncated models of the origins of health inequi-
ties, often masked by the language of the social determinants of health,
not only prop up competing biomedical and behavioural explanations for
inequalities in health, “thereby perpetuating myths and stereotypes about
individuals with mental illness” (Rossiter & Morrow, 2011, p. 323), but also
further the wider depoliticization of current policy-making approaches
and frameworks. Within this depoliticized environment, government is de-
marcated from the public, and the role of policy is confined to determining
the best way to distribute goods and allocate sparse resources to competing
interest groups (Varcoe et al., 2011).
Concerned with praxis-based notions of social change and explicitly ori-
ented to analysing power differences between groups, inequities analyses
from the paradigmatic stance of critical theory, however, appear to pro-
vide a better articulation and more complex appreciation of social justice
along the lines of redistribution, recognition, and parity of participation.
As Denzin and Lincoln (2011) sum up, diverse, contemporary critical
theoretical approaches share a concern with moral discourse and have “be-
come sites for critical conversations about democracy, race, gender, class,
nation-states, globalization, freedom, and community” (p. 3).
Broadly aligned with a relational understanding of social justice, criti-
cal theoretical perspectives might thus offer useful directions to research-
ers of health inequities. Having begun such theoretical work in the area
of nursing, Kirkham and Browne (2006), for example, bring forward an
argument for the value of post-colonial feminism as a critical theory dis-
tinctly concerned “with disrupting the history of ‘race-thinking’ and the
social-structural inequities that have ensued as a result of racialized rela-
tions” (p. 335). This concern, they argue, makes post-colonial feminism
useful for operationalizing a critical relational interpretation of social jus-
tice grounded in the notions of redistribution, recognition, and parity of
participation. Undertaking a similar analysis in the field of health policy,
Varcoe et al. (2011) argue for the relevance of intersectionality as a frame-
work for conceptualizing both distributive and social questions of justice
and equity and for addressing social inequities in health.
According to Browne, Varcoe, and Fridkin (2011), “intersectional anal-
yses are inherent to research that draws on post-colonial feminist theo-
ries” (p. 297). Recently intersectionality has been reframed, however, as
an alternative research paradigm (Hancock, 2007; Hankivsky, De Leeuw,
Lee, Vissandjee, & Khanlou, 2011) – one that is particularly pertinent to
Fraser’s call for a non-conflationary theorizing of social justice.
Intersectionality, Social Justice, and Mental Health Inequities
Analytically oriented to explicating the relationality of different systems

of domination, processes of differentiation, and social categories of differ-
ence and identities (Hankivsky, Grace, Hunting, & Ferlatte, 2012, p. 16),
intersectional analyses draw attention to the ways in which social inequities
in mental health are created through the interlocking effects of institution-
alized patterns of culture valuing and/or economic structure, wherein some
members of society are denied participation as full partners in life. In so
doing, intersectionality contributes to the understanding that the redress-
ing of inequities in mental health requires multi-factoral and multi-level
strategies along the lines of (re)distribution, recognition, and parity of
participation.
For example, by drawing an analytical distinction between identities
of individuals or social groups, and categories of difference (Dhamoon
& Hankivsky, 2011), intersectional models offer researchers a useful lens
78 Viviane Josewski
through which to analyse the intersecting dynamics that exist between

aspects of social difference (for example, mental illness, gender) and
identity (for example, being a woman with a psychiatric history) within
the broader context of structural oppression (for example, sanism, gen-
derism, and the dominance of biopsychiatry). Foregrounding tradition-
ally marginalized voices, such situated analyses can be directly applied
to critiques of power (for example, Western Eurocentric perspectives as
universal centre) and generate knowledge that adds important texturing
to our understanding of the imbrications of subjective, structural, and
social levels of differentiation of cultural reproductions of inequities in
mental health.
Moreover, as Hancock (2007) notes, “recognition of interactions in mul-
tiple domains may reveal additional options for non-traditional coalition
building among groups” (p. 74), which begs us to consider novel ways of
operationalizing abstract notions of recognition and participation. A fur-
ther distinguishing feature of intersectionality is that although intersection-
al theory emerges from critical theory and deconstructionist tradition, as a
normative and empirical paradigm, “it does not remain there” (Hancock,
2007, p. 74).
Ontologically speaking, intersectionality is positioned “between reduc-
tionist research that blindly seeks only the generalizable, and particular-
ized research so specialized that it cannot contribute to theory” (Hancock,
2007, p. 74). It thus supports a moderate realism that underpins Fraser’s
three-dimensional theory of social justice as critical and relational and
that derives from the subjective notion of “lived experience” as a legiti-
mate form of knowing, at the same time as it acknowledges the validity of
some realist epistemological positions. According to Thorne and Varcoe
(1998), such an epistemological position “balances absolute claims in the
postmodern context and a respect for individual subjective reality that bal-
ances ideological primacy within critical social theory” (p. 491). In other
words, within the larger project of generating knowledge for promoting
equity and social justice, we can neither ignore the insights that can be
drawn from inquiry into the construction of subjective truths (intersubjec-
tive condition) nor disregard the potential for quantitative or empirical
science (objective condition) (Fraser & Honneth, 2003b).
For example, while the insights from epidemiological research regarding
the conducive role of income supports and employment participation by
people with psychiatric disabilities for mental health recovery are general-
izable across certain contexts and populations, we require specific knowl-
edge that has been contextualized in local frames of meaning in order to
understand issues of access to these types of services; the political, eco-

nomic, and social conditions shaping their distribution; and their use and
effectiveness for promoting mental health and well-being.
Operating in this way, intersectional researchers can take on a role simi-
lar to that referred to by Denzin and Lincoln (2011) as the “researcher-as-
bricoleur” (p. 4). Taken up by Kincheloe, McLaren, and Steinberg (2011),
the notion of bricolage refers to the process of engaging in a “dialectic of
disciplinarity” by bringing together diverse schools of thought and an ap-
preciation of the research context and nature of the social problem under
investigation (p. 170). On this account, tensions between different schools
of thought are neither conceptually reduced to methodological issues nor
bound to lead to what has been traditionally labelled a “paradigm war.”
Instead, in search for new, action-oriented knowledge for creating a more
just and equitable society, the bricoleur views “incongruities between such
cultural modes of inquiry … [as] quite valuable, for within the tensions
of difference rest insights” (Kincheloe et al., 2011, p. 169). Researchers
thus minded must eclectically choose and even construct their methods
and methodologies by employing “a deep interdisciplinarity” (Kincheloe
et al., 2011). Drawing on Homi Bhabha’s notion of the “Third Space,” re-
search done from within such a discursive space “opens up the possibility
of articulating different, even incommensurable cultural practices and pri-
orities” (Bhabha as cited in Rutherford, 1990, p. 211) by directing attention
to the ways in which different epistemologies and ontologies can intersect
productively when normative judgment or interpretation is guided by a
critical, relational reading of social justice along the lines of redistribution,
recognition, and parity of participation.
Conclusion
Conscious consideration of the theoretical material presented here is a

foundation for advancing a critical scholarship on mental health inequities
and a critical dialogue about the meaning of the concept of social justice
and the ways in which it can or should be applied in research, policy, and
practice. For example, in raising a set of morally significant questions re-
garding the what, how, and who of social justice, Fraser’s three-dimensional
conception of social justice offers a critical interpretative and reflexive lens
that highlights the need for ethical and political responsibility. Such re-
sponsibility starts with – but does not end with – turning the gaze of re-
searchers and policymakers inward to explicitly consider such questions as:
How well do our current research practices, frameworks, and interventions
80 Viviane Josewski
fit with the values of a relational conception of social justice and equity, or
are they at odds with them, given the current socio-political environment?
What kind of knowledge is needed to effectively address the intersecting
political, economic, and cultural spheres of inequities? Which dimensions
and whose social justice claims are under-examined in the analysis, why, and
to what effect? Inherently dialogical, such judgments are aimed at disrupt-
ing the grammar of hegemonic ethical frameworks; they involve weighing
the relative merits of alternative interpretations of the what, the who, and
the how of social justice by bringing into the open the contested nature of
these concepts, and rendering explicit the power disparities in which they
are embedded (Fraser, 2009).
Intersectionality as a burgeoning research paradigm is pertinent to oper-
ationalizing critical relational conceptions of social justice and to mobiliz-
ing ethical response and counter-politics directed at advancing social justice
in mental health. Yet, intersectionality is not a methodological or politi-
cal panacea (May, 2015). Rather, recognizing the irreducibility of multiple
knowledges, and their internal relations to normative reflection, will require
that any outcomes of such dialogue be looked at as provisional, without
expectation of final closure.
NOTES
1 I use the notion of mental health to refer to a wide range of experiences,

including mental illnesses, trauma, substance abuse and addictions, suicide,
and violence.
2 Colonialism here refers to the historical, socio-political, and economic
processes and practices that are constituted by and are constitutive of colonial
systems of oppression and domination (Browne, Smye, & Varcoe, 2005).
3 Structural violence describes the systematic ways in which structural
arrangements exert violence and harm individuals and populations (Farmer,
Nizeye, Stulac, & Keshavjee, 2006).
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3 Global Psychiatrization and Psychic
Colonization: The Coloniality of Global
Mental Health
china mills
Introduction
This chapter takes as its point of departure the multiple and strange en-
tanglements between psychiatry and colonialism. In many different parts
of the world, at different times, psychiatry and colonialism have been en-
tangled and intertwined. The work in this chapter emerges from the uncom-
fortable question of whether psychiatry (and the “psy-” disciplines) can be
both a tool and a form of colonialism. I explore the role that psychiatry
has played in colonialism and that colonialism has played in psychiatry.
While it may be important to retain distinctions between colonization (in its
many forms) and psychiatrization, it may be informative (particularly when
thinking about resistance) to explore the similarities between these projects.
First, I trace the role that psychiatrization has played in some forms of
colonial governance and specifically in its reconfiguration of resistance to
colonialism as individual pathology or madness, foreclosing a structural
analysis of dissent. Second, I explore the ways in which this rewriting of
resistance and distress continues today through global psychiatrization,
which, by telling a single universalizing story about suffering as individual
pathology and about distress as “mental illness,” erases a multitude of al-
ternative ways of understanding distress in diverse contexts.
I explore whether a central tenet that colonialism and psychiatry have
in common is the destruction and erasure of alternative ways of knowing,
being, and doing – what is known differently in different literatures as cog-
nitive injustice (Santos, 2012), cognitive enslavement (Dhareshwar, 2010),
and the colonization of the mind (Nandy, 1983).
Told through the lens of two famous letters of resignation (from differ-
ent continents and different decades), the writing in this chapter hinges on
88 China Mills
two current realities in India – the discrediting and demonization of tradi-

tional forms of healing, and the high numbers of suicides by farmers – to
try and glimpse the psychiatrization at work within colonialism and the
coloniality of (global) psychiatrization.
Colonization and Psychiatrization
Before exploring the entanglements of global psychiatrization and colo-

nialism, we need to unpack and unpick some terms. Colonialism is gener-
ally understood to be the “conquest and control of other people’s land
and goods” (Loomba, 1998/2009, p. 8), constituting a form of cultural ex-
ploitation specifically linked to the expansion of Europe over the last four
hundred years. Colonialism comes in different forms across time and place,
often underscored by distinct yet not unrelated logics of the creation of
dependency through the reform of the “natives,” and a genocidal logic of
erasure of Indigenous peoples and worldviews. It involves the subjection
of colonized peoples, a process constructed as natural, where Indigenous
peoples are cast as “genetically predetermined to inferiority” (Ashcroft,
Griffiths, & Tiffin, 2000, p. 41). Thus, colonialism involves more than the
extraction of goods from colonized lands; it is an encounter embedded
within relations of domination and exploitation; and it exports technolo-
gies and worldviews, restructures economies, and draws them into rela-
tionships of dependency that create markets for European goods (Loomba,
1998/2009). Often domination continues even after formal colonial admin-
istrations have ended, meaning that colonialism survives the “demise of
empires” (Nandy, 1983, p. xi), thus pointing to an important distinction
between colonialism and global coloniality – which continues, sometimes
invisibly, in the current “modern/colonial capitalist/patriarchal world sys-
tem” (Grosfoguel, 2010, p. 73; Grech, 2011). While psychiatry served as a
tool for many colonial administrations, it is perhaps coloniality that is most
relevant to global psychiatrization.
Psychiatry was one of the technologies exported to colonized lands and
is a colonial legacy in many parts of the global South (Fernando, 2010). It
became a key agent of colonialism and a tool of empire by legitimizing
colonial oppression in the name of scientific progress (Ernst, 1997). Thus,
psychiatric asylums constructed as “citadels of European progress” were
an important part of the civilizing mission of colonialism (Ernst, 1997,
p. 172). While psychiatry formed a key tool of the colonial project, the col-
onies were also central to the development of psychiatry, with the discovery
that the natives – previously thought too uncivilized to experience madness
Global Psychiatrization and Psychic Colonization 89
– could also develop mental illness, thus allowing the development of a

universalizing biological language of psychiatry (Jilek, 1995).
This universalization, pathologization, and biologization of distress has
enabled a global psychiatrization, whereby more and more of our lives
come to be seen, globally, as concerns for psychiatry (Mills, 2014a; Rose,
2006). This global psychiatrization is currently being promoted by diverse
and powerful agents, including the World Health Organization (WHO,
2013), and the Movement for Global Mental Health (Patel, Boyce, Collins,
Saxena, & Horton, 2011). (For a detailed discussion of the role played by
these actors in the construction of mental health as a global priority, see
Fernando, 2014, and Mills, 2014a.)
Psychic Colonization
That psychiatrization and colonization are so intricately and historically

entangled suggests a need to retain their conceptual separation in order
to explore their continuing relationship today. However, if psychiatry was,
and is, a key agent of colonialism, then can psychiatry itself be colonizing
or, specifically, a form of continued coloniality? More than material domi-
nation, colonialism is also a system of representation that generates images
of the West as superior. This system extends the reach of colonialism into
people’s heads (Smith, 1999). Thus, by framing the psychological limits
of resistance, by altering cultural priorities, and by inducing colonized
peoples to accept new cognitive categories, the West as a concept changes
from being a geographical location to being a psychological category –
“the West is now everywhere, within the West and outside; in structures
and in minds” (Nandy, 1983, p. xi). Here the more formal colonization of
land makes possible specific forms of psychic life – what we might call the
“psychic life of colonial power” (Butler, 1997; Hook, 2012, p. 18) or “the
psychological contours of colonialism” (Nandy, 1983, p. 2). This form of
psychic life is dehumanizing and objectifying because the colonized are cast
either as instruments of production, even as the colonizer imposes onto
them Western accounts of subject formation, or as non-persons that need
to be erased (Loomba, 1998/2009). In this way it is possible for colonized
peoples to come to understand themselves in foreign terms, meaning that
“colonialism colonises minds in addition to bodies” (Nandy, 1983, p. xi;
Thiong’o, 1981).
Colonization may also circumscribe and shape the contours of resis-
tance to colonialism and psychiatry. Therefore, the move to rethink glob-
al psychiatrization within this chapter does not have to be anti-psychiatry
90 China Mills
– just as resistance to colonialism, according to Nandy (1983), was some-

times more powerful when it was not burdened by a desire to be perfectly
non-Western. Bearing this in mind, this chapter seeks to acknowledge that
Western psychiatry is not monolithic, it comes in various diverse forms
(from the biopsychiatry mainly discussed here to transcultural and criti-
cal psychiatries), and it is itself a local system of knowledge – one of
many ethno-psychiatries (Gaines, 1992, p. 3; Summerfield, 2008) – em-
bedded within the history of a particular culture and inevitably threaded
throughout with assumptions that are ableist, classed, gendered, and ra-
cialized. Yet, psychiatry, like modern science and the current neoliberal
capitalist system, is a “globalised localism” (Santos, Nunes, & Meneses,
2007, p. xxxix) that is seen outside of the West as a form of “Western par-
ticularism whose specificity consists of holding the power to define as par-
ticular, local, contextual, and situational all knowledges that are its rivals”
(Santos et al., 2007, p. xxxv). To recognize this is not to completely reject
biomedical psychiatry; it enables an understanding that “we might employ
biomedicine as a partial frame, useful at times, but incomplete and inad-
equate for much of what we want to accomplish” (McGruder, 2001, p. 77).
A key reason for tracing the entanglements of psychiatry and colonialism
is to come to know them differently, a form of resistance enacted against
the “cognitive injustice” (Santos, 2014) that is made possible through the
dominance of any one approach to understanding distress or well-being
that claims to be universal – an approach that is currently dominated by
the “psy-” disciplines and particularly biopsychiatry.
A Stranger, an Alien, a Resignation
Let us now turn to two letters of resignation, which provide our lens for
this chapter. In 1956 Frantz Fanon, an anti-colonial revolutionary and a
psychiatrist from colonial Martinique, resigned from his post at a psychi-
atric hospital in colonial Algeria. His resignation letter stated that “if psy-
chiatry is the medical technique that aims to enable man to no longer be
a stranger to his environment, I owe it to myself to affirm that the Arab,
permanently an alien in his own country, lives in a state of absolute deper-
sonalization” (Fanon, 1967/1986, as cited in Bulhan, 1985, p. 249).
For Fanon (1967/1986), psychiatry as a therapeutic means of restoring
those alienated from their environments was impossible in the colonial
situation. Fanon (1963) gives the example of how, during colonization,
“the lay-out of the cerebral structures of the North African” were seen as
responsible for their supposed laziness, inaptitude, and impulsivity, mean-

ing that such acts came to be read as “biologically organised” (p. 245).
Specifically, a central way in which psychiatrization has functioned along-
side colonial projects has been to pacify resistance (and naturalize op-
pression) through reconfiguring dissent and distress as mental illness. The
dominant evolutionary explanations of colonialism and madness drew
comparisons between primitivity and psychopathology, comparing “psy-
chotic patients” with “primitive people” and framing social and racially
coded hierarchies as biological (Heinz, 1998). For example, in British col-
onized East Africa, to imagine a future free of the colonizers was framed
as a fantasy – a symptom of illness. This reconfiguration of distress is a
thing not only of the colonial past; it continues today under settler co-
lonialism and occupation, as Shalhoub-Kevorkian (2014) documents in
Palestine: “Palestinian suffering has been apoliticized, individualized, and
psychologized. This shift toward individual, psychological pain masks its
collective underpinning, which is promoted by a racial logic of elimina-
tion and dispossession” (p. 2).
In this way, those who resist (historically and today) are psychologized
and psychiatrized – meaning that analyses of oppressive social conditions
were and are overshadowed by concern with the psychology of the “na-
tives” (Mahone, 2006; Vaughan, 1993). Thus, disease was and is used as
both metaphor and condition (Marks, 1997), for “illness is a powerful polit-
ical metaphor, and the abusive use of terms like ‘mad’ or ‘retarded’ is a com-
mon way of discrediting individuals or societies to whom we are opposed”
(Littlewood, 1993, p. 257). So it might be that the common goal shared by
colonialism and psychiatry was and is the (re)articulation and (re)location
of outside structures to being inside people, and so, in this logic, colonial
hierarchies are genetic; poverty is a problem of mentality (Mills, 2015); and
criminality, rebellion, and resistance are located in psyches and brains.
While it is possible to trace how psychiatry was used as a colonial tool,
a different question arises as to whether psychiatry can itself colonize, just
as “medicine served as an instrument of empire, as well as an imperializing
cultural force in itself ” (MacLeod & Lewis, 1988, p. x). Some critiques of
psychiatry and of global psychiatrization are rooted in the idea of psychia-
try itself as a form of colonialism or imperialism, or as a colonial discourse
(Mills, 2014a; Summerfield, 2008). Psychiatry could be said to colonize in
numerous ways. It may colonize through translation: translating local ways
of speaking distress into psychiatric categories, from local languages to
the tongues of the colonizers (Addlakha, 2008). Psychiatry may colonize
92 China Mills
through labelling and diagnosing experiences that may be personally and

politically meaningful as symptoms of a mental illness in need of treat-
ment and by attributing distress as within brains and not due to societal
and geopolitical structures. Further, psychiatry’s coloniality may also lie in
developing markets for “psy-” expertise and psychotropic medications in
the global South.
Fanon (1963) makes clear, then, that instead of depoliticizing resistance
– for example labelling it as “laziness” and claiming that it is caused by
faulty brains – it is possible to read such acts as symbols of defiance, where
laziness is “the direct product of the colonial situation” (p. 250) and marks
“the conscious sabotage of the colonial machine” by the colonized (p. 239).
Through the lens of Fanon’s writing, what psychiatry calls mental ill-
nesses might be read as products of social inequality or alienation. Fanon’s
insight is that distress and resistance are cast as biological by the colonizer,
who calls upon many types of medicine, including psychiatry, to strategical-
ly locate resistance in pathological cerebral structures. Fifty years later we
might extend this insight: today the biopsychiatry that underlies much of
global psychiatrization may itself be understood as a form of coloniality, as
it also locates distress and arguably resistance within faulty brain chemicals.
“Molecule Conglomerates”
For some authors, it is the pharmaceutical industry that uses psychiatry as

a tool of colonization: psychiatry provides the networks for the pharma-
ceutical “industry to colonize more and more areas of modern life in order
to expand the market for psychotropic drugs” (Moncrieff, 2007, p. 192).
The concern that the pharmaceutical industry uses psychiatry to locate
problems in brains and not in contexts led to another resignation letter,
thirty years after Fanon’s, on a different continent. On 4 December 1998,
Loren Mosher, a U.S. psychiatrist and member of the American Psychiatric
Association for nearly three decades, resigned, saying:
Psychiatry has been almost completely bought out by the drug companies
... Psychiatrists have become the minions of drug company promotions ...
No longer do we seek to understand whole persons in their social contexts
– rather we are there to realign our patients’ neurotransmitters ... keeping
our distance from the molecule conglomerates we have come to define as
patients. We condone and promote the widespread use and misuse of toxic
chemicals that we know have serious long-term effects ... [it] is my belief I am
actually resigning from the American Psychopharmacological Association.
Luckily, the organization’s true identity requires no change in the acronym.

(Mosher, 1998)
Constructing patients as “molecule conglomerates” could be read,

through Fanon, as illustrating the way in which psychiatry, like colonialism,
dehumanizes and objectifies – a process of “thingification” (Césaire, 1972,
p. 21). If distress results from faulty brains, then the implication is that the
solution to the problem is to intervene at the level of the brain, for example
to act on neurochemistry through the use of psycho-pharmaceuticals. Even
as the long-term harmful effects of psychiatric drugs are being increas-
ingly recognized in high-income countries of the global North (Breggin,
2008; Moncrieff, 2007), there is a simultaneous call to increase access
to psycho-pharmaceuticals in the global South, for example by the World
Health Organization (2013). Through the construction of mental illness
as located within people’s brains, this kind of advocacy arguably enacts
Mosher’s fears on a global scale, reconfiguring populations of the global
South as potentially flawed “molecule conglomerates,” as faulty things that
need fixing by psychiatry.
However, here we need to be cautious because we are entering a quagmire
of multiple colonialisms, where psychiatry colonizes minds and the phar-
maceutical industry colonizes psychiatry, and I am left wondering whether
everything could be said to be colonial in some way or another.
Critiques of psychiatry that mobilize colonialism do a number of things.
Some make reference to the way in which psychiatry works as a site of colo-
nial power through the pathologization and individualization of resistance
and suffering; other critiques draw direct comparisons between colonial-
ism and psychiatrization, where psychiatry is framed as either being like
colonialism or being a form of colonialism. To speak of global psychiatri-
zation as colonialism is to use colonialism as a metaphor. This is a move
that the 2013 Mad People of Colour Manifesto warned us against: “White
people’s experiences of psychiatry are not ‘like colonialism.’ Colonialism is
like colonialism” (Gorman, saini, Tam, Udegbe, & Usar, 2013). Similarly,
Fanon maintained that “the colonial environment is like no other,” that it
is an unprecedented situation marked by extreme asymmetries of power
(as cited in Hook, 2004, p. 11). Colonialism, in this argument, should not
be used as a metaphor for other forms of oppression (for example, psychi-
atric oppression), because colonialism has specific meanings, which can be
evaded if turned into metaphor (Tuck & Yang, 2012).
Importantly, the claim that all who are psychiatrized are simultaneous-
ly colonized can marginalize the realities of those populations who have
94 China Mills
experienced both colonization and psychiatrization – whether in post-

colonial contexts such as India or in settler colonies such as Canada or
Palestine. Furthermore, these evasions constitute “settler moves to inno-
cence” that “problematically attempt to reconcile settler guilt and complic-
ity, and rescue settler futurity” (Tuck and Yang, 2012, p. 1). This analysis
draws attention to the need to grapple with the “normalizing connec-
tions” between psychiatrization, colonialism, and multiple other “-isms”
(LeFrançois, 2013, p. 108), particularly as these produce different effects
among differently oppressed groups (Diamond, 2014). Thus, while it may
be problematic to use colonialism as a metaphor to describe psychiatriza-
tion, it is relevant to trace how both colonialism and psychiatrization are
deeply historically implicated and mutually reinforcing, while also tracing
how psychiatrization may currently enact forms of global coloniality (even
after formal colonialism has ended in some places) (Grosfoguel, 2010).
Making Mental Health for All a Reality
The Movement for Global Mental Health is an increasingly influential inter-

national network of individuals and organizations that, alongside the World
Health Organization, aims “to make mental health for all a reality” (Patel,
Collins et al., 2011, p. 90) by increasing “the coverage of services for mental
disorders in all countries, but especially in low-income and middle-income
countries” (Lancet Global Mental Health Group, 2007, p. 87). The “knowl-
edge” produced by the Movement for Global Mental Health, or what it calls
its “scientific evidence base” (Patel, Saraceno, & Kleinman, 2006, p. 1312),
includes the points that distress is a “mental illness” and a “neuropsychiatric
disorder” that is “chronic and very disabling” (Patel et al., 2007, p. 48). As
a key proponent of the movement, the World Health Organization argues
that distress has a “physical basis in the brain ... can affect everyone, ev-
erywhere [and] can be treated effectively” (WHO, 2001b, p. x). Thus it is
in the above language that mental health is to be made a “reality” for all
(Patel, Collins et al., 2011, p. 90), enabling mental illnesses to enter into
the circuits of global capital alongside the drugs that claim to treat them.
If, for Fanon, colonialism was alienating because it located the source of
distress within brain structures; if, for Moncrieff (2007), the pharmaceuti-
cal industry colonizes everyday life through psychiatry; and if psychiatry
has become redefined as psycho-pharmacology, as suggested by Mosher
(1998), then we might wonder whose interests are shaping the agenda of
Global Mental Health and its claims that mental illness is universal.
Reconfiguring Agrarian Crisis as Mental Illness
Fanon was a stark opponent of a colonial psychiatry that located distress

in brain structures and overlooked the socio-historical-colonial context in
which that distress arose. Employing Fanon’s socio-diagnostics, one can-
not understand psychological problems or distress outside of the condi-
tions of oppression that lead to them, nor can one overlook the power
of the oppressor to re-articulate distress as pathology. In Fanon’s time,
colonizers of the global South rewrote people’s resistance as faulty biology,
and today we see some proponents of global psychiatrization rewriting
and diagnosing the effects of socio-economic injustices as mental illness.
This reconfiguration of economic crisis as mental illness is starkly evident
in the high number of farmers who swallow pesticides to commit suicide in
India. There have been over 200,000 farmer suicides in India since 1997
(Lerner, 2010), and there are estimates of 300,000 deaths a year in the
Asia-Pacific region alone due to self-poisoning with pesticides (Patel et al.,
2007). Many critics attribute the cause of this crisis to economic and agri-
cultural reforms that have opened up cotton farming to the world market,
making farmers dependent on purchased inputs and genetically modified
seeds, and leading to an over-reliance on credit from private money lend-
ers. This reliance on credit puts farmers in a precarious position, as they
become particularly vulnerable to crop failure or to price fluctuation of
crops in the world market (Perspectives, 2009). As a result, thousands of
Indian farmers have resorted to suicide, swallowing the very pesticides that
have in part led to the degradation of their land (Perspectives, 2009). Some
farmers have made visible the political and economic role in their suicides,
with “an increasing number of suicide notes today directly address[ing] the
Prime Minister … taking the form of a public statement accusing the state
of betrayal” (Perspectives, 2009, p. 2).
Yet the Indian government has responded to farmer suicides by sending
out teams of psychiatrists, making anti-depressants more widely available
(Sharma, 2004), and launching a study that looks deep inside farmers for
genetic factors linked to suicide (Arya, 2007).
Similarly, Patel (2007) proposes specific medical and psychiatric solu-
tions to the global problem of farmer suicides, including the reduction of
access to pesticides, the improvement of medical care for pesticide poison-
ing, the improvement of treatment for depression, and the increased avail-
ability of anti-depressants. Thus, it would seem that by locating the source
of distress within the brain or within genes, “psychiatry and epidemiology
96 China Mills
can be used as a tool to mute important issues that underlie social suffer-
ing” (Aggarwal, 2008, p. 27). Such an approach also fails to acknowledge
fully the role of the wider agrarian crisis and the way in which this comes to
be inscribed on bodies – for example, how volatile economic markets may
lead to substance abuse or family conflict, which may then lead to suicide.
The high number of farmer suicides signifies the need to understand dis-
tress within the context and reality of diverse forms of colonialism and to
be always alert to the play of social dynamics and power relations in and
on bodies – how bodies and minds bear the mark of colonial relations and
how this becomes an embodied reality, or what Meekosha and Soldatic
(2011) call a “global social embodiment” (p. 1390). It is this recognition of
the embodied reality of all colonialism that is overlooked and foreclosed in
the process of global psychiatrization. Thus, “as colonized societies around
the world struggle to reclaim their histories and articulate the complex-
ity of their political resistance against a tradition of intellectual power,
Eurocentric narratives of suffering intervene, and rewrite some of these
(selected) stories” (Shalhoub-Kevorkian, 2014, p. 3). These rewritings im-
pose a single narrative of psychological suffering that individualizes, ahis-
toricizes, and apoliticizes pain and distress.
Weeding Out Alternatives
That psychiatry may be exported to the global South “by economic and po-
litical forces allied to western power” (such as the pharmaceutical industry)
(Fernando, 2010, p. 113) has led to a major critique of the Movement for
Global Mental Health: that it is colonial, a form of psychiatric imperialism.
Here global mental health is seen as “a top-down, imperial project export-
ing Western illness categories and treatments that would ultimately replace
diverse cultural environments for interpreting mental health” (Bemme &
D’Souza, 2012). These concerns parallel those of Thomas et al. (2005), who
see WHO global initiatives as rooted in neocolonial power relationships
and as “medical imperialism, similar to the marginalization of indigenous
knowledge systems in the colonial era” (Summerfield, 2008, p. 992).
In fact, a key move in making mental health a global reality seems to lie in
delegitimizing and removing alternative realities. This is evident in the devel-
opment of the WHO’s Mental Health Gap Action Program (mhGAP) guide-
lines – specifically developed to aid treatment decisions in non-specialized
health care settings in low- and middle-income countries. According to ad-
vocates of the Movement for Global Mental Health, the guidelines are the
route forward and “should become the standard approach for all countries
and health sectors; irrational and inappropriate interventions should be

discouraged and weeded out” (Patel, Boyce et al., 2011, p. 1442). Here
the guidelines are not only constructed as preferable but put forward as
a new standard by which alternative approaches should be judged (and
ultimately replaced).
This “weeding out” has historical roots in colonization. For example, to-
wards the late nineteenth century in India, Western medicine began a “pro-
cess of elbowing out the indigenous systems of medicine to help western
medicine consolidate itself and thereby maintain its hegemony” (Poornima,
1995, pp. 36, 97). Western medicine, promoted as modern and rational, was
set up against Indigenous healing systems, which “were condemned for
their ‘irrationality’ and ‘superstition’” (Poornima, 1995, pp. 38–9), with asy-
lums functioning as “symbolic strongholds of Western reason standing up
against the maddening abyss of Eastern irrationality” (Ernst, 1997, p. 172).
That the language of irrationality in reference to traditional and Indigenous
healing persists today could be said to demonstrate the continuing links be-
tween coloniality and current efforts to increase psychiatry’s reach.
In fact, this push to consolidate the hegemony of psychiatry continues
in contemporary India, where psychiatrization has been taken up as a gov-
ernmental project, with the Indian supreme court demanding that many
traditional and spiritual healing sites (including dargahs) be shut down,
that they display banners outside healing sites to tell people who are men-
tally distressed to go to the psychiatric hospital, and that, in some states,
people be forcibly removed from healing sites and involuntarily admitted
to state psychiatric facilities (Davar & Lohokare, 2009; Siddiqui, 2016).
In one case the state took legal action against a dargah because it was
seen as violating the Mental Health Act (1987). The Indian government
demanded the handover of “mentally ill” “patients” from the dargah for
psychiatric treatment (Davar & Lohokare, 2009). However, in a letter
sent to the Indian government the healers stated that a dargah was not a
mental hospital and there were no “patients” in it; thus the issue of hand-
ing over the patients to the medical authorities could not arise (Davar &
Lohokare, 2009). This statement is of central importance. If there are no
patients in a dargah, then might there be no mental illness in a dargah? Do
dargahs function as spaces in which psychiatric diagnostic categories may
not be an available identity, where being mentally ill is not a way of being
a person? Exploring this example is not to romanticize traditional heal-
ing sites; it simply recognizes them as one potential site of resistance to
Western biopsychiatry. This is in part because they constitute a space that
psychiatry and the global North does not know, and thus they function as
98 China Mills
a site for knowing distress differently. However, with increasing emphasis

on integrating some forms of traditional healing with psychiatry, including
training healers to administer psychotropic medications, the potential for
resistance may be under threat (Incayawar et al., 2009).
To export psychiatry globally is to begin to reframe an enormous va-
riety of expressions of personal and social distress into an illness model,
treatable by drugs. That psychiatry is developed in a culture that is alien
to much of the world, for Fernando (2010), marks a form of psychiatric
imperialism that is “less obvious” than military domination because it is
swallowed in the form of a pill, but it is “no less powerful and ... destructive
to the vast majority of people in the world” (p. 115).
This destructiveness is documented by Higginbotham and Marsella’s
(1988) findings that in many South Asian cities psychiatric classification sys-
tems have begun to break with and discredit local understandings of dis-
tress, yet provide little to replace them. Furthermore, they appropriate many
of the resources made available for mental health, leading to “deleterious
… after-shocks” within cultural systems (Higginbotham & Marsella, 1988,
p. 557). By focusing on the brain and on a “global norm for mental health,”
the Movement for Global Mental Health overlooks the global complex-
ity of lived experiences and alternative sources of support (Shukla et al.,
2012, p. 292). The discrediting and, in India, the current demonization and
attempts to prohibit traditional and Indigenous forms of healing (Davar,
2014) may be deleterious by the very fact that they reduce multiplicity in un-
derstandings of distress, even as pluralism has been identified by Halliburton
(2004) as a factor in better outcomes for those who are distressed in India.
For Santos (2014) the “failure to recognise the different ways of knowing
by which people across the globe provide meaning to their existence” is a
form of “cognitive injustice” (p. 111). This injustice is followed by attempts
to destroy epistemological diversity through a monist framework – a single
story – that claims to be universal: a form of epistemicide (Santos, 2014).
This constitutes a colonization of the imaginary, of our capacities to imag-
ine alternatives (Gruzinski, 1988, as cited in Rahnema & Bawtree, 1997).
Both colonial discourse and psychiatric discourse permeate conscious-
ness and operate to constitute the conditions through which people come
to see themselves, ways that sometimes clash with alternative worldviews
(Ashcroft, Griffiths, & Tiffin, 2000). Both discourses – through invoking
civilizing missions and humanitarianism – conceal the often economic ben-
efits to those in power that underlie (or advantageously, for some, coincide
with) their interventions. They also conceal or claim to justify the depen-
dencies they create, economically and pharmaceutically. Furthermore, both
conceal, under the rubric of civilizing, the material, symbolic, and episte-
mological violence that they enact through a politics of reductionism that
denies and attempts to erase alternative worldviews (Shiva, 1990).
Indissoluble Ties
For Dhareshwar (2010), “colonialism is destructive of the very integrity

of experience. It is deep because it immediately brings up the question of
what constitutes a form of life and what conditions are needed for its con-
tinued existence and flourishing” (p. 51). Psychiatry too can destroy or oc-
clude experience, and it too is deep, because it constitutes what counts as a
life worth living, while acting through chemicals on people’s brains.
While colonization rarely destroys all creativity and resistance, for
Gruzinski (1988) “it does succeed more than often in weaving indissolu-
ble ties between indigenous cultures and the imported ones” (as cited in
Rahnema & Bawtree, 1997, p. 169). Similarly, we might understand the
globalization of psychiatry as weaving indissoluble ties between people
labelled as mentally ill, and “psy-”expertise, and medication – ties that
dissolve on tongues in the form of a pill, yet create dependencies that are so-
cially and biologically hard to break. In this regard, we can recall Mosher’s
(1998) resignation, because it rallied people against a psychiatry that rein-
forces a society dependent on drugs. Furthermore, this increasing depen-
dence on (often addictive) psychiatric drugs (Timimi, 2002) is reminiscent
of the dependencies created by more formal colonialism that sought to
make colonized countries dependent on the exports of the colonizers.
Thus through the creep of psychiatrization there comes into being “an
international protectorate whose remit encompasses the supervision of the
psychological state of the population [and] entails a far more extensive and
intrusive foreign presence than past colonial administrations” (Pupavac,
2002). For Nandy (1998), “one of the most damaging legacies of colonial-
ism,” and yet one that attracts little attention, is the “dominance of the cul-
tural language in which dialogue among nonwestern cultures takes place.
Even when we talk to our neighbours, it is mediated by western categories,
western assumptions and western frameworks. We have learnt to talk to
even our closest neighbours through the West” (p. 144).
With many non-governmental organizations acting as distribution chan-
nels for psychiatric medication and knowledge (teaching local populations
“mental health literacy”) in many countries of the global South, increasing
numbers of people are coming to understand and encounter their neigh-
bours and themselves through psychiatry.
100 China Mills
Mahatma Gandhi’s critique is useful here, for he does not (as cited in
Dhareshwar, 2010) mobilize against modernity but tries to resist structures
that occlude and to create structures that preserve the integrity of experi-
ence. Applying this to a critique of global psychiatrization as a form of
psychic colonization or psychic coloniality, we might explore the possibili-
ties of not rejecting outright all psychiatric or Western understandings of
mental health, but attempt to identify how these may operate to occlude
experience in both the global South and the global North. The imposi-
tion of these structures that occlude experience is, thus, an ethical issue.
It poses for Summerfield (2008) an ethical challenge around the issue of
consent because it could be argued that people cannot consent to treat-
ments that are alien (and alienating) and irrelevant to their understanding
of the world.
Decolonizing Psychiatry
So far we have explored the multiple entanglements of psychiatrization

and colonialism: psychiatry’s role in colonial governance as a tool to psy-
chologize resistance; and more contemporary forms of global psychiatri-
zation as potentially enacting forms of coloniality.
We have explored how psychiatry has been constituted through colonial-
ism and so is always a colonial practice, and how psychiatry and colonial-
ism (even when seemingly operating apart from one another) use similar
tools, tools that constitute and are built upon the interlacing categories of
madness and savagery or primitivity. Thus, “madness and savagery were/
are co-constituted through a confluence of ideas that rationalized forms of
violence on bodies of difference deemed worthy of harm or exclusion. They
serve together to shore up notions of civility and incivility; they do not now
nor have they ever existed without one another” (Joseph, 2015, p. 1037).
These categories and tools have been central for colonialism and psy-
chiatry in their shared projects of the (re)articulation and (re)location of
external structures to the internals of people’s bodies – the naturaliza-
tion and biologization of colonial, racist, sexist, homophobic, and ableist
hierarchies.
However, while psychiatrization and colonialism may have at their heart
the co-constituting analogies of madness and savagery, it is important not
to equate decolonization with anti- or de-psychiatrization. It may also then
(to rethink my own previous formulations, see Mills, 2014a) be impossible
to de-psychiatrize colonialism or to decolonize psychiatrization.
Within a Fanonian reading, colonialism is “a disease that distorts hu-

man relations and renders everyone within it ‘sick’” (Loomba, 1998/2009,
p. 122). It makes people sick because colonialism is inherently alienating,
and it makes people sick because it constructs their resistance as sickness,
as pathology – psychiatrizing alternative worldviews and recoding them as
mental illness. As described from the outset of this chapter, it is useful to
consider that, in a parallel way, the current globalization of psychiatry also
classifies and diagnoses increasing numbers of people as sick – as mentally
ill. This naming is evident in the WHO’s framing of psychiatric disorders
as a public health emergency, and in its estimations that over 450 million
people worldwide are suffering from a “mental or brain disorder” at any
given time (WHO, 2001a, p. 6). Thus, it would seem that Fanon’s argument
is still relevant today and can assist us in studying the expansion of psychia-
try at the global level.
Yet Fanon may not have agreed with this reading of the similarities be-
tween colonialism and psychiatry as diseases that render those within them
sick. While Fanon opposed psychiatry as a tool of colonialism, he did not
seem to suggest that psychiatry itself is colonizing, and although he moved
away from Algeria, he continued to practise psychiatry. Thus, while Fanon
called for an end to colonialism, he did not call for an end to psychiatry.
For Fanon it was possible to reconfigure psychiatry in non-colonial ways
(contrasting with the above attention to psychiatry as always being colo-
nial) and, more widely, to rethink global psychiatrization, because of his
insistence on a historical grounding of theory – an opposite move to the
universalizing tendencies of psychiatry. To Fanon, distress is “a pathology
of liberty,” and thus psychiatric intervention has a political role in restor-
ing liberty (as cited in Hook, 2004). Thus, Fanon pioneered a “psychiatry
of liberation” embodied in his call for the establishment of day hospital-
ization in Tunisia (Bulhan, 1985, p. 232) and, in doing so, seemed to draw
a parallel between liberty for the colonized and liberty for psychiatric pa-
tients. For this reason Bulhan (1985) rejects the popular idea that Fanon
abandoned psychiatry for politics. Instead it was “his ability to connect
psychiatry to politics or private troubles to social problems and, having
made the connection conceptually, to boldly act that made him a pioneer
of radical psychiatry and of psychopolitics” (p. 240).
It is worth repeating that while Fanon was critical of the cultural and
racist biases within psychiatry and its extension to North Africa, he was
not calling for the abandonment of psychiatry. Thus, in Bulhan’s reading
of Fanon, “the paramount tasks of psychology and psychiatry [should be]
102 China Mills
to unravel the relation of the psyche to the social structure, to rehabilitate

the alienated, and to help transform social structures that thwart human
needs” (1985, p. 195), and to transform individual pain into political action
(Vaughan, 1993, p. 46).
This is to imagine a different kind of psychiatry as well as multiple alter-
natives to psychiatry, that is, alternatives that do not see distress and those
who experience it as “molecule conglomerates” (Mosher, 1998). Other ways
of knowing distress can come from those who know it well – those who
have experienced it first-hand. Multiple user and survivor-led initiatives and
movements are growing worldwide in response to global psychiatrization.1
Organizations from the global South, such as the South African–based
Pan African Network of People with Psychosocial Disabilities (PANUSP)
(see Ibrahim, chapter 4 of this volume), make clear that “services and sup-
port must be delivered in non-paternalistic and non-patriarchal frameworks
with choices available outside of the medical framework” and should in-
clude “the choice not to use western medical ‘solutions’” (PANUSP, 2012,
pp. 2–3). To call upon people’s rights to non-medical interventions into
distress serves as a reminder that these alternatives do exist, even if they
are often eclipsed (or actively demonized) by the dominance of psycho-
pharmaceutical approaches.
Another key reason, then, to read colonialism alongside psychiatriza-
tion is to allow a more nuanced reading of resistance to psychiatry. For
as psychiatry travels, so do the networks, initiatives, and movements that
fight against psychiatric hegemony, including alternative frames of refer-
ence that do not treat distress as an illness and that name multiple realities
in locally and Indigenously meaningful terms, not in the alien (and alien-
ating) technical idioms of psychiatry (some of the myriad forms that this
resistance takes are discussed in detail in Mills, 2014b).
For Nandy (1987), Indigenous and traditional systems of medicine (and
of agricultural practices, spiritualties, non-capitalist forms of exchange, etc.)
are “indicators of a spirit which defies the power of a way of life which seeks
to cannibalize all other ways of life” (p. 45). Thus there is a need to be always
alert to the danger of a single story – the subtle ways that one perspective
becomes definitive (Akomolafe, 2013). Such defiance is akin to speaking an-
other language, “a language of dissent which would not make sense – and
will not try to make any sense in the capitals of the global knowledge in-
dustry” (Nandy, 1983, p. xiii). For Thiong’o (1981), to speak in a language
different from the colonizers is a step in “decolonizing the mind” (p. xiv).
This approach has implications for potential action between otherwise
incommensurate groups to come together to oppose forms of cognitive in-

justice and epistemicide enacted through single-story narratives of all kinds.
The story told by those who promote global psychiatrization, such as the
World Health Organization, is not the only one. It is important to tell other
stories – stories that understand distress as locally and contextually embed-
ded, historically specific, or entangled with global relations of inequality,
because “the understanding of the world by far exceeds the Western under-
standing of the world” (Santos, 2012).
Fanon urges the colonized to “work out new concepts” (Fanon, 1963,
p. 255). Nandy has concrete suggestions in this regard: “the first concept ...
has to be the victims’ construction of the West, a West which would make
sense to the non-West in terms of the non-West’s experience of suffering”
(1983, p. xii). This suggestion would enable a (re)configuration of experi-
ence in ways that make sense to people in terms of their grounded experi-
ences of distress and that would not impose a single narrative of suffering,
whether psychological, biomedical, or otherwise. This approach stakes out
another space that does not fit the needs of colonialism. Such a space is the
realization of the colonizers’ fear that the colonized will discover “an alter-
native frame of reference within which the oppressed do not seem weak”
(Nandy, 1983, p. 11).
Moving from charting the psychiatric reconfiguration of resistance to
colonialism, to thinking through the more wide-scale coloniality and epis-
temicide at work through global psychiatrization, this chapter has aimed
to resist telling a single story of the multiple realities of distress and to
make visible the alternatives to the hegemony of psychiatric knowledge
systems from the global North. This is important because to see that al-
ternatives do exist in the present in the form of local knowledge and in
counter-hegemonic movements worldwide forms a key aspect of dissent. In
tracing the many entanglements of psychiatry and colonialism – the psychi-
atrization at work within colonialism and the coloniality of psychiatrization
– I have aimed to illustrate that there are many stories to tell of distress and
dissent and that these stories have many beginnings and more than one end.
NOTE
1 See Korste (2012) for a review of recovery and peer- and user-led projects
worldwide. For international mobilizations around mental health, and
sometimes against psychiatry, see the work of Bapu Trust, the World Network
104 China Mills
of Users and Survivors of Psychiatry, European Network of (ex) Users and

Survivors of Psychiatry, and MindFreedom International.
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PART TWO
Decolonizing Research and Practice

4 Mental Health in Africa: Human Rights
Approaches to Decolonization
mohamed ibrahim
Introduction
Contemporarily the discourse that shapes African approaches to psycho-

social disability1 is substantially influenced by the continent’s colonial his-
tory. In most African countries, laws pertaining to mental health have been
inherited from colonial governments, which drafted them, in part, as a
powerful mechanism for controlling the African population politically and
socially, perpetuating oppression and protecting White settler rule. In ef-
fect, these laws promoted gross human rights violations, social exclusion,
and excessive restriction of personal liberties. Yet, currently less than half
of African countries have undertaken meaningful legal reforms rid them-
selves of this legacy (Edgar & Sapire, 2000; Fournier, 2011; Ibrahim, 2014;
McCulloch, 1995; Westbrook, 2011).
Across the continent mental health services are woefully lacking, and
people labelled as mentally ill face long-term institutional confinement in
stand-alone, colonial-built psychiatric hospitals, where chemicals, physical
restraints, and punishment are still widely administered. Unfortunately, in-
dependent African governments have done little to redress these human
rights violations. Indigenous and spiritual healings were curtailed and
criminalized during colonial times. Moreover, upon reaching independence,
most nations ignored mental health and retained the Western biomedical
approach, which is not only under-resourced but of questionable effective-
ness and appropriateness; worse still, it has been a tool of ongoing colo-
nialism (Ibrahim & Morrow, 2015; Mkize, 2009; Nevin, 2006; Robb, 2012;
Whitaker, 2010).
Those living with psychosocial disabilities face widespread stigma and vi-
olence at institutional and community levels; social and political exclusion;
114 Mohamed Ibrahim
and unparalleled discrimination in terms of access to economic opportuni-

ties, health services, justice, and every other important facet of life (Robb,
2012). This violence and stigma, coupled with the criminalization that arose
through the colonial legacy, results in a triple tragedy for those with psy-
chosocial disabilities in Africa and requires much more than the biomedical
approach of “pill pushing.”
This chapter focuses on three interconnected issues or themes: the histor-
ical and contemporary effects of colonial psychiatry in Africa; the emerg-
ing political role played in Africa by persons with psychosocial disabilities
in addressing mental health from a human rights perspective; and the need
to decolonize, indigenize, and democratize practice, research, and train-
ing such that they align with socio-cultural and economic realities on the
continent and with a social justice framework. Along the way I will also
share my own educational and clinical experiences from years of practice in
the East African nation of Kenya. To highlight more constructive ways of
addressing mental health, I describe current efforts on behalf of continent-
wide consumer and survivor organizations to enhance human rights and
social justice for mental health in Africa and, more important, to resist
continued colonization. In particular, I focus on the Pan African Network
of People with Psychosocial Disabilities (PANUSP), formerly known as
the Pan African Network of Users and Survivors of Psychiatry, a network
of organizations in Africa for and by persons with psychosocial disabilities
– that is, persons with lived experience and who wear the label of mental ill-
ness. PANUSP is a member of the World Network of Users and Survivors
of Psychiatry (WNUSP, http://www.wnusp.net), a global movement with
representatives in over fifty countries (PANUSP, 2011).
PANUSP has come into existence at a very critical time, when persons
living with psychosocial disabilities face another round of Western psy-
chiatrizing hegemony in the twenty-first century in the name of the global
mental health campaign. The global mental health campaign is driven by
the biomedical model and supported by the World Health Organization
(WHO) and its global ally, the Movement for Global Mental Health.
PANUSP and its global partner WNUSP, among others, have come out
strongly against this global mental health campaign, which they argue is
another attempt to medicalize a social phenomenon that requires broader
social, economic, and human rights solutions (Robb, 2012).
Historically, the Western biomedical psychiatric paradigm was not a be-
nevolent form of medicine aimed at healing Africans who were struggling
with mental distress, but rather an important tool of the colonial powers
to justify colonialism, oppression, and gross human rights abuses (Keller,
Mental Health in Africa 115
2007; Mahone & Vaughan, 2007). For this reason, decolonizing African
mental health systems should be the first natural step in moving the men-
tal health debate forward and in humanizing the sector. Those with lived
experience should be welcomed as equal members of society and treated
with respect and dignity.
Not Yet Independent
In 2013 Africa rejoiced. The African Union, which in 2001 had replaced
the Organization of African Unity (OAU), celebrated its fiftieth anniver-
sary. Many African countries celebrated or planned grand jubilee events
to mark their freedom from colonialism (African Union, 2013). But those
with psychosocial disabilities may not have been in the mood to join in the
freedom parties just yet, because in most African nations mental health laws
retained their colonial form in both policy and practice. Headlines cover-
ing mental health from major news outlets in different parts of Africa told
stories of neglect and unspeakable violence against those with psychoso-
cial disabilities. For example, Bariga (2013) of Human Rights Watch sum-
marized the sad situation in Ghana’s psychiatric hospitals as “Involuntary
treatment: The invisible health care crisis,” and the headline by Olingo
(2013) of the Daily Nation of Kenya expressed the unfortunate situation
in Kenya’s foremost mental health hospital: “45 mentally ill patients es-
cape from Kenya’s mental hospital.” Meanwhile, two recent human rights
reports, Silenced Minds: The Systemic Neglect of the Mental Health
System in Kenya by the Kenya National Commission on Human Rights
(KNCHR, 2011) and Like a Death Sentence: Abuses against Persons with
Mental Disabilities in Ghana by Human Rights Watch (2012), highlight
the gross and systemic institutional and communal violence against those
with psychosocial disabilities. In Africa now, as then, psychiatry is often
colonial, repressive, abusive, and detrimental to the health and recovery
of those whom it purports to treat, many of whom are confined to colo-
nial-era, stand-alone institutions. Independent African nations inherited
many unjust laws and policies from European colonial powers, but few of
them remain as intact and oppressive as those found in the current mental
health systems across the continent.
Mental Hospitals as Centres of Psychiatric Racism
During colonial times, medicine in Africa, especially psychiatry, had a very

active role as an agent of colonization, oppression, and racialization of
116 Mohamed Ibrahim
Africans. In this section I expand on this argument, which has been put
forward by multiple critics (see Campbell, 2007; Edgar & Sapire, 2000;
Keller, 2007; Mahone &Vaughan, 2007; McCulloch, 1995; Metzl, 2009)
through an examination of the role played by scientific racism in the colo-
nial project. Further, I argue that medicine and psychiatry played an even
more regressive role than did colonial governments in instituting and up-
holding racist and degrading practices.
It is important to recognize the historical role that Western science has
played in Africa. It was by establishing false “scientific grounds” (espe-
cially in psychiatry and psychology) that colonial powers claimed that the
natives – be they Blacks in sub-Saharan Africa, or Arabs in North Africa –
were less intelligent and mature than their White counterparts and needed
to be treated as sub-humans, firmly kept in their rightful place as colonial
subjects, servants, labourers, and slaves (Campbell, 2007; Jackson, 2005;
McCulloch, 1995; Vaughan, 1991). In a 1933 address to a medical confer-
ence in Rabat, Hubert Lyautey, the French conqueror of Morocco, North
Africa, was explicit about the role of doctors in advancing colonial inter-
ests when he said, “The physician, if he understands his role, is the pri-
mary and the most effective of our agents in penetration and pacification”
(Mahone & Vaughan, 2007, p. 32).
With the establishment of the East African and Algiers Schools of
Psychiatry in Kenya and Algeria, respectively, in the early 1900s, psychia-
trists lived up to Lyautey’s call. Both schools, as well as other psychiatric
institutions across the continent, became powerful scientific mouthpieces
for the abnormalization of the African mind and intellect, with the in-
tent to “other and delegitimize their being” (Jackson, 2005; McCulloch,
1995). The most vocal colonial psychiatrists were those practising in coun-
tries with significant established White settler communities such as Kenya,
Algeria, South Africa, and Zimbabwe (Sadowsky, 1999). Leaders at hos-
pitals in these countries ensured that their institutions played a crucial
role as centres for eugenics research and testing of new treatments that
later became available to European patients, both in Africa and Europe
(Jackson, 2005; Keller, 2007; McCulloch, 1995). In most cases the deaths
and complications among native patients that arose from these procedures
did not matter to the authorities. For instance, in 1942 the death toll from
electroconvulsive therapy (ECT) rose dramatically to an average of six per
month in the Ingutsheni Lunatic Asylum in Zimbabwe. A commission of
inquiry was formed to investigate, among other complaints, the indiscrimi-
nate use of ECT for non-psychiatric conditions like tuberculosis, tumours,
and syphilis among African patients (McCulloch, 1995, pp. 38–9). Despite
evidence tabled against the hospital’s physician, the commission ruled out
ECT as the cause of the deaths and failed to sufficiently address the high
mortality among the African in-patients, demonstrating the insignificance
of African lives to the colonial administration. Similar or even more harm-
ful treatments have been extensively used in North Africa where French
colonial psychiatrists used ECT, insulin coma therapy, and other untest-
ed interventions on North African Muslims on a large scale, while their
counterparts in France followed proper scientific protocols of testing new
treatments on animals first and then gradually scaling up to human trials
(Keller, 2007).
Psychiatric colonization and its strong link with slavery was transatlan-
tic in nature as was evident with the happenings in North America when
in 1851, Dr Samuel Cartwright, a leading American pro-slavery psychia-
trist, popularized a racist psychiatric diagnosis for enslaved blacks called
“Dysaethesia Aethiopica,” or “hebetude of the mind and obtuse sensi-
bility of the body,” a condition he claimed was characterized by laziness
and lesions (Jackson, 2001, p. 9). He also coined the term Drapetomania,
a category he used to diagnose slaves who attempted to escape captivity.
For both conditions he recommended whipping as the treatment of choice
(Jackson, 2001; Metzl, 2009). Seventy years later, following in Cartwright’s
footsteps, Dr H.L. Gordon suggested racially demeaning psychiatric labels
such as “bradyphysis” (backwardness) and amentia (lack of intelligence),
which he claimed were common conditions among Kenyan natives. Gordon
also doubted the “educability of Africans” (Campbell, 2007; Mahone &
Vaughan, 2007), arguing that native Africans’ intelligence level was equiv-
alent to that of a lobotomized European and that educating Africans was
a waste of time and resources. He advocated for continued colonization.
In fact, he hypothesized that a higher incidence of dementia praecox
would result among educated Africans and warned of the perils of edu-
cating them (Mahone & Vaughan, 2007; McCulloch, 1995). This hypoth-
esis even stirred tension among the colonialists, with the then education
administrator H.S. Scott in Kenya stating that “according to Gordon,
I am engaged in preparing Africans for dementia praecox” (Mahone &
Vaughan, 2007, p. 45).
In fact, physicians were far more effective as political agents than those
in other disciplines, such as anthropologists, when it came to justifying
oppression of colonized citizens by shifting the discussion from a socio-
political, justice, or economic issue to an individualized pathological one.
Such was the case during the uprising of the Mau Mau (a movement cred-
ited with the achievement of Kenyan independence). Colonial physicians
118 Mohamed Ibrahim
such as John Wilkinson and Michael Kirby, in 1954 and 1957 respectively,
were the first to expertly write on the resistance movement from a psy-
chopathological view (McCulloch, 1995). In contrast, Louis Leaky, an an-
thropologist, though sympathetic to the colonial establishment, disagreed
with the medical explanatory model and hypothesized that prevailing eco-
nomic and socio-political issues were contributory factors in the rebellion
(McCulloch, 1995). In North Africa, psychiatric interventions – or torture,
to be precise – became useful during the Algerian independence war when
unmodified ECT (ECT administered without anaesthesia) become a tool
of interrogation and intimidation to counter the rebellion (Keller, 2007).
Such were the extremes of Western psychiatry as practised on the African
continent: a free African, or one trying to be free, was regarded as deviant
or abnormal by the medical establishment and the colonial government.
No wonder that at the height of the Mau Mau rebellion the colonial gov-
ernment sought the advice of Dr J.C. Carothers, a well-known colonial
psychiatrist in Africa and former chief psychiatrist at Kenya’s Mathari
Lunatic Asylum (McCulloch, 1995). As an expert on “African mental-
ity,” Carothers provided a detailed analysis of the troubled mind of the
Kikuyu, one of the largest ethnic groups in Kenya, from which the Mau
Mau drew most of its support. In his landmark article “The Psychology of
the Mau Mau” he created a pathologized “kikuyu personality” and almost
entirely ignored the underlying issue of occupation, exploitation, and rac-
ism, recommending forceful and coercive ways to deal with the uprising
and the community at large (Mahone & Vaughan, 2007).
Although known for his racist inclinations, Carothers was nevertheless
hired by the WHO as a mental health consultant in Africa, which served to
legitimize his views and transform them into a knowledge base for African
mental health. Carothers’s monograph The African Mind in Health and
Disease, series no. 17, was published by the WHO in 1953 (Carothers,
1970). The book discussed the anatomical, physiological, and skin colour
differences of natives vis-à-vis Blacks and Europeans and on the inferiority
of Africans owing to such differences (Carothers, 1970).
In addition to the pathologization of the masses in Africa, criminaliza-
tion of those psychiatrized was achieved by the penal code and the mental
health laws. Mental health institutions were largely part of the prisons de-
partment during most of the colonial era, especially in sub-Saharan Africa,
and this institutional association established the current deep-rooted, pre-
vailing stigma and criminalization of those on the continent with psycho-
social disabilities. The Lunacy Act and later the Mental Health Act were
widely in place across the continent, especially in the British colonies of
West, South, and East Africa, and used politically to suppress rebellion

and detain individuals or groups who appeared to be a threat to the colo-
nial establishment. This was the case for Nonthetha Nkwenkwe, the South
African spiritual leader who was committed to a psychiatric facility in 1922
because of her influence and the threat she posed to White minority rule
(Edgar & Sapire, 2000). The political reason for psychiatrizing Nonthetha
was made plain when the presiding judge alluded to the fact that a judg-
ment of insanity would help to deflate her movement. She eventually died
in Pretoria Mental Hospital in 1935 (Edgar & Sapire, 2000).
In another notable example of the psychiatrization of Africans to delegiti-
mize their quest for freedom, Somalia’s hero and freedom fighter Mohamed
Abdullah Hassan was labelled the “Mad Mullah” by the British colonial
government in Northern Somalia for his strong leadership between 1920
and 1940 against the British and Italians occupying his native country
(Lewis, 2003). Likewise, in many parts of Africa, colonial governments,
through the Witchcraft Suppression Act, restricted or outlawed African
healing systems and threatened healers with arrest and punishment as a
way of both colonizing and depriving Africans of their sacred and impor-
tant cultural healing and educational systems. The Witchcraft Suppression
Act was effective in demonizing freedom fighters like the Mau Mau as evil
and superstitious oath takers who were hell bent on destroying the White
race and therefore deserved to be lethally suppressed. It is estimated that
more three hundred thousand Kenyans, mainly of Kikuyu ethnic group,
were killed during the Kenyan emergency period of 1952–62 at the height
of the Mau Mau uprising (Hasian, 2013). To this day, such laws still ex-
ist and are enforced in some countries, including Zimbabwe and Uganda
(Abbo, 2011; Nevin, 2006).
Independent Africa and Mental Health Services
From slavery and colonialism to independence wars, endless post-

independence conflicts, and natural calamities, Africa, the second-largest
continent, with more than fifty independent nations and one billion peo-
ple, has had more than its fair share of problems. Sadly, mental health
issues have largely remained on the margins (Farah, Kiamba, & Mazongo,
2011). Beyond these socio-economic and political challenges, the continent
is also bedevilled by a significant physical health burden, with high mortality
and morbidity rates arising from HIV/AIDS, malaria, tuberculosis, and ma-
ternal and childhood diseases, all of which take a toll on the psychological
well-being of the people (Fisher & Baum, 2010; Njenga, 2002).
120 Mohamed Ibrahim
Unfortunately, independent African governments and scholars have done

little to address the psychological impact of long-standing, intergenera-
tional societal trauma and have intentionally or unintentionally maintained
the colonial status quo, an action that is mostly responsible for the cur-
rent dismal situation (Njenga, Nguithi, & Kang’ethe, 2006). From Blida
(Algeria) to Ingutsheni (Zimbabwe) to Mathari (Kenya) to Kissy (Sierra
Leone) to Zomba (Malawi), colonial-built, stand-alone psychiatric hos-
pitals across the continent remain the sole mental health service providers
in many twenty-first-century independent African states, with few changes
in building structures, attitudes, policy, or treatment protocols (KNCHR,
2011; McCulloch, 1995). In Nigeria, and indeed in many other African
countries, the cruelty of the colonial psychiatric system is still in place, as is
evident in the use of unmodified ECT, during which patients are forcefully
pinned to the floor by strong men to prevent them from being physically
hurt due to the powerful seizures induced by the electric shock (James,
Omoaregba, Igberase, & Oloto, 2009).
As a student nurse at some of the biggest hospitals in Kenya, namely
Machakos General Hospital and Nakuru Provincial General Hospital in
1996 and 2004, respectfully, I witnessed direct ECT treatments and saw
the anguish and terror in the eyes of patients who were forcibly taken
down and given electric shocks while they were conscious. Many suddenly
lost consciousness and violently shook owing to the strong seizures in-
duced by the electric current. If this is not outright torture, or torture as
treatment, then I do not know what torture really means. In a country with
a tainted political history, where political prisoners have been physically
and psychological tortured, and where this has been recognized as torture
by so-called respected bodies such as the Kenya National Commission
on Human Rights (KNCHR), I do not understand why the same would
not apply to direct ECT. In fact, as signatories to the United Nations
Convention on the Rights of Persons with Disabilities, Kenya, India, and
other countries still allowing direct ECT are in clear contravention of the
treaty, which calls for the abolition of inhumane, degrading, and harmful
treatments (Minkowitz, 2007).
This lack of questioning of severely harmful Western biomedical treat-
ments, especially by the political and medical elite, is a clear indication of
the superior positionality of the Western biomedical paradigm in Kenya
and across the global South. Mills (2013) discusses the similar hegemonic
positioning of Western treatments in the Indian context, where direct ECT
is widespread, and psychiatrists conduct mobile clinics and administer
ECT even to children. In my own experience, while on an educational visit
to a psychiatric department in a busy Mumbai hospital in India in 2009,

I was appalled by the number of patients undergoing ECT on any given
day; one of the psychiatrists gave a rough estimate of thirty to sixty pa-
tients per day. It is time that the KNCHR and other human rights orga-
nizations declare direct ECT as torture, and call for outlawing its use as
a psychiatric treatment.
If African mental hospitals are the physical and clinical manifestation of
colonialism in relation to mental health, the continent’s health care educa-
tion represents a systemic legacy. Health care education is deeply rooted in
the colonial educational system, as most academic institutions have main-
tained Western forms and shunned African traditional educational systems.
Kreitzer (2012) noted the lack of local content in the social work curriculum
in the University of Ghana, West Africa, and the enthusiasm of the faculty
and students in embracing the Western model in its entirety, in a country
where the prevailing cultural, socio-economic, and political systems differ
from those in the West. In fact, universities across post-independent Africa
stubbornly remain “black outside and white inside” (Kreitzer, 2012), as the
preference for a purely Western form of education is apparent throughout
the continent.
When I was training as a registered psychiatric nurse at the country’s
premier medical institute, the Kenya Medical Training College, our cur-
riculum was devoid of African perspectives on mental health or illness. I
vividly remember a lecturer demonstrating her ignorance by a glib response
to my question regarding the lack of African knowledge about mental
health, calling local cultural responses “primitive” and therefore unworthy
of being part of the curriculum. After relocating to North America, first
to the United States and then Canada, I realized how much easier it was
for me to practise as a mental health clinician in North American clini-
cal settings than in Kenya because my training was purely biomedical and
more relevant to the Western explanatory model than to the various local
Kenyan cultures.
This bias towards a Western education can be viewed historically through
the lens of the dichotomy of “modern” Western versus “primitive” African
knowledge, which was originally introduced by the colonial forces, and,
contemporarily in economic terms, as assuring greater employability for
graduates, as well as transnational emigration to developed nations. This
brain drain immensely benefits Western countries, an issue that has been
called one of the biggest threats to Africa in addressing its many and com-
plex health needs, including HIV/AIDS, malaria, and tuberculosis, which
claim millions every year (Kirigia et al., 2006). A significant percentage
122 Mohamed Ibrahim
of African-trained health professionals emigrate to Western countries for

economic reasons (Kirigia et al., 2006; Ndetei & Szabo, 2011), with the
bulk ending up in English-speaking countries. For instance, by some esti-
mates, more Ghanaian psychiatrists practise in Canada than in the entire
country of Ghana, with its twenty million people, and more than half of
the 340 Nigerian psychiatrists are based in the United Kingdom (Gureje &
Alem, 2000). Another study estimated that at least 25 per cent of Nigerian
psychiatrists move to the Western world within five years of finishing their
residencies (Oyelere, 2007). Thus, we can conclude that African health care
education – still colonial in its preference for Western styles of learning
– and the resulting movement of trained health workers from Africa to
the Western world in the globalized era constitute an outcrop of ongoing
colonization that continues to benefit the health care systems and econo-
mies of Western countries, as well as multinational drug companies mostly
operating from the global North.
But the story of being “white inside” starts much sooner, at kinder-
garten age, where African spaces of learning are hostile to many things
Indigenous, and where speaking your ethnic language in the school com-
pound leads to corporal punishment. Many of today’s health professionals
across the continent grew up knowing that learning the White man’s lan-
guage and knowledge was not only a way to join the burgeoning African
elite but also a strategy to escape punishment, shame, and guilt at school
(Ndura, 2006). These youngsters were taught and systematically condi-
tioned to dislike and devalue their African culture, knowledge, and ways
of life. They are the ones who take over the political and professional posi-
tions of the newly independent nations, thus perpetuating the same sys-
temic and structural oppression inherited from colonial powers (Ndura,
2006). Ndura (2006), an education scholar, in describing the educational
system in French-speaking, Belgium-colonized Burundi, argued that “the
entire educational system, from the boarding schools to the curriculum,
was set up to bring shame to native cultures and aspiration for and honor
to European or Western cultures” (p. 91). Ndura described her experience
in boarding school, where she was subjected to corporal punishment for
speaking her native language, and where the French language became a
“symbol of safety, power and social advancement” (p. 90). In my own
life, growing up and attending a local school in a rural village in northern
Kenya in the early 1980s, where Western-educated individuals represented
about 1 per cent of the population, speaking English was strictly enforced.
Public shaming in front of peers, and corporal punishment, was standard
for those who broke the language rules.
Meanwhile, apart from assaults by Western colonial biomedical profes-

sionals and services, traditional African healers were, from colonial times,
condemned as evil, malevolent, satanic, and ungodly by Christian mission-
aries, who worked hand in hand with colonial powers to Christianize and
“civilize” Africans. Since most health professionals in colonial times had to
embrace Christianity to attend at mission schools, African healing systems
had no chance of legitimacy in post-independent Africa and still struggle
fifty years later (Abbo, 2011; Mahone & Vaughan, 2007; Ndura, 2006). It
is insulting to the African people for African mental health professionals
to follow the policies of colonial psychiatrists like J.C. Carothers, a man
known for his essentializing and racist views of the continent and its people
and who, even while acknowledging the usefulness of traditional healing
systems, argued that traditional healers should not be formally recognized
by the mainstream health sector. Now, sixty years after colonial psychiatry
called for the marginalization of traditional health care, sadly such mar-
ginalization remains in force in many parts of Africa (Hillenbrand, 2006;
Sadowsky, 1999).
Two important health incidents, which occurred separately in 2011 and
2013 in the East African nations of Tanzania and Kenya, and which cap-
tured the world’s attention, underscore the overt – and covert – policy and
attitude towards health care, including mental health with respect to the
complete dominance of biomedical over Indigenous health perspectives. In
2011 a retired priest-turned-herbalist, Ambilikile Mwasipile, also known
as Babu, from Loliondo in northern Tanzania, claimed that he could heal
and cure people’s various illnesses using a combination of herbal medicine
and spiritual healing. Babu was such a phenomenon that his fame spread
like bushfire through the entire region. People of all walks of life – poor,
rich, and the mighty – came from the neighbouring countries and as far as
South Africa, by road and air, with lines stretching up to seven kilometres,
to see him (Ramachandran, 2011). The story of Babu was well covered by
the Kenya media, as thousands of Kenyans from every corner of the coun-
try flocked to his clinic across the border in Tanzania. There were genuine
public health concerns about his claim, however, as people with infectious
conditions such as HIV and other chronic illnesses opted for his medicine
rather than their daily dose of regular pills, and both the Tanzanian and
the Kenyan government had a duty to protect their citizens. But the call for
Babu’s arrest by Kenya’s health minister, without investigating his claims,
for the simple reason that he was a mganga (traditional healer, Swahili),
was telling of the pervasive hostility towards Indigenous healers (Muiruri,
2011). Although the call for his arrest was inconsequential because Babu
124 Mohamed Ibrahim
was Tanzanian and practised his craft in his homeland, the message was all
too clear: Kenyan healers should worry about their government’s continued
criminalization of African healing systems. Interestingly, the Tanzanian
government’s earlier ban on Babu’s treatment was reversed due to popular
demand. The government was actually obliged to provide security support
to Babu because of the extremely high number of patients thronging the
small village, which lacked the capacity to handle such multitudes.
However, when, in the summer of 2013, a large number of patients force-
fully escaped from Mathari hospital, Kenya’s largest national referral psy-
chiatric hospital, with serious complaints of human rights violations, poor
living conditions, and the use of ineffective psychotropic medications, there
were no calls for arrest, resignation, or investigation into the quality of
treatment at the facility, and the only official to speak on the issue was a po-
lice inspector, who called for the re-arrest of the escapees (Mwaniki, 2013).
In North Eastern Province of Kenya where I come from, successive inde-
pendent Kenyan governments have perpetuated the colonial legacy of sup-
pressing Indigenous healing systems. To this day the police and provincial
administration, under the direction of the powerful Ministry of Internal
Security, maintain a ban on Ayana or Mingis, a popular folkloric healing
system that is widely used for mental distress across northern Kenya and
the Horn of Africa (Somalia, Djibouti, and Ethiopia). Security officers reg-
ularly track down and arrest healers, confiscate their properties, and leave
many people without any alternative form of treatment or healing. The
province remains the only one with no formal mental health services. Yet
the national government, which is constitutionally mandated to provide
health care services to all its citizens, not only denies the province’s resi-
dents mental health services but deprives them of their Indigenous healing
system (Ibrahim, 2014; KNCHR, 2011). All of these examples highlight
the continuing marginalization and undermining of African healing sys-
tems, and the privileging of Western biomedical practices, even when the
latter are clearly harmful, as in the case of the Mathari mental hospital.
Global Mental Health
With mental health gaining global prominence as an issue in the past few
years, especially in low-income and lower-middle-income countries, Africa
is in the spotlight because of the lack of modern mental health services,
owing to a lack of commitment by African governments and a severe short-
age of mental health professionals (World Health Organization [WHO],
2008). As a result, the WHO and its allies, especially the Movement for
Global Mental Health, have been pushing for an ambitious project to

increase mental health services by making psychotropic drugs more ac-
cessible and by training more mental health professionals (Abbo, 2011;
Oyelere, 2007; WHO, 2008).
This movement, which targets the global South, is based on a 2004 WHO
study called the Global Burden of Disease and on a series of articles pub-
lished in 2007 by the Lancet journal, which reported mental illness to be
a leading cause of disability around the globe. The movement claims that
75 per cent of those affected by mental, neurological, and substance abuse
(MNS) disorders live in low-income and lower-middle-income countries
without access to mental health services (WHO, 2008). The WHO (2010)
therefore produced a framework dubbed the Mental Health Gap Action
Program to guide governments and health service providers in scaling up
treatments for MNS.
The WHO study used a metric system called Disability-Adjusted Life
Year (DALY) to quantify the total years of lives lost to mortality and mor-
bidity for each given disease. In their findings, mental illness was projected
to be at the top of the list of most disabling diseases by 2020 – hence the
global significance and the rationale for Western biomedical interventions
(Patel & Prince, 2010; WHO, 2008). However, the WHO’s campaign for
the Mental Health Gap Action Program has faced fierce criticism from not
only global and pan-African survivor groups but also prominent scholars
and authors (see Fernando, 2011; Mills, 2013; Summerfield, 2008; Watters,
2011) who joined the fray and questioned or outright criticized the WHO
study with respect to the validity of the tools used to measure mental illness
across cultures, as most of these were developed for Western populations.
Another concern about the campaign is the centrality of psychopharma-
cology as the main driver for scaling up mental health treatments in the
global South (Mills, 2013; PANUSP, 2011; Patel, 2011; WHO, 2008).
In addition, critics also claim that, if left unchecked, the current cam-
paign will globalize the Westernization of distress in the form of the bio-
medical psychiatric paradigm, thus suppressing diverse understandings of
human distress and feelings and eventually erasing culturally appropriate
ways of coping with those challenges. Although, as mentioned above, the
campaign is geared primarily towards the global South, the debates are
happening primarily in Western metropolises and among Western experts.
By approaching African mental health from an imperial Western perspec-
tive, the WHO and its allies are perpetuating the ongoing colonization of
African mental health services. In so doing, they are inflicting the same
kind of damage that they did fifty years ago when, as described earlier, the
126 Mohamed Ibrahim
organization hired the known racist J.C. Carothers as their consulting men-
tal health expert for Africa (Carothers, 1970;Summerfield, 2008).
With all the hype about scaling up to address mental health in Africa,
less attention is being paid to the significant role played by complemen-
tary, alternative, and traditional healing systems, even though studies have
found that 80 per cent of the continent’s population still prefer tradi-
tional healers for their health needs (Abbo, 2011; Abdullahi, 2011). For the
most part, traditional medicine remains the only accessible and affordable
option on a continent where poverty is rampant, and in most countries
in sub-Saharan Africa where half the population makes less than a dollar
a day (Abbo, 2011; Abdullahi, 2011). Traditional African health care was
meant to be communal and non-commercialized. Payments were symbolic,
in kind or non-monetary, and sustainability was guaranteed, as opposed to
modern medicine, which becomes more expensive by the day (Abdullahi,
2011). African healing systems are holistic in nature and deeply root-
ed in local cultures and beliefs in health and illness – attributes that fit
well with the WHO’s definition of health as the complete state of physical
well-being, and not just freedom from illness. In fact, a biopsychosocial
and spiritual approach to health and illness has been practised in African
societies for centuries, and it is only recently that the value of this ap-
proach has been appreciated by Western health care systems (Ataudo,
1985; Kubukeli, 1999).
Other bodies of literature support the effectiveness and culturally appro-
priate nature of traditional healing methods, with many researchers calling
for these methods to be developed and systematized in order to achieve
sustainable health equity (Abbo, 2011; Abdullahi, 2011; Hillenbrand,
2006; Mkize, 2009). In a foreword to the work of Incayawar, Wintrob, and
Bouchard (2009), Prince (2009, p. ix) discussed his research and experi-
ence of practising psychiatry in colonial Nigeria in 1958, noting how the
treatments offered by traditional healers in that country were as effective
as those proposed by the colonial biomedical health care system. He fur-
ther alluded to the fact that African herbalists were treating their patients
with herbs like Rauwolfia vomitoria, which has tranquilizing effects similar
to those of psychotropic medications. Prince interacted closely with one
healer who had travelled as far as England in 1925 to treat a Nigerian
official with psychosis (p. xii). This was long before chlorpromazine, one
of the first psychotropic medications, was introduced into Western medi-
cine. Prince regretted the opportunities lost by Western doctors when they
simply ignored African healers and labelled them “witch-doctors” and
“primitives,” rather than collaborating with them for mutual benefit. Other
forms of remedies for mental disorders that are employed by healers include,
but are not limited to, family therapies, psychotherapies in different forms,
and even psychosurgery, as practised by the Kisii ethnic group in Kenya,
to treat neurological and mental illnesses (Mbwayo, Ndetei, Mutiso, &
Khasakhala, 2013). In Tanzania, in their study of East African folk psy-
chotherapy, Rappaport and Dent (1979) pointed out that the traditional
psychotherapeutic techniques used by Tanzanian healers could be more
effective than Western psychotherapeutic methods.
Efforts have been made in the past in some African countries to main-
stream traditional and alternative treatments alongside modern medicine.
However, this mainstreaming has had no great success owing to the existing
governmental and institutional structures embedded in a colonial system
and the hostility of the Western-trained professionals described earlier in
this chapter, who feel superior to their traditional counterparts (Abbo, 2011;
Abdullahi, 2011; Hillenbrand, 2006; Nevin, 2006). Meanwhile, the current
push for global mental health will further alienate traditional healers be-
cause it takes a biomedically oriented and top-down approach and is backed
by powerful forces, primarily from Western countries (Summerfield, 2008).
Nevertheless, most rural Africans are still disposed towards their Indig-
enous forms of treatment. During my eight years of nursing practice in ru-
ral Kenya, I seldom saw individuals with mental health issues at the health
facilities. The majority of the locals preferred to consult traditional heal-
ers. For this reason, Africa needs to address psychosocial issues in its own
way, taking into account historical and colonial issues, as well as current
socio-cultural and political dynamics, in order to achieve a sustainable and
culturally appropriate form of care that indigenizes, decriminalizes, and
de-stigmatizes mental health.
Mental Health Research in Africa
Mental health research in Africa has remained minimal and entirely bio-
medical thanks to the lack of human and financial resources, the total
absence of traditional health experts in the formal health care system,
and the fact that, in cases of exploring traditional medicine, African re-
searchers, who are Western trained, face conceptual and methodological
challenges and/or dilemmas when attempting to understand systems that
operate from a non-Western epistemological and ontological paradigm
(Amer & Ahmed, 2012).
128 Mohamed Ibrahim
Most African countries spend less than 5 per cent of their health budget
on mental health, which has had a negative impact on the expansion of
this field (Mkize, 2009). However, one of the few and promising projects is
the African Health Care System based at the Nelson Mandela School of
Medicine, Kwazulu-Natal University, in South Africa. The project aims to
bring African traditional and Western health care systems together and en-
hance research, education, and training by integrating the two paradigms
or fostering collaboration between them (Mkize, 2009). This is in line with
the South African government’s attempt to bring traditional medicine on
a par with its biomedical counterpart by enacting an act of parliament
to legitimize and eventually regulate the sector (Nevin, 2006). Another
notable centre that is expanding research on African health care systems is
the African Mental Health Foundation, based in Nairobi, Kenya, which is
conducting extensive research within the larger Eastern and Great Lakes
regions of Africa (AMHF, 2012).
From a global perspective the continent has seen increased research ac-
tivity, albeit still minimal, in the past five years, chiefly due to the current
global mental health campaign and the role of international aid organiza-
tions. Since the publication in 2004 of the Global Burden of Disease by the
WHO, which placed mental illness as a leading cause of mortality and mor-
bidity, there have been concerted efforts to increase treatments, especially
in developing countries (WHO, 2008). These efforts have led to increases
in funding from major donors, primarily based in the Western world, with
Canada leading the way in providing big money for research through
Grand Challenges Canada. Since its inception in 2010, this funding body
has provided over twenty-five million dollars to thirty-five projects in low-
and lower-middle-income countries as a response to the global burden of
disease (Grand Challenges Canada, 2013). Grand Challenges Canada is
open to bold and innovative ideas and as a result has funded projects that
address human rights abuse in public psychiatric units and hospitals in the
state of Gujarat, India; another project, in Kenya, explored collaboration
between traditional and biomedical health systems.
When evaluating the contribution of these positive steps, however, it is
important to recall the vital role of traditional medicine as it is still prac-
tised in Africa. As the study by Abbo (2011) has shown, there is already at
least one traditional healer in every village in Uganda, or one for every two
hundred people across the continent. This statistic stands in stark contrast
to the severe shortage of Western-trained professionals, who are far scarc-
er, thus making the strengthening of the traditional system more realistic,
economically affordable, and sustainable in the long run.
The Role of Mental Health Users’ and Survivors’

Associations in Shaping Mental Health in Africa
Change is in the wind, thanks to the synergy created by the United Nations
Convention on the Rights of Persons with Disabilities, the emergence of
mental health consumer organizations, and the awareness created by global
mental health campaigns. Of importance is the work currently undertaken
by PANUSP and affiliate groups, who are resisting the status quo and en-
gaging civil societies, governments, citizens, and the media to educate, to
illuminate the gross human rights abuses taking place, and to work with
relevant stakeholders in addressing policy and legal frameworks that per-
petuate such violations (PANUSP, 2011).
Of course, the development of psychiatric users’ and survivors’ associa-
tions on the continent cannot be understood without taking a broader look
at the history and development of liberation movements in Africa during
colonial times and at the student associations, trade unions, and political
and religious groups that have played significant roles in the decolonization
process (Webster, 2007). However, it is striking that, despite the power and
the breadth of these movements, the voices of people who have been psy-
chiatrized have been absent until very recently, through the establishment
of PANUSP and its affiliates in a few countries (PANUSP, 2011). Meghan
Vaughan, a historian and critic of colonial psychiatry (cited by Edgar &
Sapire, 2000), spoke accurately to this situation when she said, “For the
most part … the voices of the mad cannot be heard by us at all. Historians
of Africa search constantly for the authentic ‘African voice’ in the colo-
nial archives and find it hard to uncover. Hearing the authentic voice of
the mad African in written documentation really does involve straining the
ears” (pp. ix–x).
But those voices are finally being heard, loud and clear, not from ar-
chives but from real people, breathing and shouting for their rights and
place in African societies. Their premier organization, PANUSP, formed
in 2005, is the first independent political movement for persons with psy-
chosocial disability in Africa (PANUSP, 2011). The history of psychiatric
users’ associations dates back to the late 1960s and early 1970s, especially
in the context of the Western world, but they are a fairly new phenom-
enon in the African continent. Specifically, PANUSP was inspired by the
World Network of Users and Survivors of Psychiatry, headquartered in
Denmark (PANUSP, 2011).
In the mid-2000s PANUSP and its affiliate members played an active role
as part of the global disability networks in drafting the UN Convention
130 Mohamed Ibrahim
on the Rights of Persons with Disabilities (United Nations, 2006, art. 18).
The convention was adopted by the United Nations General Assembly on
13 December 2006 and is heralded as the single most important human rights
treaty of the twenty-first century. It is considered a landmark in reframing
the needs and concerns of those living with disabilities with respect to hu-
man rights, and it represents an overarching human rights framework that
broadly and specifically addresses issues of discrimination, torture, social
and economic justice, access to health, and education for the largest minority
in the world: the disabled community (Kayess & French, 2008). Specifically,
regarding those living with psychosocial disabilities, the convention declares
that disability is not an individual medical tragedy but rather an evolving
concept and a social phenomenon that arises due to the interaction between
persons with impairments and the attitudinal and environmental barriers
that hinder their full and effective participation in society on an equal basis
with others. Solutions, therefore, lie in addressing those barriers. The accord
is also clear about individual consent to treatments and the avoidance of
harmful, torturous, and degrading treatments of persons living with dis-
abilities (or any other persons, for that matter) (Minkowitz, 2007).
The convention obligates governments around the world to uphold the
dignity and human rights of all people with disabilities. Today PANUSP
is a nascent and emerging political and social force with representatives in
nine African countries (and it is still growing). It embraces a human rights–
based approach as a foundation and a tool for advocacy and development.
The network functions as a mouthpiece for under-represented and stigma-
tized persons at all levels of African societies (PANUSP, 2011).
Although the organization is still young, with limited resources and
membership in only nine of the fifty-three African countries, its input in
terms of policy and advocacy is already being felt locally, regionally, and
globally. On the international front PANUSP is actively collaborating with
the World Network of Users and Survivors of Psychiatry and other global
allies in providing a strong voice for persons with psychosocial disabili-
ties and in campaigning for the ratification at the global level of the UN
Convention on the Rights of Persons with Disabilities (Robb, 2012). In
the local and regional African context, PANUSP is bringing much-needed
fresh ideas to a sector that has remained largely unchanged since colonial
times and in which mental health professionals have been the sole voice for
those with lived experience (PANUSP, 2011). Guided by the convention
and with a core focus on human rights and social justice, the organization
is calling for a change in policies and practices around mental health and
for a shift away from a biomedical paradigm.
Specifically, PANUSP’s use of psychosocial disability discourse aims to

address the socio-economic exclusion, stigma, and human rights abuses that
have dogged the sector since colonial times. In an attempt to redefine and
decolonize mental health practices, PANUSP is calling for the elimination
of mental health legislation across the continent, terming the Acts punitive,
colonial, and unnecessary. Through PANUSP, multiple voices are demand-
ing mental health policy and services that democratize mental health. They
also question the legitimacy of biomedicine as the de facto voice for those
with psychosocial disabilities (PANUSP, 2011).
Owing to the active role of PANUSP and its affiliated disability networks
in addressing human rights abuses, the continent has seen increased media
coverage on this issue in the last five years. Of note are the award-winning
documentaries Locked Up and Forgotten (by CNN), about the ill treat-
ment of psychiatric patients in Kenya’s notorious Mathari Mental Health
Hospital, and Condemned, a short documentary by independent journalist
Robin Hammond about the plight of mentally ill individuals in psychiat-
ric hospitals, penitentiaries, and homes in several African countries. Both
films graphically attest to the abuses taking place in psychiatric and peni-
tentiary institutions (Hammond, 2010; McKenzie, 2011). In response to
CNN’s documentary, the Kenya National Commission on Human Rights
audited the country’s mental health system from a human rights perspec-
tive. In its final audit, Silenced Minds: The Systemic Neglect of the Mental
Health System in Kenya, the commission decried the archaic and colonial
nature of the institutions, and the country’s lack of mental health policy,
which is partly responsible for the current sorry state. The audit further
called on the government to address these failings by employing a human
rights framework (KNCHR, 2011).
Changes to colonial mental health Acts are taking place in some coun-
tries thanks to the advocacy of users’ and survivors’ agencies, as in Zambia
where the Mental Health Users Network of Zambia succeeded, with the
support of other disability and civil rights movements, in repealing the
colonial Mental Health Act of 1951, which had basically encouraged and
legalized violence against those perceived as having or living with mental
illness. The network is currently working with the Zambian Ministry of
Health and other stakeholders to draft new mental health legislation based
on human rights, better treatment, and social inclusion, a huge achieve-
ment for a nascent organization (Power International, 2013). Such encour-
aging developments are slowly being felt in some parts of the continent
where the voices and opinions of those with lived experiences are heard
and appreciated. The Kenyan chapter of Users and Survivors of Psychiatry
132 Mohamed Ibrahim
(USP) is currently collaborating with local and international human rights

organizations and disability networks to provide civic education on human
rights, capacity building, and a platform for those with lived experience of
mental illness. They are also actively involved in advocacy, engaging the
legislature on laws and bills that are of concern, and in monitoring any
activities that are detrimental to the well-being of those with psychosocial
disabilities (USP Kenya, 2013). However, the liberation journey is not with-
out challenges as evidenced in the case of Nigeria, where the Mental Health
Bill (2003) failed to garner enough support in parliament. Nigeria, the most
populous African country, still maintains the colonial Lunacy Act of 1958
(Westbrook, 2011).
Importantly, PANUSP has made a strong political statement by linking
the historical nature of colonial psychiatry and the current global mental
health campaigns in an attempt to politicize and reframe the psychosocial
debate away from an individualized, pathological syndrome to a psycho-
social disability discourse in order to address mental health from wider
socio-economic and human rights perspectives. Likewise, the powerful
statement “nothing about us without us” (Kayess & French, 2008, p. 4)
proclaimed by disability advocates during the drafting and ratification
of the UN Convention on the Rights of Persons with Disabilities, un-
derscores the active role played by persons with psychosocial disabilities
in charting and redefining a new progressive course for their well-being.
PANUSP and other psychosocial disability networks in Africa have shown
that they are up to the task of working collaboratively with stakeholders
on the continent to address mental health appropriately from a socio-
economically informed, human rights framework to decolonize mental
health policy, practice, and education.
NOTE
1 Psychosocial disability, as stated by the United Nations Convention on

the Rights of Persons with Disabilities (United Nations, 2006, art. 18)
and the World Network of Users and Survivors of Psychiatry (WNUSP),
refers to those who live with mental, intellectual, or sensory impairments
that in interaction with various barriers may hinder their full and effective
participation in society on an equal basis with others (Robb, 2012). In this
chapter I will use the term psychosocial disability interchangeably with mental
illness to characterize the status of psychiatric survivors and users of mental
health or psychiatric services.
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5 Dancing with Complexity: Decolonization
and Social Justice Dialogues
r u by p e t e r s o n a n d s a b i n a c h at t e r j e e
Introduction
In recent years much has been written about the destructive impacts of
colonization and the need for decolonization in Canada. Rooted in resis-
tance movements and taken up in academic circles, the meaning and work
of decolonization has at times shifted uncomfortably between inspiration
and appropriation. This chapter brings together the voices of Ruby, an
Indigenous woman from the Kwakwaka’wakw Nation, and Sabina, a mixed
(Indian / German) woman of colour, as we share our perspectives on de-
colonization in Canada. Our stories and teachings will demonstrate how we
strive to uphold our cultural values and beliefs in our practice of communi-
ty wellness, advocacy for social justice, and healing for marginalized people.
We will show how the deep social justice components of decolonization can
act to restore connection and respect in the areas of knowledge production,
community wellness, and mental health practices, thereby restoring whole-
ness. This is significant because in Indigenous teachings wholeness is the
foundation; there is an understanding that everything is connected (Hart,
2002; Kelm, 1998; Lane, Bopp, Bopp, Brown, & Elders, 1985). As Shiva
writes, “human beings are part of Vasudhaiva Kutumkam or the earth fam-
ily. As a part of the earth family, one participates in the democracy of all
life” (Mies & Shiva, 1993, p. 265). We find wholeness in knowing that we
are connected and “interact in harmony with [nature’s] rhythms and pat-
terns, intellectually and emotionally” (p. 265). There is a strong correlation
between honouring the decolonization of practice and praxis and having
community wellness for all involved: “Connections emerge through accep-
tance, respect, understanding, love and compassion” (Marsh, 2010).
Decolonization and Social Justice Dialogues 139
We have chosen to write about decolonization as a complex dance in

order to offer insight into the shifting roles that we take on as we strive to
restore health and wellness to ourselves and to our practices as community
members, social service providers, colleagues, and scholars. To us, working
together has truly been like dancing. Knowing when to follow one another’s
lead, when to find a rhythm to which we can both move in our dialogues
and in our long-distance collaborations, and when it is time to dance indi-
vidually has been an amazing part of this process. Both of us come from
traditions of storytelling through dance and know the power that is held
in the embodiment of complex history through sacred movement. Grief,
trauma, hopefulness, and celebration are held in our stories, in our bodies,
hearts, and minds.
We are sharing our stories of how we stay committed to social justice
advocacy and the continued creation of safe or safer spaces for people to
speak of the history of pain and injustice. We offer the ways in which we
maintain our own mental health and motivation while effecting change in
structurally violent silencing systems. By sharing these stories we aim to
inspire hope and determination for many more to speak up and be sup-
ported in their efforts to ensure that active participation in decolonization
and social justice is always a part of academic and community health and
wellness practices. As part of our process we are choosing to use language
that may differ at times from a Western academic style, and we have instead
chosen to speak in ways that hold home for ourselves in our stories. By
sharing stories in this way we are recentring our own knowing and experi-
ences and offering them to our loved ones who are also on this journey.
Who do we mean by “our loved ones”? We certainly do not mean only
those who are known to us in this moment. These stories are shared for
other Indigenous and racialized people who are also finding their way and
their voices within the challenging work and amazing possibilities of de-
colonization. Holding in our hearts the people for whom – and to whom –
we are writing this chapter has helped give it a far more personal shape and
meaning for us and has provided its own profound healing even as we write.
What do we mean by decolonization? We recognize that this term is used
in many different ways. According to Waziyatawin (2008), “colonization,
by its very nature, is antithetical to justice. Therefore, complete decoloni-
zation is a necessary end goal in a peaceful and just society. This would
entail overturning the institutions, systems, and ideologies of colonialism
that continue to affect every aspect of Indigenous life. In a nutshell, we all
must rethink our ways of being and interacting in this world to create a
140 Ruby Peterson and Sabina Chatterjee
sustainable, healthy, and peaceful coexistence with one another and with
the natural world” (p. 13).
Decolonization has been understood as bringing about “the repatriation
of Indigenous land and life; it is not a metaphor for other things we want
to do to improve our societies and schools” (Tuck & Yang, 2012, p. 1). In
this way Tuck and Yang remind us of the danger of dilution and misuse
of the word decolonization. Decolonization is an act of understanding the
layers of losses ranging from land to language and culture to place and
purpose in the world (Brown, McPherson, Peterson, Newman, & Cranmer,
2012). It is knowing the value of one’s own soul, feeling the resonance, and
learning to listen to it again. It is the reclaiming of trusting our knowing.
Tuck and Yang emphasize that decolonization truly should not be under-
stood or used as a metaphor to depoliticize and minimize the systemic
change needed, because to do so comes at immense cost to all. We encour-
age readers of this chapter to hold this framing of decolonization in mind.
Decolonization must involve changing systems to make space for all
knowing. It makes room for understanding wellness as the connection
between all things, not just the relationship connections between human
beings (Lane et al., 1985, p. 26). It means intentionally remembering and
restoring the teachings on the way to be in relationship with all of life,
which is sacred (Duran, 2012) Decolonization is complex, holding many
nuances of being and understanding.
This chapter is written from the perspective that prior to colonization
we all lived with a wisdom of sacred reverence to the interconnectedness
of all life (Lane et al., 1985), and in balance and harmony with all the ele-
ments (air, earth, fire, water, and ether). In Hinduism these are referred to
as the Pancha Mahabhutas, or five great elements, that hold the intercon-
nectedness of all of life (though this needs to be troubled, given the larger
structures of caste that permeate Hinduism)1. These teachings of natu-
ral law are present in all our ancient cultures (Duran, 2000, 2006, 2012).
They are woven into many values and daily practices of First Nations’ cul-
ture, traditions, and relations in Canada because colonization here is only
hundreds of years old – younger than in most other parts of the world.
Pre-colonial wisdom is still present in Indigenous songs, dances, and tradi-
tional languages. In this chapter we explore the ways in which we can call
on this knowing to address issues of mental health and social justice and
actively contribute to decolonization, with the intention of reconnecting
our bodies and minds to our spirits and hearts (Archibald, 2008; Duran,
2000, 2006; Duran & Firehammer, 2017; Kelm, 1998).
Located in the traditional lands of the First Peoples of Canada, we

both feel the need to centre our stories within this land-based context. The
repatriation of lands and the honouring of Indigenous history, cultures,
and peoples must be at the centre of how we work for change, and this
is where the complexity resides. This does not mean erasing other stories.
This means laying our stories bare and being mindful of our variously situ-
ated histories and relationships to colonization. We all come from differ-
ent backgrounds. For the First Peoples of Canada the land has continued
to hold our stories since time immemorial. For those of us who are non-
Indigenous the roots of our hearts stretch back elsewhere; some of us are
the first generation of our families to be born here, others’ stories may
reach back generations, while still others have only just arrived. Some of
us know so much about our histories and families, and others have histo-
ries that have been buried deeply under colonization, enslavement, warfare,
and other forms of violence. For those of us who are not Indigenous to
this land there is an inherent responsibility to honour the knowledge, resil-
ience, and claims to sovereignty of Canada’s First Peoples. Whether we are
Indigenous or we or our ancestors came here by force or by choice, or some
combination thereof, each of us holds within us stories of what it means to
be here in this colonized land.
Ruby’s understanding of decolonizing practices comes from years of
lived experience, education, and research. Having a personal stake in un-
derstanding, she has asked many questions to understand the individual,
family, and community story of colonization and intergenerational trauma.
She also researched Indigenous traditional knowledge for healing teachings
and practices (Marshall, Peterson, Coverdale, Etzel, & McFarland, 2014).
This was not always popular in her workplaces or academic environments.
She experienced ostracism, minimization, and sometimes outright hostil-
ity for questioning or challenging Western notions of counselling theo-
ries and practice. There were times when her professionalism and abilities
were brought into question. She was banned from properties for speak-
ing up about historically damaging systemic policies that are still played
out in systems today. However, she is not the first to experience this. In a
foreword to Freire (2004), Donald Marcedo identifies how Ann Berthoff
denounces Friere’s ideas, saying that he “went on and on about pedagogy
of the oppressed, without a clue about the role of dialogue” (p. xiv). Ruby
also recalls conversations within the academic environment minimizing as
“controversial” the writing of Indigenous psychologist Eduardo Duran on
post-colonial psychology and decolonizing practices.
During her graduate studies in the University of Victoria’s Aboriginal

Community Counselling Program Ruby engaged in specific efforts to de-
velop her decolonizing practices, learning, and research. With the guidance
of teachers she and her cohort established a means of Indigenous-centred
learning (ICL) and ways to incorporate traditional knowledge into coun-
selling practice (Marshall et al., 2014), developing their Indigenous and
cultural lens to critically examine Western theories and their usefulness
in Indigenous communities. They began identifying which Western ap-
proaches correlated with Indigenous culture and wellness, and as an inten-
tional act of decolonization Ruby “married” these Western theories with
Indigenous traditional knowledge to develop a culturally appropriate coun-
selling model.2 “We learned to intuitively connect to our traditional knowl-
edge. We were challenged to embrace a sacred learning process, where we
call on more than just our thinking knowledge to learn, using our heart and
spirit knowledge as well. This became the foundational learning” (Ruby, in
discussion with Sabina, July 2013).
As a woman of mixed race and the daughter of immigrants to Canada,
Sabina has worked to ensure that she and other community service provid-
ers, activists, students, and scholars trouble the systemic and structural nor-
malization of colonization. Through more than twenty years of community
service provision and thirty years of activism, it has become clear that chal-
lenging ourselves to disrupt colonial narratives and systems through our
own reflective and reflexive work, and changing how we learn and under-
stand the history of this country, is central to the work of decolonization.
Decolonization must be at the centre of everything we do. Many of us
come from traditions of balancing thought, spirituality, and action. We
must remind ourselves that this knowing is crucial when we commit to de-
colonization. To hold ourselves accountable and to continue to work for de-
colonizing change necessitates grounding ourselves in our own traditional
teachings (and critiquing those teachings when they oppress others) so that
we stop supporting and contributing to systems based on greed, violence,
and genocide. These are guiding principles in Sabina’s work in community,
activism, and scholarship.
This chapter has been organized into three parts. In the first part we
share a dialogue focused on why it feels important for us to write this to-
gether, what it means for our own well-being, and how our connection of-
fers support for our work. In the second part we reflect on what draws us
to this work by sharing some of our stories. Ruby explores the importance
of reclaiming healing and community wellness in a way that honours and
upholds the values and principles of Indigenous traditional knowledge and
dedication to self-reflection and action. Sabina speaks to the responsibility

of non-Indigenous racialized people to hold themselves accountable – for
how they benefit from and contribute to colonization – in order to truly en-
gage in decolonization and social justice. Her reflective piece includes some
insights from community-of-practice discussions held with other people
of colour who were exploring the ways in which they actively contributed
to decolonization. Finally, in the third part we share a second dialogue in
which we explore what is at stake for individuals and communities who are
engaged in decolonization.
Knowing that what we believe has an impact on how or what we do, we
invite readers to reflect on how they decolonize their values and beliefs
and to re-search what they know. Thank you for joining us on this journey.
Gilaks’la / Dhonnobad (We share one breath / Thank you).
Part 1
The work of creating social change can be isolating and emotionally dif-
ficult. As we implied in the introduction, committing to decolonization
and social justice has often resulted in confrontation3 – open or covert – or
dismissive reactions. The work of decolonization and social justice thus
requires great strength and resolve. When we first met, we instantly rec-
ognized the common intersections within our work and began supporting
each other. This support has often felt like a lifeline. We hope that by shar-
ing some of our stories about how we strengthened our own mental health
by creating a mutual support system, we will bring to light the need for cre-
ating safety and community when doing the work of decolonization and
social justice in the academic community and in organizational settings.
Ruby
My ancestry includes ‘Namgis, Kwagiutl, Katzie, and Mohawk on my

mother’s side and Irish on my father’s. I was raised in the ‘Namgis tradi-
tions and territory of Alert Bay, British Columbia. My work is centred in
Indigenous knowledge and focuses largely on the healing of grief, trauma,
and abuse, through counselling and community wellness. For me, the pur-
pose of research is to learn how to make space for incorporating sacred
work into my practice. My work developed from my own healing and learn-
ing, which all began when I came to understand the depths of wounding
that the residential schools and Canada’s assimilation policy have had, and
still have, on me, my family, my community, and the people of Canada. This
knowledge led me to keep searching deeper, to seek healing. As I learned,

I began to see a disconnection in the counselling methodologies and heal-
ing for Indigenous people. Digging further, I began to focus on under-
standing the ways in which Indigenous cultural teachings could help. As I
learned, I shared, with the intentional goal of giving space and valid voice
to Indigenous traditional knowledge. In the metaphor taught to me by two
of my Elders and teachers, Wa’ta (Christine Joseph) and Larry Emerson,
traditional knowledge became the foundation for housing4 the knowledge,
values, and beliefs that I carry within myself and into my life and work. In
my learning and experience I hold the intention of bringing in the voices of
the teachings that were in place for Indigenous people prior to colonization,
from the location of my own Kwakwaka’wakw teachings.5
Sabina
I am a woman of colour whose parents are Bengali and Bavarian. I was

born in the traditional lands of the Anishinaabe, Haudenosaunee, and
Huron-Wendat peoples. As the daughter of immigrants, I have been very
aware of the complex space of being a woman who benefits from coloniza-
tion, whose parents came to Canada believing it to be a country in which
their mixed-race children could live free of judgment and harassment, and
of the responsibility of actively participating in decolonization, which has
been woven into my social justice activism and my academic research.
My own navigation of discrimination and inequity based on gender, ori-
entation, race, and ability has resulted in a clear commitment to research
and community-development initiatives that respect and value the lived
experiences of people who have been multiply marginalized and minori-
tized. I have spent much of my adult life exploring the true meaning of
solidarity within social justice movements. This is especially important as
we navigate the different moments or positions of privilege that we have
within colonization. As non-Indigenous people, we must work intention-
ally and intensively to support and contribute to decolonization. We can-
not challenge structural violence and create substantive change without
addressing the deeply embedded and destructive impact of colonization on
every aspect of education, public policy, and community-service provision.
For this reason, I am strongly committed to contributing to decolonization
in my actions, community work, and public scholarship.6
Throughout this chapter the term settlers, when used to refer to people
of colour or to racialized people, is used tenuously, as a place holder,
because it is a term that does not fully convey our diverse relationships
to colonization as well as the specifically anti-Black, white-supremacist

frameworks that are an inherent part of settler colonialism. As will be seen
in the chapter, these relationships are subject to continuing community-
based discussions. The work of decolonization continues to grow and will
always require new ways of articulating the diversity of our connections
and relationships to colonization.
Developing Connection for Our Own Well-Being
In the past few years we have found renewed strength from working to-
gether. Through that strength we have been able to speak more confidently
about burning issues, especially in environments where these conversations
are not welcome. In preparation for writing this chapter, we recorded some
of our conversations during the summer of 2013. The following dialogue
holds our reflections on what it was like to connect in this work.
RUBY: Both of us share a passion for really looking at the trauma in our
communities and its connection to structures and colonization. That’s
what made us go “yeah!” when we first met – we have been advocating
for being able to tell the story within the context of our history and
our environment.
SABINA: I think that we share a real desire to work respectfully and tirelessly
for change. That means that we have had to be strong. We have been
truth seekers and truth speakers in hard environments. We tried to work
with intentionality and integrity. And we have shared the stories we have
longed to hear, stories about hopefulness, courage, and truth telling.
RUBY: I think the other thing we share is that sense of learning by teaching.
We have embraced the challenges of making space for a different voice.
We are coming from different places, but we both made a promise some-
where along the way in our lives to step up and hold space for voices that
are often silenced.
Stories and Complexity
Our dialogue led to discussion of the complexity that life holds and, spe-
cifically, that we hold in opening awareness in ourselves and in the world
around us.
SABINA: One of the real joys in working with you is that there is a deep
understanding of complexity – not as an inconvenience but as the part
of every story and every person that makes them shine. It is a strength
and a necessity. I have really appreciated talking with you about what
happens when that complexity is simplified, erased, silenced.
RUBY: And the pain of that.
SABINA: And the violence that happens when our identities are torn apart
within other people’s sense making.
RUBY: Or are dismantled.
SABINA: When people don’t live with lots of complexity, or they cannot
identify it in themselves, it makes our stories and experiences seem
to be something that they want to control to understand.
RUBY: We all walk with a lot of complexity – depth of knowing ourselves,
and the purpose and gifts they hold – but not everyone is awake to it. It is
about a deeper awareness that requires us to slow down and listen not
just with our mind. This deeper awareness can scare people sometimes,
and they feel uncomfortable.
Being Silenced, and Self-Doubt
The minimizing and doubt of our knowledge deeply affects us.
SABINA: If we have to silence parts of ourselves, it deeply affects the work

we can do. It affects how we can breathe together. It affects our ability
to be hopeful, and our mental health. And it certainly affects how we
can respond to, plan for, and effect change. Silence and division are
such powerful colonizing tools. It is heart-breaking when we are in places
where people talk the talk of decolonization or intersectionality but don’t
seem to understand systemic violence and how they actively contribute to
it – as if it is only something that exists in theory or is removed from their
own privilege or complicity. It is important to be aware of how much space
I take up, and the difference between taking up space and holding space.
RUBY: That feels like a really core piece of the work that is being done here
– that lifelong commitment to reclaim space for our voices, and know-
ing when to hold spaces open so others who would not otherwise claim
their place can feel they have a right to be heard, seen, acknowledged,
and accepted as valid.
Grounding Our Work
SABINA: It is so important to recognize how people hold space differently.

We believe that there is abundance, and we try to avoid a model of
scarcity and competition. Being able to connect with one another has
helped to strengthen our commitment to do things differently – even when
we have met huge resistance from others. The work of service provision,
activism, and working for change in our communities needs to be filled
with joy and hopefulness.
RUBY: And a little bit of fun! And that creativity for holding sacred space for
us to have meaningful connection goes beyond the mind. It goes to the
soul, to our spirit, to our physical wellness and integrates all of who we
are, not just our mental health.
Self-Reflection and Accountability
SABINA: We must understand that there is much more to mental health

and wellness than what is captured by a Western medical model. Having
people see us, truly see us, without having our spirits or selves erased or
silenced is a deep part of this work. As a person of colour, it is essential
to be aware of the space I take up when working for change, and to think
deeply about my own position, what influences my actions and opinions,
and how my social interactions are constructed. As someone who is af-
fected by colonization very differently than someone who is Indigenous,
the work in contributing to decolonization that is most appropriate for me
to do is that of an ally – to listen and support a vision of how things can
change, and what needs to be challenged, and to find ways to come to
action that do not subvert or take leadership away from Indigenous peo-
ple. We cannot simply claim to be allies and expect people to welcome us
and place their trust in us.7 We must earn it through our actions, by prov-
ing that we are committed and that we are holding ourselves accountable,
especially through challenging and changing big, overriding systems.
RUBY: How I understand decolonization practice is best said by Axu
Alfred: “What is it that we have lost? It is that which we need to restore”
(community discussion, n.d.). As colonized people we have forgotten
many cultural teachings and meaningful connections, and with it our
confidence, our voices, and our place in the wheel of life.8 These things
we must restore. It is my intention to create safe, sacred space for us to
learn and grow these gifts and abilities and to “remember to remember”
the teachings that are within our culture, language, songs and dances,
and bring it forward to be relevant for loved ones in today’s world.
SABINA: How I understand my role in decolonization is based on key
issues: we are uninvited people on stolen land; we have benefited and
continue to benefit from the genocide and violence inherent in both
historic and ongoing colonization; Indigenous sovereignty must be real-

ized; and we bear a responsibility to participate in the dismantling of
colonial s ystems while respecting, acknowledging, and never displacing
Indigenous leadership.
RUBY: One of the other pieces that is really important for us to acknowledge
in this is the importance for us of how, in connecting with one another,
we became one another’s allies. It really addressed the issue of isolation
for both of us: to have a kindred spirit in the room, to know that you can
speak and be heard by someone.
SABINA: Neither of us is invested in being an “expert” – we certainly don’t
have all the answers, but we certainly have some good questions to ask.
RUBY: We may not be the experts, but neither do we need to invest in the
idea that others are. Our voices need to be heard. That is the dance that
we all need to be engaged in: seeing and honouring complexity, holding
space, and speaking out. For you and me, the strength of our connec-
tion lies in our agreement that both the academic and the practical work
of community and mental health services need to be further troubled
to understand decolonization processes. It is well intended, some say,
but the truth is that any effort to look deeper is met with resistance, be-
cause the reality is that being in a position of “helping” the less fortunate
maintains the helper in the position of the more fortunate, a position of
privilege. What would happen if we were to help from a position of naming
the privilege and the social injustice of colonial policy? The “lesser” would
be empowered. The powerful would have to share. It is easier to maintain
the sense that a person is “broken” (a term I have heard numerous times
in the field), and we are the ones to come in and fix them. Decolonization
is to tell the story within the context of our history. A way to explain the
normal and natural responses to systemic violence and trauma, and the
brilliance of people who develop defence mechanisms to defend them-
selves from the crippling pain that soul wounds instil. This is a decolo-
nized approach.
Support through Deep Meaningful Dialogue
Great strength and well-being is gained when we connect with another

person or group to have deep meaningful dialogue about the challenges,
struggles, hopes, triumphs, and dreams that we all share. It reminds us that
we are not alone, and it challenges us to stay in this place of deep soul
searching and justice- and peace-making. When we use connection to help
build ourselves up, to support one another, and not to tear one another
down, we are able to find different ways of challenging and resisting struc-
tural and systemic violence.
Part 2
In writing this chapter, we were very aware of all the languages and spaces
we were navigating. We each speak from different spaces and in very dif-
ferent ways and still find great comfort, strength, and inspiration in one
another’s stories. As we move into this section, we shift the focus to our
individual work and stories and hope that each of our voices will be heard
more clearly as a result.
Ruby
Years of practice and research have helped me develop my skills to my pres-

ent-day approach, which is centred in my Indigenous traditional knowl-
edge. However, this drive to learn began with personal experience: visiting
my grandmother and grandfather, picking berries, hearing stories by Elders,
and attending many ceremonies. This vernacular learning has guided my
life. It is one of the privileges of having been raised within my own cultural
community. But it was not all loving and nice.
I learned about poverty, violence, addiction, and the pain of shame for
being Indigenous. And, like many, I experienced great shame about who I
am. I left my community, with a vow to never return. I joined the military
and travelled extensively, and I was living and working in Ontario when I
learned about Indian residential schools. This was a time of intense unrav-
elling of what I believed to be true.9 I grew up right across the street from
St Michael’s Indian Residential School. I played in it and attended school
there myself after it had closed and our ‘Namgis Nation re-opened its
doors as a band school.10 However, it was the movie Where the Spirit Lives
(Haldane & Jordan, 1989) that changed everything for me. I returned home
to my family, my culture, and myself. I took a job at the U’mista Cultural
Centre11 where they were presenting an exhibition about residential-school
survivors. They had found hundreds of photographs of children whom
they could not identify, so if anyone identified a child to us, we were asked
to interview the person who recognized the child (in most cases these peo-
ple had also attended the school or were a family member). During the ex-
hibition I heard many painful stories. What haunted me was the theme of
adult survivors saying that they did not know how to parent their children
because they themselves had not had the parenting they had needed. Often
we sat together, crying at the painful stories. Their stories and my own
are the reason I do this work with passion and commitment today. There
are many survivors of that residential school who went on to advocate
for community healing, who worked in schools, prisons, and courthouses.
They became teachers, leaders, and advocates. They showed me that one
can have a wounded soul and still offer healing, and they taught me that
there is great strength and healing in our culture.
On 18 February 2015 the St Michael’s Indian Residential School in Alert
Bay was torn down. It was not an easy process, and there were differing
views about it (Kurbis, 2015). It brought up many painful memories, and
emotions ran high once again throughout our community. The ones who
attended the school and died in pain and suffering, those who attended and
fought back to reclaim a good life, those who did not attend but feel the
reverberations of the pain that ripples through our generations, and those
who are still to come and will need the support to continue to heal from
the devastating impact of a violent policy aimed at assimilating Indigenous
people to “get rid of the Indian Problem” (Royal Commission on Aborigi-
nal Peoples, 1996) – I pray your voices will be heard. It is also a reminder
that we have not gone! We are not dead! We are alive and resilient, and our
culture and teachings are still here. It is for this I speak, I walk, I advocate,
with as much love and compassion – and ferocity when needed – that I am
able. I know I am not the only one. I am one of many. And my prayerful
intention in writing this is to offer the teaching of Galgalpotla (“hold one
another up,” a word taught to me by Elder Peggy Svanvik). Our culture
and teachings matter; it makes a difference when our loved ones reclaim
our knowing. Having loved ones share with me has helped me immensely.
I pray that more of us will reclaim our knowing and bring it into our ev-
eryday practices. Regardless of whether or not others understand it or find
validity in what we do, we know that it is making a difference, and we
must continue and support one another in this continuing. This is what
I humbly offer in my life, my practice, and my writings as my commitment
to decolonization.
In the words of teacher Teresa Marsh (2010), “we need to feel connected
to others in order to love, understand, grow, give, receive, and heal. Hence,
my ancestors sat around that sacred fire in their healing circles with the
knowledge that we are all connected to the hoop of life. On that hoop of
life there is a place for everyone, enough for everyone, and healing for all.
We need those circles. We need to connect at levels on which the spirit can
be nourished and sustained” (p. xvi).
If the antithesis of colonial trauma and violence is decolonization

– through acts of re-integrating connection, peace, and harmony into
our lives, families, communities, and structures – we need to reclaim the
knowing that we had prior to colonization (Duran, 2006; Duran & Duran,
1995; Marshall et al., 2014; McCormick, 2009; Wilson, 2008). Therefore, it
makes sense for us to actively engage in intersecting with Indigenous tradi-
tional knowledge in the advancement of health and wellness (Duran, 2006;
Marshall et al., 2014; McCormick, 2009) because it offers the deep connec-
tion that we seek in our practice (Duran, 2012; Marsh, 2010). Today many
of us are reclaiming this depth of knowing that spans the mind and moves
into heart, body, and spirit. Still, as a student, researcher, and counsellor, I
did not always know or understand how our Indigenous traditional knowl-
edge fit into the vision of helping our loved ones heal and rejuvenate, and
to learn it took tenacious research – academic, experiential, and vernacular
(Marshall, Emerson, Williams, et. al., 2017). It is a journey that has not
always been graceful, as I relearn the dance of complexity, of bringing our
Indigenous traditional knowledge into modernity. This is my commitment
to decolonization and social justice.
Sabina
I cannot remember a time when I did not identify as an activist. Growing up

in a house with two very different cultures, Indian (Bengali) and German
(Bavarian), I learned that stories did not have to compete to be true; that is,
the filters through which my parents, my siblings, and I saw the world could
diverge greatly and yet still feel as though they held truth. I learned about
the necessity of complexity. I am grateful to my parents for their prioritiz-
ing of travel to India and Germany to ensure that we formed strong con-
nections to our families, histories, and cultures there, and for ensuring that
we also travelled across Canada so that we developed a great appreciation
and love of the country in which we were growing up.
I am deeply indebted to the writings of Indigenous and racialized people,
as well as some white12 settler scholars, about the responsibility that we all
have in challenging and ending the ongoing colonization of this country.
However, the discourse of settler responsibility in Canada focuses almost
exclusively on white settlers, erasing the role of racialized settlers in both
the continued colonization and the decolonization of Canada. Where, then,
are the voices of people of colour within discussions of settler responsibil-
ity? How do we acknowledge our roles in colonial sense-making and the
land theft, displacement, and disenfranchisement of Indigenous peoples?

What work of social justice solidarity is necessary for people of colour to
actively participate in and contribute to the work of decolonization? In
some ways it has been “natural” for people of colour in Canada to be drawn
to post-colonial theories as a way to contextualize and position themselves
and their work within anti-racist frameworks in Canada. However, this po-
sitioning obscures the fact that colonization has not ceased in Canada, and
it provides racialized settlers with a sense of commonality with Indig-
enous people that belies our role in, and complicity with, the Canadian
colonial narrative.
Linda Tuhiwai Smith (1999) wrote that decolonization must entail “tak-
ing apart the story, revealing underlying texts, and giving voice to things
that are often known intuitively” (p. 3). We too need to take apart the sto-
ries of immigration and human rights protection that have helped shape,
explain, and, ultimately, depoliticize racialized settler identities in Canada.
Lawrence and Dua (2005) posit that, instead of challenging colonization,
Canadian anti-racist theory and action have actually reinforced colonial
agendas and practices. By focusing on common and shared experiences
of racism, anti-racist frameworks have unintentionally created spaces
in which those commonalities overshadow the ways in which people of
colour benefit from colonization. This has served the colonial narrative
well because it relies on an assumption that history starts with us/our im-
migration or arrival, which negates the history, the prior claim to land and
citizenship, and the very existence of Indigenous peoples.
The division and ruling of minoritized and marginalized people is
a common mechanism of the colonial agenda. In fact, a key aspect of
the ongoing colonization of Canada is the way in which racialized people
have had to compete and distance themselves from other communities –
especially those treated most poorly by white settlers – in order to survive.
Chazan et al. (2011) posit that “in Canada, particularly, multiculturalism is
itself a politics of settlement – a story tied closely to the appropriation and
settlement of space and meaning, and to securing the material and sym-
bolic contours of the state” (p. 1). The 1969 White Paper articulated clearly
that the policies of the P.E. Trudeau government were meant to assimilate
Indigenous people and render them “just another chip in the [Canadian]
cultural mosaic” (Miller, 2004, p. 258). Our own resistance to assimilation
should not lead us to believe that it is the same as the forced assimilation
of Indigenous people. Rather, it should make us fully aware of the need
to speak out against this assimilation, to see how our identities have been
shaped in relation to both white settlers and Indigenous peoples, and to

work for change.
As Walia (2012) writes, “being responsible for decolonization can re-
quire us to locate ourselves within the context of colonization in compli-
cated ways, often as simultaneously oppressed and complicit.” Too often,
common experiences of poverty, racist attack, and marginalization have
resulted in a “bifurcated consciousness” (Wollford, as cited in Regan,
2010), in which settlers of colour have spoken out about our own oppres-
sions while not recognizing or articulating our participation, in turn, in
colonial mandates that should be abhorrent to us.
Settlers of colour cannot afford to linger in a liminal space of compla-
cency in not being white, nor can we allow our own experiences of racism
and social exclusion to suggest that we are not also implicitly responsible
for continued colonization and colonial violence in Canada. As Tuck and
Yang (2012) have written, “there are white settlers and brown settlers, and
peoples in both groups make moves to innocence that attempt to deny
and deflect their own complicity in settler colonialism” (p. 10). Whether
within activism, the academy, or the ongoing work of social justice soli-
darity and decolonization, we must find ways to disrupt, challenge, and
change the stories, legislation, and policies that hold colonization so firmly
in place in Canada.
c o l l a b o r at i v e i n q u i ry
I have been able to engage in collaborative inquiry with people whose lived
experience of marginalization helped bring diverse perspectives to the dis-
cussion group: Indigenous people; people of colour; lesbian, gay, bisexual,
trans, intersex, queer, two-spirited (LGBTIQ2S) people; and people whose
lives hold other complexities. The purpose of these discussions was to ex-
plore the ways in which people enact a practice of active decolonization
and to create a space in which we could talk about social justice solidarity
and decolonization. For the purposes of this chapter I will focus on reflec-
tions about the discussions that were specifically organized for people of
colour (who were also/always carrying complex stories of other marginal-
izations into the conversations).
The people who shared their stories within these gatherings were amazing
and brought unique insights into anti-oppressive community development,
and scholarship. Slam poets, truck drivers, sex workers, therapists, academ-
ics, crisis support workers, artists, labour organizers, teachers, or combina-
tions thereof – each participated deeply in our discussions. We explored
what it means to be or to need an ally, and how, as a result of interlocking

oppressions, people have experienced both situations, sometimes simulta-
neously. There was such fierce joy in coming together. It was clear that
discussions like these are a necessary, albeit rare, part of our work.
Some of our discussions have explored the following questions: How do
we, as racialized people, lay our stories bare while being mindful of our
different histories, struggles, and relationships to colonization and enslave-
ment? How do we understand our stories in the context of settler colonial-
ism? Settler logics and violence affect us all in different ways – especially
given the connections between colonization and anti-Black racism. How
do we honour our different standpoints, stories, and struggles as we con-
tribute to decolonization?13
By sharing space and stories and breathing together (conspiring) we can
create the foundations for profoundly important work. The work we do as
individuals is strengthened by holding one another to a high measure of
compassion, accountability, and action. But what does this high measure
look like? Through collaborative inquiry and ongoing community conver-
sations, the following are some of the key issues that keep emerging for
racialized people engaged in decolonization.
We must not usurp Indigenous leadership. If there are leadership posi-
tions in organizations and movements that should be filled by Indigenous
people, we should choose not to apply for them. If the positions are not
filled, it may be useful to explore why that might be. We know how crucial
this kind of support has been for us; we must hold ourselves to an even
higher standard because of that knowing. This is how change can happen,
and how solidarity can take shape.
We are not owed gratitude or acknowledgment for simply doing what is
right. We know this but must remember to live it too.
We must not compare our own stories with Indigenous peoples’ stories of
struggle, survival, and resistance. Comparisons, even when offered as com-
monalities, often serve to silence and diminish the voice of the speaker.
Instead it is important to listen to the stories and honour the sharing. This
can be difficult because we are taught to make sense of things in dialogue.
There may be times when the sharing back and forth of stories is valuable
and enriching, but it is important to be mindful that it is not always war-
ranted or welcomed.
We must examine our own stories. To do that, we must neither deny our
histories nor only focus, teach, or gather around assumed commonalities.
We must recognize that we are deeply complicit in colonization and are not
free to turn away and claim that our own suffering erases that complicity.
We must find ways to hold our own struggles and histories without dimin-
ishing or minimizing those of Indigenous peoples. Decolonization must be at
the centre of every activist movement – whether it be focused on women’s
rights to safety, LGBTQ2S community rights, environmental protection,
or labour reform. In doing so, we will hopefully be far more effective in
challenging structural and systemic violence.
We must find hopefulness, joy, and inspiration. We must talk with people,
learn more, reflect, and then find more hopefulness, joy, and inspiration so
that we can keep doing this important work.
Part 3
This final section is structured as a dialogue to show how we hear, interpret,

and honour our different approaches to a similar passion. We present what
is at stake in engaging decolonization and social justice, the challenges of
systemic violence, and the need to participate in challenging these systems.
RUBY : As an Indigenous woman, I have been given teachings that remind

us that we all have gifts to offer this world and that we are here for a
purpose. We are part of a greater circle; to exclude anyone weakens
our community. Our values are communal – we are part of a far greater
experience, and our connectedness is what gives life meaning; and
everyone’s gifts are valuable. These principles guide my life and practice.
It is my responsibility to honour these teachings by sharing them. Our
traditional knowledge is closely tied to the wellness of our communities.
As Indigenous people, we have endured deep intergenerational wound-
ing from colonial policies and practices.
The violence of being told we are not professional when we incorpo-
rate sacred ceremony into our work with community is profound. I have
witnessed highly respected community members being humiliated in
public by service providers, and upon reporting these actions, I was
ostracized in my workplace for demanding accountability. We watch
helplessly while our loved ones die from addiction, abuse, and violence
on themselves or others; we see health wane due to poverty and over-
crowding. I have fought, become tired, felt my spirit drained, and even
begun to question my own knowledge while bringing this voice to com-
munity organizations and academic structures and to people within my
own practice as a counsellor. This is the effect of structural violence that
colonial oppression has created. I have been ostracized, excluded, la-
belled a “trouble-maker,” and minimized as not understanding the system
or process of “how things are done.” Many times I have had to withdraw in
order to rejuvenate and re-evaluate who I am and what I am willing to do.
Today I pray that this chapter will inspire others like us, we who are
working towards social justice from a decolonizing and an empowering
approach, to understand that they are not alone and that there are ways
we can care for ourselves and each other in this process.
For me, social justice is all about taking action when loved ones ask
for help or when glaring injustice is taking place. In this work there is a
time for being a warrior and a time for being a healer, and while my gift
is largely as nurturer, there certainly are times when it is crucial for me to
take a warrior stance; it is a part of each one’s journey to figure out her
or his own balance in these two roles. Today I spend less time convincing
others to practise decolonization and am learning, for my own well-being,
to lead more by example. I had to stop asking others to do this work, and
I just do what I can, taking guidance directly from the community I serve.
I have stepped aside so that other warriors can step forward.
SABINA: For me, social justice has always been rooted in responsibility, ac-
countability, and compassion. When I was growing up, there was a poster
on my wall that read “Silence = Complicity.” I think that was one of the
biggest teachings for me. If I don’t speak out, then I am saying it’s okay. If
there is injustice, we have to speak out and act, otherwise we are causing
harm. Social justice has to be a part of what we do. For me, that means
foregrounding compassion. When I work with people in service provision
or community facilitation, I really challenge myself to hear their stories.
That means being aware of what my own filters emphasize, and resisting
the urge to make assumptions, so I can truly listen to what they are sharing.
RUBY: These are the teachings, and sometimes we just pick them up. This
one time I saw this necklace, and all it said on it was “Inspire.” I made
a commitment to wear that every day for a year, and I wore it to remind
myself that that was what I was intending to do – inspire myself and
others. Through simply noticing a little one or a loved one who is walk-
ing with their head down, I made a point to acknowledge them by saying
hello, so they look up to see the world around them and experience being
seen and acknowledged by another. T. Richard Baker, who is Haida and
Squamish, taught me a Haida saying that means “I feel you, hear you,
sense you, my loved one.” I embody these words by really being present
when engaging children – including my own – to pass on the teaching.
SABINA : That was one of the big things in working with street-involved youth
– that if we didn’t know their names, some of them would go for weeks
and weeks without having anyone actually use their names. So often
we render people invisible, especially in times of deep trauma and crisis.
It is interesting because I use that quite a bit, the “I see you.” And when I
feel that people can see me, not just one tiny part of me, but actually see
me, that’s an entirely different sense of belonging or sense of being loved.
RUBY: That is wholistic healing. To be seen in the wholeness of who we
are – in all our beauty, our grace, our ugliness, our fear – because we are
never only one thing. We are this magnificent compilation of complexity.
SABINA : So often in service provision the way we ask people for information,
or offer issue-specific support, splinters people. We only look at one piece
or another. We do that with substance use, with mental health, and with
people’s stories. We decide what parts of their healing need to come
first. Because of rules that are imposed, people have to leave big parts
of their stories – themselves – at the door. For me, part of having dignity
and integrity as a service provider means being able to say, “Come. All
of your stories are important to us. You don’t have to tell us. You don’t have
to bleed in front of us. But if you want to be here, then we will do our very
best to see and support you.”
RUBY: Recently my colleagues and I were talking about how people won’t
come into counselling unless they are doing badly. But who says they can
only come in then? I would love it if they felt they could come in singing
and dancing and sharing a good day!
SABINA : We end up caught in reactive crisis-based service provision. If we
treat support the way we treat eating –if good options are there all of the
time – we can grow strong in our hearts and our bodies and our spirits.
Shouldn’t we have support in celebration and hopefulness? Shouldn’t that
be there in the same way that it would if we were crying and our hearts
were breaking? I think that is part of resilience.
RUBY: This speaks to having to silence the Indigenous traditional knowl-
edge we bring. Our medicine bundle is a metaphor for this – having to
bring our half-selves when we enter the room because all of who we are
cannot be acknowledged by Western ideologies. And to put down our
bundles – our gifts – so we go in naked and bleeding to be validated as
one who is deserving of support. The same thing comes with education.
We have to put down our Indigenous traditional knowledge to step in and
learn this Western notion of what health and wellness is. In order to learn
from these Western concepts of counselling or health, we have to take an
“expert” role, lest we be considered simplistic or unprofessional. But this
just doesn’t fit with our teachings. It just doesn’t fit!
SABINA : Medicalizing mental health and spirituality is a way of controlling

bodies and minds. The whole colonizing structure is held in place by
brutally violent systems that have been intent on genocide. The “science
of the mind” hasn’t been around for that long and is used as a tool for
control, to silence and punish difference. It is easy for people in power to
silence others by saying, “You are not being good enough,” or, “You are
being too simplistic.” Years ago I spent time with my family in India, and
I interviewed women who had been involved in three different waves of
political and social action – the independence movement, the Naxalite
movement, and the modern political movement. I explored the role of mu-
sic as an entry point to activism. When I handed in my paper, my profes-
sor questioned the fact that I hadn’t referenced Foucault, rendering all of
my references from Indian feminist theorists less valid than the writings of
a French (white, male) theorist. Often professors cling so deeply to their
idea of who the experts and knowledge holders are that they completely
dismiss most of the world’s knowing.
RUBY: Unless you are quoting Freud and Rogers and all of these popular
mental health “experts,” your work is devalued. Indigenous traditional
knowledge that we walk with and speak about – this medicine bundle – it
is thousands of years old. Not 150 but thousands of years old! At what
point do we stop trying to convince somebody of the obvious and just
follow our knowing? That is the social activism that I am engaging in now,
and it is easier on my sense of well-being at all levels. I am seeing the
results within our community engagement.
SABINA : I think that is how we have to keep doing the work. The work is
hard and can be daunting. Lots of people will yell at us when we speak.
So we must have soft spaces to land, where there are folks who will hold
us accountable and also inspire us to keep learning.
RUBY: Yes, rather than silencing us.
SABINA : Even if we don’t do the same work, I believe we can create those
softer spaces where we can be hopeful and honour one another’s resil-
ience, and figure out new ways of doing things together. We must find
ways to acknowledge the hard, heart-breaking pieces and also find inspi-
ration and joy. It calls to mind the Buddhist teaching “No mud, no lotus”14
– beauty comes as a result of hard work, and there needs to be balance.
RUBY: We have a lot of words to explain a small part of the complex dance
that we call life. Perhaps that is why our Elders remind us that we have
two ears and one mouth, and we were purposefully built that way. No
one of us (or two, for that matter) can offer all the complexities. We are
simply offering some deeper ways to consider how we all share space,
and our intention is for us to ask ourselves to be open to how we honour

diversity of knowledge. This is part of the process of decolonization. It is
not always easy. How do we resist using colonizing words and actions
to shame and silence those we do not agree with? Elder Willie Walkus
would remind me to give a silent prayer of blessing and remove myself
from the violent mind frame when respectful dialogue is not obtained.
I did not understand it at first, but as time went on I came to understand
the importance of knowing where to put our energy, and that not every-
one has to be a warrior all the time.
SABINA : Often it feels like there is too much at stake when we do not speak.
We need to consider the costs of speaking and not speaking, and follow
that wisdom.
RUBY: There is silence built into the systems that are not meeting the needs
of our loved ones. While we cannot give details because of the nature of
our work, the result of systemic violence is increased addiction, suicide at-
tempts and completions, sexual assaults, domestic violence. Many people
do not get support because they do not have a connection to the Western
notion of mental health. These are normal trauma-based responses – how
can people be expected to trust the systems and institutions that have
been at the root of their trauma? Connection, community, voice, confi-
dence – these are the things that need to be rebuilt. This is the practice
of decolonization. Communities need to have the difficult conversations
to let go of the oppressive models that continue to hurt and silence.
Why are we still encouraged to speak softly by our Elders and teachers?
There is a conflict of practice here. How can we reconcile the teachings
of Ikilan (to walk gently with all things of life) when our very teachings are
treated with disdain or as dead, meant only for the museum, to be viewed
from a distance and romanticized. On the one hand, we want to scream
from the rooftops, “We are not dead! Our culture, values, and beliefs are
still alive!” On the other hand, to follow our teachings, we Galgalpotla
(hold one another up). How do we decolonize ourselves when to hold
space means that we need to be at odds with Western philosophy?
Yet by degrading, minimizing, or otherwise belittling Westernized philo-
sophical structures that denigrate our way of knowing, we also engage
in the same colonial framework to which Duran and Duran (1995, p. 176)
refer. But how do we uphold and give blessings to ones who render
invalid our ways of knowing?
This is why it is a dance of complexity –there are no easy, cut-and-dry

answers. There are ways of resisting and refusing that stay centred in
colonial frameworks, cutting criticizing and silencing, and there are ways
of centring and grounding in our own ways that honour the holding up. If
we choose the latter, we can be warriors and healers at the same time. It
is the resistance on Western terms that perpetuates colonial frameworks.
Resisting on our own terms creates opportunities for us to grow and nur-
ture and build new possibilities.
Final Words (for Now)
As we have said, there are no easy, cut-and-dry answers. Perhaps that is the
best note on which to close this chapter. Both of us feel as though we could
write so much more about this. However, we will save those stories for
other days to come. We have learned and gained so much from each other,
and we hope that this chapter has spoken to our readers in some way and
that it may deepen their commitment to their role in decolonization, and to
caring for themselves and seeking support as they do this work.
Our stories and our work have different focus points to address the issues
of decolonization and social justice in Canada. These differences are neces-
sary and needed. It is an important factor in dancing with complexity, and
we honour this in each other. It is important to recognize that many people
have been advocating for hundreds of years against colonial oppression
and will continue to do so. We are not alone. And it is normal and natural
for us to feel that the progress is too slow. We see our loved ones suffering
from the ongoing violence of colonization, and we see its resistance to hear-
ing our voices, but we are still here, still doing what we set out to do.
Although the process of tearing down St Michael’s Indian Residential
School in Alert Bay, British Columbia, began in February 2015, the pro-
cess of healing will be ongoing for generations to come. May the voices of
the existing survivors be heard.
We must not allow history to be covered up again and again. We must re-
define, regenerate, and recentre ourselves by re-searching our own stories and
practices as a part of our healing. We cannot allow the violence and geno-
cide of colonization to continue. We must do better than that – together.
Ruby’s Dedication: I dedicate my work to my teachers and knowledge
keepers; my husband, Wayne Peterson; my children, Cedarus, Sophia,
Xaydan, and Autumn (I pray the voice of this writing will continue through
your hearts, minds, and spirits – you are my Gwa’layu [reason for living]);
the many survivors of residential schools who have entrusted me with their
stories; my family who walk this earth with their stories still; and my loved
ones no longer here, especially my mom, Granny, and Grandpa, whose
stories still live in me. And this is dedicated to our children still to come …
your voices matter, my loved ones.
Sabina’s Dedication: I dedicate my work to the people who work tire-
lessly to create change, to listen and honour and learn, and whose fierce
hearts inspire us to dig deeper and be stronger.
NOTES
1 While many teachings within Hinduism have been important to consider, it is

necessary to be critical of the casteism and the anti-Indigenous and anti-Black
racism embedded in some Hindu institutions, practices, and beliefs.
2 Rather than competing on which “house” of thought was more legitimate
than the other, we were encouraged to explore the possibility of developing
a third neutral “house” where each view can be welcomed equally.
3 Open confrontation has included comments like “Get over it, it was a long
time ago!”; and outright hostile outbursts by someone in a group saying that
a speaker who talks about being oppressed in a public setting, such as a
meeting or a conference, is oppressing other people. Such statements are
silencing and diminish the efforts to honour diverse engagement. Our work
and our employment have been challenged, and we have faced emotional,
physical, and verbal violence.
4 Housing my values and practice means looking at everything from the
teachings that come from this “house” of traditional knowledge, rather
than from the “house” of Western theories to see if Indigenous traditional
knowledge can fit. It was no longer an afterthought, but a central premise.
5 I have learned about decolonization from a combination of academic learning
from people like Paulo Friere, bell hooks, Gregory Cajete, Vine DeLoria Jr.,
Mary-Ellen Kelm, Lee Maracle, Jo-Ann Archibald, and Eduardo Duran,
and of learning from Elders and teachers of my own community and from
other Indigenous nations, such as Mary McQuillen (Makah), Wa’ta Joseph
(Kwagiutl), Willie Walkus (Gwa’Sala ‘Nakwakda’xw), Larry Emerson
(Navajo), Teresa Marsh (South African), Gloria King (Beausoleil Ojibway),
Ed Loutit (Cree), and ‘Namgis teachers Wedlidi Speck, Al West, Eva Dick,
Arthur Dick, Pewi Alfred, and Vera Newman, who have carried knowledge
forward. Not all of these individuals, who are my teachers, will be quoted here.
6 I am deeply indebted to the writers, theorists, and activists whose words
have created possibilities, foundations, and a sense of home for me. From
the scholarship and writing of Anzaldúa, Moraga, Friere, Maracle, Spivak,
Bhabha, Hall, Smith, Mohanty, Dua, Lawrence, Tuck, Yang, Simpson,
Ahmed, and others; to the youth and staff at Change Now, Inner City/Youth
Skills Zone, and antidote – Multiracial and Indigenous Girls and Women’s
Network; to my family (chosen and blood); and to Amanda Engen, Ruby
Peterson, Claude Boulanger, Johl Ringuette, and Harshita Yalamarty –
I am grateful for the ways in which your strength and words deepen my
understanding of and commitment to decolonization.
7 We have experienced the disconcerting and offensive ways in which people
have demanded that we “accept” them as “allies,” saying that we should be
“grateful” for any support they give to us, even when they are committing
violence and silencing us.
8 Teacher Eva Dick talks about the fact that each of us, like a spoke in a wheel,
has an important role: if one is missing, the wheel is weakened (personal
discussion, November 2010).
9 Elders, friends, and teachers at the Barrie Native Friendship Centre, I will
always be grateful for your loving kindness.
10 Our present-day T’lisalagi’lakw school started in the St Michael’s Residential
School building.
11 Kwakwaka’wakw museum and cultural centre, www.umista.ca
12 The decision to use a lower case w in white is one that we have made as a
part of our ongoing, always-unfolding decolonial dialogues and practices
– especially around race, naming, and the power embedded in words. The
socially constructed language of race and privilege is seldom questioned until
a shift is made. This shift into lower case w is to create awareness of how this
is accepted without question. Our hope is that this small act will encourage
deeper reflection about the power of language in the process of decolonization.
13 These questions were co-written by Sabina Chatterjee, Maïmouna Younglai-
Case, Harshita Yalamarty, and Sayaka Yajima during the Laying Our Stories
Bare project in 2014–15.
14 As Thich Nhat Hanh (2010) says, “we are making life more beautiful and
meaningful because of the power of understanding and compassion in us”
(p. 86).
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6 Melq’ilwiye (Coming Together):
Re-imagining Mental Health for Urban
Indigenous Youth through Intersections
of Identity, Sovereignty, and Resistance
n ata l i e c l a r k , pat r i c k wa lt o n , j u l i e d r o l e t ,
ta r a t r i b u t e , g e o r g i a j u l e s , ta l i c i a m a i n ,
and mike arnouse
Introduction
Melq’ilwiye is a Secwepemc word that means “coming together.” Our work

together began with a story told by Secwepemc Elder, knowledge keeper,
and co-author Mike Arnouse, who assisted and guided our Indigenous
participatory action research project:
It was mainly my uncle Tommy who told me about a journey that was the
message to young kids going out on a journey in their life. It was like a per-
son was walking through the woods, and he really has to look at everything
from tiniest creatures to bright-coloured plants, whether they are medicinal
or beautiful, and stop and look at them – especially the landmarks. You have
to go around and look at everything – keep the picture in your mind and your
own story of what you seen – but that sometimes takes a lot of work – your
mind, heart, body, and spirit … So sit down and find a comfortable place on
a rock and rest and look back at what you have just seen as you walked on the
path, and when you have rested enough, you can get up and go again and con-
tinue to do the same thing. Because if you don’t do that – to look back where
you came from and to remember all the landmarks in your life – you get lost
and you lose the vision of your goal. It’s a short little story that means a whole
great deal. My uncle told me that one time when I was tired and whining away,
and he told me that story … “Make some tea,” he said, “and sit down and
visit with me.” When I was rested, I was laughing and on my way again. It was
so easy when I would get stuck I could go … [to] uncle. I have to rely on my
memory now and my own trail.
The story provided a template and guide for our work, which attempts
to decolonize and centre Indigenous research and writing with and for
166 Clark, Walton, Drolet, Tribute, Jules, Main, and Arnouse
Indigenous communities. It reminds us to take time to consider both where

we have come from – in this case, the real harm and violence that have been
done through past research conducted in and on Indigenous communities
– and where we are going. Our goal is to centre Indigenous research and
ethics in our work together.
Our work together began in 2009 and took the form of an Indigenous,
community-based exploratory study with two aims: to determine how ur-
ban Indigenous youth in Kamloops identify their health needs, includ-
ing mental health needs, within a culturally centred and holistic model of
health and wellness; and to create new knowledge and research capacity
by and with urban Indigenous youth and urban Indigenous health care
providers. The project was intended to address the need, identified by the
National Association of Friendship Centres (NAFC), for more effective
ways to promote health among urban Indigenous youth. It also addressed
the recommendation of the Senate Standing Committee on Aboriginal
Peoples (2003) to promote “urban First Nations health research initia-
tives that could provide valuable information on the needs, experiences
and priorities of First Nations youth living in urban centres under a First
Nations controlled design” (p. 3).
The research took place in the interior region of British Columbia through
a partnership between the Kamloops Aboriginal Friendship Society (for-
merly the Interior Indian Friendship Society) and Thompson Rivers
University, both of which are located on the unceded and traditional terri-
tories of the Secwepemc peoples in Tk’emlúps, the city of Kamloops. Our
research team comprised Elders, Indigenous youth, community partners,
Indigenous faculty, and allies for this particular project. The Kamloops
Aboriginal Friendship Society is part of a network of 118 Friendship Cen-
tres in Canada and is a member of the NAFC. Friendship Centres are
often the first point of contact and the primary providers of culturally
enhanced programs and services to urban Indigenous people. As described
by the NAFC, “For over half-a-century, Friendship Centres have been fa-
cilitating the transition of Indigenous people from rural, remote and re-
serve life to an urban environment” (NAFC, n.d.).
The study contributes to decolonial and Indigenous mental health re-
search through the creation of new narratives about the health and well-
ness of Indigenous youth within a holistic understanding of Indigenous
health. By centring Indigenous ideas of health and wellness, the research
acknowledges the importance for Indigenous youth of strong connections
to their Indigenous lands, languages, and traditions, while also recognizing
the spaces between which they move.
Re-imagining Mental Health for Urban Indigenous Youth 167
Context
Recent research offers a range of ways to view Indigenous health, from

studies that locate health narrowly, defining it as the absence of disease
(Devries, Free, Morison, & Saewyc, 2009; Kaufman et al., 2007; Perry &
Hoffman, 2010); to more complex and holistic analyses of health, includ-
ing social determinants frameworks (Mehrabadi et al., 2008); to collective
health concepts that are Indigenous centred (Anderson, Smylie, Anderson,
Sinclair, & Crengle, 2006; Burack, Blidner, Flores, & Fitch, 2007; Ungar,
2006). Holistic approaches to Indigenous health are decolonizing in and of
themselves because they remind us that even our definition of health and
the methodologies that flow from this are rooted in our worldview.
Institutional racism and systemic racism in Canada negatively affect
health, and studies demonstrate the need for increased research in this area
to consider specific health determinants, the physiological health impacts
of racism, and inadequate access to or isolation from health care (Anderson
et al., 2006; Ungar, 2006; Veenstra, 2009; Wexler, 2006). Poverty, racism,
violence, and assimilation pressures all contribute to the increased vulner-
ability of urban Indigenous children and youth, as do the history of colo-
nization and the subsequent colonialism that persists to this day (Justice
Institute of British Columbia, 2002, 2006).1
Many studies have identified disproportionately severe mental health
challenges for Indigenous youth (British Columbia Children’s Commission,
1999; McCreary Centre Society, 2005; Saewye et al., 2008). However, much
of the research does not place the issues within the context of coloniza-
tion and ongoing colonialism or within a strengths-based and Indigenous
youth–centred understanding of Indigenous youth health. As part of our
team’s commitment to decolonizing research we sought to resist these nar-
ratives of risk – what Indigenous scholar Eve Tuck (2009) calls “damage-
centred” research. Thus, in our writing and research we avoid the replication
and centring of these statistics because within mental health policy there is
a great danger that “framing the problem purely in terms of mental health
issues may deflect attention from the large scale, and, to some extent, con-
tinuing assault on the identity and continuity of whole peoples” (Kirmayer,
Brass, & Tait, 2000, p. 597).
To truly create Indigenous and decolonial mental health policy, then,
practice and research must begin with a recognition that Indigenous health
and mental health are often framed and addressed through health pro-
grams and interventions that are based on Western value systems that serve
to further colonize and pathologize Indigenous youth and their bodies
(Clark, 2016). A focus on mental health as an individual health problem

prevents and obscures a more critical, historically situated focus on social
problems within the context of a neocolonial state that contributes to men-
tal health issues. There is widespread recognition, within both Indigenous
and non-Indigenous critical scholarship, of the need for a radical re-vision-
ing of theoretical and practical approaches to intervention and training in
Indigenous mental health (Gone, 2010; Hart, 2010; Hill, Lau, & Sue, 2010).
The current failure of Western models of intervention for Indigenous men-
tal health and trauma – in spite of the additions of cultural competency,
evidence-based practice, and trauma-informed care – has been well docu-
mented (Clark, 2016; Gone, 2008; Waldram, 2001).2
There is a need for research that centres the voices of Indigenous youth,
supports Indigenous researchers who ground their work in Indigenous epis-
temologies, and resists the discourse and construction of Indigenous youth
as “at risk.” The literature that does exist in this area indicates that healthi-
ness among Indigenous youth is promoted by aspects of cultural continuity,
such as cultural identity and pride, awareness of colonization and its influ-
ence on the present, the ability to speak one’s Indigenous language, and the
sharing of a collective identity (Anderson et al., 2006; Chandler & Lalonde,
1998; Croll, Neumark-Sztainer, Story, & Ireland, 2002; Jacono & Jacono,
2008; Kaufman et al., 2007; Mehrabadi et al., 2008; Ungar, 2006; Wexler,
2006). Research has already established a link between life in reserve com-
munities in which strong cultural components have been promoted, and pos-
itive mental health outcomes among Aboriginal youth, including decreased
suicide (see Chandler & Lalonde, 1998). However, the link between cultural
continuity, holistic health, and urban Indigenous youth health in smaller cit-
ies has not yet been examined. In Kamloops, the site of the present study,
nearly half (48 per cent) of the Indigenous population in 2006 was under the
age of twenty-five, compared to 32 per cent of the non-Aboriginal popula-
tion (Statistics Canada, 2010).
Cultural strength, identity, and pride, in particular, have been found to
be protective of health among rural youth (Clark & Hunt, 2011; Smith,
Leadbeater, & Clark, 2010). This type of health promotion includes devel-
oping a politicized identity, developing resistance, engaging in social ac-
tion against discrimination, and building knowledge about the impact of
colonization (Chandler & Lalonde, 1998; Croll et al., 2002; Ungar, 2006).
Many studies point to the need for specific health promotion strategies for
youth that centre Indigenous culture and wisdom. They also indicate a need
for Nation-specific and culturally specific health strategies, such as having
Elders teach youth, involving family members, focusing on interdependence,
and using culturally based Indigenous community research to develop

health intervention and prevention strategies and culturally safe health ser-
vices (Anderson et al., 2006; Chansonneuve, 2006; Clark & Hunt, 2011;
Majumdar, Chambers, & Roberts, 2004; Steenbeek, 2004; Teufel-Shone,
Siyuja, Watahomigie, & Irwin, 2006).
The present research project used an Indigenous intersectional frame-
work (Clark et al., 2013) that shifted the focus away from the individual
as the problem towards assisting Indigenous youth in understanding and
locating their “mental health” and coping abilities as responses to larger
structural and systemic forces, including racism, poverty, sexism, colonial-
ism, and a culture of violence and trauma. This type of research also cen-
tres the voices and experiences of Indigenous youth as co-researchers and
knowledge keepers. One of the two Indigenous youth peer researchers de-
scribed interest in the role as follows: “Being an urban Aboriginal youth, I
could relate to how they would feel and how we could engage other urban
Aboriginal youth. I thought it was a great idea to have youth representa-
tives on the team. It was easier for us to explain the questions to the youth.
It was easier for us to engage the other youth. I have sat on many youth
councils related to health. I always wanted to be a youth advocate and put
a youth view and ideas onto projects like this.”
The other youth peer researcher also described her experience: “Very
educational! Being a part of the project helped me to grow many strengths
through interviewing others, putting myself out there in the community,
and learning to work and be accountable. It also helped with my self-
confidence, and it was really interesting to learn about different aspects
of various youth. It also expanded my view on how we can help others
through research and focus group conversations. Presenting the findings in
Toronto at the conference made me feel proud and helped me to know that
I am valued and that I can make a difference for my Aboriginal people.”
These researchers are not alone in viewing the project as a means of
connection and growth. The team was altogether less focused on discus-
sions of illness and disease and more interested in holistic health and
centring the voices and experiences of Indigenous youth in part by rec-
ognizing the impact of colonialism. This shift in focus is crucial; it is by
definition decolonial. The study thus contributes to Indigenous research
and to the decolonizing of mental health research in that it resists the nar-
ratives of dis(ease) put forth through neocolonial research paradigms; in-
stead it considers past and current forms of colonization. “The rusty cage
may be broken,” writes Taiaiake Alfred (1999), “but a new chain has been
strung around the neck” (p. xiii). Indigenous and decolonial scholarship is
necessary because it can theorize not only historical forces of colonialism

but also current forces. Examples of ongoing colonialism can be found
in the research and the discourse about Indigenous youth mental health
that construct narratives of disease and risk, are not based in the strengths
and resistance of Indigenous cultures and peoples, and do not recognize
the diversity of Indigenous youth. Many Indigenous scholars acknowledge
that a theory is needed for the multiplicity of indigeneity that has emerged
from colonization – Métis, full-blood, half-blood, and community member
(Ermine, Sinclair, & Jeffery, 2004; Grande, 2004, 2008; Simpson, 2003).
Intersectionality is a conceptual framework that is often cited as aris-
ing out of the lives and resistance of Black feminist and lesbian activists
(Combahee River Collective, 1983). However, since colonization, there has
been a long history of Indigenous women activists who have written about
the impact of the intersections of colonialism, capitalism, and gender
on children, youth, and communities (Clark, 2016; Hopkins, 1883/1994;
Zitkala Sa, 2003). The term intersectionality was coined by the critical race
scholar Kimberlé Crenshaw (1989) to describe the oppression that is struc-
turally produced and simultaneously experienced and resisted individually
and collectively through and across diverse social categories of identity. To
Indigenous peoples, however, intersectionality is not a new concept. Prior
to colonization many Indigenous communities had strong matrilineal tra-
ditions, multiple categories of gender, and holistic understandings of and
approaches to health (Clark, 2016; Clark et al., 2013; Yee, 2009).
There is increasing recognition that the concept of intersectionality
“complements growing discussions about the complexity and multiplicities
involved in being Indigenous, in the category of indigeneity, and in In-
digenous people’s health and well-being” (De Leeuw & Greenwood, 2011,
p. 54). While many studies with Indigenous and urban youth may consider
one axis of difference, such as gender, most leave unexamined other key as-
pects of identity, such as age, place, and class. An Indigenous intersectional
lens facilitates the decolonization of mental health research, policy, and
practice through the recognition of the diversity of Indigenous youth and
the examination of issues that affect youth, including dichotomous West-
ern notions of urban-rural and male-female (Clark, 2012). With regard to
place, the health literature has increasingly focused on Indigenous youth in
large cities (MacKay, 2005). However, few studies have adopted an inter-
sectional framework or acknowledged the health impacts of the multiple
intersecting factors that address space, place, or location in a small city,
and still fewer utilize an Indigenous intersectional, community-based, par-
ticipatory action approach (see de Finney, 2014, 2010). Indigenous scholar
Sandrina de Finney, in her research with Indigenous girls in Victoria, Brit-

ish Columbia, describes how Indigenous “girls’ everyday acts of presence –
avoiding, protecting, contesting, laughing, hoping, dreaming, connecting,
documenting, imagining, challenging – are not singular, simplistic exam-
ples of rational agency; they are messy, contradictory, inherently diverse”
(2014, p. 11). De Finney’s work demonstrates that the decolonizing of our
research requires resistance to Western notions of place and, instead, the
centring of the voices and experiences of Indigenous children and youth.
The present study was conducted by an intersectional research team
(Clark & Hunt, 2011) comprising Indigenous youth and Elders; Indigenous
community practitioners, who participated through a partnership with the
Kamloops Aboriginal Friendship Society; Aboriginal health leaders from
the Interior Health Authority; and Indigenous and non-Indigenous uni-
versity researchers. Intersectional research teams chose to create research
spaces that asked about everyone’s agenda in doing the work and utilized
all of the different knowledges in the room (Clark, Hunt, Jules, & Good,
2010). Through this process we were able to resist research questions fo-
cused on risk, in favour of Indigenous and decolonial questions.
As a group the team developed four research questions: (1) Which cul-
tural components are linked to the health needs of urban Indigenous
youth? (2) Will the identified Indigenous cultural components differ by the
intersection of factors such as gender, ability to speak one’s Indigenous
language, knowledge and practice of Indigenous ceremonies and healing
approaches, and type of school attended (high school, alternative school,
university)? (3) What are the holistic health priorities identified by urban
Indigenous youth in meeting their health and wellness needs? (4) What sup-
ports do Indigenous students and the Indigenous community need to facili-
tate their health?
Additional Theoretical Framing
This exploratory study was guided by an Indigenous research paradigm,

which focuses on relationships and accountability to these relationships
(Aluli-Myer, 2008; Kovach, 2009; Wilson, 2008). It was also guided by the
concept of looking in one direction, a term provided to us by our Secwepemc
Elder Mike Arnouse and by Vicki Michaud, a Secwepemc community-
based researcher from the Friendship Centre to remind us that we will do
good work if we are all looking in one direction – in this case, the direc-
tion of healthy outcomes for our children and youth and the next seven
generations. Furthermore, while building on the knowledge and wisdom
of the youth and Elders who were involved in the project and who shared
a commitment with us to all look the same way, the study placed urban
Indigenous youth in a central role as peer researchers and collaborators.
Moreover, this project observed Indigenous ethics and guiding prin-
ciples (Alderman, Balla, Blackstock, & Khanna, 2006; Smith, 2001) and
used a checklist (see appendix 6.1) developed by Natalie Clark and Sarah
Hunt that reflects a number of ethical guidelines, including human rights;
the four R’s – respect, relevance, reciprocity, and responsibility (Clark et
al., 2010; Kirkness & Barnhardt, 1991); ownership, control, access, and
possession (OCAP) principles (Schnarch, 2004); and ethics as determined
by the Indigenous community (Justice Institute of British Columbia, 2002,
2006). According to Clark et al. (2010), “researchers who are connected to
the community are therefore accountable to the community for the ethics,
practice and outcomes/action of the research. The findings are more than
data, but are stories and actions in relationship with people and communi-
ties” (p. 250). Ethics approval was obtained from the community and the
university, and our team followed Tri-Council Research Ethics Guidelines.
Finally, in keeping with the concept of Indigenous knowledge transla-
tion (Estey, Smylie, & Macaulay, 2009), the findings were presented by the
Indigenous youth-peer researchers at an Indigenous youth health confer-
ence organized in Kamloops by the research team and attended by more
than two hundred Indigenous youth from rural and urban communities
within British Columbia. In addition, the findings were presented in 2011
by the youth researchers, together with members of the team, in Toronto
at Fostering Biimaadiziwin (the good life), the first national conference
on urban Indigenous health sponsored by the National Association of
Friendship Centres.
The theoretical and applied framework guiding this project built on the
work of Irihapeti Ramsden, a Maori nurse, and of Dianne Wepa (2003,
2005), a Maori social worker, who both, together with Maori national or-
ganizations, developed the concept of cultural safety. Cultural safety fo-
cuses on power relationships between the colonizer and the colonized and
is linked to Indigenous self-determination (Chansonneuve, 2006). The em-
phasis is on the experience of the service user or client in defining the expe-
rience as culturally safe, thus shifting power relationships. In addition, the
research team focused on culturally safe research within an intersectional
research team and grounded in Indigenous methodology and Indigenous
ethical protocols (see appendix 6.1).
Ermine, Sinclair, and Jeffery (2004), in their review of research with In-
digenous people, identify participatory action research as one of the best
methods for addressing the complexity of the issues currently facing Indige-
nous communities: “The participatory action research approach to commu-
nity issues is a culturally relevant and empowering method for Indigenous
people in Canada and worldwide as it critiques the ongoing impact of colo-
nization, neocolonialism and the forces of marginalization” (p. 9). Other
Indigenous scholars echo this view, such as Eve Tuck (2007) who writes of
the “radical possibilities of PAR spaces as spaces in which sovereignty can
be recognized, practiced, theorized, and cultivated” (p. 163). Furthermore,
community-based participatory action research invites youth to “critically
investigate the social policies that construct and constrict their lives, inter-
rogating policies that ravage their communities and threaten their imagina-
tions” (Torre, Fine, Alexandra, & Genao, 2007, p. 238).
Research Methods
The community-based participatory action research study was carried out

in Kamloops, British Columbia, using an Indigenous research paradigm
that involved mixed methods, including four talking circles with approxi-
mately forty participants, and seventy-eight surveys completed by urban
Indigenous youth (60 per cent self-identified girls and women; 40 per cent
self-identified boys and men) aged twelve to twenty-five. The data were
collected in 2008–9 and analysed in 2010. Our team recruited participants
from three types of educational sites: an alternative Indigenous high school
program, a number of mainstream high schools, and a university campus.
All survey and talking-circle questions were developed in consultation with
the project’s advisory board, comprising community partners, Elders, and
Indigenous youth. The original items for the survey and the talking circle
were piloted, revised, and then reviewed again by the research team. The
survey items were then divided into questions that could be answered on a
Likert scale and items that required further explanation. Consistent with
an Indigenous, holistic view of health, the survey and talking-circle items
included questions from the physical, cognitive, emotional, and spiritual
domains. Four talking circles were conducted, two with girls and women
and two with boys and men. Team members trained two Indigenous youth
researchers to collect the data, and they were part of developing the survey.
The talking circles were audio recorded and transcribed. The research team
shared and read the transcripts using Indigenous storywork methods that
facilitated the identification of key themes and issues (Archibald, 2008).
Indigenous scholar Jo-ann Archibald describes her Indigenous method
of storywork as “synergistic interaction between storyteller, listener, and
story” (2008, p. 3). Community partners, Elders, and Indigenous youth

then used a collaborative analysis approach because “collaborative analy-
sis allows the results to be encircled within a set of ideas and relationships
and therefore become hermeneutic … [A]ll participants in the research are
part of analyzing these relationships and are needed to ensure that the
concepts are properly encircled” (Wilson, 2008, p. 122).
University-based members of the team also conducted training sessions
on Indigenous research methods with the Indigenous youth members of
the research team, and mentoring was ongoing. Urban Indigenous youth
members of the team also administered the survey at the three types of
educational sites. The whole team together analysed the survey results and
the transcripts from the talking circles. The team gained greater insight
into the quantitative survey data by considering the qualitative data emerg-
ing from the talking circles, as the two complemented one another.
We were conscious that in using a quantitative method we could be-
come trapped in a numbers game. Often, resource allocation occurring via
policy decisions is based on “hard facts” and the economic “bottom line,”
whereas much of the evidence surrounding the experiences of Indigenous
communities is qualitative in nature. As observed in a study commissioned
by the Cariboo Tribal Council, personal experiences are not more “truth-
ful” when there are numbers attached to them, nor is research likely to
uncover information that could not be obtained from comprehensive per-
sonal narratives. However, when research supplements such information
sources, those experiences or narratives cannot be dismissed as “merely
stories” (Chrisjohn & Young, 1997).
Findings
The Indigenous youth reported connections across a wide range of fac-

tors related to their health needs, including identity, Indigenous culture,
knowledge about and resistance to colonialism, and recommendations for
culturally safe health care. Our findings are organized under four head-
ings: “Indigenous Identity and Resistance,” “Indigenous Sovereignty and
Cultural Connectedness,” “Colonialism and Structural Racism,” and
“Culturally Safe Health Care.” The results are consistent with those of
the limited research that has been conducted to date reporting that young
speakers of Indigenous languages cite culture-based spirituality and tra-
ditional Indigenous healing methods as important for their health (First
Nations Centre, 2005; MacKay, 2005).
Indigenous Identity and Resistance
The overwhelming majority (96 per cent) of Indigenous youth reported

that they were proud of their ancestry. This finding resists narratives of
Indigenous youth as having low self-esteem or as struggling with mental
health (narrowly defined, and including depression) linked to low self-worth.
Self-descriptions by participants in the talking circles captured the tremen-
dous diversity among Indigenous youth. Some called themselves “short,”
“tough,” “tall,” “brown,” “nice,” “outgoing,” “pretty,” “non-judgmental,”
“random,” “honest,” “athletic,” “not racist,” “joyful,” “happy,” “not a
Christian,” “two-spirited,” and “Christian”; others included a “singer,” a
“dancer,” “fun,” a “pothead,” “jud”; and still others described themselves
as “someone that drinks all the time,” a “stud magnet,” “another Native,”
“another Chilcotin,” a “baller”; one said, “I introduce myself with my full
name”; others said that they were “awesome,” “wonderful,” “courageous,”
“curious,” “creative,” and “mean.”
The youth who were interviewed and surveyed also expressed strong re-
sistance to the labelling of Indigenous youth by mental health services,
as well as to the resulting stigma. Youth strongly resisted colonial spaces
of mental health. As one youth described it, “putting signs on an office
saying Mental Health Counsellor … is not where we want to be seen go-
ing, because we don’t want to be labelled, we do not want to go to certain
labelled services [mental health]. But school counsellors’ office, FNEW
[First Nations Education Workers] office, hospital, clinic – they’re not em-
barrassing offices to access – Friendship Centres.” Many youth echoed this
view, stating that the community should “stop young people from going to
counselling because it labels us.”
Related to this concern with stigma, issues of trust and cultural safety
were key in Indigenous youth recommendations with respect to seeking
help for mental health issues. The youth expressed sophisticated ideas
about when it would be safe to ask for help, and from whom. As one youth
shared, “If you’re suicidal, then it’s hard to trust people. I have a friend
who cuts. She was picked up hitch hiking and threatened with her life, so,
instead of reporting the incident, she cut! Go to someone you feel com-
fortable to talk to – not easy to find, but you could ask someone at school
(like a counsellor or First Nations education worker), grandparents, emer-
gency help phone lines; go to an Elder or introduce a friend (who is in
need of advice) to an Elder, church people, Phoenix Centre if you’re not
in school.”
In addition to challenging mainstream notions of Indigenous youth

identity and mental health, participants challenged dichotomous notions
of urban-rural in terms of Indigenous youth identity. A number of youth
were currently urban but had moved on and off reserves throughout their
lives. Both of the peer researchers identified as urban currently, but had
also lived on reserves, and helped the research team to understand the
movement of many of the participants on and off reserves. Few partici-
pants identified as uniquely urban, and many described living in multiple
localities and moving back and forth to see family, to access supports, or
to take part in ceremonies. For many participants, distance from Elders
was an issue in their wellness: “I only see my grandma … once a month,
when she comes to town, but it’s important for my health.” “I don’t see my
grandma much, but when I do it makes me happy. My grandma lives in
[another city], so distance is an issue.”
Challenging dichotomous Western categories of who is urban results in
a more nuanced understanding of the resources available and the barriers
to “urban” Indigenous health. For example, one of our peer researchers
moved between her home reserve and the city of Kamloops, and her chal-
lenges in accessing health care were compounded by her mobility because
her doctor resided in the small town near her home reserve. It is important
in our services for Indigenous youth that we consider the many spaces that
they move in and between.
Indigenous Sovereignty and Cultural Connectedness
In response to a separate question, 42 per cent of participants indicated

that their Indigenous nation-based spirituality was the foremost influence
in their health and the way they lived their lives. In our search for links
between health and Indigenous culture we asked participants if they could
speak their Indigenous language. Although we did not assess language com-
petency, 32 per cent reported that they could speak their Indigenous lan-
guage. Further analysis found that youth who could speak their language
participated more in traditional Indigenous ceremonies. Most (64 per cent)
of the twenty-five Indigenous-language speakers reported significantly
more participation in Indigenous ceremonies for health than did non-
speakers (17/53; 32%; F[1,7] = 5.16, p = .026). This result speaks to the
interconnectedness and holism of health within an Indigenous world-
view, which, in turn, points to the value of language programs for urban
Indigenous youth as part of decolonizing efforts for their mental health,
and supports calls for Indigenous language revitalization in the broader
community. It also resists pan-Indigenous ideas and notions of culture as

healing, as indicated by the importance of the languages and cultural cer-
emonies of specific nations, while recognizing the shifting spaces through
which Indigenous youth move from rural to urban.
Participants were also asked if they had used traditional Indigenous
healing approaches. Surprisingly, 48 per cent indicated that they had done
so, and 52 per cent reported that Indigenous ceremonies were important to
their health. This finding raises questions about what healing approaches
they were accessing, where they were accessing them, and whether these
should be made more widely available to youth. One participant contrasted
Western medicine with Indigenous healing approaches as follows: “I want
to learn how to make Indian medicine, because one time I was heating up
and I felt like I was cold to being really hot. I had to go to the hospital for
a day, but I felt better after taking the Indian medicine.” Another spoke of
the importance of sweats: “I wish more sweats were accessible. I haven’t
been in one since I was little, but I found it helpful. I felt better physically,
emotionally, mentally, and spiritually.”
Access and connection to Elders were also important to the health of
participants, and mental health in particular. In the talking circles Elders
were described as “comforting”: “They are just like parents, but they are
your grandparents … sometimes I can connect better with them because
they’re not as strict as my parents.” Another respondent said, “I have a
great relationship with my grandparents. I see them … every weekend.
Meals together are important. They are hilarious.”
Relationships with Elders were also central to the holistic health of the
youth. Participants identified a range of things they would want to learn
from an Elder; one stated, “I would want to know how to get an Indian
name, how culture started, tradition, history, to speak my traditional lan-
guage, and cooking.”
Colonialism and Structural Racism
Participants indicated that they understood the impact of colonization

and ongoing colonialism. Although 82 per cent agreed or strongly agreed
that they understood how residential schools affected Indigenous people,
this percentage included significantly more girls and women (45/47; 91%)
than boys and men (21/31; 68%): F(1,76) = 6.98, p = .010.
We were interested in whether the youth experienced instances of
racism and if this affected their health. Of the participants, 23 per cent
reported that racism had had a negative impact on their health. The
talking circles provided powerful examples of racism, and the impact was
multigenerational.
I was at [a restaurant] with some friends and an Elder, and we were so angry
because they put us in a corner. The server was ignoring us because we were
Native, and when I finally asked him if we were going to get some service, he
directed a female server to serve us, but he was serving other White people.
Later, during our meal, there was a hockey team being really loud, and they
asked our table to be quiet, but they didn’t say anything to the hockey team.
The Elder that was with us got so mad too, and she cried.
Another Indigenous youth described how colonial stereotypes and racism

continued to operate in settler-colonial Canada: “We were in [a supermar-
ket] gas bar, and the guy said, ‘You should get those Native people to do
the rain dance,’ and it was totally sunny out.”
Youth also identified the impact of the intersection of race with gender
and gender identity: “People won’t hire because of race and sexual orien-
tation,” said one participant. This quote is an important example of how
colonialism continues to have an impact on the bodies and opportunities
of two-spirit and queer youth. Gender differences were also linked with
speaking up about racism, with 68 per cent of boys and men indicating
that they spoke up, compared to 36 per cent of girls and women: F(1,76) =
6.10, p = .010. One young man said, “I get discriminated [against] all the
time, but I just speak up and say, ‘Is it because I’m brown that you’re star-
ing at me?’”
Culturally Safe Health Care
One quarter of participants stated that they encountered difficulties ac-

cessing health care. Health care centres such as the Kamloops Aborigi-
nal Friendship Society health centre were identified in the focus groups
as important alternatives to mainstream health service provision points.
Furthermore, youth did not believe that having an Indigenous health care
provider was as important as having all health care providers educated and
able to practise in a culturally safe way with the skills needed to work with
Indigenous youth: “Non-Aboriginal health care providers should be skilled
to work with Aboriginal youth. All health providers should be skilled to
work with First Nations youth. [I should not be] pawned off to an Aborigi-
nal worker because White people don’t know how to deal with me.” This
view was echoed by another participant who said, “I go to anyone that will
acknowledge my culture, grandparents, Elders.”
Further analysis found that having Indigenous health care providers was
more important to girls and young women than to boys and young men:
F(1,75) = 6.54, p = .013. Approximately 49 per cent of participants used
the Internet to find health information. This highlights the importance of
making mental health information available online and presenting it in
ways that are friendly to Indigenous youth.
Discussion
Key findings of this study provided preliminary answers to our four re-
search questions, including that a strong Indigenous identity was in fact
very important to youth and their relationship with their health; that they
self-identified as having a strong Indigenous and nation-based connection;
and that, with regard to structural racism and colonialism, their awareness
was clear and nuanced. Finally, consistent with the literature, the findings
have implications for Indigenous-centred and culturally safe health care,
including mental health, and imply that health care services need to involve
Elders, families, communities, and traditional healing methods (Anderson
et al., 2006; Majumdar et al., 2004; Skye, 2002; Steenbeek, 2004; Teufel-
Shone et al., 2006).
More importantly, the findings support the call by Secwepemc Elders,
and recent work by Secwepemc scholars, for a return to nation-specific cul-
tural teachings and language (Billy, 2009; Manuel & Posluns, 1974; Michel,
2012). As described by the international Indigenous rights activist and
Secwepemc chief George Manuel, co-author of the 1974 book The Fourth
World, “residential schools were the laboratory and production line of the
colonial system” (quoted in Billy, 2009, p. 63). Manuel’s father, a tradi-
tional medicine man, came to believe that learning about his Indigenous
culture and speaking his language were a detriment to his son: “Things
are going to be different from here on in. I don’t think it is wise for me to
teach you to go into the mountains. I think it will be a detriment rather
than an asset for you” (p. 68). Manuel’s father told him to be “White” but
then later, on his deathbed, said, “My son, I made a mistake. You raise
your children and your grandchildren as Indians” (p. 68). For her doctoral
dissertation Janice Billy, a Secwepemc woman, interviewed Secwepemc
Elders, who not only lamented the devastation of colonization but pointed
to language and sovereignty as the way forward; the late Elder Irene Billy
describes attending Kamloops residential school for nine years, from eight
to seventeen years of age, and now, at age eighty-two, “as grandmother
and great grandmother I can pass on my language but not much of our
culture. I am learning about our medicines and other things I didn’t learn
when I was young” (Billy, 2009, p. 90).
The exploratory study applies an intersectional, Indigenous, and cultur-
ally safe framework to tell the story of Indigenous youth mental health. The
urban Indigenous population (54 per cent in 2006) is the fastest-growing
segment of the Canadian Indigenous population (Statistics Canada, 2009).
Yet in Kamloops, as in other cities across Canada, there remains a tempo-
ral component to one’s location and identification as “urban Indigenous,”
which varies according to the person’s life history and story. This research
tells the story of the importance of strong connections to one’s Indigenous
lands, languages, and traditions, while also recognizing the spaces that
Indigenous youth move between and around in navigating the process of
growing up. MacKay (2005), in a study with urban Indigenous youth in
Saskatoon, draws on the work of Norris and Jantzen (2003), who report
that urban-rural mobility “is motivated by people moving to maintain
family and cultural relationships” (p. 111). MacKay (2005) notes that ideas
of identity and belonging are not contained within the boundaries of cities
or reserves. Our research illustrated similar results. One of the youth re-
searchers in our study put it as follows, describing the relationship between
mobility, identity, and health care: “What health means to me is being
physically and mentally healthy, to have balance in your life by staying in
touch with your culture and family. When I moved from a ... town to a city,
I found it hard to find health services. I do still go back to my small town
to get my health needs met, because that is all I know. So I do find it hard
to find some services. I have moved out of my home for a few years now
and I do feel a loss of home and family. I would have to make time to see
them.” While clearly appreciating the advantages of her new urban envi-
ronment, this youth describes the challenges of leaving her reserve and her
need to stay connected to family and culture. Furthermore, in our analysis
of the interviews the youth-peer researcher helped to make meaning of the
movement of the participants. For the youth researcher and her friends, a
move back to the reserve often coincided with a need to seek extra support
or with a life transition. These findings remind us that Indigenous presence
in cities is a direct challenge to colonialism. As Cannon and Sunseri (2011)
challenge, “indigeneity and urbanity are by no means incompatible to one
another, nor do they stand in a dichotomous, either/or relation[ship]. The
assumption is that we [Indigenous peoples] do not belong in cities” (p. 58).
The participants in our study also expressed pride in their Indigenous

identity, a keen interest in learning their traditions, and the value of tra-
ditional medicines for their own health. One of the few Indigenous youth
health surveys conducted in Canada, which was designed specifically to ex-
amine health information issues, reported that youth are interested in learn-
ing about and using traditional medicines (First Nations Centre, 2005).
Furthermore, previous research with urban Indigenous youth (Belanger,
Barron, & McKay-Turnbull, 2003) found that Indigenous identity is formed
through a wide circle of activities, including access to Elders, language,
First Nations education, community health spaces such as Friendship Cen-
tres, and the Internet. Tradition is thus inclusive of modern technology. In
our study 49 per cent of youth accessed the Internet for health information.
The research team has since considered how the Internet might be used for
health promotion purposes, such as reviewing existing websites, suggesting
changes to these sites, and finding ways to integrate culture into technology.
Further research on health promotion and intervention by and with urban
Indigenous youth is an area to be investigated.
Youth were aware of the structural factors that affected their health, in
particular colonialism, sexism, and ongoing racism. However, gender dif-
ferences were noted in this question, with women and girls giving a higher
rating to their knowledge of residential schools. In contrast, men and boys
were more likely to speak up when encountering racism. Furthermore,
speakers of an Indigenous language rated their health higher than those
who did not speak an Indigenous language, and also indicated that their
Indigenous spirituality was the most important factor in how they lived
their lives. The study not only sheds light on the experiences of urban
Indigenous youth who long to sustain and build on their Indigenous na-
tion-specific teachings, but also invites us to consider the relationships be-
tween mobility, identity, and health care. It underlines the need for further
theorizing about Indigenous identity and health, and about the markers
of colonial identity, flowing from the Indian Act, that are represented
in mixed, urban, status, and non-status categories. As Bonita Lawrence
(2003) reminds us, “for Native people, individual identity is always being
negotiated in relation to collective identity, and in the face of an external,
colonizing society” (p. 4).
These findings contribute to Indigenous and decolonizing scholarship
that resists narratives of disease. They provide new, more nuanced, and
complex stories about urban Indigenous youth. Future research could ex-
amine the complexity of the ways in which racism has an impact on the
mental health of urban Indigenous youth, and how the gender differences,
gender identity, and sexuality noted in the present study affect health. For
example, we found that boy and men participants spoke up more often
about racism. The impact of speaking up for boys and men, and of silence
for girls and women requires further exploration. An Indigenous inter-
sectional analysis of the impact of racism and other forms of structural
violence on the lives of Indigenous girls does not centre the colonizer, nor
does it replicate the erasure of two-spirit and trans people in our commu-
nities; rather, this analysis attends to many intersecting factors including
gendered forms of colonialism and the dispossession of Indigenous lands
(Clark, 2016).
There are ways in which this research also extends colonial narratives.
Of the participants in our study seven self-identified as two-spirit, one as
gay, and one as bisexual. Similar to the challenges of determining who
is urban Indigenous, binary analyses of sex and gender preclude an un-
derstanding of the spiritual role encompassed within a two-spirit identity
and neglect the diversity of Indigenous nations’ understandings of this
role and the ways in which it bridges this dichotomy. As described by
Indigenous scholar and activist Sarah Hunt in an interview for the Nexus
newspaper (Wedel, 2014), the term two-spirit is “not just about being gay,
or being bi, or trans, necessarily; it’s a term that is both about cultural
identity and sexual or gender identity. It’s a term that in some ways defies
those colonial categories.” Indigenous intersectional scholarship calls on
us to move beyond the binary constructs of gender found in the categories
of men and boys and women and girls. Qwo-Li Driskell (2011), a Cherokee
two-spirit academic, reminds us that gender itself is a colonial construct.
Driskell points out that prior to colonization some communities had up to
twelve genders and that colonization has altered our memory of gender.
Colonialism and patriarchy need a gender binary system because colonial
domination is impossible without binary constructs. Driskell notes that,
while relearning Cherokee, she-he has been reminded that Indigenous lan-
guages were always multifaceted and multidimensional, as suggested in
references to two-spirit people as having “a different heart” or having “two
hearts.” According to Driskell, “unless two-spirit people are listened to we
won’t achieve” decolonization. Given the key role accorded to Elders by
the Indigenous youth in our study with respect to their health, we need
research that listens to the unique experiences of two-spirit Indigenous
youth and Elders and is grounded in specific nations and lands, such as
the work of Secwepemc two-spirit academic and activist Jeffery McNeil-
Seymour (2015).
Conclusions
Urban Indigenous youth are living histories born of “a context of concrete

social, political, and historical struggles and success” (Downe, 2006, p. 14).
Although their identities and health needs are framed within experiences of
colonization (ongoing), residential schooling, and removal by child-welfare
authorities, they are inheritors of rich narratives and histories of resistance
and strength. Mental health programming based on Western value sys-
tems only serves to further colonize the bodies and identities of Indigenous
youth. The health of urban Indigenous youth must be addressed using
models that are based on the vast diversity of Indigenous traditions, be-
lief systems, and local knowledge and that incorporate spiritual, emotion-
al, mental, and physical health. Let us not promote any one model with a
fixed concept of Indigeneity, gender, sexuality, or other aspects of identity.
Programs that can respond to the unique needs and experiences of diverse
urban Indigenous youth will be able to foster more meaningfully holistic
mental health, healthy resistance and resilience, and community connected-
ness. According to the Indigenous youth activist Jessica Danforth (formerly
Jessica Yee; 2009), resistance lies in finding “practical ways to translate all
of this into modern terms for our young people to use so they can recover
what past generations may have lost, and re-assert themselves as the resil-
ient, fierce, and knowledgeable young people who were once upon a time
the most sacred in many of our cultures” (pp. 3–4).
Appendix 6.1: Wise Practices in Campus

and Community Partnerships
The following checklist can be used by staff, students, faculty, and other
members of the community to ensure that their project addresses the fol-
lowing principles in developing a learning and research partnership and
agenda that meet the needs of urban Indigenous youth, families, and indi-
viduals in Kamloops.3
Principle Question
Determination of Have Indigenous communities determined the development and needs
group’s own research of this project?
needs and priorities
Who wants this research to occur?
Who will benefit from it?
Indigenous sovereignty How are the values, perceptions, and expectations of the Indigenous
communities included to respect the principles of Indigenous sovereignty?
Participation of Are students and community members given leadership roles in our project?
Indigenous students
How are students and community members supported in taking leadership
and community members
positions in our project?
Does our project have an advisory committee?
To what extent are students and community members involved in decision-
making about the research in which they are participating?
Are students and community members considered key stakeholders during
evaluation of the project?
Social justice and Has our project created working partnerships with members of the community,
collective responsibility including Elders?
Do we attempt to educate the broader community about social justice issues
affecting the Indigenous community?
Do we work with partners from other sectors?
Is our project informed about larger systems of power in society, such as law,
education, and colonization?
Equity Do Indigenous and non-Indigenous communities and individuals feel that
they can approach our project without being judged?
Do students and community members have voluntary participation in our
research project?
How is an Indigenous perspective centred in our strategies for accessibility
by Indigenous students and community members?
Do our research practices create barriers to accessing our project?
How do people know about our research project? Are there any gaps
in our communication?
Are we aware of all the Indigenous nations, including urban Indigenous
communities, in our area? How are we engaging with them in an accessible
manner?
How does our project make students and community members feel welcome?
How is training and mentoring built into the project to create opportunities
for everyone to participate?
Principle Question
Intersectional, How do we ensure that our project is free from judgment?
Indigenous, and
How do we train our researchers to ensure cultural safety for the diverse needs
culturally safe
of participants?
research processes
and methodologies How do we address racism and other interlocking forms of discrimination
in our research project?
Do we offer Indigenous nation-specific and localized opportunities to participants?
Are we conducting our research project in a manner that addresses the specific
cultural needs of diverse communities?
Relational and Is there room in our project for workers to get to know the participants and
decolonizing perspective to maintain contact with them?
Does the project work to foster decolonization of research and naturally evolving
relationships?
Does our project honour the relationships that participants already have within
their peer groups, families, and communities?
How do we deal with conflict between individuals involved in the project?
Respecting Indigenous Have Indigenous communities been given an opportunity to collaborate
nations and communities on the research in their community?
Have Indigenous communities been adequately engaged in outreach
for participation in the research project?
Protecting Indigenous Have Indigenous communities had the opportunity to organize the Indigenous
knowledge knowledge to be shared, and the format in which it will be shared, used,
and stored?
How is the research meaningful to students and community members?
Has the meaning of “informed consent” for sharing knowledge been determined
by the Indigenous communities?
Is consent treated as a process rather than an event, in order that participants
can leave the research if they so decide?
Is the research led within Indigenous communities?
Are Indigenous communities involved in all aspects of the project?
Reflexive practice Does the project allow for continued reflexivity, evaluation, and critique
on the part of community researchers?
Have individual members answered the questions: Why am I doing this
research? How do I benefit in this research? What are my trespasses
and privileges, if any?
Acknowledgments
We would like to hold our hands up to Indigenous youth, Elders, and

Indigenous health professionals for their guidance, contributions, encour-
agement, and vision of action for future work. Co-author Talicia Main
gave birth during the course of the project, yet participated in all of the
research meetings throughout; the other members of the team applaud
Talicia for her contribution and commitment to the project. We would also
like to acknowledge the participation of Bradley Anderson, Director of
Aboriginal Health, Interior Health Authority, in all phases of the research
project, including data collection; and the support, throughout the study, of
Dr Colleen Varcoe of the University of British Columbia, and Christopher
Phillips, Executive Director, Kamloops Aboriginal Friendship Society.
The authors received financial support for the research project and the
writing of this article in the form of an Interior Health Authority Research
Award through Thompson Rivers University.
NOTES
Some material in this chapter first appeared in 2013 in “Melq’ilwiye: Coming

Together — Intersections of Identity, Culture, and Health for Urban Aboriginal
Youth,” Canadian Journal of Nursing Research, 45(2), 36–57. The original article,
copyright by McGill Library and Archives, is available under the CC-BY-3.0 licence.
1 For a discussion of colonization or the “invasion and eventual domination
of North America by European Americans,” and the subsequent ongoing
colonialism experienced by Indigenous communities, see Alfred (2009).
2 Cultural competency is defined as “skills and behaviours that help a
practitioner to provide quality care to diverse populations” (see National
Collaborating Centre for Aboriginal Health, 2013, for definitions of terms
including cultural awareness, cultural sensitivity, cultural competence, and
cultural safety). For resources on evidence-based practice or using evidence
and implementing best practices, see the Centre for Addiction and Mental
Health’s document Knowledge Exchange: Evidence-Based Practice (2014a). For
more on trauma-informed care or promoting the implementation of trauma-
informed practices in programs and services, see the Centre for Addiction
and Mental Health’s Knowledge Exchange: Trauma-Informed care (2014b).
3 This checklist was created by Sarah Hunt and Natalie Clark for the Justice
Institute of British Columbia, Social Services and Community Safety
Division (Justice Institute of British Columbia, 2002).
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PART THREE
Gendering, Discourse, and Power

7 Is It Normal or PMS? Women’s Strategies
in Negotiating and Resisting Negative
Premenstrual Change
Jane M. Ussher and Janette Perz
Introduction
Since the time of Aristotle and Plato Western medical explanations for
women’s reproductive distress have centred on the body, with medicine lay-
ing the blame for many forms of distress on wandering wombs and, more
recently, on raging hormones and neurotransmitter imbalances (Ussher,
1989). Contemporary Western medicine categorizes negative premenstrual
change as premenstrual syndrome (PMS) or premenstrual dysphoric dis-
order (PMDD), a fixed and unitary pathology within the woman deemed
to be caused by biomedical or psychological factors (Ussher, 2011) and
estimated to be of the same magnitude as major depressive disorder in
reducing women’s quality of life and economic functioning (Halbreich,
Borenstein, Pearlstein, & Kahn, 2003). However, disparities between and
within cultures in the reporting of premenstrual distress – and in the po-
sitioning of premenstrual change as pathology – raise questions about the
validity of individualizing biomedical and psychological theories of pre-
menstrual change (Cosgrove & Caplan, 2004).
For example, researchers have found lower rates of reported premen-
strual symptoms in many non-Western locales and cultures, such as China,
Hong Kong, Thailand, Sri Lanka, Pakistan, and India (Chang, Holroyd,
& Chau, 1995; Dennerstein et al., 2010; Hoerster, Chrisler, & Rose, 2003).
Other studies have shown that people in some non-Western cultures are less
likely to see premenstrual change as a serious problem that warrants medi-
cal attention (Chandraratne & Gunawardena, 2011; Wong & Khoo, 2011).
Rates of premenstrual distress also vary significantly across Western cul-
tures, suggesting that cultural factors influence the awareness of symptoms
or the perceptions of symptom severity (Dennerstein, Lehert, Bäckström,
198 Jane M. Ussher and Janette Perz
& Heinemann, 2009). Even within some Western cultures PMS is not uni-
versal. For example, a study that compared immigrant and United States–
born women who identified as Asian, Black, or Latina found that the
likelihood of reporting premenstrual distress increased with the duration
of U.S. residence, suggesting that exposure to mainstream U.S. culture
is associated with the diagnosis of PMDD (Pilver, Kasl, Desai, & Levy,
2011). Such a finding troubles the generalizability of assumptions that
are based on PMS research conducted with White, educated, middle-class
women, and draws attention to the erroneous assumption that Western
women are all middle class and of European origin.
The research challenging Western medical notions of PMS has led femi-
nist social constructionists to argue that PMS and PMDD are socially
constructed labels or culture-bound syndromes (Chrisler, 2004). They
point out that within the medical paradigm women monitor premenstrual
moods and behaviour in relation to often unrealistic dominant feminine
ideals of calmness, consistency, and capability (Brooks, Ruble, & Clark,
1977; Ussher, 2004), and blame themselves, or their bodies, for perceived
transgressions. In this way, women take up the subject position of “PMS
sufferer” (Chrisler & Caplan, 2002). Feminist social constructionists coun-
ter this scenario by conceptualizing premenstrual change as a normal part
of women’s experience, one that has been positioned as PMS or PMDD be-
cause Western cultural constructions promote a view of the menstruating
woman as labile or dysfunctional, and the premenstrual phase of the cycle
as a time of pathology (Chrisler & Johnston-Robledo, 2002; Ussher, 2006).
To be clear, a social constructionist view of PMS does not deny the real-
ity of premenstrual change. There is convincing evidence that during the
premenstrual phase of the cycle some women experience embodied and
psychological change accompanied by an increased sensitivity to emotions
or to external stress (Sabin Farrell & Slade, 1999; Ussher & Wilding, 1992).
Emotions, such as anger, sadness, and irritability, as well as creativity and
sexual desire can also feel more powerful than usual during the premen-
strual phase (Chrisler, Johnston, Champagne, & Preston, 1994; King &
Ussher, 2013). Meanwhile, the multitasking that is a normal part of many
women’s lives can be more difficult (Slade & Jenner, 1980), and distress can
result when the responsibilities of home and work cannot be accommodat-
ed simultaneously (Ussher & Perz, 2010). There is also a growing body of
research reporting an association between relationship strain and reports
of PMS, with evidence that, premenstrually, relationship satisfaction
can deteriorate (Clayton, Clavet, McGarvey, Warnock, & Weiss, 1999)
and that married women experience greater disruption of daily living as
Is It Normal or PMS? 199
a result of premenstrual symptoms (Dennerstein et al., 2010). This find-

ing suggests that the most commonly reported psychological symptoms
of PMS and PMDD – anger and irritation – can be conceptualized as a
legitimate response to the material circumstances of women’s lives, includ-
ing over-responsibility, lack of support, and relationship tension (Figert,
2005; Ussher, 2004).
However, women are not passive sufferers of premenstrual change, de-
spite their characterization as such within biomedical discourse. Women
report positive premenstrual changes, either alongside negative ones or in-
stead of them (Chaturvedi & Chandra, 1990; King & Ussher, 2013), and
some self-identified PMS sufferers accept premenstrual change as a normal
part of experience, embracing access to the “deeper energies” and emotions
they experience at this time (Ussher & Perz, 2013). There is also evidence
that women can experience negative premenstrual changes in emotion, be-
haviour, or embodiment without discursively constructing these as PMS
or experiencing any associated distress (Cosgrove & Riddle, 2003). Indeed,
women who resist the PMS moniker can be seen to be “rewriting ideologies
of gender” by creating “alternative” or “counter discourses” (Day, Johnson,
Milnes, & Rickett, 2010, p. 238) that subvert the pathologization of premen-
strual change.
One central aspect of this pathologization begins with the Western con-
ceptualization of emotion as stable, consistent, and under control. As Joan
Chrisler (2008) points out, PMS is an archetypal example of a “disorder”
that positions as illness the failure to self-regulate – in this case, women’s in-
ability to control expressions of anger. A “menstrual monster” threatens
to overwhelm women; women are socialized to believe that they “need
to work at self-control in every waking hour” (p. 2). Chrisler argues that
gender-role socialization and beliefs about femininity affect women’s sense
of whether they can (or should) regulate emotional or physical changes
that are experienced premenstrually. This socialization includes several
processes: the internalization of unrealistic standards against which wom-
en measure successful self-regulation; an obscuring of the impact of self-
objectification, self-sacrifice, and over-responsibility on self-monitoring of
internal sensations and needs; and the social construction of gendered per-
ceptions of power and self-efficacy that can affect self-regulatory strength.
Chrisler suggests that more research is required to understand how and
why women fear losing control and “how to help them to leave that fear
behind” (p. 2). The research we present in this chapter addresses this aim
by examining the experiences of women who resist the common descriptor
of the PMS self as “out of control” (Chrisler, 2008, p. 1; Ussher & Perz,
2010, p. 440), by rejecting a biomedical diagnosis of premenstrual change

or by claiming agency in negotiating premenstrual distress.
We adopt a critical realist epistemology in order to examine how women
resist biomedical discourse associated with PMS and negotiate negative
premenstrual experience. Critical realism recognizes the materiality of the
body and other aspects of experience but conceptualizes this materiality as
always mediated by culture, language, and politics (Bhaskar, 1989). Criti-
cal realist epistemology does not reduce materiality to discourse or claim
that material experience is without meaning unless discursively interpret-
ed. Rather, “material practices have an ontological status that is indepen-
dent of, but in relation with, discursive practices” (Sims-Schouten, Riley,
& Willig, 2007, p. 102). From this epistemological standpoint, then, we
move beyond a realism-constructionism (or mind-body) divide and avoid
unnecessary distinctions between subjective and objective or mental and
physical aspects of experience. From a critical realist viewpoint, premen-
strual change is accepted as a real phenomenon, but the lived experience
of the change must be understood within a cultural or relational context,
with meaning provided by the discursive and linguistic resources avail-
able to women. Within this framework a material-discursive-intrapsychic
(MDI) model (Ussher, 1999) provides a multidimensional analysis of the
interconnections among several aspects of premenstrual change, including
women’s embodied and psychological experience of it; the material and re-
lational context within which women live; the impact of PMS and PMDD
as socially constructed categories; and the psychological negotiation in
which women engage to make sense of their experience. Drawing on two
recent research studies for which the co-authors were co-lead investigators,
we use the MDI model to examine how relational and cultural construc-
tions of negative premenstrual change influence women’s lived experience
of premenstrual distress.
Reproduction and Resistance of Dominant

Discourses of Premenstrual Pathology
We begin by presenting findings from our research conducted in 2006–9,

which used mixed methods, including interviews with sixty women, to
examine the construction and experience of premenstrual change among
self-diagnosed PMS sufferers (Perz & Ussher, 2009; Ussher & Perz, 2010,
2013). The participants were Australian women aged twenty-two to forty-
eight (average age of thirty-five) – 80 per cent of whom had a partner – who
were recruited through advertisements placed in social media and through
local reproductive health care services. Forty-six women identified as het-

erosexual, the remainder as lesbian. The 47 per cent who reported having
children all indicated that their children lived with them. Of the 82 per
cent who reported being employed, 52 per cent worked full-time. Most
participants were Anglo-Australian and residents of Australia’s largest
city, Sydney. We conducted one-to-one, semi-structured interviews lasting
forty-five to ninety minutes. Interviews took the form of a discussion be-
tween the interviewer and the participant; we avoided leading participants,
by keeping interview questions open and general. The interviewer began
by asking women to describe a typical experience of PMS and how this
varied across relational contexts – that is, with partners, family, friends, or
colleagues. The discussion then moved to exploring coping strategies.
We adopted the approach of a feminist, Foucauldian discourse analysis,
which examines the role of discourse in the constitution of subjectivity and
social practice while acknowledging the material conditions that influence
such experiences and the role of discourse in wider social processes of
legitimation and power (Ussher & Perz, 2014). We also drew on thematic
decomposition (Stenner, 1993), which separates text into coherent themes
that reflect the subject positions allocated to, or taken up by, a person
(Davies & Harre, 1990), where it is assumed that narratives do not simply
mirror a world “out there” but are constructed, creatively authored, rhe-
torical, replete with meaning, and interpretive (Potter & Wetherall, 1986;
Reissman, 1993).
All of the interviews were transcribed verbatim. A subset of interviews
was independently read and reread by both authors and a research as-
sistant to identify first-order codes – such as “embodied changes,” “emo-
tional distress,” “relational issues,” “PMS at work” – and “triggers for
premenstrual distress.” The entire dataset was then coded, using NVivo, a
computer package that facilitates organization of coded qualitative data.
Coded data were then read independently by both authors. Codes were
grouped into higher-order themes, a careful and recursive decision-making
process, which involved checks for emerging patterns and for variability
and consistency, and judgments about which codes were similar and dis-
similar. The thematically coded data were then collated and reorganized
through reading and rereading, allowing for further refinement and review
of themes, where a number of themes were collapsed into each other, and a
thematic map of the data was developed. In this final stage we developed a
core category of “coping with negative premenstrual change,” which essen-
tially linked many of the themes. In the presentation of the results below
we use pseudonyms to maintain participants’ anonymity.
PMS as Pathology versus Awareness

and Acceptance of Premenstrual Change
All of the women we interviewed described PMS as being characterized

by heightened premenstrual irritability, intolerance of others, and over-
sensitivity. Women described their premenstrual selves with terms such as
irritable, cranky, short-tempered, snappy, confrontational, bitey, impatient,
grumpy, stroppy, frustrated, stressed, annoyed, and teary, and leaving them
with a “short fuse” (Ussher & Perz, 2013). Perceptions of embodied chang-
es, including “bloating,” “pimples,” and feeling “swollen” or “fat,” also led
many women to say that they felt “unattractive,” “ugly,” or “uncomfortable
in my own skin.” However, while the definition of PMS was consistent, we
found greater variety in how women accounted for these interpersonal and
embodied experiences.
The majority of interviewees adopted the dominant discourse of pre-
menstrual change as pathology, positioning their feelings as “out of con-
trol”: “I physically feel like I can’t stop it. It’s just this physical feeling
of, I don’t know, anger inside” (Melanie); “I can’t help it” (Leah); “It’s
feeling out of control” (Joan); “I don’t have control over how I feel at
all” (Penny). These accounts of PMS can be characterized as a rupture
in the self-silencing that many of the women implied they enact for three
weeks of the month; the feminine ideal of caring compliance is temporar-
ily replaced by anger and assertiveness (Perz & Ussher, 2006; Ussher, 2004;
Ussher & Perz, 2010). However, this expression of premenstrual irritation
or anger was invariably followed by guilt and self-criticism, suggesting that
self-positioning as a PMS sufferer does not exonerate women from “bad”
behaviour, as has been previously suggested (Elson, 2002). Thus, Rachel
told us, “You feel horrible about it the next week … it makes you feel sick.”
Stephanie said she feels “really upset” and “angry” with herself. In these
remarks Rachel and Stephanie exhibit what another participant, Casey,
described as her “inner critic,” the surveillant, judging self that is most
vigilant when women express anger or discontent within intimate relation-
ships (O’Grady, 2005). Indeed, for the majority of the women interviewed,
both lesbian and heterosexual, it was the impact of their premenstrual
moods on others that ignited self-castigation. As Leah commented, “I feel
remorse, because it’s like, ‘Oh, I’m really sorry,’ because I’ve visibly hurt
somebody’s feelings, and I don’t like to do that; that’s not who I am as a
mature, loving person.” In these accounts women adopt the subject posi-
tion of the menstrual monster. They also accept the medical narrative of
premenstrual change as illness, which they categorize as PMS.
The above self-descriptions stand in stark contrast to the acceptance of

the premenstrual self that is evident in Tracy’s account: “As human beings,
it’s good to have enforced emotional periods, I suppose ... I suppose I’ve
been aiming at being a bloke, to some extent, trying to keep everything
sane. But now I think I embrace it as an opportunity to just rest and be
more in tune with myself and be emotional. I think I was probably fighting
being emotional in the past, and that’s what caused so much discomfort
and stress.”
Tracy explicitly resists the premise that underwrites biomedical concep-
tualizations of PMS: normal emotions are constant, and fluctuations in
mood, sensation, or reactions to others are a failing or pathology (Chrisler,
2008; Ussher, 2003b). In Tracy’s statement, premenstrual changes are ac-
knowledged and accepted. The predictability of her changes facilitates
understanding. Monica echoed this insight: “I kept a note of my cycle
regularly so that I would know when I was going to start feeling tired so I
could explain to myself what was happening.” Olivia told us, “Sometimes
I actually look at it in advance and say, ‘Well, my periods are due around
here, so my PMS would probably be due around here, so I’ll be more aware
around that time.’” Sophia, meanwhile, said that being aware of premen-
strual change “has really helped me understand it more. It’s helped me
normalize it.” For a number of our participants, normalization resulted in
a strategy of tolerance of negative premenstrual change, which was recog-
nized to be temporary. As Helena told us, “I would just go with it and go,
‘Oh, look, in two days [laughs] this will be fine’ [laughs].” Judith said, “You
just sort of have to keep going.”
A primary function of awareness of premenstrual change among partici-
pants appeared to be to allow premenstrual emotions to be judged as reason-
able and, therefore, to resist the discursive positioning of the premenstrual
woman as mad, bad, or dangerous (Chrisler & Caplan, 2002). Olivia told
us, “It’s a weight off my mind. ’Cause at first I used to think I was going a
little crazy … it’s helped me deal with – ‘those are PMS feelings.’” Similarly,
Danni said she told herself, “Oh, okay, I know now, you’re not actually
the wicked witch.” Participants in the present study who did not describe
anticipatory awareness of negative premenstrual change were more likely
to self-pathologize, describing themselves, when they were premenstrual, as
“crazy” or “mad” (Stephanie); a “nut case,” “absolute psycho,” or “schizo”
(Sandra); “out of my mind” or “a complete loony” (Joanne).
Even those in the study whose self-understanding resisted the biomedi-
cal positioning of PMS as pathology did not necessarily embrace premen-
strual mood change, however. All of the women adopted the diagnostic
category of PMS to explain their premenstrual experiences. Yet, PMS

was not universally understood as an illness. Rather, some saw PMS as
“natural” or a reflection of “true feelings” about domestic, relationship,
or work issues. For example, Olivia said her premenstrual anger was
about “housework, and my role as a woman, and why do I have to do all
of this. Things that I kind of repress ... come out to the surface.” Caitlin
told us that “the only time I ever see people as being incompetent is when
I have PMS! [laughs] Otherwise I keep blaming myself for everything.”
In these accounts women not only avoid taking up a sick role – wherein
their bodies (or minds) warrant medical treatment – but also subvert the
practices of acquiescent femininity in which they engage during the re-
mainder of the month. PMS thus signifies rebellion and resistance, rather
than weakness and pathology, and breaks in self-silencing become a sign
of women’s agency.
Recognition and acceptance of negative premenstrual change can also
give women permission to engage in coping strategies to avoid or reduce
premenstrual distress. For example, Merrin told us, “I’ll actually give my-
self permission to actually go and lie down for half an hour. Even half
an hour will make a substantial amount of difference.” The discourse of
PMS as normal or natural, then, can facilitate agency in relation to pre-
menstrual change through care of the self, avoidance of stress and conflict,
and escape from the materiality of relational demands and responsibilities.
Below we discuss each of these strategies in greater detail.
Resisting Pathologization: Facilitating Coping

with Premenstrual Distress
av o i d a n c e o f s t r e s s a n d c o n f l i c t
Biomedical constructions of PMS leave women with only one coping mech-
anism for negative premenstrual change: pharmaceutical interventions.
Currently, serotonin reuptake inhibitors (SSRIs) are the medical treatment
of choice (Steiner & Born, 2000). Resistance of a pathologizing discourse
opens up the possibility of alternative coping strategies that focus on alter-
ing the woman’s environment and addressing the triggers of premenstrual
distress. The premenstrual coping strategy most commonly reported by
participants was avoidance of people or situations that had the potential
to provoke anger and irritation, in which Joan felt “rile[d] up,” and Judith
as “trapped” and like a “caged tiger or something, pacing,” when she was
premenstrual. Judith said, “[Though] I love my children to death, [it is]
probably the only time that I ever feel that I would just want to get up and
walk away and go away by myself for a couple of days.” Successful planning
can lead to the execution of this desire to avoid stress. For example, Rachel
reported, “If I can avoid something on that week, I will,” and Sophia told
us, “The kids … I try not to get into conflict, into confrontation with them.”
While accounts of premenstrual avoidance were most commonly reported
in a family or couple context, a number of participants gave accounts of
avoidant coping in a work context. For example, Melanie said, “[I feel]
more annoyed by other people, or what they say affects me more, so I guess
I sort of withdraw a bit, especially at work,” and Kathryn said that she “just
diverted [her] phone” if she felt on “an uneven keel” premenstrually.
Avoidance has been described as “maladaptive” and a reflection of “trait
anxiety” in previous research conducted with women who report PMS
(Kuczmierczyk, Johnson, & Labrum 1994, p. 304) – judgments that explic-
itly pathologize this style of coping. However, participants in the present
study described diminishing negative emotional experiences through an-
ticipatory awareness and subsequent avoidance of situations that might
provoke anger or distress. This suggests that such avoidance involves ef-
fective self-regulation (Folkman, Lazarus, Dunkel-Schetter, DeLongis, &
Gruen, 1986), rather than reflecting maladaptive or neurotic tendencies in
the woman. Anticipation or avoidance of stressful situations was not al-
ways possible, however, and many participants gave accounts of experienc-
ing unexpected situations that elicited premenstrual anger or irritation. As a
result, they described coping with negative premenstrual emotion by exert-
ing self-control and leaving a situation to avoid escalation of conflict when
they had become angry. For example, Katie described being in the kitchen,
“and … I can remember just getting so cranky, I just went in and sat down
in our formal lounge room just to stay away from everyone, because I was
just so angry.” Similarly, Lillian described being angry with her two boys
but feeling “all right” once she “got away from the situation.” This exertion
of self-control was not without emotional effort for women, as Casey re-
ported: “It’s taken every ounce of energy and sort of restraint that I’ve got.”
In some ways the emotional cost of the self-control exerted by partici-
pants is reminiscent of the pattern of self-silencing that Jack (2001) has
associated with women’s depression, where women repress their own feel-
ings, in particular their anger, and put the needs of others first in order to
avoid relationship conflict or loss. Many participants in the present study
were overt in their descriptions of self-silencing as a premenstrual coping
strategy. Thus, Melanie told us, “PMS time I’ll start to think, ‘Oh, tummy’s
blowing up, right, I’m feeling a bit irritable, just try and keep a lid on it’”;
Jill talked about training herself to “step back and chill” so that she didn’t
“explode”; and Rachel said, “I might just keep it in and just be like angry
within myself about the situation.”
In some accounts self-control was positioned as necessary for the protec-
tion of others, a result that conforms with Jack’s (2001) description of self-
silencing. For example, Alice described “hibernating” because of a fear of
being unable to “rein [herself] in” and wanting to avoid “hurting people
with words,” because “it’s not their fault.” However, commonly, partici-
pants said they used premenstrual self-silencing and avoidance of contact
with others to protect the self. As Fiona reported, “I will avoid having
contact with other people or putting myself in situations where I know
that I’m going to be vulnerable.” Similarly, Kathryn said, “I just wanted
to really minimize anything that would impact on me ’cause I knew I was
really sensitive.” These responses suggest that in accounts of premenstrual
change self-protection can be a motivation for self-silencing, a finding that
challenges the assessment of self-silencing as simply a manifestation of
policing the self in the name of regulating the boundaries of acceptable
femininity (see Ussher, 2004). In our study women manifested awareness
of their own sensitivity or reactivity during the premenstrual phase of the
cycle and adopted the discourse and material practice of care of the self.
ca r e o f t h e s e l f
While many participants reported wanting to be alone premenstrually to
avoid difficult situations or people, women also craved solitude to care for
the self. As Jill told us, “solitude is wonderful, being by yourself, doing
your own thing.” A number of women described wanting time out in order
to be “comfortable” (Joan) or to engage in “self-preservation” (Jackie). As
Jackie continued, “you just need rest, you know. And you don’t feel like be-
ing cheered up, because you’re just … just want, you know, a bit of peace.”
Joan described the premenstrual phase as a time when she would go to the
ocean, as “the best, most calming thing that I can do for myself.” Katie
described spending a long time in the shower “listening” to herself and
allowing herself to forget that she should be “doing things in the kitchen,
and the kids are at you.” A number of women also described a combina-
tion of timeouts and exercise as management strategies to avoid or reduce
premenstrual distress. Jocelyn achieved this through gardening: “I’ve got a
really big garden that I maintain and I like to take myself out there … and
yeah I suppose I do like to be a little more alone around that time.” Maggie
described going for a walk for similar reasons: “Sometimes I just like to go
out and go for a walk and just put the headphones on, I find that helps;
getting out by yourself makes a difference.”
These accounts are evocative of the “room of one’s own” that Virginia
Woolf identified as being so important to women’s creativity as well as to
their sanity (Woolf, 1957). The women’s descriptions of the benefits of be-
ing alone also resonate with more recent descriptions of alone time as an
essential “health promoting resource for women” (Forssén & Carlstedt,
2006, p. 175). However, in accounts of coping with negative premenstrual
change, women did not report that they literally needed a room of their
own in order to take time out from others; they could achieve solitude and
divest themselves of responsibilities by engaging in gardening, watching
television, reading a book, taking a long shower, or exercising. While ex-
ercise has previously been acknowledged to be an effective coping strategy
for premenstrual distress (Kirkpatrick, Brewer, & Stocks, 1990), these ac-
counts suggest that the absence of interaction with others and the ability
to focus on care of the self through exercise also allow women to regulate
negative premenstrual change and avoid premenstrual distress.
Many participants also described using rest and a healthy diet as proactive
coping strategies for self-care and reducing premenstrual distress. Melanie
told us, “I try to get more sleep and make sure that I eat well,” and Amy said,
“What I’m trying to do around those physical symptoms [is] just really try
and eat very well and get rest.” Tracy had a similar approach: “Not drink-
ing caffeine beverages. Alcohol. Avoiding alcohol. Sugars. Avoiding sugars.
And eating sort of a clean diet really makes a massive difference. To me,
anyway.” A number of women also described controlling food cravings as
an active coping strategy: “I really, really want to be eating all the chocolate
and all the pizza in the world, but if I do, it’s going to make me feel crappier.
So you’ve got to do these things yourself” (Shona). “I think I’m more aware
of that, and so I don’t go for the chocolate and whatever. I go for something
that’s warm or, yeah, that’s healthy. And then I’d feel better” (Nina).
In the context of coping with negative premenstrual change these ap-
proaches can be framed as a positive strategy of self-regulation, reflect-
ing self-awareness of the negative impact on premenstrual emotions of a
diet high in caffeine, alcohol, fat, sugar, or carbohydrate (Bussell, 1998).
However, these strategies can also be conceptualized as examples of bodily
regulation influenced by the cultural construction of women as needing to
be slim and in control of their eating (Bordo, 1993), suggesting that there
is a fine line between self-surveillance of eating behaviour and self-care.
A substantial proportion of women also reported taking self-prescribed
herbs (such as St John’s Wort, Vitex, or evening primrose oil) and vitamins
or minerals (in particular B-complex and magnesium) as part of their pre-

menstrual self-care. The majority reported satisfaction with such remedies.
However, as Jacinta commented, “I don’t know whether it’s a placebo, or
whether it’s actually doing anything.” A small minority of women had also
been prescribed the contraceptive pill and, in the case of one participant,
anti-depressants to reduce premenstrual distress. However, all of these di-
etary-supplement or pharmaceutical coping strategies were also accompa-
nied by psychological or behavioural strategies, demonstrating that coping
is complex and multifaceted (Folkman & Lazarus, 1985).
e s c a p i n g r e l at i o n a l d e m a n d s a n d r e s p o n s i b i l i t i e s
Participants also described escape from relational demands and responsi-
bilities as a means of coping with premenstrual changes. As Eleanor told
us, “I guess that’s the time where I feel, ‘Hey, I’m just not feeling a hun-
dred per cent and I just want you all to stop putting demands on me,’ you
know? The son, the dog, the work, everybody.” Merrin described taking
time premenstrually to rest and contrasted this with the ways in which she
coped with family responsibilities during the rest of the month, when she
paid little attention to her “own bodily state” and prioritized the needs of
her children. “I’ve got three children, and they’re a little bit older now, but
my attentiveness [is] to their needs, and I might deny things like realizing I
need to go to the toilet, for example – I can carry that for a long period of
time – or even my own hunger or whatever ... You just become by nature
more outwardly focused, so, just being attentive to my own bodily state,
even very basic functions, I think I’ve lost my capacity to sort of pay atten-
tion to those things.”
Feminists have pointed out that the materiality of the mothering role,
combined with the predominant cultural representation of the mother
as “ever-bountiful, ever-giving, [and] self-sacrificing” (Bassin, Honey, &
Kaplan, 1994, p. 2), is a factor in premenstrual distress (Ussher, 2011).
Merrin implicitly understood this when she legitimized taking time out for
herself through recognizing premenstrual change. She was thus temporar-
ily absolved from responsibility to care for others, even if only for “half an
hour,” which allowed her to self-regulate her premenstrual emotions and
reduce distress.
Many women were only able to legitimize time out from responsibilities
when they were premenstrual. For example, Eleanor told us that her pre-
menstrual week was the only time she allowed herself to “veg out in terms
of not doing the washing up after dinner, or not bothering to do the iron-
ing and then pay the consequences of ironing as we go.” Similarly, Olivia
said, “I’ll try and take things easy in the house a bit ... I’ll ask for a bit more
help,” and Jackie said, while she normally worried about housework, “I
just don’t care. Don’t cook dinner and things like that.”
In their accounts the women reveal the critical self-surveillance in which
they engage for three weeks of the month, wherein they judge themselves
against the standard of the self-renunciating, competent, and capable good
wife and mother (O’Grady, 2005) for whom having “a lazy day” violates
standards of idealized femininity (Chrisler, 2008, p. 8). Participants de-
scribed being premenstrually “a little easier on myself … being a little
kinder” (Olivia), “gentler on myself ” (Celia), “a little bit nicer to myself ”
(Danni), and “self-indulgent and precious” (Nancy), and “cutting myself
a little bit of slack” (Merrin), suggesting that critical self-surveillance is
relaxed at this time. This relaxation serves to further legitimate engagement
in coping strategies that function to care for the self in order to avoid or
reduce premenstrual distress.
Feminist writing invariably casts women’s self-silencing and self-policing
of emotion as a reflection of internalized archetypal discursive represen-
tations of the calm, controlled, and capable woman (Jack, 1999; O’Grady,
2005). As self-policing is normalized, the boundaries of idealized femi-
ninity are maintained and regulated, as are the behaviour and emotions
of individual women, who fear being positioned as “other” if they fail to
conform. However, a more complex and nuanced picture of self-regulation
emerged from our participants’ stories. While all of our participants po-
sitioned their negative premenstrual emotions as PMS, thereby adopting
idealized constructions of femininity and a biomedical discourse, they at-
tributed premenstrual reactivity, anger, or the desire to be alone to rela-
tional factors or to stresses and responsibilities in their lives. Therefore,
the women could engage in active coping to reduce distress. Equally, while
premenstrual dietary control can be conceptualized as adherence to mi-
sogynistic beauty ideals of thinness (Jeffreys, 2005), and consumption of
dietary supplements and medication as acceptance of the pharmaceuti-
cal industry’s “disease mongering” through the active encouragement of
the pathologization of “ordinary ailments” (Moynihan, Heath, & Henry,
2002, p. 324), participants positioned both as self-care practices that were
part of a broader range of strategies for premenstrual coping.
Their constructions, which imply agency, are analogous to what
Sue McKenzie-Mohr and Michelle Lafrance call the “tight-rope talk”
(McKenzie-Mohr & Lafrance, 2011), wherein women construct themselves
as both “agents and patients: both active and acted upon” (p. 64). This
double-edged talk enables women to take credit for agency in coping and
to deflect blame for having PMS. For McKenzie-Mohr and Lafrance

(2011, p. 66), this “both/and” position enables the re-authoring of eman-
cipatory counter-stories that challenge oversimplifying either-or binaries
that cast women as “agent or patient,” “powerful or powerless,” or, in the
case of PMS, premenstrual sufferer or non-sufferer or coper. As Catrina
Brown (2007) has argued, the “both/and” position “honors women’s
agency and power while not minimizing the impact of oppressive social
discourses and social relations” (p. 275). “Both/and” allows acknowledg-
ment of the materiality and intra-psychic consequences of premenstrual
distress and the women’s agency and power in anticipating and coping
with premenstrual change. Adopting the subject position “PMS sufferer”
thus evokes connotations of the monstrous feminine and makes meaning
of the distress of women by legitimizing their experiences as real. From
this perspective, reproduction and resistance of discourse overlap rather
than remaining discrete and separate processes (Day et al., 2010).
The Inter-subjective Construction and Experience of PMS
Consistent evidence points to PMS as an inter-subjective experience, with

the constructions and responses of partners affecting women’s experience
of premenstrual change. Supportive partners can alleviate premenstrual
distress, and unsupportive partners can exacerbate it (Jones, Theodos,
Canar, Sher, & Young, 2000; Ussher & Perz, 2013). In the present study,
responses by partners, children, and close friends had an impact on the
women’s ability to resist the pathologization of premenstrual emotion and
to engage in coping strategies to reduce premenstrual distress. A number of
participants gave accounts of family members facilitating time out. For ex-
ample, Joan told us, “I don’t know quite what do to with myself sometimes,
and by saying, you know, ‘I need to withdraw,’ he [partner] understands.”
Similarly, Susannah said, “We both realize it’s a very good thing to have
your own time.” Caroline described her children as saying to her, “Mum, do
you think you should go for a run today?” if she was in a “cranky mood,”
and Fiona said, “I will sort of go off and shut myself in the toilet and cry!
[laughs] And usually I feel better after that, you know. And my husband
knows how to deal with it … He’ll sort of go, ‘Well, give her some space
and she’ll get over it.’”
Support for negative premenstrual change (what some women call PMT,
or premenstrual tension) can also consist of spending time with a premen-
strual woman and facilitating her self-care. For Sheridan this took the form
a “pyjama and TV night” with her friend: “I’ll say, ‘Okay, I’ve got PMT. Do
you want to come over here?’ And it’s pyjama and TV night. So we’ll have
doonas [bed covers] ready, and it’s a very kind of comforting understand-
ing that we’re just going to be sitting around and trying to keep warm.”
Single women reported that it was easier to engage in self-care, as they
did not need to negotiate having their “own space.” Celia told us, “Yeah.
I want more of my own space. So they feel like they’re intrusive.” When
asked, “Is that something that isn’t easy to get?” she replied, “My own
space? It is when you’re single.” Single women’s ability to take time out may
partly explain the previously observed finding that women who are single
are less likely to report premenstrual distress (Dalton, 1977).
While there were no notable differences between accounts by hetero-
sexual and lesbian women of premenstrual change and coping, all of the
interviewees who were in lesbian relationships reported that their partners
were supportive and able to empathize with and understand premenstrual
change, thus facilitating premenstrual coping (Ussher & Perz, 2008). Shea
commented, “In terms of the response … it’s just really understanding and,
I guess, supportive … It’s just like, ‘This is how I’m feeling. That’s okay.’”
Similarly, Linda told us, “I’m extremely lucky that Helen [partner] is an
extremely understanding person, and so I get what I need at that time.”
Women in lesbian relationships were also more able to divest themselves
premenstrually of responsibilities in the home, with greater support from
their partners. For example, Jocelyn said that her partner was “very under-
standing” and that her partner would do the “housework on those days
(and) doesn’t expect too much from me.” Bec described worrying about
household finances when she was premenstrual, and her partner saying,
“Don’t worry about it, I’ll fix it up, and we’ll work it out later.” Casey
described how her partner would “take some of the responsibility,” cook
dinner, and run her a bath when she was premenstrual, allowing Casey to
“just be.”
In contrast, only about half of participants in heterosexual relationships
reported supportive reactions from male partners. This support was most
common in contexts where women were able to name PMS and articulate
their premenstrual needs. Joan said of her relationship with her husband,
“We have ways of dealing with it and supporting each other for actually
being able to recognize what’s going on and that we know that it will pass,
and maybe eventually it will get better.” Only a small proportion of the
heterosexual women who asked, premenstrually, for practical support in
the home received it. For example, Janice told us, “On my anxious day
… he is really supportive, like, he’ll do the housework, or dinner, and all
kinds of stuff.” Merrin described “a couple of occasions where I’ve felt so
unwell, when I was so exhausted, that I’ve just said that I can’t cook din-
ner tonight, and I just sort of left him to it, with very little notice, and he
mobilized take-away” because “he’s not a good cook.”
These descriptions support previous research showing that PMS is an
inter-subjective experience and that supportive partners can alleviate pre-
menstrual distress, and unsupportive partners can worsen it (Jones et al.,
2000; Ussher, Perz, & Mooney-Somers, 2007). Partners who recognize
premenstrual distress and support women in taking time for themselves
challenge gendered discourses of the self-renunciating good woman, thus
allowing women’s self-policing to be relaxed at this time of the month. Our
finding that this was more common in lesbian relationships can be linked
to previous research reporting that women in same-sex relationships con-
form less often to traditional feminine gender roles (Bailey & Zucker, 1995)
and experience more often an egalitarian relationship structure (Green,
Bettinger, & Zacks, 1996) that is manifested in a capacity for mutual em-
pathy, empowerment, and relational authenticity (Mencher, 1990), as well
as an adaptability in dealing with both relational needs and domestic tasks
(Connolly, 2005, p. 270). The positive impact of a same-sex relationship on
women’s premenstrual changes suggests that the construction of feminin-
ity within (or outside of) a heterosexual matrix influences women’s ability
to exert agency in relation to premenstrual change. Gender, then, is not
something that we are but something that we do (Butler, 1990), a perfor-
mance invariably negotiated differently outside of a heterosexual matrix,
where different role expectations, opportunities, and constraints apply.
Resisting Diagnosis as a PMS Sufferer:

The Cultural Context of Premenstrual Change
Constructions of menstruation and premenstrual change can vary across

cultures, further illustrating the socially constructed nature of reproductive
syndromes. The importance of cultural context was illustrated by the find-
ings from our research conducted in 2010 into the constructions and experi-
ences of sexual and reproductive health among Assyrian and Karen women
who had arrived in Australia as refugees (Ussher et al., 2012). Forty-two
women participated in five focus groups each made up of between seven
and nine women. Participants were recruited through local community
organizations. The Assyrian community is made up of Syriac-speaking
Christians who identify as the Indigenous population of Iraq, and whose
migration to Australia was precipitated by conflict in the region from the
late 1980s. The majority of Karen community members had migrated to
Australia from Burma-Thailand border camps, where they had sought shel-
ter from persecution in Burma; they are primarily Christian, with a small
number identifying as Buddhist.
In two of the focus groups, one Karen, and one Assyrian, the average
ages were twenty-five and twenty, respectively, and the majority of partici-
pants were unmarried. In the remaining Assyrian group, the average age
was forty-five, and all women were married or widowed. Similarly, in the
remaining two Karen groups, the average ages were forty-one and thirty-
five, and the majority were married. The Assyrian participants had arrived
in Australia 7.5 years before, on average, having spent three to five years as
refugees in Syria or Jordan. The Karen participants had arrived 3.5 years
before, on average, having spent between ten and eighteen years as refugees
in Thai border camps. Overall, participants had two children, on average,
and had completed ten years of schooling.
In preparation for the focus groups we sought cultural insight, advice,
and guidance on the research method and questions from four key infor-
mants, two from each community. To facilitate stakeholder involvement
and wider feedback on the study, we also formed a steering group that in-
cluded colleagues and community members who had worked in relevant
areas of health or health psychology. The focus-group interviews were semi-
structured and lasted between one and one-and-a-half hours. The interview
schedule included open questions on women’s experiences of sexuality and
sexually transmissible inflections; fertility; post-natal depression; abortion;
contraception; menstruation; and help-seeking behaviour. In addition to
the participants, the groups included two facilitators (the authors), an in-
terpreter, and a community health worker who organized the group, with
childcare provided.
The English-spoken sections of the interviews, including participant
comments and translator interpretations, were professionally transcribed
verbatim. The transcripts were integrity checked by listening to the audio
recording and reading through the written text. We used thematic decom-
position (Stenner, 1993) to analyse the data, as described above.
When asked about negative premenstrual change, all groups of women
acknowledged its existence, but only the women under age twenty-five iden-
tified the experience as “PMS.” This finding is illustrated in the following
account emerging from one of the Assyrian focus groups:
INTERVIEWER 1: Women, some women, talk about feeling different before

their periods, so can feel angry, or irritable, or sad –
PARTICIPANT 8: Yeah. Not so stable.
INTERVIEWER 1: Is that an experience any of you have had?

PARTICIPANT 4: Yes, yeah, I am like that.
[Participants talking in the background]
PARTICIPANT 3: Tired, just a bit tired, and sick, and irritable.

PARTICIPANT 5: Yeah, yeah.
[Participants talking in first language – 16 seconds]
INTERVIEWER 1: So you’ve had that experience?

PARTICIPANT 1: Yeah, yeah.
INTERVIEWER 2: Do you have a word or a way of describing that to your
friends or to your family?
[Interpreter talking in first language –11 seconds]
INTERPRETER: You mean, what do you mean, a word to describe –

INTERVIEWER 2: Yeah, do you call those feelings something?
[Interpreter talking in first language – 4 seconds]
PARTICIPANT 8: No.
PARTICIPANT 1: No, doesn’t have a name.
In this exchange women acknowledge premenstrual change, describing

both physical and psychological changes, but agree that there is no name
for it within their cultural group. A similar account emerged from the in-
terviews with Karen women:
INTERVIEWER 1: In Australia some women experience what they call

premenstrual syndrome or PMS. Have you heard of this?
[Interpreter and participants talking in first language – 29 seconds]
PARTICIPANT: Never heard of that. [laughs]

INTERVIEWER 1: What this is, some women say before their periods they
feel different in themselves in their moods, so they can feel tense or angry
or depressed –
PARTICIPANT ?: Oh, yeah.
INTERVIEWER 1: Is that something you have ever experienced? Yes?

PARTICIPANT ?: Yeah.
PARTICIPANT ?: Yeah, we experience this.

INTERVIEWER 1: You have that?
INTERVIEWER 2: Do you have a word or a way of describing that to other
people?
PARTICIPANT ?: So, yeah, no name for that. [laughs]
Only one of the younger Assyrian women, participant 1, reported label-

ling her premenstrual change as “PMS.”
PARTICIPANT 1: Well, when I get my period I get frustrated [chuckles]

and that –
PARTICIPANT 2: She PMSs.
PARTICIPANT 1: PMSing a lot, sometimes, not all the time. So I like to stay
away from people so I won’t yell at them, so that’s why they know when
I have my period – my mum doesn’t talk to me.
These accounts support the view that PMS is a culture-bound syndrome.

The majority of Karen and Assyrian women reported premenstrual change
in the interview, but only the younger women, who were educated and ac-
culturated in Australia, described this change as PMS. None of the women
described premenstrual change as a concern that would warrant comment
or medical attention. This finding was illustrated by the laughter that ac-
companied the discussion of premenstrual change, as well as by women’s
quizzical expressions when we raised the subject of PMS. The study dem-
onstrates that the lived experience of premenstrual change involves an in-
teraction among several dimensions, including materiality (emotional and
physiological changes); discourse (language used to describe such chang-
es); and the intrapsychic (women’s negotiation of premenstrual change and
levels of distress). None of these dimensions can be conceptualized with-
out the others.
In the accounts of study participants, menstruation was a “normal”
experience and a taken-for-granted aspect of womanhood. However,
menstruation did have significance in women’s lives. All of the participants

were in agreement that coital sex did not happen during menstruation, po-
sitioning such sex as “dirty,” “not clean” (Karen), “not in our beliefs,” or
as a risk of “infection” (Assyrian). These descriptions support previous
reports that taboos associated with sex during menstruation originate in
hygienic, health, aesthetic, or moral beliefs (World Health Organization,
1981). However, one Assyrian participant said, “It’s a very good [chuckles]
– it’s a very good excuse so they won’t touch us at that time,” a comment
that was met with laughter within the group. This suggests that some wom-
en also utilize cultural taboos associated with menstruation (Ussher, 2006)
to exert agency in relation to coital sex, allowing them to say no without
confrontation with their husbands or conflict with cultural constructions
of marital sex as unquestioned (Ussher et al., 2012). Such agency stands
in contrast to Western feminist theories of the impact of menstrual ta-
boos, which are deemed to be detrimental to women’s experience of the
reproductive body (Fahs, 2011). This contrast further demonstrates that
we must conceptualize the meaning of menstruation and negotiation of
menstrual practices within a cultural context.
Conclusions
The findings of these two studies support the conclusion that self-diagnosis
as a PMS sufferer and resistance of such diagnosis are material-discursive-
intrapsychic phenomena made up of a combination of embodied and
psychological changes experienced premenstrually; of discursive construc-
tions of such change as pathology (or as normal); and of women’s intra-
psychic negotiation of both experience and discourse.
In the first study, in response to Joan Chrisler’s (2008) call for more re-
search on how and why women fear losing control, and “how to help them
to leave that fear behind” (p. 2), we examined the experiences of Australian
women who self-diagnose as having PMS. Biomedical and broader cul-
tural constructions of negative premenstrual emotion as pathological pro-
vide an explanation of why women fear loss of control premenstrually.
However, the majority of participants we interviewed reported a consistent
pattern of negotiation and management of premenstrual distress, suggest-
ing that they were able to leave this fear behind. From their responses we
can surmise that PMS is not a fixed unitary illness but rather an ongoing
process of negotiation. Distress levels are associated with women’s par-
ticular construction of premenstrual change and with the strategies they
engage in order to cope, within the context of culture and relationships.
PMS is thus not the underlying pathology that causes distress, but is the
distress itself – a diagnostic label given to describe negative premenstrual
change (Jones et al., 2000).
Women’s resistance and coping in the context of negative premenstrual
change is also a material-discursive-intrapsychic process, with each of these
aspects of experience irrevocably interconnected. The women in our stud-
ies engaged in a range of psychological coping strategies, including self-
awareness; recognition and acceptance of premenstrual change; resistance
of a pathologizing discourse; and strategies to avoid or reduce premen-
strual distress. In addition, it was clear from this research that the material
context of women’s lives, including over-responsibility, partner support,
and the presence of relational or social stressors, plays a significant part in
both distress and women’s ability to adopt coping strategies. While many
Western women, particularly those with children, position anger or irrita-
tion about burden of care as a premenstrual symptom (Ussher, 2003a), we
can reframe these emotions as a legitimate reaction to over-responsibility
or absence of partner support in the home. This interpretation is reminis-
cent of a cartoon described by Figert (2005) of “an obviously worn-out
woman holding a screaming child and telling her husband (sitting in the
lounge chair and reading the paper) that ‘this is stress, not PMS’” (p. 110).
Figert concludes that we need a “return to a menstrual hut … and its
monthly release from traditional women’s roles of cooking, cleaning and
family duties” (p. 110).
This release is something that some of the participants in the first study
(of self-diagnosed PMS sufferers) gave themselves permission to take,
adopting the discursive construction of PMS as a time when self-care is
permissible. Their legitimization of taking time out from daily stress or
responsibility demonstrates psychological resistance to gendered discourse
that emphasizes women’s self-renunciation (Jack, 1991) and women’s self-
care at other times of the month as selfish (O’Grady, 2005). The “resource
accumulation” (Aspinwall & Taylor, 1997, p. 420) required to enact re-
sistance and engage in coping strategies is also gendered. However, some
women interviewed in this first study, in particular women in heterosexual
relationships, did not have the material resources or social support needed
to avoid stress or engage in self-care premenstrually (Ussher & Perz, 2013).
These women may not appear to have the “willpower … skillpower … and
self-efficacy” that Chrisler (2008, p. 2) deems essential to self-regulation.
On the surface at least, they pathologize premenstrual anger or the desire
to be alone and see their inability to emulate the ideals of the competent,
coping superwoman as a failure. However, rather than positioning these
women’s self-descriptions as evidence of individual psychological traits

or limitations, we can conceptualize them as reflections of the absence of
material support or the internalized gendered constructions of femininity
in which the superwoman is the norm (Chrisler, 2008) and it is considered
that there is something wrong with women who are angry, unapproach-
able, or inward turning (Chrisler & Johnston-Robledo, 2002).
Many of the women whom we interviewed about sexual and reproduc-
tive health in the study of recent Assyrian and Karen women immigrants
to Australia also described lives within which there was little freedom from
responsibility. For these women, this finding reflects inequities in social
class, culture, and gender that have been associated with the development
of women’s psychological distress generally (Ussher, 2010) and draws at-
tention, once more, to the material context of women’s lives, and to the
intersection of gender and other identities in the shaping of women’s sub-
jectivity. Our interviews in this second study demonstrate that not all wom-
en associate the lived experience of negative premenstrual change with a
diagnosis of PMS, confirming previous research conducted with women
living in a range of Asian cultures (Chandraratne & Gunawardena, 2011;
Dennerstein et al., 2010; Wong & Khoo, 2011). This finding may be the re-
sult of the absence of discursive resources to describe premenstrual change;
that is, in some cases, women’s lack of awareness of the diagnostic category
of PMS, combined with cultural practices that do not encourage women to
attribute distress to the reproductive body, results in different lived experi-
ences. In this vein, many of the women whom we interviewed described
experiencing distress after the birth of a child but had little knowledge
of the diagnostic category of post-natal depression. There was general
acceptance that women should soldier on rather than express post-natal
distress. This may, in turn, influence the lived experience of change or dis-
tress associated with the reproductive life cycle. As Edward Shorter (1992)
argues, symptoms that are accepted as legitimate signs of illness or mad-
ness, what he deems the “symptom pool,” are particular and peculiar to a
specific culture at a particular point in time. By deeming certain symptoms
“illegitimate,” cultures discourage patients from developing them, as few
enjoy being positioned as “undeserving” or as not having a “real” medical
problem. In this scenario Shorter finds “great pressure on the unconscious
mind to produce only legitimate symptoms” (p. x). Cultural context, then,
and the cultural regulation of women’s distress may serve to reduce the
very existence of negative premenstrual change and obviate attribution of
such change to the reproductive body if it does occur. The symptoms
of PMS reported by many Western women may be experienced as em-

bodied or psychological changes by non-Western acculturated women, but
they may not be deemed signs of sickness or legitimate reasons for self-care
or treatment and may not lead to self-diagnosis as a PMS sufferer. In our
research we did not ask our Assyrian and Karen interviewees how they en-
gaged in self-care or how they expressed psychological distress. These ques-
tions need to be explored in further research.
Similar arguments about the cultural construction of distress have been
made in relation to the diagnostic category of depression, which is also
very much a Western cultural concept. There is no word for “depression”
in many non-Western cultures (Marsella, 1981), and many so-called symp-
toms of Western depression are not expressed, or positioned as signs of
distress, in many non-Western contexts (Jadhav, 1996). Rather, suffering
is signified by bodily or psychological complaints as varied as a failed or
painful heart (India) (Fenton & Sadiq, 1991), snakes biting or crawling on
the body (Javed, 2004), chest pains (China), burning on the soles of the feet
(Sri Lanka), semen loss (India), ants crawling inside the head (Nigeria), or
soul-loss (Hmong) (Marecek, 2006, p. 289). Indeed, one explanation for the
differences in reported rates of depression between White and South Asian
or African American women is that distress is more likely to be somatized
in the non-White groups (Brown, Schulberg, & Madonia, 1996; Wilson
& MacCarthy, 1994) or at least presented as physical problems to medi-
cal general practitioners, because physical problems may be seen as hav-
ing greater legitimacy within some non-White cultures (Burr & Chapman,
2004). Depression is therefore less likely to be formally diagnosed. The
very meaning and construction of emotional states has also been reported
to vary across cultures. Many emotions commonly described by English
speakers have no parallel in other languages (Russell, 1991). For exam-
ple, anger and sadness are not distinguished in many African languages
(Leff, 1973), and fear and shame are not differentiated by the Australian
Gidjingali people (Pilgrim & Bentall, 1999). If we can question the very
existence of emotions outside of language and culture, we can certainly
question the existence of a uniform pathology, such as depression or PMS.
Discursive constructions of gender and of PMS are implicated in the very
awareness among women of premenstrual change as a phenomenon wor-
thy of categorization, leading to self-diagnosis as a PMS sufferer or to
resistance of pathologization. These discursive constructions include the
contemporary Western construction of change, in particular premenstrual
change, as pathology; constructions of “good” women as self-sacrificing,
self-controlled, and caring; and constructions of roles within heterosexual

relationships. The frames we use to understand women’s lived experiences
of premenstrual change are thus similar to those that help us account for
women’s madness and for multiple pathologizations of women’s reproduc-
tive bodies (Ussher, 2006, 2011). Excavating the genealogy of the cultural
and historical discourses and discursive practices that inform embodied
experiences (following Foucault) is a means of validating complex physi-
cal and emotional phenomena reported by women across cultures in rela-
tion to their reproductive lives.
The findings of these two studies have implications for the resistance of
dominant cultural discourses about premenstrual change in the wider so-
cial context. While some women interviewed in this research were engag-
ing in resistance of premenstrual pathologization on an individual basis,
there is a need for the development of resources that can facilitate this
process on a collective level. Supports for shared resistance could include
widely available health information that challenges myths about PMS – in-
cluding the notion that it is a universal concept – and yet informs women,
and their partners, about potential variability across the menstrual cycle.
This educational material would challenge the stigma of PMS as madness,
through normalizing the range of women’s experiences and opening chan-
nels of communication that allow women to receive support or take time
out when they are premenstrual. At the same time it is important to avoid
creating distress by pathologizing premenstrual changes that may not be
noticed, and not pathologized, as we saw in the case of the Assyrian
and Karen women we interviewed. The public naming of premenstrual
distress as a culture-bound reaction to stresses in women’s lives can serve
a similar purpose. The circulation of information about positive aspects
of premenstrual change would also serve to challenge negative discourse
about PMS: information about premenstrual increases in creativity and
energy, as well as the notion that the premenstrual phase can be a time
to access emotions that are repressed during the remainder of the month.
The development of premenstrual art, cartoons, and YouTube videos can
also serve to parody negative discourse about PMS, with recent research
suggesting that young Western women who are informed by such media
celebrate their premenstrual anger as a strength and embrace positive
aspects of premenstrual change (King & Ussher, 2013). These findings
also have implications for therapists and health psychologists who work
with women who present with PMS or PMDD. Rather than positioning
women’s premenstrual management strategies as maladaptive avoidance
(Kuczmierczyk, Johnson, & Labrum, 1994) or as failure to cope with daily
living, they could be reframed as effective coping strategies, and women

encouraged to gain control through internalizing notions of the self as an
“expert coper” who is developing strategies to effectively manage negative
premenstrual change.
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8 Depression in Workplaces:
Governmentality, Feminist Analysis,
and Neoliberalism
k at h e r i n e t e g h t s o o n i a n
During the past fifteen years the public profile of depression1 among em-
ployed Canadians as a significant issue requiring urgent attention has height-
ened dramatically. Alongside claims regarding the widespread and growing
prevalence of this problem, discussions in the media, scholarly research,
and a massive grey literature have emphasized the enormous financial bur-
den it has imposed. Commentators often note the costs to employers of
providing sick leave and long-term disability benefits to employees who
have been diagnosed with depression. The effects of depression are also
depicted as reverberating within – and outward from – specific workplaces
in myriad other ways, generating annual costs that add up to billions of
dollars. Michael Wilson, a former federal minister of finance, evocatively
conveyed these concerns with his claim that “depression is draining pro-
ductivity from our economy like an unseen leak in a ship at sea” (Global
Roundtable, 2006, p. 8).2
Although arguments about the negative economic impact of depression
among Canadian workers on both individual employers and the national
economy have circulated widely, policy responses to this problem can best
be characterized as indirect and relatively limited. The federal govern-
ment’s approach has reflected, in part, the division of powers within the
Canadian federal system, which assigns responsibility for health, including
mental health, to the provinces. Rather than taking a direct role in the
development and delivery of services, Ottawa has supported efforts to ad-
dress workers’ mental health through the activities of the Mental Health
Commission of Canada (MHCC), which was established by the Harper
government in 2007 as an arm’s-length agency with $130 million in fund-
ing and a ten-year mandate to serve as “a catalyst for improving the mental
health system and changing the attitudes and behaviours of Canadians
230 Katherine Teghtsoonian
around mental health issues” (MHCC, 2013). Within the province of Brit
ish Columbia, as at the federal level, government engagement with the
problem of depression in the workplace has been reflected primarily in the
provision of funding to support relevant initiatives developed by research-
ers and non-profit agencies, accompanied by calls for employers and em-
ployees to ensure that the issue is addressed effectively (British Columbia,
2010, pp. 15, 21–3; Goldner et al., 2002; Teghtsoonian, 2009).3
While government policy responses have been limited, we have never-
theless witnessed a proliferation of texts, tools, websites, and workshops
that are intended to address depression in the workplace and have been
developed by organizations and individuals outside the formal sphere of
the state: business executives, insurance companies, non-profit organiza-
tions, researchers, and practitioners. In this chapter I draw on two differ-
ent conceptual frameworks – an analytic of governmentality and feminist
analysis – in order to consider several of these efforts and their relation-
ship to the neoliberal political context within which they have emerged.
Following a brief overview of recent initiatives, both federal and within
British Columbia, I introduce governmentality as a conceptual framework
and employ it to consider the linkages between, on the one hand, the gov-
erning practices and subjectivities that these initiatives seek to foster and,
on the other, neoliberalism as a governing ethos. Governmentality proves
useful in identifying resonances between neoliberalism and practices that
are at some distance from the state even when – as is the case with depres-
sion among employed Canadians – there is little by way of explicit govern-
ment policy to address the issue. It does not, however, offer much insight
into why efforts to respond to this problem have met with so little success.
In considering this particular shortcoming, I argue that feminist analysis
provides insights into the relationships between neoliberalism, systemic in-
equities – such as those constituted around gender, racialized identity, and
sexual orientation – and mental distress among employees, that govern-
mentality is not equipped to provide. For the purposes of this chapter I use
a simplified understanding of feminist analysis as a research approach that
is attentive to the systemic features of economic, social, organizational,
and political life that disadvantage women and men who are marginalized
along various dimensions (including, for example, gender, racialized iden-
tity, disability, sexual orientation, experience of colonization, and class),
and to the accounts that members of marginalized groups provide about
their circumstances and experiences. In contrast to the governmentality
literature, such scholarship generally reflects a strong commitment to in-
forming activism in the service of social justice. In the final section of the
Depression in Workplaces 231
chapter I consider this difference between the two conceptual frameworks

and reflect more generally on the contributions and limitations of each
research approach.
Depression in the Canadian Workplace:

Actors, Discourses, and Strategies
Formed and sustained by a group of Canadian business executives, the

Toronto-based Global Business and Economic Roundtable on Addiction
and Mental Health (hereafter Global Roundtable) rapidly moved to the
forefront of efforts to address the problem of depression in the workplace
in Canada following its establishment in 1998 (for an account see Wilson
& Wilkerson, 2011).4 Supported by Great-West Life Assurance Company,
the Great-West Life Centre for Mental Health in the Workplace, and Bell
Canada (a major telecommunications firm), the Global Roundtable crafted
and promoted the business case for addressing depression in the workplace,
facilitated discussion and networking among senior executives, served as a
clearinghouse for relevant information, and developed written materials in-
tended to provide guidance for those involved in all levels of organizational
management – from chief executive officers to senior management to line
supervisors – in responding to depression among employees. The strate-
gies advocated in documents produced by the Global Roundtable reflect
the managerial experience and orientations that its members bring to the
issue. For example, these documents argue that employers must put in place
accounting systems that systematically track costs associated with depres-
sion among their employees, must set goals for reducing these costs, and
must hold managers and supervisors accountable for achieving these goals.
Because its own analysis revealed that the costs of disability benefits are
substantial and are driven primarily by the length of time that an employee
is off work, the Global Roundtable consistently placed strong emphasis on
ensuring an early return to work by employees who are on short-term sick
leave or long-term disability benefits because of depression. It also insisted
that when mental health issues begin to crop up across an organization, or
at particular institutional locations within it, such developments should be
understood as a “canary in the mineshaft,” signalling the likely presence of
problematic organizational practices needing to be addressed.
Depression in the workplace has also received significant attention within
the province of British Columbia. Here university-based researchers and
practitioners in the fields of clinical psychology and occupational health
have been centrally involved in promoting this issue in various ways. For
example, they have made significant contributions to the BC government’s

approach to depression as a public health issue (Goldner et al., 2002),
outlined strategies for responding to depression in the workplace (for ex-
ample, Bilsker, Gilbert, Myette, & Stewart-Patterson, 2004), and developed
a web-based resource designed to encourage and support employers in fos-
tering a psychologically healthy and safe workplace (Guarding Minds @
Work, 2013). As was the case with the Global Roundtable’s initiatives,
these strategies for prevention and response reflect the professional train-
ing and interests of the individuals who developed them. They have fo-
cused primarily on the psyches and behaviours of individual employees,
directing attention to methods of adjusting individuals to their work en-
vironments rather than problematizing features of the workplace that may
undermine workers’ well-being. For example, one key initiative undertaken
at the request of BC’s Provincial Health Services Authority was the devel-
opment of Antidepressant Skills at Work (Bilsker, Gilbert, & Samra, 2007),
a self-help manual designed to support employees with depression, using
the therapeutic techniques of cognitive behavioural therapy (CBT). This
manual has been made widely available through the Internet and has been
promoted at a number of relevant conferences and workshops, as well as in
publications directed at staff in human resources departments.
In addition to these efforts by business executives and researchers, over
the past decade the BC division of the Canadian Mental Health Asso-
ciation (CMHA-BC), a national non-profit organization, has championed
depression in the workplace as an issue. For example, since 2002 CMHA-
BC has organized and hosted an annual conference in Vancouver on this
topic. Known as the Bottom Line Conference, a title that nods to the busi-
ness concerns that the event is intended to address, this annual gathering
brings together employers, human resource professionals, practitioners,
and union representatives in order to raise awareness about depression in
the workplace. Like the Global Roundtable, it has worked to interest em-
ployers in taking steps to address the issue by drawing their attention to the
ongoing costs that they would incur by not doing so, that is, by showing
how it harms their bottom line. CMHA has also supported and promoted
Mental Health Works, a training program offering workshops as well as
print and digital materials that are designed to educate employers and em-
ployees about mental health issues and ways of addressing them effectively
within a workplace context. Insurance companies have been strong sup-
porters of the conference, which has been sponsored by both Great-West
Life and Pacific Blue Cross since its inception.
Most recently there has been a shift in how the problem requiring atten-
tion is identified, away from “managing depression in the workplace” to a
more general focus on the need for employers to ensure a “psychologically
healthy and safe workplace.” This development was prompted by several
research reports written under the auspices of the MHCC that have noted,
among other things, a series of legal decisions that found employers li-
able for the psychological harm to employees resulting from their failure
to provide a psychologically healthy working environment (Lippel, 2011;
Shain, 2009, 2010; for a more detailed discussion see Teghtsoonian, 2013).
The tenor of these reports is manifest in the title of one of them, Tracking
the Perfect Legal Storm: Converging Systems Create Mounting Pressure
to Create the Psychologically Safe Workplace, which carries forward the
“disaster” motif embedded in earlier characterizations of the problem of
depression as an “epidemic,” a “time bomb,” or “an unseen leak in a ship
at sea.” In the wake of these reports an extensive consultation process was
carried out, culminating in the January 2013 release of a new national stan-
dard for fostering psychological health and safety in the workplace, which
Canadian employers have been invited to adopt and implement on a volun-
tary basis (CSA Group–BNQ, 2013). Funding for this work was provided
by the federal government and Bell Canada with support from the MHCC
(MHCC, 2011). The 2013 Bottom Line Conference, organized around the
theme of “Celebrating a New Era in Workplace Mental Health: Putting
National Standards into Practice,” was centrally concerned with the discus-
sion and promotion of this new standard.
Governmentality, Neoliberalism, and Governing Practices
Originally discussed by Foucault in his lectures at the Collège de France

(Foucault, 2007, 2008), governmentality has been developed subsequent-
ly by researchers working in a number of disciplines into a conceptual
framework for analysing the linkages between everyday subjectivities and
governing programs that seek to shape them (see, for example, Bröckling,
Krasmann, & Lemke, 2011; Miller & Rose, 2008; Rose, 1999; Walters, 2012).
While the eclectic nature of empirical research using governmentality as
an approach reflects the variability in Foucault’s own account and use
of the concept, it generally decentres the state as a privileged site and fo-
cuses analytic attention on the specific practices (“technologies”) through
which variously situated actors – frequently those who possess some form
of recognized expertise – seek to “conduct the conduct” of others. As Peter
Miller and Nikolas Rose argue, “we need to study the humble and mun-
dane mechanisms by which authorities seek to instantiate government:
techniques of notation, computation and calculation; procedures of ex-
amination and assessment; the invention of devices such as surveys and
presentational forms such as tables; the standardizing of systems for train-
ing and the inculcation of habits; the inauguration of professional special-
isms and vocabularies; building designs and architectural forms – the list
is heterogeneous and in principle unlimited” (Miller & Rose, 2008, p. 63).
As this list suggests, and as Bröckling, Krasmann, and Lemke (2011)
have noted, “technologies of government ... unfold their effects straight
across the usually distinct fields of state, society, and the economy. Studies
of governmentality do not assume that everything is a political activity,
but political activities are also not reducible to the trinity of politics, policy,
and polity”5 (p. 13). This does not mean, however, that the normative com-
mitments, policy orientations, and governing programs of those elected to
public office should be ignored. Rather, their relevance and particulars are
to be discovered empirically. For example, mapping out the initiatives that
have emerged around the problem of depression in workplaces – including
the Bottom Line Conference, the various tools for supporting CBT, and
the recently released national standard – reveals that these are funded in
part by the federal and provincial governments or have been developed in
collaboration with agencies within them.
Although such linkages can be understood as instances of the practice
of “governing at a distance,” to which the literature on governmentality
draws our attention (Miller & Rose, 2008, pp. 33–5; and see below), they
should not be understood as a matter of state authorities smoothly engi-
neering plans to implement their goals by manipulating unwitting agents
located within civil society. While governing ambitions and practices often
do originate in formal political structures, they also regularly arise in many
other locations. For example, experts of various types argue “that the per-
sonal capacities of individuals can be managed in order to achieve socially
desirable goals – health, adjustment, profitability, and the like. They have
latched on to existing political concerns, suggesting that they have the ca-
pacity to ameliorate problems and achieve benefits. They have allied them-
selves with other powerful social authorities, in particular business people,
translating their ‘lay’ problems into expert languages and suggesting that
rational knowledges and planned techniques hold the key to success. They
have problematized new aspects of existence and, in the very same mo-
ment, suggested that they can help overcome the problems that they have
discovered” (Miller & Rose, 2008, pp. 42–3; see also Li, 2007, pp. 7–8).
Such practices are visible in a May 2008 press release in which the
CMHA urges Canadian employers “to accept greater responsibility for
the mental health of their employees.” In addition to suggesting that em-
ployers harm their own bottom line when they fail to promote a healthy
work-life balance, the press release argues that “mentally unhealthy work-
places place another burden on an already-stressed healthcare system.
Research shows that depression is linked to heart disease, diabetes, and
autoimmune disorders” (CMHA-BC, 2008). Here, the CMHA is articu-
lating a formulation of various problems to which it can offer practical
solutions through its conferences and training programs, solutions that it
argues will be of interest to both business executives and the government
of the day. A similar process is unfolding in relation to the new national
standard on psychological health and safety in the workplace, that is, a
proliferation of training workshops, seminars, conferences, and webinars
designed to interest employers and employees in, and educate them about,
the standard and how to implement it.
Although governmentality as a conceptual framework does de-privilege
the state, it nevertheless invites us to explore how governing practices such
as those noted above – as well as the subjectivities and choices that they in-
vite – have come to be aligned in various ways with the policy orientations
and goals of provincial and federal governments. In the contemporary pe-
riod in Canada these have been informed significantly by neoliberalism.
Neoliberalism has been taken up within governmentality research pri-
marily as a “political rationality” rather than as a coherent set of public
policies or as an obfuscatory ideology that works to mask an underlying
reality (see, for example, Larner, 2000; Ong, 2007). Thomas Lemke (2001)
describes neoliberal forms of government as involving “the strategy of ren-
dering individual subjects ‘responsible’ (and also collectives, such as fami-
lies, associations, etc.) [which] entails shifting the responsibility for social
risks such as illness, unemployment, poverty, etc., and for life in society
into the domain for which the individual is responsible and transforming
it into a problem of ‘self-care.’ The key feature of the neo-liberal rational-
ity is the congruence it endeavours to achieve between a responsible and
moral individual and an economic-rational actor. It aspires to construct
prudent subjects whose moral quality is based on the fact that they ra-
tionally assess the costs and benefits of a certain act as opposed to other
alternative acts” (p. 201).
In other words, neoliberalism involves the translation of marketized pro-
cesses, relationships, and values into arenas previously considered social
and/or political, rather than economic. It also involves “responsibilization,”
that is, the discursive practice of locating responsibility for problems and
their solutions in individuals and institutions at some distance from the
state. As Bröckling et al. (2011) note, these mechanisms involve “creating
lines of force that make certain forms of behavior more probable than oth-
ers,” rather than “direct command and control” (p. 13), practices that Rose
and others have referred to as “governing at a distance.” We can see in this
account the policies and priorities conventionally associated with neolib-
eralism (for example, private rather than public funding and delivery of
services; cost efficiency and competition as privileged values), but analytic
emphasis is placed on the specific practices through which these are en-
acted (see Miller & Rose, 2008, pp. 58–83).
This somewhat abstract discussion can be made more concrete through
examples drawn from the initiatives relating to depression and psychologi-
cal health and safety in the workplace that were described earlier. To do so,
I present three examples of governing practices that are visible in these ini-
tiatives: (1) discourses of responsibilization that constitute both employees
and employers as “enterprising selves” who assume responsibility for the
well-being of their person and/or organization by acting in appropriate,
prescribed ways; (2) disability case management as a calculative managerial
technology for governing ill employees and their treating medical practitio-
ners; and (3) the research funding program as a mechanism for enrolling
both researchers and employers in the project of governing depression in
the workplace.
Discourses of Responsibilization
In many of the initiatives noted above there has been a strong emphasis on
responsibilizing strategies that identify individuals – their attitudes, beliefs,
and behaviour – as the appropriate focus of preventive or remedial action
intended to reduce the incidence and costs of depression in the workplace.
For example, resilience training is proposed as a useful preventive strategy
that can be implemented within the workplace; it involves teaching “skills
for dealing with work stressors so that employees have greater resilience
when faced with changing patterns of workplace stress” (Bilsker et al., 2004,
p. 51). The suggestion is that by working on their abilities in areas such as
problem solving, time management, goal setting, and mood management,
employees will become better equipped to cope with the problematic fea-
tures of their work environment. Employees are also urged to take up, in
their lives away from the workplace, practices that will enhance their resil-
ience within it. Thus, proponents of this view argued that “it is important
that employees take an active role in maintaining their own health. Routine
exercise, good nutrition and weight control, adequate sleep, sufficient lei-
sure time, stress management, and avoidance of illicit drugs and excessive
alcohol are all beneficial to both mental and physical health” (Bilsker et
al., 2004, p. 52). Alongside resilience training, strong support has also been
expressed for cognitive behavioural therapy as a treatment modality for
workers struggling with depression. CBT frames depression as a problem
of faulty thinking that individuals can learn to correct by replacing nega-
tive self-talk with more positive and “realistic” views of the world. Both
researchers and the BC provincial government, through its depression
strategy (Goldner et al., 2002), have argued for group-based CBT as the
best treatment strategy for workers with depression, on the grounds that it
is both cost minimizing and evidence based.
Strategies such as resilience training and CBT focus on adjusting em-
ployees to their working environment rather than on identifying and reme-
diating inequitable, marginalizing, or otherwise harmful features of that
environment. They invite us to become agents actively engaged in the proj-
ect of working on ourselves in order to become more capable, enterprising
subjects, fit to make a productive contribution to our workplace and the
wider economy. While directed at individuals in their capacity as employ-
ees, these practices also constitute a particular type of citizen; they en-
courage individuals to look to themselves for solutions to their problems,
rather than to the public sphere, and implicitly endorse this as a norm to
which others ought to be held as well. The individualized subjectivity that
is fostered fits nicely with an array of policy commitments associated with
neoliberalism.
Interestingly, recent initiatives promoting a psychologically healthy and
safe workplace direct responsibilizing imperatives towards employers rath-
er than employees. We see this in the language on the Guarding Minds @
Work website, where an extensive set of tools designed to walk employers
through the process of assessing and improving their organizational prac-
tices is introduced with the following statement: “GM@W is a response to
current and emerging legal requirements in Canada for the protection of
employee mental health and the promotion of civility and respect at work.
Legal standards increasingly require employers to develop comprehensive
strategies for ensuring a psychologically safe workplace. Prudent employ-
ers need to develop policies and programs that meet these new legal stan-
dards” (Guarding Minds @ Work, 2013).
Although the language here refers to “meeting” legal standards, it is
clear from discussions elsewhere that proponents of the national standard
view it as initiating a process of continuous improvement that is unlikely ever

to culminate in a specific outcome. Presumably, significant legal protection
will nevertheless accrue to employers who can demonstrate that they are
making an effort – as a good enterprising subject should – even if the scope
of improvements actually achieved is less than expansive.
Disability Case Management
The second set of practices revolves around disability case management.

As noted above, the Global Roundtable strongly advocated identifying and
tracking costs associated with depression-related work absences, and iden-
tified disability case management as a tool to reduce those costs. In general,
disability case management involves ongoing engagement with the employ-
ee who is sick and off work by human resources personnel and/or an insur-
ance company case manager, with a view to ensuring as early a return to
work as possible. Documents published by the Global Roundtable suggest
that this outcome can be achieved by ensuring that practitioners paid for
by the employer monitor the employee’s recovery trajectory and guide deci-
sions made by the employee’s physician about treatment. Key goals are to
ensure that an early return to work is accepted as a priority by the treating
physician and that the employee fully cooperates with this understanding
and with the treatment deemed necessary to achieve it. General practitioners
are presented as needing considerable assistance in order to facilitate these
processes. They are framed as ill equipped to judge an employee’s readiness
to return to work, both because they lack an understanding of the work-
place and because they inappropriately privilege full symptom remission
over occupational functioning in their decision-making. Early integration
into a case management process and the development and implementation
of standardized treatment protocols are recommended as tools for guid-
ing physicians’ treatment plans in desired directions (Teghtsoonian, 2008).
These discursive practices are intended to foster a calculative subjectivity
among managers and senior executives so that, however else it might be
taken up, the problem of employees’ illness-related absence from work is
always approached with a view to minimizing costs. They are also intended
to subordinate the medical expertise of the physician to the financial im-
peratives of the prudently managed business.
Both the employee who is unwell and perhaps depression itself are re-
constituted through these discussions and the technologies they propose,
in ways that are congruent with neoliberal orientations and rationali-
ties. Distressed employees emerge as underperforming investments rather
than as ill citizens with entitlements to care supported with public funds.
Another way of stating this is that rather than being constituted as rights-
bearing subjects, persons experiencing depression are constituted instead
as employees upon whom employers have claims because they are imposing
avoidable financial burdens on the employer rather than contributing as
productively as they could. Depression itself is arguably transformed from
an illness to be treated into a limitation on productivity to be managed. In
all of this we see strong points of contact with key elements of neoliberal-
ism, including the calculative subjectivity that is incited among managers
and senior executives through these prescriptions for how they ought to
engage with employees who are unwell (Miller, 1994).
The Research Funding Opportunity
Since 1998, when the Global Roundtable was established, depression in the
workplace has secured a more prominent place in the hierarchy of research
priorities in Canada than it had previously occupied.6 This trend has been
reflected in, among other developments, the establishment of research
funding opportunities by the Canadian Institutes of Health Research
(CIHR), the national body through which federal government funding for
health research in Canada is made available. During the mid-2000s the
CIHR organized a series of workshops and conferences that brought to-
gether researchers and interested stakeholders to identify areas in which
research was needed. One funding opportunity, launched in 2007, invited
applications for a “Catalyst grant: Planning and development in mental
health and addiction in the workplace,” intended to “build capacity for
research in the area of mental health.” In the background discussion pro-
vided in this request we learn that “workplace mental health is strongly
aligned with federal government priorities. For example, from the CIHR
perspective, the organization is mandated to promote economic develop-
ment through health research, and to engage private sector organizations
in complementary research interests. Research that will improve employee
mental health and ultimately productivity, and that will help build strong
relationships between researchers and workplace organizations will help to
fulfill these mandates” (CIHR, 2007, p. 2). Here, the Global Roundtable’s
commitment to addressing depression in the workplace finds a point of
contact with the goals of the federal government. And through the funding
opportunity, members of the research community and individual work-
places are being enlisted as well.
Designed to meet the perceived need for “greater engagement between
the business and research communities,” the funding program requires the
participation of workplace partners at all stages of the proposed research.
We are told that through this sort of collaboration “business partners gain
valuable knowledge about the factors that impact … on the mental health
of their workforce, while researchers gain an understanding of the perspec-
tive of the employer that is necessary to developing an appropriate study
design, interpreting findings and drawing practical conclusions” (CIHR,
2007, p. 2). The examples of relevant research topics that are provided are
closely aligned with the list of employers’ research priorities provided else-
where by the Global Roundtable, along with its explicit endorsement of the
CIHR’s research agenda in this area (Global Roundtable, 2006, pp. 38–9).
Thus, through the particulars of funding requirements, researchers and
workplaces are being directed towards research agendas oriented to the
federal government’s concern with productivity and competitiveness, and
the business community’s articulated needs and interests.
Limits to Governing, Limits to Governmentality
Although significant time and energy have been devoted over the past de-
cade to developing strategies for addressing depression in workplaces, the
problem appears to be tenacious. A national poll conducted in 2012 “found
that 22 per cent of Canadian workers are experiencing depression, which
is a similar percentage to what earlier studies have found in the population
at large” (Mayer, 2012). This state of affairs would not come as a surprise
to those analysts of governmentality who emphasize that governing ambi-
tions are frequently stymied in their encounter with the empirical world of
people and things. As Miller and Rose (2008) argue, “we do not live in a
governed world so much as a world traversed by the ‘will to govern,’ fuelled
by the constant registration of ‘failure,’ the discrepancy between ambition
and outcome, and the constant injunction to do better next time” (p. 71; see
also Walters, 2012, pp. 75–6). This is a useful insight, but, beyond positing
failure as inevitable, governmentality as a conceptual framework provides
us with little assistance in understanding the reasons for it.
Li (2007) offers a useful way to think about this “discrepancy between
ambition and outcome” through her compelling ethnographic analysis of
what happens when the “will to improve” that animates the work of inter-
national development agencies is brought to life through specific projects
implemented within local communities in Indonesia. She argues that the
development projects of interest to her fall short of their aspirations be-
cause they are confounded by political-economic processes that they do
not acknowledge and therefore cannot address. Instead, the development
experts who structure and implement these projects constitute the problems
that they seek to address as technical rather than political in nature, amena-
ble to resolution via the knowledge and expertise that they themselves can
bring to bear (see also Miller & Rose, 2008, discussed above). As Li (2007)
suggests, “for the most part, experts tasked with improvement exclude the
structure of political-economic relations from their diagnoses and pre-
scriptions. They focus more on the capacities of the poor than on the prac-
tices through which one social group impoverishes another” (p. 7). Since
“questions about control over the means of production, and the structures
of law and force that support systemic inequalities” lie outside the expert
discourses informing development projects, they also lie outside the reach
of the strategies and initiatives promoted through them (p. 11).
Li notes that these limits to the governing practices that she explores
have also alerted her as a researcher to “the limits of governmentality as
an analytic” (p. 19), which, in her view, arise from the manner in which its
conceptual parameters preclude attention to either the production and ef-
fects of systemic inequities or the processes through which people mobilize
politically to contest these. She argues that, in order to do justice to what
she has observed on the ground, she must supplement the insights afforded
by governmentality with an analysis of capitalism and class relations that
builds on Marx and Gramsci. Doing so allows her to integrate into her dis-
cussion the political-economic processes that she views as central to what
she has observed, but that are kept out of view both by the governing prac-
tices of those seeking to improve the communities where she was doing her
research and by the conceptual tools offered by governmentality. Arguably,
a similar move is necessary in order to develop some analytic purchase on
the failure of contemporary governing programs to remediate the problem
of depression in the workplace.
In what follows, I mobilize feminist analysis in ways similar to the uses
that Li makes of a Marxist political-economy framework. First, I revisit
the initiatives discussed above, which, as we have seen, draw significantly
on technical expertise (for example, of psychologists, disability case man-
agers, and business executives) with the goal of improving the capacities
and practices of individuals in workplace settings. A feminist analysis
highlights the failure of these initiatives to problematize political-economic
processes or systemic inequities relating to various dimensions of mar-
ginalization, such as gender and racialized identity, that could be limiting
their effectiveness and/or contributing to mental distress among workers.
Second, I draw on examples of feminist scholarship to illustrate how it
broadens our field of vision beyond a focus on individual employees and
their capacities, to address these features of the broader context. In so
doing, feminist analysis illuminates linkages between systemic inequities,

policy developments associated with neoliberalism, and workers’ experi-
ences that are not adequately captured within the conceptual framework
offered by governmentality.
Feminist Analysis, Depression, and Neoliberalism
Feminist scholars and activists have insisted on the importance of identify-

ing and responding to the needs and interests of diverse groups of women
in thinking about mental health issues and in designing appropriate ser-
vices and support (see, for example, Ad Hoc Working Group on Women,
Mental Health, Mental Illness, and Addictions, 2006; Morrow, 2003).
However, there appears to be a disconnect between these arguments and
the initiatives considered in this chapter, which address in only limited
ways the circumstances of women who are marginalized along various so-
cial dimensions. For example, the Global Roundtable’s 2006 Business and
Economic Plan consistently uses gender-neutral terms (for example, men
and women) in referring to workers affected by depression. Similarly, young
people and young adults are identified as populations of particular inter-
est, but without any comment on whether young women in the workplace
might experience systemic and gendered challenges to their mental and
emotional well-being that are distinct from those facing young men.
Women workers as a group are visible to some extent in one of the texts
published in British Columbia, which invokes the frequently cited statistic
that women are twice as likely as men to be diagnosed with depression
and argues that, because of this gendered distribution of the diagnosis, it
might make sense to focus prevention initiatives on workplaces dominated
by women employees (Bilsker et al., 2004, p. 38). However, the particular
strategies that are most strongly advocated in this document – resilience
training and encouraging employees to adopt a healthy lifestyle – are reso-
lutely focused on individual workers rather than on (gendered or racialized)
organizational policies and practices that may contribute to high levels of
stress and depression (for a more detailed discussion see Teghtsoonian,
2008). Moreover, such recommendations are presented in this text and
elsewhere as if the activities they prescribe are equally available to women
and men. The problematic effects of this oversight are reflected in the ex-
ample that the Global Roundtable (2006) provides of the steps taken by
“one young mother and wife as she prepares to return to work full-time,”
after having been off work with a diagnosis of bipolar disorder. These in-
clude: “get at least 7 hours of sleep … exercise at least 30 minutes per day
at least five times per week … [and] take time to read daily (this is time for
relaxation)” (p. 85).
While these activities would undoubtedly deliver important health ben-
efits, being able to undertake them on a consistent basis requires personal
and economic resources that are unavailable to many young mothers,
whether they are raising children with partners or on their own. Indeed,
feminist scholars have identified any number of gendered barriers to leisure
time that constrain women’s ability to exercise regularly, relax, or enjoy
adequate sleep (Fullagar, 2003). Without acknowledging and addressing
these barriers, it is unclear whether resilience-building programs or strate-
gies for promoting healthy lifestyle choices will be able to achieve what they
set out to accomplish.
In contrast to the individualizing framings that have pervaded many dis-
cussions of depression in workplaces and of how best to respond to it, the
Global Roundtable consistently emphasized the importance of attending
to the ways in which organizational policies and practices may be under-
mining the health and emotional well-being of employees. Thus, it argued
that “in order to go beyond band-aid approaches, the organization must
address root causes when developing approaches to meet employee needs.
The organization’s strategy must look at more than just programs target-
ing lifestyle behaviours, as root causes are often found in systemic factors,
such as the negative impact of management practices that aggravate or
precipitate mental health problems” (Global Roundtable, 2006, p. 138).
However, here and elsewhere the discussion fails to acknowledge how
organizational policies or managerial practices might play out differently
for workers who depart from a male, able-bodied, heterosexual, White
norm. Nor do these documents address the possibility that organizational
policies and working environments that are experienced as unproblematic
by workers who conform to this norm may nevertheless have discrimina-
tory and harmful effects on their colleagues (see, for example, Acker, 1990,
2006; Buddel, 2011; Creese, 2007; Lynk, 2007). Gay and lesbian employees,
for example, report significant stress associated with having to work in het-
eronormative organizational environments and with a wide array of nega-
tive experiences attendant on disclosure of their sexual orientation to their
coworkers and supervisors (see, for example, Bowring & Brewis, 2009).
These gaps in the Global Roundtable’s analysis sit oddly juxtaposed with
the growing body of evidence demonstrating the negative impacts that ex-
periences of discrimination and marginalization have on both physical and
emotional well-being (see, for example, Buddel, 2011; Das Gupta, 2009;
Silverstein, 2013).
The newly released National Standard (CSA Group–BNQ, 2013) does

gesture towards such issues by including a section on “diversity” and refer-
ences to discrimination in lists of problematic behaviours that undermine
psychological health and safety within a workplace. However, the man-
ner in which these and related topics are taken up within the document
conveys an individualized and depoliticized framing of issues that might
arise from differences among workers. Thus, we learn that “an organiza-
tion with good civility and respect would be able to state that ... workers
from all backgrounds are treated fairly in our workplace” (CSA Group–
BNQ, 2013, p. 20). As in the Global Roundtable document, the operation
of heterosexism, racism, and sexism go unmentioned.
Similar silences permeate the discussion of work-life balance. The Global
Roundtable (2006) identified work-life balance as an important support
for employees’ mental health that employers should foster through their
policies since it is one of “ten building blocks of human productive capac-
ity … in a brain-based economy” (p. 25). Discussions in British Columbia
also gesture to work-life balance, with one document citing a survey in
which a majority of workers “reported significant imbalance in their lives
related to increased and competing work and family demands. Those indi-
viduals with the greatest degree of role overload and work/family interfer-
ence reported the highest levels of depressed mood” (Bilsker et al., 2004,
p. 28). However, there is no exploration in these discussions of the gendered
dimension of the “imbalances” and “interferences” that undermine the
emotional well-being of employees, not the least of which is the gendered
division of caregiving responsibilities in the domestic sphere that has been
so well documented by feminist scholars and activists (Brady, 2008). More
recently, the National Standard has included “balance” as one of thirteen
“workplace factors affecting psychological health and safety.” Balance is
understood to be “present in a work environment where there is acceptance
of the need for a sense of harmony between the demands of personal life,
family, and work. This factor reflects the fact that everyone has multiple
roles: as workers, parents, partners, etc.” (CSA Group–BNQ, 2013, pp. 19,
22). It is discussed in entirely gender-neutral terms.
Feminist and other critical scholars have drawn attention to both the
deterioration in the terms and conditions of paid employment and the in-
creasing reliance on women’s unpaid work within families and communities
that have resulted from the neoliberalizing policy directions that have been
pursued by governments in the industrialized West since the mid-1980s
(see, for example, Brodie & Bakker, 2007; Creese & Strong-Boag, 2008;
Neysmith, Reitsma-Street, Baker Collins, & Porter, 2012). These trends
have further undermined many women’s already-precarious position in the

labour market. For example, Armstrong and her co-authors (2006) have
drawn attention to the gendered and racialized impacts of restructuring
in the health care sector intended to reduce government costs and privi-
lege efficiency and productivity as key goals. Through privatization and
contracting out, workers providing food services, cleaning, and ancillary
care – occupational categories in which women (particularly those who
are racialized and/or recent immigrants) are over-represented – have been
exposed to heightened job insecurity, reduced control over work sched-
uling and pace, and cuts to wages and benefits, all of which undermine
their emotional and physical well-being as well as the quality of care they
are able to provide to patients (see also Shalla & Clement, 2007; Stinson,
Pollak, & Cohen, 2005; Thomas, 2010; Vosko, 2006). In addition, research
on workers in the public and non-profit social services sectors in a number
of Canadian provinces has revealed how extensively such services rely on
the contributions of staff – generally women – in the form of unpaid over-
time, emotional labour, and other “invisible” work to compensate for the
shortcomings that result from reduced funding and other reforms (see, for
example, Baines, 2004; Kosny & MacEachen, 2010). In light of these find-
ings it is perhaps not surprising to learn that “in the healthcare industry
[sic] in British Columbia, mental disorders, of which 73% are depression,
represent the fastest growing segment of long-term disability claims … In
the Community Social Services sector, claims for depression are the larg-
est segment of the active LTD claims, accounting for 27.5% of all active
claims” (Bilsker et al., 2004, p. 25).
Women in relatively privileged occupations have also experienced dete-
riorating working conditions that have resulted in an intensification of
the pace and demands of their work, and a concomitant undermining of
their physical and emotional well-being. For example, inadequate gov-
ernment funding for post-secondary education has resulted in increased
class sizes and decreased staff support at the same time as demands have
grown for greater “productivity” and “excellence” in research output (see,
for example, Davies & Bansel, 2005; Menzies & Newson, 2007). These de-
velopments are reflected in the results of a 2007 survey conducted by the
Canadian Association of University Teachers, which found that academic
staff in Canada experience high levels of stress flowing from – among oth-
er things – excessive workload, having to work outside regular working
hours, and work demands interfering with personal life. More than one in
five survey respondents reported taking medication for stress-related ill-
ness during the twelve months prior to the survey (Catano et al., 2007,
p. 23). Acker and Armenti (2004) encountered these issues in their research
on women academics at a number of Canadian universities during the
mid-1990s. In their 2004 article – aptly titled “Sleepless in Academia” –
they noted that many of their research participants reported significant
health problems that resulted from heavy workloads, difficulties juggling
work demands with the time and energy needed to raise children, and the
experience of ever-increasing expectations regarding research productivity
coupled with diminishing supports. Two decades later, these issues have yet
to be adequately addressed. Moreover, Aboriginal and racialized academic
staff, now present in the academic workplace in greater numbers, face addi-
tional challenges in managing this unpromising configuration of demands
and resources because they are also called to contribute to their commu-
nities, both within and outside the academy, and often must direct their
time and energy to remediating institutional and individual racism in their
classrooms and academic units (see, for example, Henry & Tator, 2009).
As the discussion above suggests, such difficulties do not arise in a po-
litical vacuum, and feminist scholarship demonstrates the importance of
placing into a broader context problems that may otherwise appear to be
organizational or individual in nature. For example, in their analysis of the
impact of health care restructuring in British Columbia on nursing practice
and the quality of hospital care, Rankin and Campbell (2007) trace the
connections between contemporary developments in public policy, changes
to organizational policies and practices within the health care system, and
the working lives of hospital nurses. They observe that some of the dif-
ficulties reported by the nurses whom they interviewed were experienced
and understood as reflecting a “toxic working culture” and problematic
interpersonal relationships. However, Rankin and Campbell argue, such
difficulties can be traced back to managerial strategies that divert atten-
tion away from the concrete problems with patient care about which nurses
have concerns, and these strategies have themselves been constituted by
government policy decisions that enact neoliberal commitments. Other re-
searchers have noted the damaging health consequences of structural and
interpersonal violence experienced by nurses in various health care settings,
arguing that conventional understandings of such experiences in individu-
alized terms ignore the many ways in which they are produced and shaped
by neoliberalizing policy shifts, gendered assumptions about nurses and
nursing work, and racist beliefs and organizational practices (Choiniere et
al., 2010, 2014; see also Das Gupta, 2009).
In addition to political and economic trends, such as those noted above,
that have a direct impact on working conditions, feminist research has
demonstrated that the well-being of women workers is also shaped by the

extent to which provincial and federal government policies ensure – among
other things – adequate and fair wages; affordable housing; reliable, ac-
cessible, high-quality child care; and support for the care of elderly par-
ents (see, for example, Cohen & Pulkingham, 2009). Absent such policies,
women and their families are more likely to live in poverty and experience
high levels of stress, both of which are associated with experiences of de-
pression. Moreover, without adequate public policies in these and related
areas, significant time and energy is required on the part of unpaid family
members to provide various aspects of health and personal care to those
who are ill and injured. In addition, the gendered distribution of caregiv-
ing responsibilities means that these family members are generally women,
many of whom are also in paid employment. Attempting to bolster our
mental well-being in the context of our workplaces, while ignoring the
ways in which it is undermined through the effects of various government
policies, would appear to be a Sisyphean task.
Conclusion
The discussion in this chapter suggests that governmentality and femi-

nist analysis each illuminate different aspects of the problem of depres-
sion among employed Canadians. The conceptual framework offered by
governmentality draws our attention to the political dimensions of what
might otherwise appear to be merely technical or scientific aspects of ini-
tiatives intended to address this issue: the techniques we are urged to adopt
in managing our emotional and cognitive lives; the practices of disability
case managers, employers, and insurance companies; and the guidelines of
research funding agencies. Governmentality provides a useful set of ana-
lytic tools for unearthing the linkages between such efforts to “conduct the
conduct” of individuals and wider political rationalities such as neoliberal-
ism, even in circumstances where relevant policy initiatives adopted by the
state are rather thin on the ground.
However, as Li has suggested, there are significant limits both to what
governing practices such as those explored in this chapter are able to
achieve, and to what the conceptual tools provided by governmentality are
able to address. Building on Li’s analysis, I have argued that systemic in-
equities and discriminatory practices organized around gender, racialized
identity, and sexual orientation go undiagnosed by the expertise-driven
governing practices that target depression (or poor mental health gener-
ally) in the workplace and are central to current efforts to address this issue
in Canada. Instead, these initiatives focus on enhancing the coping strate-

gies of individual workers. When they do address organizational practices,
they fail to acknowledge or address their differential impact on employees
whose lives are marked by disparate degrees and forms of marginalization.
And governmentality as a conceptual framework shares with these govern-
ing practices a disinterest in, and an inability to address, systemic inequi-
ties and the processes through which they are constituted.
Feminist analysis, by contrast, allows us to see how the gendered, racial-
ized, and heteronormative features and effects of workplace environments
and practices, of caregiving and community responsibilities, and of neolib-
eralizing policies generate systemic inequities that can compromise in sig-
nificant ways the physical and emotional well-being of Canadian workers.
Such scholarship also reflects a strong commitment to developing insights
that can inform activism oriented to remediating the inequitable features
of workplaces and government policies. Multiple lines of potential action
for addressing the problem of depression among employed Canadians are
identified in the scholarly work discussed above; they include acknowl-
edging and addressing discriminatory and marginalizing practices within
workplaces and communities, as well as the development of public policies
that, among other things, provide visibility and material support for care-
giving work and adequate compensation for secure employment.
Consistent with its lack of attention to systemic inequities, there is little
in the governmentality literature that resonates with the social justice com-
mitments that inform research conducted through a feminist lens. Those
deploying an analytic of governmentality are interested in criticism as an
analytic practice of unsettling the taken-for-grantedness of how things
are, but shy away from prescribing courses of action or taking a normative
stance on the topic of research. This position reflects, in part, an under-
standing of liberatory impulses as themselves implicated in the constitu-
tion of governing practices (see, for example, Rose, O’Malley, & Valverde,
2006). Li (2007) explains her own refusal to offer prescriptions for change
by arguing that the work of the programmer (one who designs and pursues
governing strategies) and the work of the critic “are properly distinct. A
central feature of programming is the requirement to frame problems in
terms amenable to technical solutions ... Under pressure to program bet-
ter, they are not in a position to make programming itself an object of
analysis. A critic can take a broader view” (p. 2).
Of what value, then, is an analytic of governmentality to scholars and
activists who are keenly interested in social justice? While space does not
permit an extended consideration of this question, I would like to close
by advancing two suggestions regarding contributions that this conceptual

framework can make. The first is that its emphasis on governing programs as
tenuous and incomplete, rather than as permanent and secure, provides an
opening to move away from a conceptualization of neoliberalism as mono-
lithic and all-encompassing and towards one that is more nuanced, more
attuned to the uneven and tenuous nature of neoliberal accomplishments.
Such a conceptualization may prove to be less politically disempowering
and immobilizing than are more totalizing depictions of neoliberalism, in-
cluding those that often haunt feminist accounts. The second is that the
cautionary note sounded within the governmentality literature regarding
the governing impetus present within liberatory or progressive political
projects is worth further consideration by feminists and others interested in
pursuing social justice goals. It suggests that, whatever the motivations that
underlie them, efforts to conduct the conduct of others may entail the privi-
leging of expertise and the displacement of the political by the technical.
An attentiveness to this possibility could contribute usefully to practices
of critical reflexivity regarding the potential for such effects within social
justice–oriented policies and programs, both in relation to the problem of
depression in Canadian workplaces and more broadly.
NOTES
1 The initiatives discussed in this chapter are premised on an assumption

that depression is a form of mental illness. This characterization has been
vigorously challenged in a variety of ways by critical scholars, practitioners,
and activists. While agreeing that the conventional understanding of depression
as illness is highly contestable on various grounds, I am interested in pursuing
other lines of critical analysis in this chapter and so do not address this
problematic assumption in my discussion.
2 This phenomenon is not confined to Canada. See, for example, the various
publications produced by the Organisation for Economic Co-operation and
Development, available at http://www.oecd.org/employment/mental-health-
and-work.htm.
3 Provincial government policies do engage directly with workers whose mental
health issues originate within the workplace through worker’s compensation
legislation, but until recently such policies have defined very narrowly the
type and etiology of “mental injuries” that are covered and have explicitly
excluded chronic job stress and mental health challenges arising therefrom
(Lippel, 2011).
4 Although the Global Roundtable decided to suspend its work in 2010,

its analysis remains a cornerstone of activity in this area.
5 This feature of governmentality flows from and is congruent with Foucault’s
“capillary” conceptualization of power. Commentators on this aspect of
Foucault’s work regularly fail to notice that feminist activists were also
articulating such a view beginning in the 1960s, via their argument that
the personal is political.
6 This is congruent with Foucault’s argument that the human sciences
constitute, rather than discover, their objects of study. A future line of inquiry
could usefully track the production of “depression in the workplace” over
the past fifteen years through the myriad studies conducted by researchers
in diverse locations (the university, government, the business community,
the non-profit sector). The scope of “the problem” and the array of research
have grown both exponentially and together.
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9 Gender Non-conformity or Psychiatric
Non-compliance? How Organized
Non-compliance Can Offer
a Future without Psychiatry
j e m m a to s h
Gender non-conformity has been pathologized by psychiatry for well over

a century, and critiques of this pathologization are numerous (Ansara
& Hegarty, 2012; Langer & Martin, 2004; Lev, 2006; Tosh, 2015, 2016;
Winters, 2009a). I add to this body of analysis by drawing on feminist,
transgender, and critical psychology perspectives to critique current psychi-
atric diagnostic approaches to gender. I also foreground the role of power in
psychiatry’s defining of gender normality by interweaving post-structuralist
and intersectionality theory (Crenshaw, 1991; Foucault, 1977), including a
discursive analysis of the criteria for “gender dysphoria”1 (Parker, 2014). In
conducting this analysis, I illustrate how the diagnosis of gender dysphoria
can represent a form of psychiatric non-compliance, which is considered
problematic by psychiatry but offers a useful way of resisting psychiatric
power when the non-compliance is organized. There has been a wide range
of “organized noncompliance” (Emke, 1992) directed at psychiatry, and at
the diagnosis of gender dysphoria in particular. This has included a variety
of collaborative activist strategies that address multiple intersecting issues,
such as sexism, cisgenderism, and sanism. As illustrated by the organized
non-compliance of feminism and psychiatric survivor organizations, a key
aim of this resistance is the transformation of oppressive medical and psy-
chiatric systems. This range of perspectives provides opportunities to reflect
on possible alternatives to psychiatric treatment for gender non-conforming
individuals, as well as on the tension between campaigns that focus on
equal rights and those that focus on social justice.
Critical Perspectives on Gender Dysphoria
In 1980 the American Psychiatric Association (APA) introduced gender

identity disorder2 into the third edition of the Diagnostic and Statistical
256 Jemma Tosh
Manual of Mental Disorders (DSM). In 2013 the fifth edition of the DSM
renamed the diagnosis gender dysphoria. The diagnosis is applied to those
who experience incongruence between their gender identity and their body
or those who have “a strong desire to be of the other gender” (APA, 2013,
p. 452). When the diagnosis is applied to children, it includes a broader
definition, such as: “In boys (assigned gender), a strong preference for
cross-dressing or simulating female attire; or in girls (assigned gender),
a strong preference for wearing only typical masculine clothing and a
strong resistance to the wearing of typical feminine clothing” (APA, 2013,
p. 452).3 The diagnosis is most often applied to transgender and gender
non-conforming adults, adolescents, and children. It is also increasingly
applied to intersex individuals (Tosh, 2013).
Transgender is a non-medical term that is often used interchangeably with
several others (such as gender non-conformity, gender creativity). For the pur-
poses of this chapter I use the word to refer to a diverse group of individuals
whose gender identity does not match either their body or Western society’s
narrow definition of gender “norms.”4 Some choose to undergo gender-
confirmation surgery and/or hormonal interventions, while others do not.
Intersex is a term used to describe individuals who are born with genitalia
that are considered ambiguous by medical professionals; the genitalia do
not correlate with the binary of “male” and “female.” It is important to note
that the appropriation of intersex identities within trans contexts can result
in the erasure of intersex issues (Organization Intersex International [OII]
Australia, 2011). While there are areas of commonality for both groups, there
are also distinct differences, such as transgender communities campaigning
for access to body-modification surgery, which contrasts with intersex ac-
tivism that seeks to protect children from non-consensual genital surgery
(Chase, 2006). As OII Australia (2011) concludes, “intersex and trans peo-
ple should be strong allies, but should not speak for each other” (para. 10).
Likewise, the use of official third-gender categories (such as “x”) can remove
the autonomy of intersex individuals to self-define (OII Australia, 2011). A
law introduced in Germany in 2013 specifies that the label of intersex is man-
datory for those who cannot be categorized as either male or female; thus,
there is no choice for the parents or individual, despite many celebrating the
third gender option. Many laws apply only to men and women (such as mar-
riage laws), and therefore a third gender legal category can grant to intersex
individuals fewer rights than to other genders, including placing children
at an increased risk of non-consensual surgery (Viloria, 2013). These addi-
tional consequences illustrate that social changes can be beneficial to some
communities but result in further oppression for others. This is one example
Gender Non-conformity or Psychiatric Non-compliance? 257
of the tensions between campaigns for equal rights and those for social jus-
tice (Spade, 2011), as the (legal) redefining of gender can change the system
of discrimination and oppression in place for trans people; however, this
law change also has the potential to reduce the rights of intersex people.
Consequently, interventions and research regarding gender non-conformity
require researchers to use an intersectional lens.
The use of the gender dysphoria diagnosis within the professions of psy-
chology and psychiatry enables therapeutic intervention, which for some
therapists includes aims of preventing transgender identities and discourag-
ing gender non-conformity, what Winters (2009a) terms “gender reparative
approaches.” Others within the profession help individuals with the distress
associated with gender dysphoria, as well as the social ostracism that can
result from living within a culture of cisgenderism, a context described by
Kennedy (2013) as “a systemic erasure and problematizing of trans peo-
ple, an essentializing of gender as binary, biologically determined, fixed at
birth, immutable, natural and externally imposed on the individual” (p. 4).
Psychiatry has a long history of framing gender non-conformity as
pathological, which includes a vast array of diagnostic categories that are a
result of numerous changes stemming from disagreement and uncertainty
within the profession (Tosh, 2014, 2016). Controversy and criticism have
followed the overarching concept of gender dysphoria through its many
changes (for example, Bryant, 2006, 2008; Hegarty, 2009; Hird, 2003;
Isay, 1997; Kennedy, 2013; Langer & Martin, 2004; Lev, 2006; Tosh,
2015; Winters, 2011), yet fundamental issues remain, including that (1) it
assumes a “natural,” “normal,” and “healthy” gender binary based on ste-
reotypical notions of gender; (2) it pathologizes expressions of gender that
do not fit into this narrow framework; (3) it positions gender diversity as
pathological, which creates barriers for those who are experiencing gender-
related distress and seeking support; (4) it is culturally specific, in that these
ideas of gender norms are deeply embedded in Western ideals of masculin-
ity and femininity; (5) it is victim blaming when it frames those who expe-
rience victimization as inciting abusive actions from others through their
gender non-conforming behaviours or appearance; and (6) it individualizes
the social problems of cisgenderism and transphobia, rather than promot-
ing gender diversity through social change.
Assuming a “Natural,”“Normal,” and “Healthy” Gender Binary
In her infamous Feminine Mystique (1963) Friedan highlighted the unhap-

piness experienced by White middle-class women when they were trying
258 Jemma Tosh
to live within the boundaries of a 1950s homemaker role. More recently,

Ussher (2010) has highlighted how conformity to restrictive gender roles
can lead to feeling depressed, which can subsequently be individualized
and pathologized through the diagnosis of major depressive disorder
(APA, 2013). In addition, many have observed the issues related to expec-
tations of needing to be a “real man,” including victimization, abuse, and
physical violence, when “failing” to meet the social requirements of “real”
masculinity (for example, Gregorio-Godeo, 2006; Kimmel & Mahler, 2003;
Messner, 1992). Therefore, the assumption that conformity to hegemonic
masculinity or femininity is not only “normal” but also healthy neglects
the wealth of criticism regarding these concepts, as well as the distress and
problems that one can experience in expressing gender within these rigid
confines (Ussher, 2010).
Pathologizing Gender Diversity
Framing gender non-conformity as an aspect of psychiatric abnormality

pathologizes those who do not conform to the rigid categories of femi-
nine and masculine and to Western gender “norms.” This pathologization
continues despite the change from a diagnosis of gender identity disorder
to one of gender dysphoria in 2013. Dysphoria means “distress”; as Fisk
(1974) described it, “a dictionary definition of dysphoria includes dissat-
isfaction, anxiety, restlessness and discomfort” (p. 387). Therefore, this
new diagnostic label emphasizes gender-related distress (Starcevic, 2007;
Winters, 2011). However, it is only the name that reflects this change, as the
DSM-5 criteria still retain their focus on gender non-conforming behav-
iours in childhood as follows: “A strong preference for the toys, games, or
activities stereotypically used or engaged in by the other gender … In boys
(assigned gender), a strong rejection of typically masculine toys, games,
and activities and a strong avoidance of rough-and-tumble play; or in girls
(assigned gender), a strong rejection of typically feminine toys, games,
and activities” (APA, 2013, p. 452). Pathologizing gender non-conformity,
then, continues to be the most prominent way of describing trans individu-
als within psychology and psychiatry (Ansara & Hegarty, 2012).
Creating Barriers for Those Seeking Support
The diagnostic criteria of the DSM have been frequently criticized for being
too broad and for misdiagnosing individuals. However, diagnostic criteria
can simultaneously exclude those who seek medical support, by creating
a variety of barriers to body-modification procedures (Garner, 2011; Lev,

2006). This is the case despite the ease with which those who choose similar
procedures for gender-conforming purposes can access them, such as the
reduction of “man-boobs” or vaginal-tightening procedures (Braun, 2005;
Tiefer, 2008). Garner (2014) addresses this issue through a comparative
analysis of masculine-identified men and trans men seeking “breast”/
breast reduction surgery. Garner (2014) argues that assuming particular
bodies are “natural” (such as those categorized as male or female at birth)
positions change from this state as “disordered.” Subsequently, individu-
als who want surgical procedures that conform to medical perspectives of
“normal” gender face fewer obstacles than those who challenge them, who
are then labelled as “mentally ill.”
Being Culturally Specific
Framing gender as a binary fails to consider the range of cultures that ex-
ist with more than two genders. These alternatives to a gender binary have
frequently been undermined as “unscientific,” “delusions” (for example,
Baklinski, 2013), or “not a feasible option” in “industrialized society”
(Ahmed, Morrison, & Hughes, 2004, p. 849). However, Australia recently
announced a third gender option of “x” (indicating indeterminate, intersex,
or unspecified) on official documents, including passports (Nelson, 2013).5
In India the hijra also represents a gender expression that is “neither male
nor female, man nor woman” (Nanda, 1993, p. 373), and two-spirited indi-
viduals exist within a more nuanced understanding of gender in Aboriginal
communities. The latter gender expression was harshly punished during
European colonization (Tafoya, 2003). As Cameron (2005) describes, “prior
to European contact, many (but not all) Aboriginal groups had two-spirit
members who were integral parts of the community, occupying positions of
honour and communal value. Sabine Lang states that two-spirit people were
‘seen as being neither men nor women, but as belonging to genders of their
own within cultural systems of multiple genders’” (pp. 123–4). It is impor-
tant to note, however, that this term is also highly contested:6 “As Snow Owl
reports, ‘In the Aboriginal community, Two-Spirit is debatable. There is still
a lot of dialogue going on. Some people refuse Two-Spirit because it is an
English term, [and] to the other extreme, people embrace the term because
of homophobia within Canadian society. Because of ostracization from our
families and our communities” (Greensmith & Giwa, 2013, p. 136).
The introduction of a rigid two-gender system and the devaluing of femi-
ninity and gender non-conformity were part of the colonial and patriarchal
260 Jemma Tosh
process.7 Thus, the examination of these issues includes important intersec-

tions between gender and culture.
Blaming the Victim
Equally problematic is the framing of psychiatric intervention and treat-

ment as prevention for “social ostracism” (Zucker, Wood, Singh, & Bradley,
2012). This frames the individual who expresses gender non-conformity as
inciting victimization, much like the victim-blaming discourses regarding
sexual violence and how women dress or behave as “asking for it” (Lea,
2007). As an interviewee in Burke’s (2011) Gender Shock explains, “[gender
identity disorder] doesn’t really separate stress a person feels about their
gender from stress based on social problems people experience because they
are gender variant. It’s all kind of lumped together, so gender variant peo-
ple end up being responsible for the way other people treat them” (p. 193).
Critics argue that interventions should target those who victimize, not
the victimized (Langer & Martin, 2004; Tosh, 2013). Menvielle, Tuerk, &
Jellinek (2002) describe a therapeutic approach that is an example of such
interventions, where therapists facilitate a parenting support group to help
families adapt to a gender non-conforming child, rather than encourag-
ing the child to conform to a rigid gender system. This method is more in
line with the recommendations of the World Professional Association for
Transgender Health (WPATH), which state that changing a child’s gender
identity is no longer considered ethical practice (WPATH, 2011).
Individualizing Social Problems
The diagnosis of gender dysphoria, then, detracts attention from the role
of victimization and social inequalities; that is, feeling distressed by the
actions of others forms not only part of the criteria but also the justifica-
tion for psychiatric intervention. This turns our focus towards individuals
who are sitting separately in private therapeutic rooms, describing experi-
ences of victimization, rather than towards creating awareness of systemic
discrimination. Cisgenderism and transphobia are two ways that gender
non-conforming people can experience social ostracism, discrimination,
and victimization. Cisgenderism (Ansara & Hegarty, 2012) is the discrimi-
nation and exclusion that can result from making assumptions that there
are two gender expressions: it is “a prejudicial ideology, rather than an in-
dividual attitude, that is systemic, multi-level and reflected in authoritative
cultural discourses” (p. 5). Transphobia is the conscious maltreatment and
victimization of trans individuals based on fear, hatred, or disgust (Hill &

Willoughby, 2005; Kennedy, 2013). Therefore, the discussion of transpho-
bia and cisgenderism as a systemic social problem is essential in redirecting
our focus from individual pathologies to social justice and social change.
Psychiatric Power
Moving away from individualized pathologies to social justice requires

consideration of the role of psychiatric power in the diagnosis, treatment,
and experiences of those categorized as “mentally ill.” Under the authority
of mental health legislation and the legitimizing discourse of medicine
and science (Boyle, 1999), psychiatrists have the ability to commit in-
dividuals, physically restrain them, drug them, and perform treatments
on them without their consent (Breggin, 1993; Pescosolido et al., 1999;
Sailas & Wahlbeck, 2005; Szasz, 2007; Winick, 1997). Acting on others
from a position of authority is the predominant understanding of power –
a top-down approach in which powerful individuals oppress the vulnerable
or powerless. Szasz’s (2007) approach to understanding psychiatric power
was to foreground the role of coercion and consent. He described volun-
tary and involuntary psychiatry, framing only the latter as coercive. Within
voluntary psychiatric practice, Szasz highlighted the role of consent by
comparing it to other situations, such as the medical treatment of physical
illnesses. He argued that “typically, physically ill persons accept the patient
role and are cared for without being subjected to coercive social control. In
contrast, many mentally ill persons reject, or would like to reject, the role
of mental patient; this is one of the main reasons why they are subjected to
coercive social control” (p. 23).
However, this understanding of consent underestimates the role of co-
ercion within medical settings, particularly when individuals are socially
disadvantaged because of a range of axes of power and privilege (Collins,
1990). In addition, the non-consensual medical interventions on intersex
children have been well documented (Ehrenreich & Barr, 2005; Kessler,
2000; Reis, 2011), as have the barriers to gender-confirmation surgery for
transgender individuals who have such procedures done (Garner, 2011,
2014; Lev, 2006). This is due to not only the coercive form of psychiatry
but also the intersecting social inequalities of gender, age, and psychiatri-
zation (Cole, 2009; LeFrançois, 2013) within a context of (privileged) med-
ical authority. The specific social location of each individual influences the
different experiences of medical and psychiatric authority. For instance, al-
though the perspectives of intersex children are dismissed because of their
262 Jemma Tosh
age, and the perspectives of trans adults are superseded because they are
pathologized, both lose the ability to make decisions regarding their body
because of a narrow, medicalized definition of gender identity and biologi-
cal sex that is used to justify the decisions made by the medical profession
and parents.
These social inequalities of sexism, ageism, and sanism function to dis-
empower particular groups in their ability to make decisions about their
physical or mental health. For example, the predominant focus on issues
related to intersex and transgender children infantilizes intersex and trans-
gender people through a lack of representation of adults (OII Australia,
2011). This, in conjunction with the framing of children as fundamentally
unknowledgeable and incompetent (Alderson, 2005; Burman, 1996, 2011),
and the psychiatrization of these individuals, which also assumes mental
incompetence (Szasz, 2007), positions intersex and transgender individuals
as incapable of making decisions for themselves. Such positioning privi-
leges the accounts and decisions of the “rational” and knowing others, that
is, doctors and psychiatrists.
The combination of top-down sovereign power (Foucault, 1978) and
intersecting social inequalities results in the application of psychiatric and
medical coercion against socially disadvantaged groups. As Parker et al.
(1995) describe, psychiatric systems are imbued with power regardless of
the intentions of the individual psychiatrists. The power of psychiatry also
lies in its ability to define what is normal. As Caplan (1995) identifies, “if we
allow others to decide whether or not we are normal, we lose the power to
define ourselves” (p. 1). When transgender individuals draw on psychiatric
discourse to define their experiences, the result can be shame, self-blame,
and self-loathing. This is illustrated by Wyss’s (2004) research on the vic-
timization of transgender youth, during which one interviewee stated,
“… like I deserved all of it because I wasn’t normal, like I was sick, bad,
wrong, diseased ... and also, something I can’t explain further than to say
it made me feel like I was somehow a perpetrator – because I knew that
the nature of what was ‘wrong’ with me was sexual / about my sex, I felt
like I was criminal in some way, or I was perpetrating unwholesomeness
on all of the normal people around me, just by being there” (p. 719).
Psychiatry defines what is normal through an overabundance of defini-
tions of abnormality. As Derrida (1978) describes, concepts are defined by
what they are not. Thus, the definition of abnormality is dependent on that
of normality. The meanings of these two concepts (abnormality and nor-
mality) are connected in a conceptual binary. For this reason the definitions
of abnormality within psychiatry, whether related to sexuality, gender, or
childhood, also define “normal” sexuality, gender, and childhood precisely
because these “normal states” are not included in the infamous DSM. If
individuals are not pathologized through a diagnostic label, they are im-
pelled to live according to these unspoken (but known) expectations of
normality. Owing to the vast accumulation of psychiatric diagnoses since
the inception of the DSM in the early 1950s, several critics have argued
that the concept of normality has become so constrained that it represents
an idealized form of White, middle-class, heterosexual, cisgender mascu-
linity that is impossible to attain (Ali, 2004; Caplan & Cosgrove, 2004;
Cermele, Daniels, & Anderson, 2001; Metcalfe & Caplan, 2004; Tosh,
2013; Ussher, 1991), and that “the very idea of normality or mental health
is at stake” (Rose, 2006, p. 474).
The way in which psychiatry categorizes and defines normality consti-
tutes a form of power that is less visible than top-down sovereign power but
more pervasive. This idealized concept of normality functions “like surveil-
lance, and with it normalization becomes one of the great instruments of
power at the end of the classical age. For the marks that once indicated sta-
tus, privilege and affiliation were increasingly replaced – or at least supple-
mented – by a whole range of degrees of normality indicating membership
of a homogeneous social body but also playing a part in classification, hier-
archization and the distribution of rank. In a sense, the power of normaliza-
tion imposes homogeneity” (Foucault, 1977, p. 184).
Through self-surveillance we moderate our own behaviour because of
the potential reactions of others, thus reducing the need for coercion. This
is the internalization of the disciplinary gaze (Foucault, 1977) that Feder
(1997) describes in relation to transgender children and the diagnosis of
gender dysphoria. He explains how the collaboration between school,
family members, and psychiatrists positions the gender non-conforming
child as “deviant” and thus gives (conforming) children “a particular kind
of power” (p. 200) through teasing, name calling, harassment, and general
social ostracism. These combined strategies act as deterrents, support-
ing other children in not deviating from gender norms and encouraging
conformity through the internalization of other people’s expectations of
gender through careful monitoring. As Feder (1997) asserts, a child never
stops being part of the family unit and therefore is always subject to regu-
lation and the disciplinary gaze (Tosh, 2011a).
Gender Non-conformity or Psychiatric Non-compliance?
It is important, then, to consider the role of power in the latest changes made
to the gender dysphoria diagnosis. In 2013 the APA released the fifth edi-
tion of the DSM. The diagnosis of gender identity disorder had undergone
264 Jemma Tosh
extensive critique and criticism, and the DSM-5 (APA, 2013) embodied sig-
nificant changes to the concept, such as the aforementioned name change
to gender dysphoria. Another of these changes is the explicit inclusion of
intersex as a key feature of the gender dysphoria category (see also Tosh,
2013); this inclusion occurred through the addition of a specifier for clini-
cians to indicate whether or not the individual had gender dysphoria with “a
disorder of sex development” (APA, 2013). Disorder of sex development is a
medical term applied to intersex individuals, but it is controversial because
of its framing of intersexuality as pathological (see Diamond, 2009). The
merging of transgender and intersex into a single psychiatric category relat-
ed to gender identity and biological sex has subtler influences as well – most
notably, the inclusion of the term assigned gender in the diagnostic criteria.
Intersex individuals are often assigned a gender based on the decision of
medical practitioners and surgeons (Boyle, Smith, & Liao, 2005). The term
assign relates to categorization and groupings; it is frequently used within
psychiatry (and many other disciplines) when individuals are assigned to
groups for randomized controlled trials (for example, Bergh et al., 2002;
Cohen et al., 2007). Therefore, individuals with this diagnosis have been
assigned to a gender group. In assigning gender, medical professionals as-
sume authority in decisions that are often based on heteronormative and
phallocentric understandings of sexuality. For instance, in decisions re-
garding vaginal surgery on intersex infants, professionals can prioritize the
role of penetration based on the assumption that as an adult the individual
will want to participate in heterosexual intercourse (Reis, 2009).
The assigning of gender disempowers those whom it categorizes, by priv-
ileging psychiatric discourse. Therefore, the latest DSM diagnosis of gen-
der dysphoria, with its emphasis on assigned gender, does not describe an
incongruence between gender identity and physical anatomy; it describes
an incongruence between the way gender is expressed by an individual and
the gender that has been assigned to them by others. This is a notable dif-
ference from the DSM definition of gender identity disorder, which focused
on incongruence within the individual. The criteria for gender dysphoria
incorporate a more adaptable concept of biological gender and therefore
have the potential to be compatible with social constructionist approaches
to sex (for example, Kitzinger, 1999). However, by allowing gender assign-
ment by clinicians to hold such an important place, these criteria simul-
taneously remove the power from individuals to define their own gender,
particularly silencing those who contradict dominant discourses or develop
alternative concepts.
Consequently, in addition to their perceived non-conformity with hege-

monic constructions of masculinity and femininity, individuals are seen to
be refusing to comply with the gender that has been assigned to them by
those in a position of (medical or scientific) authority. This frames gender
non-conformity as psychiatric non-compliance. Emke (1992) identifies sev-
eral assumptions within medicine regarding compliance, such as “doctor
knows best” and the duty of the “patient” to comply as part of the role
of being “sick.” The medical monopoly compounds these assumptions by
making it appear that there is only one way to formulate emotional distress
and subsequent treatment (Conrad, 1992; Emke, 1992).
Within psychiatry there is only one diagnostic text, which encourages
compliance rather than individual decision-making. Compliance is of
great concern to the profession of psychiatry (and the pharmaceutical
industry), with an immense amount of research dedicated to finding out
why individuals do not comply with psychiatric treatment and to creat-
ing ways to encourage compliance (for example, Fleischhacker, Meise,
Günther, & Kurz, 1994; Hack & Chow, 2001; Lysaker et al., 1994). For
example, O’Donnell et al. (2003) describe “compliance therapy” based
on cognitive behavioural therapy (CBT), and motivational interviewing
that is used to “improv[e] adherence to prescribed drug treatment” (p. 1).
However, as Playle and Keeley (1998) outline, non-compliance and psychia-
try form a more entangled phenomenon that includes issues around power,
personal choice in therapy, and the construction of non-compliance as “de-
viant” or a “symptom” of mental illness. Ergo, it is not only the gender
non-conformity but also the non-compliance that is considered pathologi-
cal by mainstream psychiatry.
Social Change: Organized Non-compliance
Although psychiatry pathologizes non-compliance and frames it as an un-

desirable treatment outcome, others have found the concept useful when re-
sisting and transforming oppressive institutions and practices. Emke (1992)
defined organized non-compliance as “the organized, conscious actions of
patient groups – in light of the theoretical assumption that such activity
is a political and therapeutic strategy for reclaiming power over the medi-
calized body” (p. 58). He used the case of the feminist health movement
stemming from the book Our Bodies, Ourselves as an example of how to
produce an alternative to the mainstream approaches that misunderstand
the needs of women, that control resources and decision-making, and that
266 Jemma Tosh
dominate the way in which the system is structured. As Emke, (1992) stat-
ed, “the women’s health movement of 1970s to the present is the clearest
modern example of organized non-compliance. It represents more than
simply a questioning of the medical orthodoxy, but also involves setting up
alternative clinics, supporting unique therapies, and democratizing medi-
cal knowledge. This more pro-active stance did not automatically reject
all therapy, but reevaluated it and attempted to strip the ideology from
the therapy. This movement was aided by the publication of Our Bodies,
Ourselves in 1969 and the establishment of two clinics by 1970 (in Chicago
and Minneapolis)” (p. 66).
Critiques of the psychiatric diagnosis of gender dysphoria thus draw on
feminism as well as campaigns and perspectives from critical psychology,
psychiatric survivors, and transgender and intersex scholars and activists.
Gender dysphoria simultaneously represents a long history of problematic
psychiatric diagnoses, the pathologization of femininity, cisgenderism, and
the categorization of bodies into two distinct sexes. Efforts at organized
non-compliance, then, can draw on a range of resources to challenge cur-
rent practice and promote social change. Emke’s (1992) statement also il-
lustrates that organized non-compliance requires going beyond critique,
or, as Tiefer (2011) puts it, in order to promote social change, campaigns
need to involve resistance and transformation in addition to their criticism
of the status quo.
There has been varied resistance to the pathologization of gender non-
conformity over several decades. This has included a wide range of strategies
from diverse communities who are affected by the ever-changing diagnostic
category now known as gender dysphoria. When the diagnosis was first put
forward, members of the American Psychiatric Association’s Committee
on Women flooded the chair of the DSM taskforce, Robert Spitzer, with
letters outlining their objections, an action that had “considerable impact
on the final diagnosis” (Bryant, 2006, p. 33).
Public protests directed at the American Psychiatric Association have
also been a consistent feature of resistance. In 1996 during the revisions
of the fourth edition of the DSM (eventually producing the DSM-4-TR
in 2000), the organizations Transsexual Menace and GenderPAC (Gender
Public Advocacy Coalition) carried out protests at an APA conference in
Chicago (InYourFace, 1996), aiming to “challenge the APA’s use of Gender
Identity Disorder (GID) to diagnose a disease and stigmatize individuals
who transcend gender norms” (“Inhumane Psychiatric Diagnosis Met with
Protest,” 1996, para. 1). Protests had also occurred at previous APA confer-
ences as well as at the APA’s Washington headquarters (GenderTalk, 1996).
In 1996 the National Gay and Lesbian Taskforce released a statement di-
rectly challenging the gender identity disorder diagnosis (Lobel, 1996),
and the organization GID Reform Advocates was set up to campaign for
reform of the diagnosis, rather than its removal, owing to the system of
insurance reimbursement in the United States8 (GenderTalk, 1996).
In 2009 individuals representing a range of challenges to the DSM and
the APA protested the organization’s annual conference in San Francisco,
creating a “Festival of Resistance” (MindFreedom, 2009). Protesters in-
cluded psychiatric survivors, transgender individuals, and advocates, all
spearheaded by GID Reform Advocates to “protest how the American
Psychiatric Association (APA) is handling revisions to ‘gender identity dis-
order’ and related diagnoses in their fifth edition of the ‘Diagnostic and Sta-
tistical Manual of Mental Disorders’ (DSM-V)” (Winters, 2009b, para. 2).
This protest included a variety of speakers, such as Madeline Deutsch, who
said, “I am a queer, transgender woman … my identity is not pathologi-
cal. My identity does not belong miscategorized in your book. We live in
a society based on individual liberties and informed consent. Each indi-
vidual should be allowed to make decisions about how to live their own life”
(Burke, 2011, p. 194)
The DSM-5 was rejected by several organizations following the release
of its proposals in 2010, including the British Psychological Society (2011),
the Society for Humanistic Psychology (Division 32) of the American Psy-
chological Association (n.d.), and the National Institute of Mental Health
(Insel, 2013). Condemnation of the diagnostic manual related particularly
“to potentially stigmatizing medical labels being inappropriately applied to
normal experiences and also to the unnecessary use of potentially harmful
interventions” (British Psychological Society, 2011, para. 6).
In addition to these general criticisms aimed at the APA and the DSM,
in 2010 several subsections of the British Psychological Society worked with
feminist, trans, intersex, and queer activists and academics to specifically
challenge psychiatric interventions on gender non-conforming children, in-
terventions that are made possible by the diagnosis of gender dysphoria
in childhood. This challenge addressed Dr Ken Zucker, due to his keynote
presentation at the society’s Division of Clinical Psychology Conference in
Manchester, United Kingdom, as well as his positions as the chair of the
Sexual and Gender Identity Work Group of the DSM-5 Revisions, and
the head of the gender identity disorder clinic at the Centre for Addiction
and Mental Health. Zucker’s (2006) approach to treatment of gender non-
conforming children aims “to make youngsters comfortable with their
gender identity (to make it correspond to the physical reality of their
268 Jemma Tosh
biological sex)” (p. 550), with the prevention of transsexualism in adulthood

as a treatment goal – albeit, one that Zucker et al. (2012) argue needs to be
contextualized in terms of “a better psychosocial adjustment” for the child
(p. 392). This approach is considered controversial and has attracted criti-
cism from academics, clinicians, and activists over many years (Burke, 1996;
Hird, 2003; Langer & Martin, 2004; Lev, 2006; Winters, 2009a). It also
contrasts with approaches that embrace gender diversity (Tosh, 2016), and
consequently, there remains much disagreement within the profession re-
garding psychological interventions with gender non-conforming children.
The Manchester protest was part of a larger, academic-activist inter-
vention that embraced complexity, contradiction, and intersectionality.
It brought together several long-standing areas of criticism: activist feminist
and LGBT communities, and those from within the profession who con-
demn approaches that discourage gender non-conformity. This involved
building trust between those from the professions of psychology and psy-
chiatry and those who had been pathologized and oppressed by them. There
were also many who were both activists and academics working within psy-
chology. The protest, and the ongoing campaign, occurred alongside an ac-
cumulation of public criticism and increasing media interest, as well as the
criminalization in several areas in the United States and Canada of LGBT
reparative therapies (Capehart, 2015; Ling, 2015; Steinmetz, 2015).
The protest itself emerged after frequent meetings in which feminist,
trans, lesbian, gay, and intersex individuals discussed complexities and
debates related to trans activism and the gender dysphoria diagnosis. The
tense relationship between feminism and transgender communities (due
to trans-exclusionary radical feminism) also made for a cautious begin-
ning; however, over time, feminist group members showed themselves to be
trans-inclusive. Through the sharing of personal experiences, concerns, and
perspectives the meetings educated those who were unfamiliar with trans-
gender issues. Some feminists talked about the difficulties and pressures of
compulsory femininity; others in the group discussed the pain of not being
able to express their femininity without fearing for their safety. Listening to
the experiences of others enabled critical discussion of different forms of
activism and of the often-exclusionary terms of feminism, queer, and trans.
People also discussed the conflicting perspectives regarding the diagnosis
itself. Those who did not rely on the diagnosis for support or medical inter-
ventions were exposed to the experiences of those who needed it – that is,
of those who needed the “golden ticket” of belonging to a medically sanc-
tioned diagnostic category to access gender identity services (Lev, 2006).
This required those with feminist perspectives to consider the diagnosis
beyond its gender stereotyping and the proposed solution of removing the
diagnosis altogether from the DSM. Thus, despite different perspectives,
the meetings enabled collaborative campaigning through a commitment to
valuing multiple (and often contradictory) points of view (Tosh, 2014). In
other words, these events can be described as intersectional activism, which
has been defined as “activism that addresses more than one structure of op-
pression or form of discrimination” (Doetsch-Kidder, 2012, p. 3).
Prior to Zucker’s presentation, participants of these meetings promoted
their objections through an online petition (iPetitions, 2010) and a state-
ment supported by the Psychology of Women and Psychology of Sexuali-
ties sections of the British Psychological Society (Tosh, 2011b), in addition
to some local and international media coverage (“Intersex in Australia,”
2010; Lockhart, 2010). Copies of the statement were provided to those
who attended the keynote presentation, and Zucker was introduced as both
an “inspiring” and “controversial” individual by the chair of the Division
of Clinical Psychology prior to his presentation. This critical introduction
and the availability of the statement were the result of several discussions
with members of the division’s central committee (see Tosh, 2011c).
While more than sixty people were physically present on the freezing
winter’s day of the keynote address and stood outside the Lowry Hotel in
Manchester, the statement and the online petition showed that many more
people supported the objections of the protesters (Tosh, 2011a). In addition,
Natacha Kennedy, who had organized a protest against gender-reparative
approaches in London in 2008, and the present author were invited to the
conference to debate the issues regarding gender dysphoria treatment in
childhood, evidence that the views of protesters were being taken seriously
(Tosh, 2011d). Similarly, public protests were organized in 2013 in response
to another presentation regarding the DSM-5 and gender dysphoria that
took place at a conference in Cambridge, United Kingdom, where profes-
sional and academic objections were also heard, and trans activist perspec-
tives included (see Davy, 2013). In 2015 the gender identity clinic at the
Centre for Addiction and Mental Health (where Zucker was the clinical and
research lead) underwent what some described as a “damning” external re-
view (“‘Conversion Therapy’ Controversy at CAMH Transgender Clinic,”
2015; Rushowy, 2015; Ubelacker, 2015; Zinck & Pignatiello, 2015) and was
subsequently closed.9
Caplan (1995) argues that public protest can be helpful to those who
have been harmed by diagnosis. The importance of speaking out and trans-
forming “silence into language and action” (Lorde, 1978, p. 40) is an es-
sential aspect of resistance and promoting social change. As Chase (2006)
270 Jemma Tosh
describes in relation to intersex activism, “I started telling my story indis-

criminately to everyone I met.” She goes on to describe how sharing her
story enabled her to meet others who had been through similar experiences,
and that the development of the Intersex Society of North America and
the Hermaphrodites with Attitude newsletter10 both provided opportunities
for sharing stories and peer support. This mirrors feminist consciousness-
raising and the similar methods of psychiatric survivor movements (Lindow,
1999). Sharing these stories through public protests, pamphlets, websites,
blogs, books, and so on breaks the silence and provides a counter (or reverse)
discourse to the hegemonic psychiatric and medical narrative that dominates
in discussions of gender non-conformity.
Trans-formation: The Formation of a Trans System?
The fundamental goal of changing the way individuals are treated by

medicine (and psychiatry) is a common one, shared by many communities
that are invested in campaigning against pathologization. As Chamberlain
(cited in Caplan, 1995) states, “people who have been patients know from
their own experience that warmth and support … were helpful and that
being thought of and treated as incompetent were not” (p. 285). Chase
(2006) highlights the importance of publicizing “the emotional and physi-
cal carnage resulting from medical interventions” (p. 306), in achieving the
fundamental goal of changing the medical treatment of intersex children.
The difficulty arises from the professional dismissal of the voices of those
who are labelled. Like consciousness-raising and the health collectives that
began with the publication of Our Bodies, Ourselves, starting with the ex-
periences of those in need of health services provides a system based on
“the expressed needs of people in crisis or those who have survived crises,
rather than downwards from legal requirements and state policy” (Lindow,
1999, p. 220). Building a system from the ground up requires services to
be led by transgender and intersex individuals and others who are better
qualified to understand the needs of those experiencing gender-related dis-
tress, much like psychiatric survivor alternatives to mainstream psychiatry
(for example, the Hearing Voices Network). A socially just system requires
the questioning of mainstream approaches (Caplan, 1995), examination of
the role of social inequality in the education and training of those who aim
to reduce emotional distress (Williams, 1999), and the valuing of first-hand
experiences and subjectivity over atheoretical and reductive approaches
(Boyle, 1999). Examples of such trans-led initiatives include drop-in clinics
that provide information on issues such as transphobia and discrimination

based on gender identity (for example, TransgenderNI),11 information and
advice services (for example, Scottish Transgender Alliance),12 communi-
ty groups, clubs, and organizations (for example, Gendered Intelligence,
Transforum Manchester, Catherine White Holman Wellness Centre),13 or-
ganizations lobbying for professional and political change (for example,
Press for Change, GID Reform Advocates),14 and attempts to change me-
dia representations (for example, Trans Media Watch).15
However, like the health initiatives stemming from Our Bodies, Ourselves,
these changes need to be incorporated into the medical system because of
the need to provide access to gender-confirmation procedures. Rather than
debate the need for the DSM and a diagnosis to secure access to medical care
and support (which is required work in the short term), discussion on the
development of a trans-led system that holds the issues of access to body-
modification interventions and the depathologization of trans identities at its
centre is essential in planning long-term support for gender non-conforming
individuals. This is an important area for intervention, not only to gain ac-
cess to support and surgery but also to challenge the role that psychiatry
plays in promoting the pathologization of gender non-conforming people;
stigma and oppression form part of the wider issue of psychiatrization.
However, psychiatry should not be the sole focus of activism and resis-
tance. Gender-confirmation surgery is a privilege for some transgender indi-
viduals, but safety, food, and shelter are a struggle for others. Homelessness,
violence, racism, and financial difficulties can take precedence over surgi-
cal interventions for many who are struggling with multiple oppressions
(Mottet & Ohle, 2006; Roen, 2002; Singh, 2013; Wyss, 2004). Therefore, so-
cial justice initiatives need to reflect the diversity of gender non-conformist
communities, in addition to targeting the numerous intersecting oppres-
sions faced by gender non-conformists. Campaigns for change need to also
consider other oppressed groups and social inequities and the ways in which
interventions could affect them. It is important to get to know those who
participate in the campaigning, to reach out to those who are not repre-
sented, and to listen to and incorporate those who feel excluded from (or
further oppressed by) the campaign.
Conclusions
Trans issues and activism are complex and contain a range of debates and
conflicts (Burke, 2011), including disagreement on whether trans activism
272 Jemma Tosh
should aim for equal rights or justice (Spade, 2011). Aiming for equal rights
would include campaigns such as access to health care, whereas working
for social justice would involve general attempts to depathologize transgen-
der identities. Equal rights goals require activists to work with the systems
already in place, such as the DSM and the diagnosis of gender dysphoria.
This may include reforming processes to make gender-confirmation pro-
cedures more accessible for transgender individuals. Depathologization of
transgender identities has included approaches aimed at removing the
gender dysphoria diagnosis. However, activists have had to strike a dif-
ficult balance between that goal and keeping medical procedures avail-
able. In this chapter I have highlighted the role of power in the process
of psychiatric diagnosis and treatment, as well as the ways in which non-
compliance is viewed as problematic within psychiatry but offers use-
ful possibilities for social change and justice. Therefore, while access to
health care is required work in the short term to enable those experienc-
ing distress to access support and procedures, long-term strategies of or-
ganized non-compliance, including the development of trans-led medical
systems, are also required to provide a future for gender non-conforming
individuals without psychiatry.
NOTES
1 I use quotation marks here to illustrate that I am referring to a discursive

concept, rather than trans individuals or their experiences. These quotation
marks are not used as scare quotes to undermine or invalidate the experiences
of trans people but to indicate that my analysis in this chapter refers to the
concept produced by psychiatry and psychology.
2 This was in addition to the diagnosis of “transsexualism,” which was initially
applied to adults but later dropped as a disorder. The DSM-4 (APA, 1994)
defined transsexualism as “severe gender dysphoria” (p. 771).
3 As can be observed from these quotations, the DSM assumes that the
child is a “girl” or “boy” based on their assigned gender, rather than
acknowledging pronouns that better suit the gender identity of the child;
in this way, the profession often misgenders individuals (also see Ansara
and Hegarty, 2012).
4 This is not given as a universal definition of transgender; rather it is a descrip-
tion of my use of the term in this chapter. The word itself is not without
controversy, and it is not used by all who fit the definition I have provided
here (see Tosh, 2016).
5 This is also problematic; see earlier in this chapter.

6 Note that this controversy is related to the term used, not to the existence
of multiple gender expressions.
7 While these examples illustrate the possibility of structuring gender in
many ways, they also show how the appropriation of such concepts can
lead to further oppression for some communities. For instance, the cultural
appropriation of First Nations’ gender identities and concepts within non-
Native queer spaces (Cameron, 2005) strips the concept of its context and
continues the taking of cultural symbols from oppressed groups, or, as
Uwujaren (2013) states, “Westerners are used to pressing their own culture
onto others and taking what they want in return” (para. 11). Cultural
appropriation, then, “is an exercise in privilege” (para. 20).
8 In the United States a diagnosis is required in order for individuals to receive
insurance payments to cover their medical care costs.
9 There have been calls to reopen the clinic based on arguments that its closure
was “politically motivated” due to pressure from “transgender activists”
(Bancroft et al., 2016, para. 1–-2). There has also been support for the clinic
closure from those who called for “more services to better support gender
diverse children and their families through an affirming and trans-positive
model of care” (Ansara et al., 2016, para. 4).
10 See www.isna.org for more details about this publication.
11 See www.transgenderni.com.
12 Visit www.scottishtrans.org.
13 See http://genderedintelligence.co.uk; www.transforum.org.uk; and
www.cwhwc.com.
14 See www.pfc.org.uk; and www.gidreform.org.
15 See www.transmediawatch.org.
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PART FOUR
Media as a Site of Social (In)Justice

10 (De)Pathologization: Transsexuality,
Gynecomastia, and the Negotiation
of Mental Health Diagnoses in Online
Communities
T. GARNER
Imagine two groups of people who identify as men and have breast tis-
sue that they want to have surgically removed. For one group, access to
surgery is freely granted, with minimal restrictions, while, for the other,
access is dependent on a mental health diagnosis and multiple other cir-
cumscriptions. The former are cis1 men with gynecomastia, medically de-
fined as “excess” breast tissue, while the latter are medically defined as
transsexuals through a perceived misalignment between their assigned sex
at birth as female and their self-identity as male. Both groups are recog-
nized in the medical literature as experiencing psychological discomfort,
but it is only in relation to transsexuals that this psychological discomfort
is pathologized through a mental health diagnosis. The latter group is
marked with gender dysphoria in the most recent version of the Diagnostic
and Statistical Manual of Mental Disorders (DSM-5) (APA, 2013), a shift
in terminology from gender identity disorder, which had been the term
used in the previous edition (APA, 1994).2 For men with this diagnosis,
the discomfort experienced in relation to unwanted breast tissue is seen as
part of a larger set of psychological problems. In contrast, for men with
gynecomastia, the often-severe levels of discomfort are entirely normal-
ized as the “natural” response to “excess” breast tissue. This divergence
has significant consequences for these two sets of bodies. The discursive
framing within the two separate medical contexts has the effect of ren-
dering unnatural the transsexual who desires surgical modification, while
maintaining the naturalness and normalcy of men with gynecomastia
who want the same. Bringing these groups together analytically through
a comparative interrogation allows me to explore this inconsistency and
interrogate its material and political implications.
286 T. Garner
Much of the critical academic literature on “sex-reassignment sur-

gery” critiques the mental health diagnosis of transsexuals and challenges
pathologization. However, this approach is complicated by the fact that,
in many jurisdictions, access to the hormonal and surgical procedures that
constitute sex-reassignment surgery is dependent on this diagnosis, as is the
health insurance coverage that makes the procedures financially accessible.
In contrast, chest surgery for men with gynecomastia is medically defined
as cosmetic surgery, and the financial cost is borne by the individual pa-
tient. Rather than entering this debate directly, my own analysis takes a new
direction. I examine narratives of the lived experience of the distinction
between sex-reassignment and cosmetic surgeries; in particular, I focus on
how the online communities that are formed around the two groups of men
negotiate, perpetuate, and resist these markings of health and disease. My
analysis is less concerned with the practical issue of access to surgeries than
with the medical context through which access is delimited and how that
context affects our understandings of the nature of the body. Considering
the experiential narratives on their own terms is critical in evaluating mental
health ideology and practice.
Internet discourse is currently a central site through which bodies are
constituted, particularly in relation to the bodily practices under consid-
eration in this chapter. Given the extent to which we are “plugged in,”
we have become networked bodies. According to tracking surveys of the
Pew Research Center’s Internet and American Life Project, 86 per cent of
American adults now use the Internet, a number that has grown steadily
since their first recording in 1995, when only about 14 per cent of American
adults used the Internet.3 Of further significance, 72 per cent of Internet
users have searched online within the past year for “health information of
one kind or another,”4 the third-highest activity after checking email (92 per
cent) and using a search engine for general information (92 per cent).5 Not
only are people searching the Internet for health information, but they are
becoming “online diagnosers.”6 Thus, the Internet is more than a primary
communication device; it has become a significant site through which the
markings of health and disease are negotiated. One form of the Internet
in particular, online communities, has the potential to provide a critical
space for both maintenance of and resistance to dominant biomedical
framings that structure current beliefs about the body and the mind and
the relations between them. Online communities can also provide a recon-
ceptualization of harmful medical understandings and, given the current
technological era in which online activity can spark community organiz-
ing, have the potential to change medical practice. Thus, the interrogation
The Negotiation of Mental Health Diagnoses in Online Communities 287
I conduct in this chapter is a way to incorporate a social justice perspective

into mental health debates, and my analysis can be considered an explora-
tion of the ways in which people with diagnoses of mental disorder resist
the stigmatization and dehumanization of this biomedical process and re-
imagine new ways of being.
Rheingold (2000) uses the term virtual community to describe “social
aggregations that emerge from the Net when enough people carry on those
public discussions long enough, with sufficient human feeling [italics add-
ed], to form webs of personal relationships in cyberspace” (p. xx). Thus,
I focus on specific web forums that operate as virtual support groups, be-
cause support groups are a form of social organization that lends itself
to community formation due to the feelings that emerge during people’s
interactions there. As noted by Rheingold (2000), the level of connection
felt among members is the most significant condition for community for-
mation online. This sense of connection is strong within both forums dedi-
cated to transgender lives and those focused on men with gynecomastia.
Transgender people or those with gynecomastia may never have talked to
anyone in person about their bodily discomfort; they may be “closeted,”
frightened, unaware of anyone else with their “condition,” or they may live
in an isolated place. So, for both groups, recognizing themselves in others
online and hearing their own experiences reflected back can be the basis
for immediate associations that can lead to important social relationships.
Through these web platforms, friendships are made, older generations pass
on wisdom to the young, and people celebrate each other’s achievements
in the good times and provide support during the bad; in short, online
support groups become sites of community – sometimes even family. This
level of connection and sense of responsibility towards each other is what
makes these online forums significant as potential sites of conceptual and
corporeal resistance to and maintenance of biomedical discourse.
Exploring the narratives within these online groups from a social justice
perspective is highly relevant to the lives of transgender people because
the conceptions of the body identified within these narratives have the po-
tential to challenge harmful attributions of mental illness and dominant
notions of binary sex and gender. The analysis that follows is situated
within a larger project I conducted from 2008 to 2010 that compared the
medical discourse of gynecomastia surgery and transsexual chest surgery.
Detailing the practical similarities and discursive divergences within the
medical context represents a particularly strong challenge to the concep-
tion of transsexuality as mental instability; although this conception and
attendant diagnostic labels potentially provide access to sex-reassignment
288 T. Garner
surgery, they are fundamentally harmful attributions that contribute sig-

nificantly to the exclusion of transsexual people from social and politi-
cal life, including discrimination in housing, employment, and health care.
Comparing discourses in the medical context also allows a reconceptual-
ization of chest surgery that does not pathologize patients, yet still main-
tains the necessity of the surgery. This reconceptualization is often asserted
within the online discourse, where the transsexual body is associated with
the gynecomastic body, and vice versa. The nature and implications of this
association are at the heart of this exploration: how does it allow resistance
to the pathologization and disempowerment of the mental health diagno-
sis associated with transsexuality? Given the social and economic harm of
the diagnosis, as outlined above, this form of resistance has the potential
to promote meaningful inclusion, as well as to challenge notions of binary
sex and gender that underpin current mental health discourse.
Binary Sex, Mental Health, and Transition
Before the online analysis is presented, it is useful to provide a more de-

tailed overview of the discursive differences between the medical literatures
describing the two groups of men under consideration, and the context
within which these medical knowledges exist. Despite numerous challenges
from multiple arenas (or perhaps because of these threats), it is abundantly
clear that the current Western social landscape continues to be marked by
the logic of sexual difference; the notion of the binary sexed body remains
in force, structuring public space, state legislation, medical knowledge, and
cultural institutions (Currah & Moore, 2009; Currah & Spade, 2007; Spade,
2006, 2008). That the body is sexed as male or female is so much taken for
granted that it is not considered an idea but a biological given, a natural
fact, a material foundation. Contemporary Western society is grounded
upon the belief that male and female are stable, incommensurable sexes
separated by distinct corporeal differences (Fausto-Sterling, 1992, 2000;
Laqueur, 1990; Oudshoorn, 1994; Shildrick, 1997). However, according to
Thomas Laqueur (1990), in Making Sex: Body and Gender from the Greeks
to Freud, this “two-sex model” is historically contingent. He describes how
“the old model, in which men and women were arrayed according to their
degree of metaphysical perfection, their vital heat, along an axis whose
telos was male, gave way by the late eighteenth century to a new model of
radical dimorphism, of biological divergence. An anatomy and physiology
of incommensurability replaced a metaphysics of hierarchy in the represen-
tation of woman in relation to man” (pp. 5–6).
Despite the relative newness of the idea of sexual difference, however,

it persists as an ahistorical and transcultural phenomenon, or, in other
words, a “natural” fact of life. Although in the old model the transition
between men and women was more readily imaginable, the new model ef-
fectively disallows transition, as the notion of binary sex is grounded in the
idea of the incommensurability of the sexes (Shildrick, 1997). Transsexuals
may undergo the procedures of “sex-reassignment surgery,” but they never
fully embody the “opposite” sex in the dominant social imaginary (Stryker,
2006). To a great extent the mental health diagnosis associated with trans-
sexuality is based on the assumption of the absolute distinction of the sexes
and the impossibility of transition, or at least the recognition of the im-
mense scale of the transition (APA, 1994, 2013). In contrast, gynecomastia
surgery is not associated in the medical discourse with transition; there is
no crossing of the bodily boundary between sexes that is assumed to be
impermeable. Gynecomastia surgery is merely understood to be a “correc-
tion,” a “restoration” of the “natural” male body, which is assumed to be
always already there (Letterman & Schurter, 1969).
This difference has a significant impact on the way the underlying con-
ditions are framed within the medical discourse. While both conditions
are identified as a “disorder,” the location of the disorder is fundamen-
tally different. Despite the fact that these groups share psychological
discomfort with their bodies and an insistent desire for surgical trans-
formation, for transsexuals the disorder is located in the mind, while for
men with gynecomastia it is in the body. Thus, with regard to the former,
the following definition is found in the introductory pages of the most re-
cent “Standards of Care for the Health of Transsexual, Transgender, and
Gender Non-conforming People”7 (Coleman et al., 2011), produced by the
World Professional Association of Transgender Health (an internation-
al, multidisciplinary “professional organization devoted to transgender
health)8: “Gender dysphoria refers to discomfort or distress that is caused
by a discrepancy between a person’s gender identity and that person’s sex
assigned at birth (and the associated gender role and/or primary and sec-
ondary sex characteristics) … Some people experience gender dysphoria
at such a level that the distress meets criteria for a formal diagnosis that
might be classified as a mental disorder” (p. 5).
In contrast, gynecomastia is simply described as the “excessive” devel-
opment of breast tissue in men. The construction of gender dysphoria
is grounded in the notion of distress, but the distress of men with gyne-
comastia, although frequently acknowledged, is rarely included as an ele-
ment of the disorder. Consider this excerpt from a foundational article by
290 T. Garner
Webster (1946) in the medical field of gynecomastia surgery: “The psy-

chic trauma caused by the ‘reproach of effeminacy’ is the main reason for
operative interference in gynecomastia of the benign type. In modern life
when exposure to the body is so frequent, and this is particularly the case
in military life, the gynecomastia patient is subjected to jibes and teasing
from his fellows. The repeated ridicule may bring about changes in the in-
dividual’s behavior patterns. He hesitates to undress before others in the
gymnasium or on the beach, and he refrains from going in swimming. He
may even shrink from exposing himself in a thin undershirt. Thus, a com-
plex is started which may lead to severe psychotic disturbances” (p. 560).
Here, “psychic trauma” is not pathologized in relation to gynecomastia but
is, in fact, taken explicitly as an indication for surgery.
Within the online communities under consideration these distinct med-
ical configurations are taken up in different ways, with transition being
downplayed within the transsexual forum and emphasized in the gyneco-
mastia forum. As I explicate in the analysis below, it is primarily through
these techniques that the mental health diagnosis is resisted in the former
and welcomed in the latter.
Online Community as Discourse
I read the text of these online communities using Foucauldian discourse

analysis and thus consider discursive formations not as representations of
some external reality but on their own terms and according to their spe-
cific internal characteristics. This form of analysis does not interpret state-
ments but questions them about their modality of existence – that is, what
it means that these particular statements appear, and not others (Foucault,
1970, p. 109). The question is not what a statement implies or what an
author’s intention is, but why some statements are sayable while others are
not. I am concerned not with judgment, whether it be condemnation or
celebration, but with meaning; I am interested in reading the text for those
discursive practices and figures that become intelligible within these com-
munities. As Jonathan Sterne (1999) recognizes in Thinking the Internet, it
is not about the “determination of what a given event on-line means for its
participants (although this may be part of it), but how the possibilities for
meaning are themselves organised” (p. 262).
Foucault’s aim is not to exclude materiality from analysis, as many of his
critics worry; rather, in this framework, discourse is inseparable from mate-
riality. Discourse is not merely representation of materiality; it makes pos-
sible those forms of embodiment that are assumed to be prior to discourse,
defining the contours of our bodies and the borders in between. As such,
this form of discourse analysis has the potential to reveal the material
implications of these textual configurations. It is fundamentally a politi-
cal endeavour because it makes visible the corporeal markings of power
and resistance. In the online communities under consideration I identify
and interrogate the discursive operations through which the bodies that
are marginalized and marked within the medical discourse – through the
mental health diagnosis of gender dysphoria – resist this pathologization,
and how men with gynecomastia paradoxically attempt to empower them-
selves through claiming some form of pathologization. While other texts
are written by one author, or, if there are more, at least offer a relatively
singular perspective, online forums are texts written by multiple authors,
competing or collaborating over issues, which makes them very fertile sites
for exploration.
The online sites on which I focus are FTM Forum9 (a LiveJournal com-
munity) and gynecomastia.org10 (the largest online resource for informa-
tion about gynecomastia). There are a vast number of transsexual online
groups – many more than those dedicated to the issue of gynecomastia –
covering topics ranging from fitness to family. In order to circumscribe my
exploration, I have concentrated on FTM Forum because it is one of the
most established general support groups; it has more members than have
other groups of a similar nature; and, more significantly, it has more traf-
fic, which signals an engaged and interactive membership. Finally, it has a
more open membership call than that of many trans forums: “ftm is a fo-
rum for all self-identified female-to-male individuals or FTM-questioning
individuals, as well as our friends, partners and supporters. In the context
of this community, FTM is a blanket term referring to anyone who was
assigned female at birth and who feels that that is an incorrect or incom-
plete description of their gender. There is no identity policing here – if you
self-identify as an FTM or as a friend or ally, then you are welcome here.”11
This broad definition of FTM allows for multiple embodiments, identi-
ties, and perspectives to be represented within this space. As such, much
debate centres on the negotiation of this multiplicity in relation to concep-
tions of FTM and trans, which makes FTM Forum a rich site for investi-
gating the meaning of FTM embodiment.
In contrast to the proliferation of transgender presence on the
Internet, gynecomastia has a much more centralized existence online, with
gynecomastia.org being the most significant hub of peer support. This
narrower range is evident in the extent to which the journeys through cy-
berspace that are directed towards gynecomastia lead back to this one
292 T. Garner
website, as well as in the large number of members it boasts – over 24,619, in

comparison to only 3,109 on FTM Forum.12 Of course, while both of these
web forums contain a large number of comments from a variety of partici-
pants, providing a multiplicity of perspectives, the Internet is far from being
the ideal paradigm of communication. The online world is circumscribed to
the extent that access to computers is structured by power configurations,
such as race, class, and ability, as well as by the operation of these relations
within cyberspace, though in different forms. For instance, some descrip-
tions of what it means to be a man, the very embodiment under question
within these communities, are criticized by some participants for their re-
liance on an unspoken White masculinity; the definition of maleness can
never be separated from other intersecting power relations. After in-depth
exploration of both forums this analysis focuses on two or three threads
within each that I consider to be rich sites for reading the negotiation of
these communities with the medical discourse that attempts to define them.
Ethical Considerations
As I have said, I consider online forums as text. This is not self-evident

and has specific implications, so I want to spend some time here outlining
my ethical approach to the Internet. The majority of ethical perspectives
on Internet research assume the use of human subjects and the ethical
considerations that go along with that approach (Frankel & Siang, 1999;
King, 1996; Waskul & Douglass, 1996). However, Bassett and O’Riordan
(2002) contest the human subjects research model, arguing that the real-
ism underlying this perspective is constructed through an uncritical figura-
tion of space in relation to the Internet. They emphasize that the Internet
“is not simply a virtual space in which human actors can be observed: it
is a medium through which a wide variety of statements are produced”
(p. 234). I find this approach more productive, as it takes online forums
as sites of conceptual and corporeal formation rather than as mere spaces
for conversation between previously formed bodies and selves. Bassett and
O’Riordan (2002) acknowledge that the human subjects model is appro-
priate in some contexts, but they are concerned that the dominance of
this approach leads to a failure to engage with the “significant textuality
of Internet media” (p. 234). My analysis attempts to address their concern
and provide more balance to research approaches to the Internet through
an exploration of this “significant textuality” and the nature of embodi-
ment that is formed within it. Following Bassett and O’Riordan (2002),
I attempt to apply “a hybrid model of relational ethics that incorporates
text, space and bodies” (p. 247).
For King (1996), there is a very real danger of psychologically harm-

ing “cyberspace participants” who operate on the Internet with a sense
of “perceived privacy,” through research that considers Internet discourse
to be available for public quoting and merely subject to copyright regula-
tions. However, I have tried to balance considerations of harm, in all its
multiplicity and diversity, with my research objectives. As such, I take into
account the public and private nature of the selected online forums in
terms of access, membership, and other relevant factors. In part due to the
public nature of the forums, in the sense that they are (to a varying extent)
accessible without membership, I did not gain informed consent for data
collection from any of the online forums I analysed. Another significant
reason for not gaining informed consent pertains to the fact that I felt
that doing so would affect the discourse being studied. I am interested in
the stories that we in our communities tell each other in the construction
of our selves and our bodies, not the stories that we tell researchers; I am
interested in the questions we ask, not the answers we give to a standard
set of research questions.
In reporting my research, I refer to the forums by name, not pseudonym.
Nor do I use pseudonyms in place of user names, because I consider user
names (and avatars) to be a significant part of the “constructed and perfor-
mative aspects of Internet characters” (White, 2002, p. 261), and to erase
them would be to invest in an “indexical relationship between an Internet
character and the user’s body” (p. 258); user names are an important fea-
ture of the text, not a direct reference to the author. Ultimately, I sincere-
ly believe in the broader political implications of the larger project from
which this chapter is drawn, which is driven by the recognition of the harm
done to trans bodies in the name of the natural. I give this real harm, expe-
rienced daily and often brutally, more weight in my ethical considerations
than the potential harm to online authors, and I believe that this project
has the potential to provide an intervention into that violence.
Online Analysis
Transman or Trans Man
In the terms trans man and transman the space or lack of it may seem insig-
nificant to the uninitiated, but it takes on huge importance in the context
of the FTM Forum and involves the relation between non-trans men13 and
trans men. This becomes clear through the specific examples below, but, in
general, some trans men (although this term is precisely what is at stake)
assert their similarity to non-trans men in order to challenge the notion
294 T. Garner
that they transitioned from female to male, instead asserting that they al-
ready were male. Here the redefinition of the relation between non-trans
men and trans men is focused on the “difference” of transsexuality and
on whether or not this difference is emphasized, which in turn determines
how transition is understood. The debate around this issue produces the
objects of trans man and transman. The former downplays difference from
non-trans men and therefore challenges transsexuality as a form of transi-
tion, framing it as similar to “correction,” as in the gynecomastia medical
discourse; the latter, transman, is more invested in emphasizing the distinc-
tion between trans and non-trans. (The line is not absolute between these
identities, or in my characterization of them, but in general holds true in
this context.)
These alignments, as trans man or transman, were made especially evi-
dent in a thread started on 7 May 2010, which generated ninety-one com-
ments and much heated debate.14 The user fruit_ing opens the conversation
with the following:
fruit_ing: Sometimes I feel like an alien among men raised as men.

What other guy spent 6 years bleeding out their genitals? Maybe part
of it is due to my being a feminist.. but part of it seems like, due to my
upbringing, and the reality of my body, I will never be able to see the
world the way male raised males do. And..I’m okay with that, because
hell if most of the differences I see aren’t ones that m.r.m.’s [male-raised
males] come off worse by comparison.
Just curious to hear some other thoughts.. and how y’all think of your-
selves – transguys? Just plain ole guy? Why?15
Here, fruit_ing primarily marks the difference between non-trans men and
“transguys” in “the reality” of his (female) body, reduced in this instance to
menstruation (which is later acknowledged as a way to “sum up the differ-
ences in a compact way,” though not a “definite barometer”). Poster fruit_
ing seems to espouse a form of bodily essentialism, to the extent that he is
accused by smilesweetirony of replicating the “womyn-born-womyn crap.”
In the following interaction ftmny supports fruit_ing in the assertion of bi-
nary bodily difference, while prettyboicris vehemently disputes the ground-
ing of difference in the body. Although prettyboicris acknowledges a bodily
“condition,” he does not recognize it as necessarily the site of difference.
ftmny: we have to accept that there are things about us.. that are always go-
ing to be different no amount of wishing is going to change how we were
born.. surgery can do a good enough job with some things but the mere
fact that surgery was necessary makes us different.. that doesn’t mean
we can’t socialize and consider ourselves just another guy.. i do most of
the time myself.. our history however does make us different..
prettyboicris: Please speak for yours. If YOU want to be different and view
yourself as such because of a transition history then go right ahead.
I see myself as different from other men because I am an individual
with unique experience. The history of my body is not the difference.
Also your statement “the mere fact surgery was necessary makes
us different.”
That is like telling a child born with some other medical condition
(Blindness, genetic disorders and so on). It doesnt matter what treatment
you get you will be different and accept it!
If I wanted to “accept” having been born with a different physical body
I wouldn’t have had surgery. I refused to accept the hand dealt to me so
I made the necessary changes FOR ME! That has lead me to be just
another guy PERIOD!
Not only does ftmny emphasize the history of the sexed body in marking
the difference between non-trans men and transmen, he also highlights the
necessity of surgical transition as a divergent factor. In contrast, prettyboi-
cris downplays the transitional nature of transgender body modification
by defining transsexuality as a “medical condition,” similar to others such
as “blindness, genetic disorders, and so on” that may need “treatment” but
which do not necessarily imply difference from other non-trans men.
Taking this point further, sin_nombre describes medical conditions that
may cause non-trans men to have bodies with female sexual characteristics,
and transprose asserts that non-trans men with such bodies may seek treat-
ment that would mirror treatment for the medical condition of transsexuality:
sin_nombre: There are men and male-assigned individuals who’ve bled out
their genitalia, often due to CAH [congenital adrenal hyperplasia]. There
are men and male-assigned individuals who’ve grown breasts without
having taken exogenous estradiol. There are non-trans men who have
larger than ‘normal’ hips and asses and there are non-trans men who
were born with ovaries. I’m sure there are non-trans men who’ve dealt
with all
or most of the above because those conditions aren’t that uncommon.
transprose: i don’t see my body as meaningfully different from males who
were male-assigned-at-birth.
296 T. Garner
i don’t think that there is any experience that i have had, or will have,
that a cissexual male somewhere, at some point hasn’t had. HRT
[hormone replacement therapy], chest reconstruction, genital surgery…
Of particular relevance to this analysis, in these comments the topic of

non-trans men with gynecomastia and the surgical modification they may
undergo is included in an attempt to undermine the assumed distance be-
tween the trans body and the non-trans body. The appeal to gynecomastic
conditions is used as a way to assert the similarity of trans men and non-
trans men and to challenge the idea of transition and, by implication, the
mental health diagnosis that in part rests on it.
In contrast, fruit_ing, moving beyond the body, also emphasizes upbring-
ing as a significant factor that sets transmen apart from non-trans men,
asking later in the thread, “What guys were raised as women for 18 years?
Isn’t that bound to make a difference?” Poster algomuyraro agrees with
fruit_ing on the basis of not knowing “how to play football, or tie a tie, or
change a tire.” However, prettyboicris emphasizes that fruit_ing and algom-
uyraro essentialize “male raised males” by disavowing the extent to which
cultural assumptions of race and class intersect with what it means to be
“manly.” In response to algomuyraro, prettyboicris says:
prettyboicris: I think some of these conversations focus more on American

culture and does not take into consideration other cultures.
I guess I have a different view on this stuff because I have a specific
cultural I was raise in and also have different cultures that I interact with
that do not subscribe to any of the things mentioned.
In my culture Football = Soccer not pigskin! Also Men are supposed
to know how to cook, clean, sew, iron, take care of the basic needs
of children and do these regularly.
Tying a tie is not necessarily a skill to be mastered depending on what
type of work you do and where you work.
Here prettyboicris challenges the singular notion of man and makes visi-
ble the assumption of middle-class, American whiteness that grounds these
ideas of “normal” sex and gender.
Also challenging fruit_ing’s argument, doctorrobotnik rejects the notion
that he had a “female childhood” that marks him as distinct from non-
trans men:
doctorrobotnik: i think the actual impact that for those of us who were “raised
as female” can be overrated. speaking for myself, i tend to fit the “typical
trans narrative.” i knew i was a boy from a very young age and although
i didn’t know what trans was, or if it was even possible to transition until i
was WAY older, i always had an internal sense of being male. because of
this, though i was raised/socialized female, a lot of it didn’t “stick.” when i
was given messages by family or society that “girls should do this/be this/
whatever,” part of me always knew that i wasnt a girl and those messages
weren’t for me. so i may have “played the role” but never truly internalized
much of the stuff directed at me. similarly, general social messages and
ideas directed at guys, though not me, were things i would pick up on
and pay attention to. i’m certainly not claiming to have been socialized as
male, but i dont feel like i had a “female childhood” either. i mean, most
little girls don’t grow up knowing that they’re really boys, but happen to be
in the wrong body. i guess i would say i had a “trans childhood,” as always
knowing i was male gave me a different perspective on messages i was
being given.
does that make me different than most non trans guys? sure. did i miss
out on learning a lot of things that most guys do? sure. but again, there is
no “typical” male childhood and a lot of guys are raised in different ways,
and learn certain things and not others. i guess that while my history is
certainly different, it doesnt mean i have no basis to relate to non trans
guys and i did go through some of the same stuff, including male puberty,
deciding what kind of man i wanted to be, etc. so while i admit that i am
different, i dont think the way i was raised deserves as much weight as
many people want to give to it.
The denial of a female childhood is another way of downplaying trans-

sexuality as a form of transition. In this way, continuity is maintained
through the surgical, hormonal, and social modifications, as these are lo-
cated within an uninterrupted male identity, from boy to man (which is
often attributed to male-oriented neurobiology). As such, chest surgery
is not understood as part of the transition from woman to man because
there is no sense of being “a girl” in the first place; instead, chest surgery
becomes a confirmation of self through the alignment of sex characteris-
tics. While doctorrobotnik does not deny his difference, he also emphasizes
the variety of ways in which non-trans men are raised.
In other similar arguments, difference, if any, is associated with unique-
ness – the fact that everyone is different from one another. For users like
mercurychaos, below, it is a claim of difference among both non-trans men
and trans men, not difference between those groups. In contrast to fruit_ing’s
argument, from this perspective the declaration of difference is a technique
of claiming the sameness of trans men and non-trans men; as prettyboicris
298 T. Garner
says, “we are different in the sense that all men are different.” As such, there
is no separate category of “transguys,” because there is no definitive way to
mark a distinction between non-trans men and trans men.
mercurychaos: I’m a trans man – the “trans” part is an adjective, which I

could replace with a lot of other adjectives if I wanted to. I feel “just like
any other man” in the sense that I am male. Everything else will inevitably
vary, and this would still be true even if I were not trans.
The constitution of trans men as “just men who happened to transi-

tion” (prettyboicris) within these debates through the various techniques
described operates to downplay transsexuality as transition in order to
undermine the presupposed distance between the “natural” male body of
non-trans men and the “constructed” body of trans men; it is, in effect, a
way of saying “we are all equally (un)natural.” I give the final word from
FTM Forum to varanus, one of the moderators and a well-respected mem-
ber of the FTM Forum community, because he sums it up so well.
varanus: Obviously my history affects my present, as does anyone’s. But you

know, men of trans experience aren’t the only ones who’ve had alienated
childhoods and adolescences (those of us who did, of course). We’re not
the only group of men who felt incompetent or like we missed something.
We’re not even the only men who have secrets (those of us who are
stealth) or non-normative genitals that need surgical correction (those of
us who do).
In contrast to the construction within medical discourse, transsexuality

does not define these men. Within medical discourse the mental health di-
agnosis of gender dysphoria, which rests on an incongruence of mind and
body, is applied to the whole; the “transsexual patient” effectively becomes
the disorder. Or, in Foucault’s terms, the transsexual is a species, entirely
distinct from “normal” men and women. In this medical formation the
FTM pre-surgical body is rendered absolutely female, and the notion of
transsexual transition is always emphasized and remains the foundation of
the literature, despite the fact that the transition is never considered to be
complete. Further, within medical discourse the disorder of transsexuality
is situated in the mind, while within online discourse the difference is lo-
cated in parts of the body that can simply be corrected. These online narra-
tives resist the medical formations and assert the FTM as simply man, not
through a denial of difference but through an assertion of the difference
of all, including notably the difference of a group of men who have breasts
but are still considered men – those with gynecomastia.
The Suffering of Gynecomastia
In contrast to the medical understanding of gynecomastia surgery as merely

correction or restoration, as outlined above in the section on binary sex,
gynecomastia surgery is reconfigured within gynecomastia.org as a life-
changing transition. Members of the online community describe being
“born again” and “becoming whole.” While members of this commu-
nity recognize that the surgery provides a significant physical change, they
emphasize the mental transformation that it brings, to the extent that the
transition is largely considered to constitute a shift from mental illness (de-
pression, withdrawal, anxiety, lack of confidence, shame) to mental health
(happiness, assertiveness, confidence). In part, members stress the mental
anguish because insurance coverage for the procedure may be provided
on the indication of pain and on the evidence that surgery is necessary to
alleviate that pain. However, the mental pain is also very real, deep, and
long lasting, and this suffering is largely taken to be the foundation of
the community.
The psychological stress of gynecomastia is especially evident in the
thread of “What is your worst gynecomastia memory:’)[sic]” – a conver-
sation that clearly resonates with the community, given that it began in
September 2008 and continues to grow, reaching 307 comments seven years
later, a significant number for a forum in which most threads are fewer
than ten comments long. In this thread non-trans16 men with gynecomastia
echo each other’s stories of a lifetime spent unable to hug freely, to run or
swim without inhibition, to have sex without shame, and much more, par-
ticularly in relation to restriction of movement in space and limitation of
personal growth. Poster ellington7 shares his story in the following excerpt:
ellington7: The worst experience I’ve had with gyne can’t be nailed down
to a specific moment, but it was the everyday struggle of trying to hide
it from everyone. I’d feel petrivide just walking down the street without a
coat on. I’d worry about certain wind gust hitting my chest the wrong way,
or being around a cute girl I was interested in, sparking a great conversa-
tion with her, getting to a point where it was obvious that we had a huge
connection, only to know that I’d have to end the relationship once it
started to get intiment, due to the possibility of having to be naked around
her. I couldn’t go anywere without heavy shirts or coats in warm or cold
300 T. Garner
weather, and had to deal with the mental agony of having to explain to
people why I wouldn’t take them off. Or knowing that I was a alright look-
ing dude, but because I couldn’t be myself that people would feel wierd
around me due to the vibe I was sending out.17
ellington7 locates the suffering of gynecomastia not in the physical con-

dition itself but in the “everyday struggle” of living with it. The weight of
bodily discomfort is not limited to those moments in which the breasts are
made visible through the hurtful words or actions of others, though those
situations are multiple; rather, the shame of gynecomastia is so debilitat-
ing because it remains constant. Although there is harassment from others
that highlights the policing and regulation of sexed and gendered bodies
within social space, the constant suffering is largely due to the breasts
becoming the object of self-surveillance, the most powerful technique of
normalization. As headheldhigh01, a regular and well-respected poster,
says, “i was thinking sometimes it’s not just the big nasty stories, though
they’re the worst and we all have them, sometimes it’s death by a thousand
paper cuts too.” In contrast to the medical classification of gynecomastia,
which focuses on the physical size of the breasts, within this online forum
the severity of gynecomastia is measured more in relation to the level of
suffering. Despite the frequent appeals to “rate my gynecomastia” based
on user photos, members agree with headheldhigh01, who declares in his
signature, “If it screws up your life the same, is there really any such thing
as ‘mild’ gyne?”
Although many of the worst gynecomastia memories cited by members
involve situations in which they had to reveal their bodies, such as in locker
rooms or swimming class, Wedvilla and others reiterate the extent to which
gynecomastia affects their whole life.
Wedvilla: I’d say that I’ve underachieved significantly in my life, always

tantalisingly close to “normal” things like wife and family and career, but
they remained elusive, lost in the fug of depression and misery and daily
compensation / hiding strategies G necessitates.
I think we all learn to strategise our G from an early age, but what
I only realised not so long ago was that it was this daily grind of misery
and strategising that had stunted me, my life was the bird to its cage,
so to speak. The more I thought about it, I realised / remembered that
my life, and particularly my young 10/11 year old life onwards, had
contained countless little incidences that cumulatively caused my adult
dysfuntionality…
I’m finally facing up to it and getting it sorted next month, but the one
thing I’d like to say to any youngsters reading this and these pages, is
whatever you do don’t waste your twenties and thirties by not facing up
to it, do whatever you can as soon as possible to get the cash together,
and get it sorted and give yourself a chance of a fulfilling life.
Wedvilla was forty-two at the time of writing and was about to have
chest surgery, which he imagines as a technology through which he will
transition from “dysfuntionality [sic]” to fulfilment, reclaiming the life
lost to gynecomastia for all those years through the achievement of those
“‘normal’ things like wife and family and career.” On gynecomastia.org it
becomes clear that gynecomastia surgery not only removes the glandular
breast tissue but also, more significantly, the stress and anxiety associated
with that tissue; the joke often cited by members is that it is a “weight off
your chest,” in reference to the dual action of surgery in addressing the
physical condition and the “mental scars” (steveo40) caused by it.
Drawing on Jessica Cadwallader’s study “Suffering Difference: Normali
sation and Power” (2007), in which suffering is taken as an object of analysis
and a technique of power, not merely a natural expression of bodily injury
or disorder, we can view the discursive operation of suffering on gyneco-
mastia.org as a central normalization technique in the production of the
“natural” male body. In distancing the gynecomastic body from the natural
male body, the online expression of suffering asserts the necessity of surgi-
cal modification, not only to “correct” the body but, more significantly,
to restore mental health. While I do not discount the level of suffering, or
unsympathetically advocate living with it in the struggle against ideas of the
normal, one elides the political nature of the experience of suffering by tak-
ing suffering to be a natural and neutral response to the biological “mishap”
of gynecomastia. Drawing on Foucault’s notion of “biopower,” which re-
fers to a culturally and historically contingent form of power that operates
through knowledge formations of the body and population, Cadwallader
(2007) emphasizes that suffering is more appropriately understood as an
“anatamo-political technique of power that plays a critical role in biopow-
er’s normalisation of both the individual and species body” (p. 389). Put
another way, we must keep in mind the larger role that suffering plays in
the normalization of sex and gender within society. However, just because
the nature of bodily discomfort is to a great extent contingent on social,
cultural, and economic conditions does not mean that it is a weight anyone
should have to bear in order to change those conditions. This argument
was used by second-wave feminist Janice Raymond against transsexuals in
302 T. Garner
The Transsexual Empire: The Making of the She-Male (1994), and it is not
one I want to repeat. However, along with Cadwallader, I do hope that the
deconstruction of suffering may provide a space in which “the normal has
been so thoroughly placed in question that difference may be able to be dif-
ference rather than deviance” (2007, p. 392). This is expressed in the FTM
Forum, where the online discourse challenges the perceived distinctiveness
of trans suffering and the demarcation of deviance, and instead asserts dif-
ference as normal.
Becoming a Man
Much of the suffering of gynecomastia is caused by the fact that breasts

are marked as female. Within the contemporary Western social imaginary,
which, as mentioned earlier, figures male and female as “stable, incom-
mensurable, opposite sexes” grounded in “sharp corporeal distinctions”
(Laqueur, 1990, pp. 5–6), the appearance of breasts on a body previously
understood to be male threatens both body and self. This perceived diver-
gence is at the heart of the mental anguish experienced by men with gyne-
comastia and the reason that horror is generally considered the appropriate
response to the presence of breasts. On the thread referenced previously,
the comments and taunts aimed at men with gynecomastia constantly as-
sert the femaleness of the breasts. One girl told EJ1990 he had “baggage
like a girl,” while another said to impervious, “Your boobs are bigger than
mine.” By extension, the femaleness of the body itself is asserted, as kevin-
rex’s narrative demonstrates:
kevinrex: as of late my worst is probably when i was talking to one of my

female co workers. we got into a conversation about pregnancy. she told
me i should never get pregnant because it will make my boobs get bigger.
some of my coworkers who were eavesdropping laughed.
The appeal to pregnancy here highlights the extent to which gynecomas-

tia “females” the body. As such, gynecomastia is represented as a barrier to
the achievement of manhood, which within gynecomastia.org is associated
primarily with success with the “opposite” sex and in sports. In relation to
the “opposite” sex, success is often defined as sexual intercourse, with many
members blaming their virginity on gynecomastia, and those who have en-
gaged in sexual relations emphasizing the extreme self-consciousness that
makes the experience uncomfortable. Poster mthatch1 writes in the thread
referenced above, “During sex, I make every effort to lie flat and avoid being
seen,” a description that shows that, although he has technically engaged

in sex, manhood is not achieved through it because he is unable to take up
the role stereotypically associated with maleness within sexual intercourse,
that of being in a position of dominance in terms of both being physically
on “top” and leading the sexual interaction. However, success is not only
about intercourse. It is also identified with a level of intimacy that fosters
love, which to some extent undermines the masculinized narrative of an ab-
solute obsession with sex above all else. The same story about losing a great
love resurfaces time and time again on gynecomastia.org, particularly as a
“worst gynecomastia memory” in the thread under consideration. Poster
gyne-be-gone’s rendition follows:
gyne-be-gone: Having gynecomastia also destroyed my relationship with

the one and only girl I have ever really loved. We had dated for once as
sophmores in high school but it wasn’t very serious. Then as juniors we
became really good friends again and decided to date again. It became
very serious but I was terrified to have sex with her because I didn’t want
to take my shirt off. I always was thinking of reasons not to have sex even
though I really REALLY wanted to! Because of this she thought I was a big
fat pussy who “wasn’t ready” and it just killed me inside. it was a lose-lose
situation. She eventually dumped me, and this was a major reason why.
A later found out she was cheating on me with another “friend” of mine
since I was to afraid to have sex with her I fucking hate gyne, it ruined
my teenage years. I finally got the surgery done, I”m 29 but its to late, that
girl is gone forever along with all the great care free teen age years that
I missed because of hiding my chest and worrying about my appearance.
For many participants on gynecomastia.org the presence of breasts un-

dermines heterosexual masculinity, because heterosexuality is perceived as
being grounded in the bodily difference between male and female. In their
comments the gynecomastic body is represented as unable to achieve het-
erosexual masculinity because it is situated in such close proximity to the
female body. In a description by helloHELLO, a girl felt his chest and said,
“Oh whats that...looks like we can get bras together”; here, the assertion
of bodily similarity derailed sexual intimacy. In general, the breasts are an
“obstacle,” a physical barrier that prevents men from entering into sexual re-
lations with women, and, within this understanding, gynecomastia surgery
becomes necessary in order to accomplish heterosexuality. The achievement
of heterosexuality (as well as sports success) is identified as a significant rite
of passage of the teenage and early-adult years. As such, online users of
304 T. Garner
the forum put much emphasis on undergoing surgery as early as possible.

Many of the members on gynecomastia.org appear to be young,18 and the
overwhelming advice from older members (see Wedvilla’s comment cited
earlier), and even from mothers participating in the forum, is to act fast in
addressing the condition of gynecomastia through surgical modification.
In direct contrast to both the medical literature on FTM chest surgery, in
which regret is firmly associated with the post-surgical body, and the medi-
cal discourse on gynecomastia surgery, where regret does not feature at all,
the regret expressed on gynecomastia.org is aligned with the pre-surgical
body – the body with breasts. In the former, for example, Bowman and
Goldberg (2006) precede their descriptions of transsexual surgical proce-
dures with a discussion of regret, warning that “primary care providers
are often concerned that their transgender patients will experience regret
following SRS [sex reassignment surgery]” (pp. 4–5). The fact that regret is
never considered in relation to the pre-surgical body highlights that regret
is not merely an object; rather, it operates in ascribing harm to the surgical
procedures that transsexual individuals may undergo. Its association with
the post-surgical body only fails to acknowledge the harm that may be
caused by not going through this process.19 In the medical literature, the
focus remains on bodies unable to go back, and excludes the consideration
of bodies not able to move forward; meanwhile, at gynecomastia.org the
opposite is the case, with contributors emphasizing their inability to move
forward and the regret that goes along with that.
The notion of regret is decidedly absent from the medical discourse on
gynecomastia surgery; regret is just something that does not cross anyone’s
mind – there are clearly no “concerned physicians” here. This absence high-
lights the distinctions between the ways in which sex and gender are dis-
cursively figured in each medical domain. Gynecomastia surgery is merely
thought to “restore” the male body to its natural state; the procedure is
naturalized to such an extent that it allows no space for the consideration
of harm or regret. Not only is it taken for granted that there is no regret
associated with the post-surgical body, but posing the question of regret
makes no sense in this context because of the distance maintained between
the natural sexed body and the notion of regret. The absence of the asso-
ciation of regret with the post-surgical body is one of the devices through
which the post-surgical body is characterized as natural, and the male body
is maintained as one without breasts.
Within gynecomastia.org the representation of manhood as the achieve-
ment of heterosexuality, although the “natural” male body is still consid-
ered a necessary ground, supports a social constructivist approach to sex
and gender. It would appear that the experience of gynecomastia provides

for an understanding of the extent to which, to quote Simone de Beauvoir
(1993), “one is not born, but rather becomes” a man. Within the online
forum, chest surgery is rarely taken as a threat to the natural; rather, it is
considered necessary in the realization of the natural male body. However,
surgical modification is only the beginning of becoming a man through
providing the bodily grounds for achieving heterosexuality and physical
prowess, which then makes the man. Thus, within this context, chest sur-
gery is imagined as a significant part of the transition to becoming a man.
Conclusion
The overlaps within these forums in relation to lived experience are strik-
ing. In particular, both FTMs and men with gynecomastia share the suffer-
ing of being in the “wrong body.” However, the response to this suffering
by those experiencing it is different, due in part to the ways in which the
two “conditions” are medicalized. Transsexualism is pathologized, and so
FTMs declare their “normalcy”; gynecomastia is described as benign, so
men with breasts pathologize themselves. To a great extent FTMs and men
with gynecomastia achieve this positioning by situating themselves as the
other group. Both groups refer to themselves as men with a “medical con-
dition,” but in relation to FTMs this “medical condition” is imagined to be
gynecomastia, and in relation to gynecomastia it echoes the “disorder” of
transsexualism. This alignment generally occurs indirectly, but occasion-
ally explicitly as demonstrated in the following excerpts, the first from the
FTM Forum (also quoted earlier), and the second from gynecomastia.org:
sin_nombre: There are men and male-assigned individuals who’ve grown

breasts without having taken exogenous estradiol. There are non-trans
men who have larger than “normal” hips and asses and there are non-
trans men who were born with ovaries. I’m sure there are non-trans men
who’ve dealt with all or most of the above because those conditions aren’t
that uncommon.
snowstorm: At the end of the day, looking at myself in the mirror, I just felt so
bummed out about my body. I compare it almost to a transgender person
feeling uncomfortable in the body they were living in. I was a man yet had
these features that made me feel so unmanly.
Finally, after years of dissociating myself from my body and feeling
crappy about myself, I finally contacted some plastic surgeons…I just
wanted to look like an normal guy with a flat chest. Simple.20
306 T. Garner
Poster sin_nombre associates FTMs with men with gynecomastia (and

other “medical conditions”) in an attempt to undermine the presupposed
distance between the trans and non-trans body. From the other side, snow-
storm associates men with gynecomastia with transgender folks, highlight-
ing the experience of intense discomfort, to the extent of disassociation, of
living in the body of gynecomastia.
As well as aligning themselves with one another, these two groups ap-
propriate each other’s clinical narrative. Some of the discursive techniques
within gynecomastia.org echo the medical discourse, which does acknowl-
edge the psychological discomfort of gynecomastia and the subsequent
psychological satisfaction gained through surgical modification, as well as
the association of manhood with sport and heterosexuality. However, the
significant difference is that within the medical discourse gynecomastia is
limited to a part of the body, and within the online community discourse
gynecomastia is clearly experienced as a “disease” that undermines the
whole of the body. Thus, within the medical discourse gynecomastia sur-
gery is simply considered a removal of breast tissue, while on gynecomas-
tia.org it is reconceptualized as a significant transition.
Although men with gynecomastia have not become a “species” within
the medical discourse, they are at least to some extent asserting themselves
as one within online space and forming a community on the basis of the
bodily difference of being “gynecomasts.” In part, this naming is an at-
tempt to access coverage for surgical modification, a way to assert its medi-
cal necessity on the basis of a threatening “medical condition,” which on
gynecomastia.org is largely defined by suffering in the absence of patholog-
ical tissue. This turn towards medicalization highlights the extent to which
participants recognize that funding is contingent on mental health diagno-
ses. The emphasis on gynecomastic difference is also due to the fact that the
gynecomast community has a shorter history than that of the transgender
community. The transgender community has moved beyond this classic
narrative of the assertion of bodily difference or identity. However, this
assertion is largely due to the intensity with which men with gynecomastia
feel their bodily difference and their mental pain. In contrast, FTMs chal-
lenge the medical framing of “transsexual” as species and the pathologiza-
tion of their psychological discomfort, declaring themselves to be simply
men with breasts who need surgery.
Within gynecomastia.org the necessity of surgery is rarely questioned.
There is an Acceptance forum within the site in which members accept
their breasts and do not assert the necessity of surgery, but this forum ex-
ists in tension to the online community, which defines itself by the suffering
caused by gynecomastia. Thus, within this online discourse the binary of

the male and female body is maintained (where the former is defined with-
out breasts and the latter with breasts), as is the alignment between sex
and gender identity. In FTM Forum there is more space for challenge to
this dominant biomedical paradigm, as evidenced in the description of the
forum quoted earlier, which allows for the incongruence between assigned
sex and gender identity to be “incorrect or incomplete”; the term incor-
rect implies opposite – either right or wrong – while incomplete implies a
space beyond the binary of sex and gender and their alignment. However,
in both online communities the man with breasts is rarely identified as a
self-identity, or the breasted male body as a viable embodiment. Breasts
remain associated absolutely with the female body, and, just as in the med-
ical discourse, norms of sex and gender are largely maintained.
Narratives of lived experience are often marginalized within the medical
domain and given little authoritative power. Analysing these online com-
munities has the potential to provide grounds for meaningful reflection on
and change to current mental health policy and practice. The number of
possibilities for change include shifting the mental health framework from
diagnosis to counsel and health care provision, including body modifica-
tion, independent of diagnosis; inclusion of transsexuality and gyneco-
mastia within this mental health domain; consideration of the potential
regret involved in not transitioning, for FTMs, and of the potential regret
involved in transitioning, for gynecomasts; consideration of acceptance
in relation to the breasted body; challenges to norms of sex, gender, and
sexuality through future medical research and practice, and avoidance of
cisgenderism, that is, the assumption that normal and natural embodiment
is grounded in alignment between sex and gender binaries; engagement in
advocacy on these issues; and, finally, at the foundation of all of these, pro-
motion of the idea that “difference may be able to be difference rather than
deviance” (Cadwallader, 2007, p. 392).
NOTES
1 Cis (or cis-sex or cisgender) refers to the alignment of bodily sex and gender
identity. The term has been taken up by transgender scholars, activists, and
community members in response to the marginalization associated with using
trans man, versus simply unmarked man.
2 This is a significant shift, which I explore in “Chest Surgeries of a Different
‘Nature’” (2014). Here I will note only that in response to the calls by trans
308 T. Garner
activists and scholars for more recognition of the non-binary nature of sex
and gender, the language of the latest DSM attempts to avoid the notion
of “opposite sex.”
3 “Internet Use Over Time,” Pew Research Internet Project, 14 February 2014,
http://www.pewinternet.org/data-trend/internet-use/internet-use-over-time
4 S. Fox and M. Duggan, “Health Online 2013,” Pew Research Internet Project,
15 January 2013, http://www.pewinternet.org/2013/01/15/health-online-2013
5 K. Purcell, “Search and Email Still Top the List of Most Popular Online
Activities,” Pew Research Internet Project, 9 August 2011, http://www
.pewinternet.org/2011/08/09/search-and-email-still-top-the-list-of-most
-popular-online-activities
6 See note 5 above.
7 “Standards of Care for the Health of Transsexual, Transgender, and Gender
Non-conforming People,” World Professional Association for Transgender
Health, 10 January 2013, https://s3.amazonaws.com/amo_hub_content
/Association140/files/Standards%20of%20Care%20V7%20-%202011%20
WPATH%20(2)(1).pdf
8 “Home,” World Professional Association for Transgender Health, 10 January
2013, http://www.wpath.org
9 http://ftm.livejournal.com
10 https://www.gynecomastia.org
11 “Community Profile,” FTM Forum, 29 July 2013, http://ftm.livejournal.com
/profile
12 The nature of online groups changes over time, so these figures reflect
the membership as of 4 September 2015.
13 I use the term non-trans men here instead of cismen to acknowledge the
problems that are articulated in relation to the latter term in other threads
of the FTM Forum, including the lack of access to the discourse surrounding
the term cis. I consider this issue in more detail in the larger project from
which this piece is drawn.
14 “A recent argument with someone who *was,*” 7 May 2010, FTM Forum,
retrieved on 10 June 2010 from http://community.livejournal.com/ftm
/6175390.html. This thread has since been deleted.
15 In order to represent the text as it appears on the forums under consideration,
I make no attempt to correct the spelling and grammar of the original.
16 In reference to the above discussion I continue to include this modifier in
order to undermine the structural privilege that is generally accorded non-
trans men by simply referring to them as men while marking trans men as
trans men.
17 “What is your worst gynecomastia memory:’),” 4 September 2008, Your Stories,

gynecomastia.org. Retrieved on 25 June 2010, https://www.gynecomastia.org
/smf/index.php?topic=15539.0/
18 This is borne out by the 2009 Cosmetic Surgery National Data Bank Statistics,
compiled by the American Society for Aesthetic Plastic Surgeons, which reveals
that the majority of gynecomastia procedures are undergone by nineteen- to
thirty-four-year-olds (58 per cent), and a significant percentage are carried out
on those who are eighteen and under (9.6 per cent), a far larger figure than for
most other cosmetic procedures in that age group, surpassed only by surgery
on the ear or nose (p. 10).
19 Julia Serano, in a post entitled “transsexual regrets” on her personal blog,
Whipping Girl: The Blog with the Trans Feminine Touch!, acknowledges this
in the following reconfiguration of regret: “While taking hormones or having
surgery is an irreversible, life-altering change, one that is sometimes followed
by regrets, so too is puberty when you’re a young trans person,” http://
juliaserano.livejournal.com/2168.html
20 “24-year-old guy’s Surgery Experience,” 11 July 2010. User Diaries,
gynecomastia.org. Retrieved on 25 September 2010, http://www.gynecomastia
.org/smf/index.php?topic=21079
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11 “One in Five”: The Prevalence
Problematic in Mental Illness Discourse
ta n ya t i t c h ko s k y a n d k at i e au b r e c h t
1 in 5 Canadians will experience a mental illness in their lifetime. The remaining 4

will have a friend, family member or colleague who will.1
One in five will suffer a mental illness, they say; despite our fear we need to
talk about this, they say; today we need to begin to raise awareness about
the prevalence of mental illness, about how it is affecting millions of peo-
ple and is one of the most pressing burdens in the workplaces, communi-
ties, homes, and schools in Canada and around the globe. To all of this,
they say, we need to respond – or at least we need to respond better than
we have been. So a discourse of the troubling presence of mental illness
as a costly social problem to which the non-expert responds inadequately
enters the lives of more and more people in Canada, the United States, and
the rest of the world in general, and does so more and more often. This
chapter focuses on representations of the prevalence of mental illness in
the mainstream media, the primary way in which Western(ized) people are
encouraged to consider what is troubling themselves and others.2
What images of people, problems, and adequate responses are entering
the lives of those targeted by awareness campaigns through the ubiquitous
mental illness discourse on prevalence? Who is targeted, and what role do
awareness campaigns play in shaping the form of social justice that appears
within the context of mental illness?3 What consequences do conceptions
of prevalence hold for how people who experience mental anguish – and
other differences in consciousness – make sense of themselves, others, and
their relationships, especially in times of distress? What, in short, is preva-
lence discourse doing? First of all, though, a few words on prevalence.
The term prevalence is typically used to indicate the measurable pres-
ence of an entity of concern. The prevalence of such an entity is typically
The Prevalence Problematic in Mental Illness Discourse 313
bounded by a time frame. For example, in this week, this year, or over a
lifetime there is an amount, a rate, or a quantity of something of specific
interest to and within a population. Awareness campaigns of mental health
and illness typically use prevalence in this way: “In any given year, one in
five people in Canada experiences a mental health problem or illness, with
a cost to the economy of well in excess of $50 billion. Only one in three
people who experience a mental health problem or illness – and as few as
one in four children or youth – report that they have sought and received
services and treatment. Of the 4,000 Canadians who die every year as a
result of suicide, most were confronting a mental health problem or illness”
(MHCC, 2013c).4
Prevalence discourse typically says that illness, suffering, and even death
are prevalent, whereas seeking and receiving treatment is not. This sense of
prevalence is also used in awareness campaigns involving crime, gambling,
drug use, illiteracy, violence, bullying, and smoking.5 Although prevalence
is a primary way to describe and encounter a wide array of social problems,
this chapter is most concerned with the social, political, and pedagogical
significance of the pervasive use of prevalence discourse within mental
health and illness awareness campaigns in Canada and around the globe.
In order to draw attention to the critical role that notions of prevalence
play in shaping encounters with mental illness as an issue of social justice,
we examine the regular and oft-repeated articulation of mental illness
prevalence in Canada as it is accomplished within educational material
and public awareness or anti-stigma campaigns. We focus on how preva-
lence discourse frames the meaning of people and problems as opportu-
nities to reaffirm the value of normalcy, while also making mental illness
appear as a primary form of the “global burden of disease” (WHO, 2001).
Our analysis focuses on publically available depictions of mental illness in
which the sense of prevalence is produced, authorized, and circulated by
global organizations, national governments, agencies, and corporations.
Through this analysis we demonstrate that public articulations of the om-
nipresence of mental illness have the pedagogical aim of teaching friends,
family members, colleagues, and other non-experts that “we,” that is, the
non-expert, are responding poorly to this problem. We call this taken-
for-granted link between the prevalence of mental health issues and the
inadequate response to them the “prevalence problematic.” It is the func-
tion and meaning of the prevalence problematic that this chapter aims
to reveal, de-naturalize, and address. We do so also as a way to remind
ourselves and others that it could be otherwise; there are many and vari-
ous ways to describe mental health issues, potentiating different political
consequences.6
314 Tanya Titchkosky and Katie Aubrecht
Our analysis, based in interpretive sociology and informed by cultural

and disability studies, reveals the assumptions behind the constitution of
the extraordinary normalcy of mental illness that is achieved via preva-
lence discourse. Our approach is situated in a body of work that critically
examines the hegemony of Western professional disability knowledge (or-
ganized by what many refer to as the “psy-” sciences) in the contemporary
processes of normalization and social control. Central to this examina-
tion is consideration of how psychiatric knowledge and practice, including
public awareness programs, are employed as tactics of public governance
and used to frame interpretations of difference and to authorize social
processes of “in/exclusion” (Ware, 2004). This governance authorizes ex-
ploitative treatment on the basis of individuals being “included as exclud-
able type[s]” (Titchkosky, 2007), which includes those who are regarded
as mentally ill, maladjusted, or disordered. Thus, we address public de-
pictions of the ubiquity and proximity of mental illness with a view to
uncovering the way in which mental illness is put into play in the rational-
ization of social inequality. We do not argue that mental illness is a myth
or a fact, and we do not debate the validity of the measures used to map
mental illness as a key contributor to the global burden of disease (WHO,
2001). Instead, we explore unexamined assumptions about the meaning of
prevalence as it operates within population-level interventions, and how
these assumptions regulate the ways in which the consciousness of people
is framed as problems.
The Prevalence Problematic
There are at least two intertwined interpretive moves within the prevalence
problematic. First, unexamined relations to prevalence tend to treat it as an
obvious sign of a need for intervention – to notice prevalence is to notice
a problem. Second, public articulations of the omnipresence of mental ill-
ness typically connect the non-expert public to an issue as worrisome as the
vast numbers of suffering people; namely, that we (friends, family mem-
bers, and colleagues) are all responding poorly to this problem and thus
contributing to the prevalence of mental illness. The consequence of this
poor response is the reproduction of stigma, which presents a significant
barrier to individuals acknowledging mental illness and accessing profes-
sional help. The commingling of prevalence as a taken-for-granted sign of
the need for intervention, with the professional judgment that most every-
day interventions are inadequate, represents two key, yet typical, moves
that are accomplished within various mental health campaigns. We regard
this specific intertwining of the presence of a problem, and inadequate

response, as the prevalence problematic.
Let us consider what other meanings are made through the prevalence
problematic, which consistently depicts the ubiquity of mental illness as
both a threat to an increasing number of people and a threat to which
the non-expert fails to respond adequately. Consider this typical example:
“Breaking the stigma of mental illness: Everyone knows someone who is
affected, experts say, and we must educate ourselves to deal with it prop-
erly” (Winston, 2013). It seems reasonable enough to argue that dealing
properly with mental illness entails breaking the stigma, because whatever
else mental illness is, it is understood as unwanted and thus easily stigma-
tized. The phrase “everyone knows” suggests that mental illness can be
known in a quantitative fashion. The assertion that stigma can be broken
through education suggests that what everyone knows is that mental illness
is something unwanted that obviously affects many people. Finally, there is
the implication that mental illness is something that non-experts deal with
inadequately. Thus, the prevalence problematic knots together great num-
bers of people within a single conception of mental illness, tied up with
various forms of inadequate response by the non-expert. Still, what does it
mean to move people from noting that there is mental distress, anguish, or
difference, towards accepting the fact of the non-expert’s failure to respond
adequately, while also assuring the non-expert of the availability of effica-
cious expert help?
The prevalence problematic moves its non-expert target population to
accept that the knowledge claim that “1 in 5 Canadians will …” is, in fact,
sensible as a moral claim that aims to elicit more appropriate responses.
The logic displayed in box 11.1 appears repeatedly throughout mental
illness educational and awareness literature across Canada and elsewhere.
In this literature many people are said to suffer a disorder, and these people
are depicted as a cost to the economy, even though only “one in three”
receives the needed help. Millions of people are suffering, at least accord-
ing to Bland, Orn, and Newman’s 1988 statistical rendering of the one-in-
five configuration of mental illness in Canada, and millions more do not
respond appropriately to this suffering. Indeed, the public are depicted as
not even knowing the true extent of the problem or of the stigma faced by
those who have mental health issues. Thus, the ubiquitous appearance of
prevalence discourse symbolically serves as a question: “Did you know?”
Central to anti-stigma campaigns is an interest in addressing and even
normalizing what have hitherto been perceived as “undesired differences”
(Goffman, 1963, p. 5). As Goffman has detailed, the “stigma processes
Box 11.1. Normalcy and the nature of the many
Did You Know?
• “During their lifetime about one in ten people in Canada will experience
an episode of major depressive disorder (the diagnosis given to those
suffering from depression)” (MDAO, 2013).
• “In any given year one in five people in Canada experiences a mental
health problem or illness, with a cost to the economy of well in excess
of $50 billion” (MHCC, 2013b).
• “Only one in three people who experience a mental health problem or
illness – and as few as one in four children or youth – report that they
have sought and received services and treatment” (MHCC, 2013b).
• “If you or a family member is experiencing a mental health issue, you
are not alone. It’s troubling that only one in three people get the help
they need” (Bell Canada, 2013).
• “As many Canadians suffer from major depression as from other leading
chronic conditions, including heart disease, diabetes or a thyroid
condition, according to new data on mental health and well-being
from the Canadian Community Health Survey” (CCHS, 2003).
• “One in five adult Canadians (21.3 per cent) will suffer a mental
disorder in their lives. This figure translates into 4.5 million people.
Anxiety disorders and depression are the most common. Approximately
2.5 million Canadian adults or over 10% of the population 18 and older
will have a depressive disorder” (Bland, Orn, & Newman, 1988).
• “Of the 4,000 Canadians who die every year as a result of suicide, most
were confronting a mental health problem or illness” (MHCC, 2013b).
seem to have a general social function – that of enlisting support for

society among those who aren’t supported by it” (p. 138). Anti-stigma
campaigns reframe the undesired difference that is assumed to reside in
individuals with mental illness as a “desired difference” for expert medi-
cal help (Titchkosky & Michalko, 2009, p. 43). The differences of expert
treatment regimens are differences that are held up as desirable through
the prevalence problematic. That is, the acknowledgment of a significant
number of people suffering an undesired problem requires more public
acknowledgment. Through this wider public acceptance of the extent of
the problem, as well as the acknowledgment that the non-expert does not
know how to do the right thing in the face of mental difference or suffering,
we (the non-experts) should come to desire the difference that professional

help and treatment is assumed to offer. Once conceived as prevalent yet
poorly addressed, the ascribed differences attributed to people who are
labelled mentally ill become something about which we no longer have to
wonder. Instead, mental illness becomes an occasion to display the power
of normalcy to “make right.” That is, personal and public acceptance of
the illness serves as an occasion on which many can perceive and reaffirm
both the normal order of things, including the mind, and the best way to
deal with those who depart from normalcy. In other words, the prevalence
problematic in public educational material on mental health can be read
as a mechanism to regulate social belonging.
This regulation of social belonging moves its targets quickly away from
questions concerning the quality of suffering or difference and towards,
first, the sheer recognition of the great numbers of people who suffer and,
second, a growing awareness of the inadequate response of non-experts
and thence the unity of a solution – professional help. The “one” in the
“one in five” is not the actual focus. Instead, the “one in five” ratio orga-
nizes perception of mental illness as a quantifiable problem. Mental illness
is constructed as a sequence of events with a predictable ending. Individual
responses to mental illness count, which demonstrates the potential of
knowledge to change the courses of action in order to produce other,
more desirable, yet no less predictable, endings. Through the “one in five”
ratio, responses to mental differences are framed as part of the prevalence
equation and thus as isolatable things that can be measured and deemed
prevalent. Most people are not mentally ill (four in five). Articulations of
prevalence (“one in ten,” “one in five,” “one in three,” “many Canadians,”
“you or a family member,” “everyone knows someone who …”) normal-
ize the “fact” of mental illness as a major problem – while simultaneously
establishing that people with mental illness diagnoses are different from
everyone else – and the subsequent “fact” that many others do not know
how to respond appropriately. Thus, the prevalence problematic makes
normal a problem’s prevalent presence while making more evident and
less normal the quality of responses to the problem, especially because
most people are not dealing with it adequately. How mental difference,
illness, or anguish manifests outside of this prevalence problematic needs
never make an appearance.
More than merely accounting for the numbers of people who depart from
health, public education efforts turn the identification of difference into
an instrument of normalcy. According to the logic of the prevalence prob-
lematic, not only is it normal not to have a mental illness, but it is also
commonplace for the normal, or, in Garland Thomson’s (1997) term, “the
normate” (p. 8), to respond poorly to those who do. As stigma is depicted
in these campaigns, it is an occasion to develop a new normal – that is, to
teach others to respond well, instead of poorly, to mental health conditions
that are taken as a given. Public sharing of medical knowledge, statistics,
and health facts in the form of prevalence is supposed to jumpstart this new
response. This project is also animated by what Conrad (2001) refers to as a
“genetic optimism frame” (p. 230), which became dominant in news media
in the mid-1980s. The frame suggests a genetic basis for mental disorders and
locates the solution to the problem and the “problem people” through the
identification of problem genes. In so far as the meaning of mental illness
prevalence is established as a given, we can rapidly move past this phenom-
enon because we are moving on to the question of appropriate treatment or
of better access to treatment as currently defined by Western medicine.
Documenting prevalence represents one way of addressing suffering, al-
beit in a controlled fashion. Mental illness is fixed in time, space, and num-
ber. In 1988 in Canada the number of mentally ill people became fixed,
became one in five (Bland, Orn, & Newman, 1988). Once the number has
been made into a known quantifiable thing, the work of fixing and repair-
ing potentially damaged relations can begin. The work involves turning
away from the qualitative character of differences, in the interest of preserv-
ing a sense of unity for a solution; or the need for a solution trumps an
exploration of self and Other in scenes of suffering. But what sort of unity
is this? Is it unity grounded in social justice?
The Utility and Unity of the Prevalence Problematic
There is a paradoxical kind of unity in the utility of prevalence discourse.

For example, prevalence discourse (“one in five”) can be read as an answer
to a question that we already expect but have not yet asked: What is going
on with her? What happened to him? What’s going on with me? Something
strange, but what? We do not ask, because we may not have the time, the
know-how, or the inclination. Perhaps we do not have the capacity, or we
might think it is not our place. Perhaps we will do more harm than good;
maybe we will add insult to injury; maybe such questioning will be stig-
matizing. A leading premise of the repetitive publication of the prevalence
problematic is that the non-expert lacks specific knowledge and skill – of
this we are to be convinced. Indeed, the only certainty offered through the
robust use of the prevalence problematic in educational materials is that
the other four of the one in five do not know how to respond appropriately
(even who is the one and who are the other four is uncertain). The very
uncertainty of belonging unites us in a common need for professional as-
sistance, as well as giving us a common way to conceptualize the problems
and their solutions.
The prevalence problematic allows mental health issues to be naturalized
as a statistic, a “fact of life” about which experts have knowledge and non-
experts do not, though they should be taught (Aubrecht 2012b; Voronka,
2009). The appearance of prevalence even encourages non-experts to be
united in their sense of concern about a disturbing difference, as well as in
their and our response to it; moreover, the non-experts are told that we do
little beyond stigmatizing an already difficult and disadvantageous condi-
tion. All non-experts, like the ones identified as having trouble, are coached
to turn to experts for assistance. When one person appears different from
the other four, these four are called upon to mind their relations, to stop
stigmatizing others by regarding the problems of these others as medical
conditions in need of medical assistance. Difference is framed as different-
ness and tends to appear as damage, which is understood as the effect of
an untreated condition; thus, professional health measures are to be sought
(Titchkosky & Aubrecht, 2015). Within this interpretive chain, the sugges-
tion of expert assistance uniformly serves as a sign that stigmatization has
stopped. Suggesting or seeking expert help is both expressed and governed
as the most reasonable and productive response within the literature of
mental illness prevalence.
Consider this extreme but not atypical example. The World Health
Organization asserts: “The point we are trying to make this year: for so-
cietal advancement, mental health services are essential. The lack of men-
tal health services is not just negligent; in economic terms, it is irrational”
(WHO, 2011, p. 3). A focus on prevalence makes it possible to manage
this risk, to act rationally, suspend judgment, bracket emotion, and thus
manage the uncertainty of whether we are contributing to the problem
of suffering in our attempts to resolve it (Grech, 2011). The move from
noting difference to charting its prevalence to diagnosing inappropriate
stigmatizing responses to highlighting the need to seek appropriate expert
assistance leaves everyone little room to consider whether this interpre-
tive chain might actually produce what it aims to solve. Maybe it will be
different in treatment, but on the path to treatment there is little room to
consider the actual forms of interaction that have occurred in the face of
a disturbed or disturbing sense of another person. The fact of mental ill-
ness, once established, makes any question as to what is actually going on
into an either/or situation: you are either facing or producing stigma; you
are either receiving or suggesting expert professional help (Smith, 1978).

Even if you are not perceived, and do not experience yourself, as mentally
ill, chances are that you know someone who is. We are united, then, in
an exclusive focus on the assumed utility of expert assistance and united
also in a shared desire for relief from uncertainty and ambivalence. Once
mental illness is known as prevalent, social relations with it can be framed
as technical problems that have ready-made solutions, and mental illness is
made meaningful as an opportunity to show the many that the one knows
what to say, where and when, in order to seek professional help; this is
illustrated in box 11.2, which includes passages from the Bell Let’s Talk
campaign and other websites:
Box 11.2. Blueprints for Change
Blueprints for Change
“Talking about mental health is the first step in making a difference in the
lives of all Canadians. Get the conversation started with our Bell Let’s Talk
Toolkit that’s full of telling facts, compelling information, and simple tools
from some leading health experts. Show your support for mental health and
spread the word about Bell Let’s Talk Day 2013. You can download indi-
vidual parts of the 2013 toolkit below, or download it all by clicking here”
(Bell Canada, 2013).
“Mental health issues are all too common, and seeking help to overcome
them is a sign of courage and strength. Social, emotional and behavioural
problems affect individuals from all walks of life, all income levels, and all
ages. Services provided by mental health professionals are an integral part of
one’s complete health care” (Clean Living Recovery, 2013).
“Mental health concerns us all. Mother, father, neighbour, friend … And
many people either don’t seek or can’t get the services and supports they
need to recover a meaningful life” (MHCC, 2013b).
Through the prevalence problematic the public is encouraged to not only

accept the enormity of the problem but also accept a single solution: seek
expert help. Awareness campaigns invoke the need for strength and courage
in seeking help. In the interest of preserving a sense of unity in the face of
an extensive problem, this utilitarian recommendation acts as a “turning
away” from qualitative engagement with differentness. Unity is forged by
accepting, and even welcoming, an expert rendering of both the problem
of mental illness and its solution. The solution: services and supports as
currently developed within the Western medical industry. This solution,
however, is also tied up with a united belief in an unquestioned divide be-
tween the help of the expert and the stigma of the layperson. Given the
vastness of the medical and pharmacological industry, alongside the great
numbers of people involved in the helping professions, such a divide can
only be a myth.
Prevalence discourse glosses any conversation about the potentially so-
cial and political character of the prevalence problematic and its routine
use. A focus on prevalence protects us from having to have that conversa-
tion. To say “one in five …” moves one individual into a group of mil-
lions of others who are interpreted as a point for treatment, as mental
health projects; the one is to be “protected, enclosed, folded-in” (McGuire,
2016, pp. 134–5). The prevalence problematic is part of a ready-made solu-
tion to the social and ethical fact that people suffer the suffering of oth-
ers (Michalko, 2002, p. 103). The complex array of responses to another’s
mental anguish, including offering assistance or suggesting that one seek
expert assistance, constitutes, among other things, ways to address our suf-
fering of the other’s suffering.
Prevalence discourse keeps at bay what current Western treatment regi-
mens also keep at bay (albeit implicitly) – namely, the need to engage what
comes prior to rendering the number of individuals who will be identi-
fied as people with mental health problems in need of treatment. What
comes prior is perception, that is, the recognition that someone’s troubles
are troubling. Before a quantifiable problem (one in five) can appear, there
is the quality of our interrelations; there is interactional group life tied to
the sense that a person, perhaps our self, is disruptive to everyday group
expectations. Simply put, the sense of a problem must precede the social
capacity to enumerate those problems. This sense of a problem originates
and situates people in the realms of daily life, even as its objectification as a
condition of one or another allows us to sidestep this social fact. Focusing
on prevalence enables the objectification of the relations to mental anguish
and difference by more or less removing the subjects who did the noticing
and by focusing the non-experts on how they represent either stigmatiza-
tion or a bridge to expert help. The discourse of public health prevalence
assumes that everyone is united in moving away from how we come to no-
tice problems, away from how experts and non-experts alike are engaged in
the identification of mental illness. Instead, a focus on prevalence moves
people towards the call for professional treatment and the fact of mental
illness being understood as the need for such treatment. For example, it
would be a step backwards, from the point of view of prevalence, and per-
haps a re-entry into stigma and blame, to consider that our relations be-
tween self and other are difficult to handle under neoliberal rule guided by
profit motives, where one’s “work-ability” is routinely used as a measure
of health. Similarly, it would be a step backwards to consider the relation-
ship between corporate profit and its reiteration and the promotion of the
prevalence problematic (Illich et al., 1977). The prevalence problematic
encourages a move forward; all non-experts are addressed as lacking ad-
equate professional knowledge, and some (the one in five) suffer this more
intensely than do others (the four in five).
Despite a focus on the self and the provision of information to support
individuals in implementing professional regimes of self-help, any expres-
sion of self-reflexivity is noticeably absent from the literature. There is no
mention of the historical emergence of the concept of prevalence as it de-
veloped within the context of psychiatry, or of the conditions of the con-
tested ascendance of psychiatric epidemiology within authoritative public
health perspectives (Lovell, 2014). Readers are left with a belief of mental
illness as a problem condition, objectively given, with which individuals
live, and a conception of prevalence as a condition of the problems that
the professional application of medical science is believed to solve. These
problems take the form of personal properties that are enumerated and
now in need of non-stigmatizing recognition in the form of professional
medical treatment.
Further, through the terms and conditions of the prevalence problem-
atic a peculiar notion of equity arises. Within this context equity becomes
knowable as a measurable goal of timely access to treatment and services.
Equity becomes future oriented and not oriented to the assumptions, prac-
tices, and routines that lie behind the recognition of people as needing
expert help. Prevalence discourse acts to make sure that more people are
included in the campaign’s purview at a time when austerity measures and
notions of scarcity abound, and the inevitability of cutbacks to programs
and services is also being regularly articulated. A right to necessary ser-
vices, supports, and programs becomes a social justice issue, which is high-
lighted through the public use of the prevalence problematic. Prevalence
discourse provides a language for the discursive production of the Other
(the one in the five). But this Other, who has a right to help, is framed as
already outside the normative order of the other four. This is the achieve-
ment of the “Other within” – a figure whose appearance can provoke new
interpretations of the social and political significance of stigma in mental
health educational materials.
The Stigmatized Other Within
Stigma appears as a primary target of concern in descriptions of preva-

lence. The term brings together a welter of beliefs and interactions that
block or stop people from receiving the help they need. Stigma lies between
health and illness, between the many and the one, and is a key difference
between the expert and the layperson. Simultaneously, a focus on stigma
prevents greater knowledge of the grounds of people’s suffering, even as it
shifts our collective attention to the need for services and supports that are
deemed difficult to access because of the effects of stigma.
Along with being an umbrella term for anything that blocks diagnosis
and support for appropriate medical treatment, stigma implies an activ-
ity, and the act of stigmatization is framed by the prevalence problematic
as irrational. When professional diagnosis and expert help are framed as
necessary and appropriate, that which blocks access is framed as irrational.
Stigmatization is something that no rational person would willingly enact.
The logic of the prevalence problematic makes stigma a primary target of
concern by treating it as a source of social oppression and, as such, some
“thing” that is itself in need of prevention and cure, rather than as a de-
scription of the normative order of everyday life and its basis in ableism.7
Ignoring the socially established sense of stigma permits its eradication
without ever having to address the structural inequalities and interactional
norms that organize perceptions of an “undesired differentness that we
did not anticipate” (Goffman, 1963, p. 5). The many different beliefs and
practices that are put under the label of stigma are now diagnosed and
managed as if they can be removed by a single-minded focus on access to
professional supports and medical services. The awareness and eradication
of stigma becomes the solution to the problem of too many “ones,” and a
means of anticipating the undesired differentness embodied in the “ones,”
thus providing for the appearance of a new non-stigmatizing “we” (see also
McGuire, 2010), a “we” who knows that expert help is needed (Aubrecht,
2012a). Prevalence discourse treats stigma as a social evil that can be pre-
vented, avoided, or eliminated through coming to know that some people’s
behaviours, actions, and thoughts are “in fact” symptoms – symptoms of
mental illness – and thus a call for professional help. Such a reading re-
quires the tricky personal task of bracketing the lay understanding that
people’s behaviours, actions, and thoughts are embedded and responsive
to each other within some version of a shared social reality.
Hence the emergence of anti-stigma campaigns and public educational
materials featuring national and international iconic figures, such as the
popular Opening Minds campaign established in 2009 and organized by

the Mental Health Commission of Canada. Its website claims that people
do not seek help because they fear being labelled. The paradox is that, in
order to seek help, one must first identify with a diagnostic category that
is, for all intents and purposes, a label (La Monica & Chouinard, 2013).
Even as anti-stigma campaigns appear to challenge labels, they rely on and
reproduce the legitimacy of labelling and reinforce a natural distinction be-
tween those labelled as ill and those labelled as stigmatizers. Labels certified
by the authority of medical expertise and supported by systems of creden-
tials are deemed legitimate and necessary to the survival of “some people”
(one in five). Consider, for example, the following statement: “Ultimately,
the goal of Opening Minds is to cultivate an environment in which those
living with mental illness feel comfortable seeking help, treatment and sup-
port on their journey toward recovery” (MHCC, 2013a). As the literature
for Opening Minds asserts, the struggle against the stigma of mental illness
rests on “improving understanding” of the “true reality” of mental illness.
Processes of typification that operate through prevalence discourse ratio-
nalize suffering, transforming the messy embodied experiences of trouble,
anguish, and distress into clearly defined symptoms of a disorder that can
anticipate and lead to the proliferation of mental illness treatment. Having
an “open mind” involves cultivating an understanding of the prevalence of
mental illness, its symptoms and causes, their pervasiveness, and the specif-
ic populations that feel their impact most acutely. Being open minded also
involves suspending any interpretations that might challenge or contradict
a medicalized understanding of situations and relations (Aubrecht, 2012b).
Prevalence discourse categorizes mental illness in terms that organize a
sense of people, problems, and their resolutions. Importantly, prevalence
discourse functions in a semi self-sufficient fashion by identifying a condi-
tion that is supposed to be unrelated to the context of its appearance, name-
ly, daily life with others. The condition can appear anywhere, in anyone, and
at any time. Mental illness does not discriminate. Moreover, the prevalence
discourse is very powerful as a categorical containment of difference – of
thought, behaviour, appearance, emotion, comportment, and movement –
by mental illness diagnoses. It is possible to re-imagine injustices now as
the symptom of failed individuality that is decontextualized. According to
the logic of prevalence, injustice can potentially happen to anyone, and the
struggle to carry on in an expected fashion is something that we all experi-
ence, though to varying degrees. Here it is important to note the long and
complex history of mental illness and of intellectual capacity, as these di-
agnoses have been used to manage, sort, and control people in racialized,
gendered, and economic terms (Illich et al., 1977; Morrow, 2004; Reaume,
2002; Ussher, 2010; Ware, 2004). Through the prevalence problematic we
have a unique situation in which structural inequalities are included as a
variable in the determinants of health that influence access to adequate
treatment; at the same time these determinants are negated as part of the
contextual grounds of the apparent growth and expansion of the mental
health and illness industry. This growth is visible in the surge of psycho-
pharmaceutical regimes and also in the rising popularity of self-help books
that frequently sit at the top of bestseller lists (Philip, 2009). The dilemma
of the one and the many thus makes mental illness stand out as a question
regarding the problem of the one and of the nature of the many who do not
respond appropriately – and not as a question regarding the social organiza-
tion of the educational and treatment regimes for mental health and illness.
The one-in-five prevalence problematic represents mental illness as a
problem in need of a solution, which provides the back-drop against which
individuality can appear (Titchkosky & Michalko, 2012). The prevalence
problematic is a form of interpersonal address that structures relations to
consciousness of human difference and suffering, while producing a sense
of division between a “touched” individuality (the one in need of help)
and a productive individuality by those untouched but capable of receiv-
ing education about professional help. In all cases the prevalence prob-
lematic as used and distributed by the mental health and illness industry
gives non-expert populations the task of addressing their individuality.
Individuality becomes, as Bauman (2004) has shown, an urgent “call” and
a task from which no person today can escape, because the “modern state
did whatever it took to make such a duty obligatory for all people inside
its territorial sovereignty” (p. 20). Individuality can now be understood as
the duty to know better the way in which medical experts diagnose what
we do and do not know, experience, and perhaps suffer. One consequence
of this is the reproduction of a normative order that is informed by and
reproduces the primacy of a medicalized version of human suffering as
well as our responses to it.
Shifting the Frame and the Collective Gaze
This chapter demonstrates that prevalence discourse is doing much more

than representing objective and measurable states of illness or suffering.
Understood as a prevalence problematic, the use of numerical depic-
tions of human conditions (for example, “1 in 5 Canadians will experi-
ence a mental illness in their lifetime”) frames a particular way of perceiving
problems as well as their solutions. The prevalence problematic works in

mental health awareness campaigns to frame a plethora of interpersonal
actions as illness meeting stigma, which has the social and political con-
sequences of normalizing the medicalized depiction of many and various
aspects of collective life. Framing human difference and suffering as this
singular picture, the prevalence problematic also supports calls for a more
medicalized version of daily life in the face of the assumed failure of public
responses. As a form of social action, prevalence discourse helps to make
perception of human suffering into an occasion for accepting and seeking
professional treatment, while also minding the stigmatizing potential of
the thoughts and actions of the public that may bar treatment.
The use of prevalence discourse in public awareness campaigns asks us
to demonstrate our healthy rational choices while witnessing the spectacu-
lar problem of mental illness, thus returning the collective gaze once again
to a clear sense of the problem and its solution. This discourse not only as-
sumes the correct shape and figure of human distress and anguish as men-
tal illness but also rapidly propels vast numbers of people into the figure of
the overwhelmed, who may be overwhelming the rest. The “one in five” is
also connected in prevalence discourse to the “one in three”: “It’s troubling
that only one in three people get the help they need” (Bell Canada, 2013).
There is more trouble, however. The “one in three” serves to represent the
notion that help is available, accessible, and, most important, effective.
This troubling fact promotes the idea that the help is there; accessing it,
however, is impeded for at least two in three. The impediment to help, from
the point of view of the prevalence problematic, is, of course, stigma. And
it is the four in five who stigmatize the one in five and have something to
do with the production of only one in three getting the needed help. The
full ramifications of the medicalization of everyday life now comes to light:
everyone is framed as in need of expert help. Moreover, everyone should be
oriented to the eradication of stigma so that people can get the required
help. Taking for granted that anyone getting help is helped, expert help
remains firm and unquestioned. This sense of help grounds the treatment
of some and the education of many to eradicate stigma so that two in
three can gain access to treatment and, even, join the team of the mental
health educational campaign. The prevalence problematic draws treatment
and education into a primary authoritative interrelation that can frame
people’s troubled relations at work and in family, leisure, and love.
More troubling still, the prevalence problematic logic, in order to remain
logical, must ignore the alternative relations to help. It must ignore, for
example, the psychiatric survivor movement (Chamberlin, 1995), the Mad
movement (LeFrançois, Menzies, & Reaume, 2013), the anti-psychiatry
movement (Cooper, 1971; Burstow, LeFrançois, & Diamond, 2014), the

Indigenous studies critique of imposed expert control via Western therapy
(Million, 2013), and the movement to theorize ableism (Goodley, 2014;
Kumari Campbell, 2009). Those directly involved in these movements have
received help and yet do not identify as part of those depicted in the one
in five or the one and three of prevalence discourse. This dis-identification
is not easily framed as yet another form of stigma. Psychiatric survivors,
for example, are not speaking of surviving mental illness; nor are they be-
littling mental anguish as an insignificant experience. In stark contrast,
they are speaking of surviving psychiatric treatment, of surviving help
(Chamberlin, 1995). Psychiatric survivors are not easily framed by either
the treatment or the educational demands supposed by the literature that
makes use of the prevalence problematic and in which the survivors be-
come almost unimaginable. The discursive erasure of these movements
within and against dominant medicalized interpretations of what Goffman
(1963) so infamously refers to as “undesired differences” (p. 5) should be
more than troubling for any critical inquiry into mental health and illness
as a question of social justice, especially given the cultural imaginary of
struggle evoked by the conceptions of “mad” or “survivor” (Orgad, 2009).
This chapter has engaged prevalence as a modern technology of account-
ing, surveilling, segregating, and controlling that is based on and reproduces
a naturalized form of social marginalization and oppression. Regarding
prevalence as a problematic produced by and for the current forms of gov-
erning social life, we demonstrated that a social justice reading of taken-
for-granted facts is a way to cultivate a critical self-reflection of the cultural
assumptions that frame some accounts of populations as factual problems.
A social justice orientation includes questioning what seems beyond ques-
tion and, as such, is already framing the meaning or sense of lives. We hold
that there is an alternative power to be found in addressing the discourse
on the prevalence of mental illness. This work can narrate the social signifi-
cance of a now ubiquitous way of speaking of our contemporary troubles.
A social justice lens can reframe the frame. That is, our chapter aimed to
show that the powerful frame of mental health accounting and educational
campaigns has itself become prevalent in contemporary life. Perhaps this is
the prevalence that deserves greater attention.
NOTES
1 This is taken from Clean Living Recovery’s (2013) mental illness anti-stigma
campaign. However, the notion of one in five appears often and frequently
throughout Canadian mental illness materials and often without citation. As

a taken-for-granted, “sensible sayable” (Titchkosky, 2011, p. 73), its repetitive
appearance and use make it a prime site for social inquiry because it is a form
of knowledge that is doing something, regardless of its truth, verifiability, or
datedness. We believe that the one-in-five fact has been generated from Bland
et al. (1988).
2 We would like to thank Anne McGuire for her work on prevalence, which she
theorizes in chapter 3, “Act NOW: The S/Pace of Advocacy in a Temporality
of Urgency,” of her War on Autism (2016, pp. 103–44). We also thank Rod
Michalko for his discussions and editorial assistance on earlier drafts of this
chapter.
3 For example, Davi Johnson Thornton (2010)’s examination of the Depression Is
Real campaign that was introduced by the National Alliance on Mental Illness
and the National Urban League, a campaign that targets racial minorities.
Thornton examines how the campaign can be interpreted as an expression of
a neoliberal governmentality that operates through the discursive construction
of racial and cultural differences as “risks” that can only be successfully
eradicated by deference to medical science and professional expertise.
4 Canada is not alone in providing mental health educational material that
begins from the prevalence problematic of mental illness. For example, consider
the following: United States, http://www.nimh.nih.gov/health/publications
/the-numbers-count-mental-disorders-in-america/index.shtml; Europe, http://
ec.europa.eu/health/archive/ph_determinants/life_style/mental/docs
/background_paper_en.pdf (p. 10); and the globe, http://jama.jamanetwork
.com/article.aspx?articleid=198847.
5 Awareness campaigns are used to communicate public knowledge about
a broad array of issues including crime; gambling (Responsible Gambling
Council’s Stop the Chase campaign, http://stopthechase.ca); interpersonal
violence (against women, children, elders; for example, YWCA’s Rose
campaign, http://www.rosecampaign.ca); smoking (Health Canada’s Break
It Off campaign, http://breakitoff.ca); alcohol and illicit drug use and abuse;
sexually transmitted disease (for example, CATIE’s Attack of the Cursed
Syphilis campaign, http://www.catie.ca/en/syphilis); and medical conditions
such as obesity, cancer, heart attack, stroke, and Alzheimer’s disease and
related dementias (for example, Alzheimer Society of Canada’s Forget Me
Not campaign, http://www.alzheimer.ca/en/ns/About-us/About-the-Alzheimer
-Society/Forget-Me-Not-Symbol). Although each campaign is recognized
as distinct, they are unified in the shared objective of recognizing a problem,
identifying the risk, symptoms, and spread of this problem, and taking
steps to eliminate, avoid, or reduce the risk represented by the problem.
6 Creative praxis, such as poetry, offers one expression of an alternate and

potentially transgressive mode of portraying the lived realities of mental
health and illness. A special issue of the Journal of Progressive Human Services
edited by Marcia Cohen (2013), titled “Radical Thought & Praxis,” includes
poetry, such as Katie Aubrecht’s (2013) “Mo(u)rning Grief,” which depicts the
experience of life on the other side of public perceptions of “problem” people.
7 For a poignant discussion of this in relation to the 2013 Bell Let’s Talk
campaign, see Lucy Costa (2013). For a thorough approach to the need to
theorize ableism in relation to normal orders of daily life, and for assistance in
questioning the ways in which the concept of human is framed in a disturbing
fashion, see Dan Goodley (2014).
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12 Madness in the Media: An Intersectional
Analysis of Educational Films and
Television Programming, 1940–69
w e n dy c h a n a n d d o r o t h y e . c h u n n
Introduction
In this chapter we present findings from a pilot research project on docu-

mentary films and television programming about “mental illness” that were
used in Canada during the period from 1940 to 1969 for public and profes-
sional education.1 The impetus for the study was the considerable research
attesting to the significance of mainstream media in framing social issues
and problems in liberal states, and to the increasing power of visual media
in this regard during the twentieth century (Kuhn, 1985, 1988; May, 1980).
While the impact of media is not homogeneous and viewers may interpret
the same images differently (Hall, 1993; Schlesinger et al., 1992; Schubart,
1995; Stuart, 2006), it is still very important to examine visual representa-
tions of topics such as madness in public education and culture because
for many people mainstream media are the sole source of information on
these issues. Moreover, although researchers have produced a sizeable lit-
erature on the depiction of mental illness in Hollywood films (see Fleming,
1985; Harper, 2009; Wahl, 1995; Zimmerman, 2003), they have produced
few analyses of documentary films on issues related to madness that were
prepared expressly for public education, especially in the Canadian context
(Druick, 2007; Low, 2003). Intersectional analyses of such films are par-
ticularly lacking.
Our pilot project addresses these gaps. From an intersectional perspec-
tive we have attempted to answer two questions: Did the changes in the im-
ages of madness in educational media during the period between 1940 and
1969 reflect shifting conceptions of and prevailing attitudes towards people
in mental distress? To what extent did educational documentaries on mad-
ness challenge or reinforce the inequalities stemming from gender, race,
334 Wendy Chan and Dorothy E. Chunn
class, and other social relations during that period? Although the study
findings are by no means definitive, our analysis supports the conception
of mental illness as a social construction and suggests that dominant rep-
resentations of madness in our sample of films did reflect changing histori-
cal and cultural contexts over time. The horrors of the Second World War,
and in particular the genocide that was justified by the ideology of a mas-
ter race, led to the post-war suppression, albeit not the eradication, of the
idea that had been widespread in Canada and elsewhere during the inter-
war years that science, in the form of eugenic engineering, could breed out
mental and physical “defects” (Besley, 2002; McLaren, 1990). With this
temporary discrediting of hard eugenic approaches, such as sterilization,
which had been advocated by the inter-war mental hygiene movement, two
other perspectives on mental illness became influential in shaping public
attitudes. One strongly emphasized the social causes of and responses to
“deviant” behaviour (for example, juvenile delinquency, mental illness) and
was premised on the belief that “bad” families, neighbourhoods, and peers,
rather than innate characteristics of the individual, were the source of
mental distress (Muncie, McLaughlin, & Langan, 1996; Pfohl, 1994). The
second and ultimately more dominant approach to deviant behaviour in
Canada post–Second World War was the “psy-” perspective, or the medi-
cal model of mental illness. This perspective was based on the belief that
persons in mental distress were suffering from an illness or a personality
disorder that could be prevented or diagnosed, treated, and cured scientifi-
cally (Chenier, 2008; Gleason, 1999a). The release of the first edition of
the Diagnostic and Statistical Manual of Mental Disorders (DSM) in 1952
arguably marked psychiatry’s successful establishment, in Canada as well
as the United States, of a professional monopoly founded on psychiatrists’
claimed knowledge of madness and expertise to respond to it.2
Although they were ostensibly incompatible approaches, social and “psy-”
perspectives overlapped in several ways during the period of our study.
First, both social and “psy-” perspectives were premised on the belief that
experts and professionals could accurately identify the “normal” and the
“deviant.” Thus, they could scientifically differentiate mental health from
mental illness. Second, in keeping with the liberal optimism that initially
characterized Canada and other flowering welfare states after the Second
World War, they shared an emphasis on inclusion, though each envisaged
different ways of achieving it (Guest, 1997; Struthers, 1994). With respect
to abnormal behaviour, then, adherents of both approaches assumed that
most deviants were salvageable and could be rehabilitated and assimilated
into mainstream Canadian society.
Madness in the Media 335
Third, both social and “psy-” perspectives were exclusionary in the sense
that their definition of normal was narrow. As Mona Gleason (1999a) puts
it, the goal was “normalization of the ideal,” which was represented by the
traditional nuclear family organized around marriage and a sex or gender
division of labour. By that definition, however, many Canadian families
were pathological and in need of normalization (Bohaker & Iacovetta, 2009;
Iacovetta, 2006). Therefore, it was essential to focus on the mental hygiene
of children and youth to promote their sex/gender development – socializa-
tion into normative femininity and masculinity – through the prevention or
diagnosis and treatment of deviance, including homosexuality and juvenile
delinquency (Adams, 1997; Low, 2003). Thus, it was primarily through chil-
dren that the soft side of mental hygiene, with its emphasis on education, was
resurrected in the post–Second World War era.
These ideas and assumptions are evident in the educational documenta-
ries and television programming that we analysed. The sample includes two
main types of media representation, each seemingly aimed at a different
audience. One category of films focuses primarily on the clinical education
of mental health professionals and experts. Of greater interest, perhaps, are
the films that target White middle-class and respectable working-class par-
ents and their children. Some warn them about the dangerous consequenc-
es of deviant behaviour for adults and children who stray from normative
masculinity and femininity, and emphasize the need to embrace confor-
mity and fit into mainstream society (Adams, 1997; Gleason, 1999a,
1999b). Others underline the danger to innocent, vulnerable children and
youth from mentally ill strangers – sexual predators who lurk in public
spaces – and the need to protect future citizens, who are portrayed as the
only guarantee that Canadian society and the status quo will continue
(Chenier, 2008). After the Second World War the “psy-” construction of
the pedophile as a “dangerous stranger” with an uncontrollable “sexual
desire for young people” (Chenier, 2012, p. 1) entrenched the still pervasive,
and demonstrably false, idea that sexual offences against children are not
committed by people they know. This concern with stranger danger was es-
pecially prevalent in media representations during the 1950s in the broader
context of the hysteria, both at home and abroad, about communism and
the pervasive fear that the cold war between the West and the former USSR
would erupt into global nuclear annihilation (Gleason, 1999b; Iacovetta,
2000; Kinsman, 1987).
Although “psy-” approaches to madness became increasingly dominant
during the 1940s and 1950s, it is important to keep in mind that the as-
cendancy of new approaches to madness does not mean that old ones,
such as those based on genetics, disappeared. The existence of compet-

ing discourses about madness thus created possibilities for contesting the
status quo. Take, for example, the competing conceptions of homosexual-
ity. At the beginning of the time period covered by our sample of films,
homosexual sexual relations between consenting adults in both public and
private spaces were illegal. Increasingly, however, psychiatry categorized
homosexuality as an illness, a treatable mental disorder. Canada decrimi-
nalized and helped to normalize private, consensual homosexual relations
in 1969 (though the American Psychiatric Association did not remove ho-
mosexuality from the DSM until 1973) (Drescher, 2012). The reconstruc-
tion of homosexuality was due in part to the anti-psychiatry movements
that emphasized the “right to be different” (Kittrie, 1971) and provided the
rationale for community-based treatment and deinstitutionalization, and
in part to the gay liberation movements of the 1960s. This more critical per-
spective on madness is also evident, but not dominant, in our film sample.
In what follows we document the ways in which the perspectives and
trends set out above are represented in the films analysed. We preface our
qualitative analysis with a brief discussion of the study methodology and
our theoretical framework, followed by a summary of quantitative find-
ings. In subsequent sections we discuss the key themes in the film sample as
well as the competing explanations of and proposed responses to madness.
Finally, we examine how current representations of madness continue to
be shaped by these earlier depictions, and outline the implications of our
exploratory study for contesting what have become common-sense images
of Mad people.
Methodology
The process of selecting the twenty-eight educational documentaries used

for this project involved, first, conducting a systematic search and compil-
ing a bibliography of all titles and related guides used between 1940 and
1969 for public education on madness. We used a variety of film and video
databases in our search that were easily accessible, including the National
Film Board (NFB) archives and online video sites (for example, Google vid-
eo, YouTube), along with national and regional provincial archives. We em-
ployed a broad range of search terms related to madness and mental health
to capture as many films as possible.3 We identified a total of 336 films
within the specified time period. Second, we grouped the films into three
categories: mental health (176), addictions (79), and crime and health (81).
Since our project budget and time frame did not allow for an analysis of all
336 films, we sampled the films that were both easily accessible (available
either locally or online) and from the mental health list, because these films
included the broadest range of topics from our search terms and offered a
good starting point for this exploratory study.4 The development of the cod-
ing sheet drew from the relevant literature on madness and mental health,
as well as the scholarly literature on intersectionality. As such, our coding
categories included both quantitative themes, such as the social character-
istics of authority figures (age, gender, race) in the films, or the causes and
solutions mentioned, and qualitative themes, such as the language used to
talk about mental health and the types of images presented in the films.
Two researchers coded each of the twenty-eight documentaries to ensure
consistency in the coding process.5
Theoretical Framework
Our data analysis and interpretation are informed primarily by the femi-
nist literatures on intersectionality and social regulation. With regard to
the former, we draw on the work of Black feminists who developed the
concept of intersectionality. As discussed earlier in this volume, Kimberlé
Crenshaw is generally credited with introducing the concept. In a pivotal
article Crenshaw (1989) used U.S. anti-discrimination law as an exemplar
to illustrate and challenge the dominant trend in theory, politics, and law
to treat race and gender “as mutually exclusive categories of experience and
analysis” (p. 139). She argued that relying on a “single axis framework” in
anti-discrimination cases “theoretically erased” Black women (pp. 139–40).
As a result, the most privileged members of each group – Black men ex-
periencing race discrimination, and White women experiencing sex dis-
crimination – become the sole focus of attention (p. 140). Coming from a
sociological perspective, Patricia Hill Collins (1990/2000) also concluded
that additive approaches to the analysis of oppression were fatally flawed,
and therefore race, class, gender, and other social relations needed to be re-
conceptualized as interlocking systems of subjugation. Her own significant
contributions to this reconceptualization of the “social relations of domi-
nation and resistance” was to differentiate between intersectionality and
what she called “the matrix of domination,” and at the same time to illu-
minate the linkages between them (1990/2000, pp. 225–30). “Intersectional
paradigms remind us that oppression cannot be reduced to one funda-
mental type, and that oppressions work together in producing injustice.
In contrast, the matrix of domination refers to how these intersecting op-
pressions are actually organized. Regardless of the particular intersections
involved, structural, disciplinary, hegemonic, and interpersonal domains

of power reappear across quite different forms of oppression” (Collins,
1990/2000, p. 18).
Crenshaw and Collins launched a wave of research and publications on
intersectionality during the 1990s, and their work remains influential among
feminists and other critical theorists. For us, a great strength of their theori-
zation of intersectionality is that it illuminates how people may experience
multiple oppressions or privileges, yet relatively few are disadvantaged or
privileged across the board. We share the interest of these theorists in re-
vealing how intersectionality creates different kinds of lived experiences
and social realities, and we are equally concerned with how diversity is
denied by what passes as objective knowledge. In this chapter we draw on
their insights to examine intersectionality and mental health within what
has been called the “psy complex.” This complex has been defined as an
intricate network of theories, professions, and practices governing “the
regulation of normality” (Rose, 1990, pp. 130–3). Regulation can take the
form of either coercive or seemingly non-coercive normalization. The for-
mer is imposed, while the latter is aimed at stimulating self-governance and
adherence to the status quo (Brock, 2003).
In post–Second World War Canada the “psy-” disciplines flourished,
and psychologists and psychiatrists succeeded in gaining control over the
definition of normality. As we noted earlier, Mona Gleason’s (1999a) re-
search has demonstrated how members of these professions worked hard
to entrench the “normalization of the ideal,” which, in the realm of men-
tal health, meant adherence to a life plan organized around the traditional
nuclear family unit in which both parents and children played specific roles
and fulfilled age- and gender-related responsibilities. “Psy-” professionals
also staked their claim as the regulators of normality, arguing that they had
the expertise to determine which individuals and groups could be trusted to
self-regulate through education and other non-coercive measures; to iden-
tify those who were slipping towards deviance but were salvageable through
re-education; and to isolate and contain the “incorrigibles.” Both coercive
and non-coercive forms of regulation are depicted in our film sample, but,
as we will see, the majority of the films fall into the second category.
Sample Overview
A short overview of the films used in this study will help to contextualize
the thematic discussion that follows. Most of the films in our sample were
either documentaries or docudramas. Many were produced in the United
States but were used for public and professional education in Canada as
well. There is also a long documentary-film tradition in Canada, in which
federal and provincial governments have promoted film-making about daily
Canadian life to “encourage cultural consciousness at home and political
and economic awareness abroad” (Hogarth, 2001, p. 123). Documentary
films and docudramas provide facts about particular issues or events, with
docudramas exercising some degree of artistic licence to convey the nar-
rative. Often, opinions and specific messages for viewers are also present
in these films. During the inter-war years Canadian policymakers increas-
ingly regarded film-making as an efficient medium for documenting the
nation and its national interests for public consumption and education
(Hogarth, 2001). Only four films in our sample did not fit into these two
categories and can instead be classified as television programs.
The establishment of the National Film Board in 1939 institutionalized
documentary film-making in Canada, and its purpose was overwhelmingly
didactic (Roberge, 1960). The influence of a direct-address style was evi-
dent in both the NFB and the non-NFB films that we analysed, where an
authoritative, usually off-screen, narrator interpreted the visuals – regarded
as the Griersonian tradition (a tribute to NFB’s founder, John Grierson).
Twenty-four of the films in this project employed a narrator to provide
explicit, authoritative commentary for the viewer. In many cases this was
complemented by the use of experts or professionals in the film’s dramati-
zation, such as doctors, nurses, psychiatric social workers, teachers, coun-
sellors, and police officers, to add visual images of authority. During the
period in which the films were produced (1940–69) Canada was a colonial,
patriarchal society, and the social characteristics of these authority figures
were representative of the times (Comacchio, 1994). Figures of authority
were predominantly male, White, and middle-class because women and
people of colour were not at the time deemed legitimate authority figures
owing to their subordinate status. However, the individuals of concern in
the films included White, middle-class women and children because they
were identified as vulnerable and easily influenced. Fears about women
and children’s well-being for the sake of national health and the nation’s
future led, as discussed previously, to the rise of mental hygiene profes-
sionals – psychiatrists, counsellors, social workers, and educators – who
were staking claims for their expertise in shaping the health of Canadians
(Comacchio, 2002).
The racial landscape of these films, however, depicted a White society,
the normalized ideal, and thus people of colour and Indigenous peoples
were virtually excluded from representation. Gleason (1997) argues that
definitions of normalcy were equated with the idealized, Anglo-Saxon,

middle-class individual and family, and differences between and across
ethnic or class groups were minimized. Constructive education about the
ideals of national and individual life was a key strategy in the attainment
of good health, and documentary films played an important role in deliv-
ering these messages. Consistent with the findings of other historians, our
films depicted advice that was rooted in middle-class, racialized, and gen-
dered ideals about what constituted a good, normal, healthy citizen. The
individuals and families portrayed in the films reflected the target audience
– primarily White, middle-class individuals and families whose stability af-
ter suffering through war and the 1930s Depression was seen to be in peril
and in need of strengthening (Gleason, 1997).
In the period of our study, public health campaigns using the media to
modify public attitudes through education were an important component
of legitimizing mental illness and educating the Canadian public (that is,
the White working and middle classes) about their own mental health status.
With the help of experts in psychology and psychiatry – people who were
“scientifically trained in defining and treating social problems such as disease,
immoral conduct, unemployment, feeble-mindedness, crime and pauper-
ism” (MacLennan, 1987, p. 8) – Canadians could, voluntarily or sometimes
through coercion, access a range of techniques and treatments, such as drug
and shock (electroconvulsive) therapy, that were tailored for their condition
(Gold, 1988). The “psy-” approach to mental illness increasingly displaced
the social perspective argument that social problems stemmed from social
pathologies and needed to be addressed through social reform. The “psy-”
idea of individualized treatment is based on the view that social problems
are largely the result of individual deficiencies (whether socially derived or
innate), and therefore the solution should fit the needs of the individual.
The films in our study adhere to this line of thinking. In almost half of the
films (thirteen) the symptoms or causes of mental health issues were seen
largely to be the result of individual deficiencies, and the proposed remedy,
such as adopting a better attitude, was equally individualistic.
Key Themes in Films
Qualitative analysis revealed that our sample of educational documentaries

can be divided into three groups, each of which captures a dominant, over-
arching theme. The first category of films develops the theme mentioned
previously, that children can be both dangerous to others as well as en-
dangered by others. With regard to endangerment, the films in our sample
emphasize the external threats to (White) children, with the most serious
source of potential harm emanating from male strangers who are mentally
ill sexual predators (Dangerous Stranger, 1950; Say No to Strangers, 1957;
The Strange Ones, 1963). In these films girls and boys are equally at risk
from “strange ones” (that is, pedophiles) and need to heed the warnings
of teachers, parents, police, and other adult authorities not to engage with
people they do not know, regardless of how nice they may appear to be,
because “the strange ones look just like anyone else” (The Strange Ones,
1963). They are indistinguishable because, among other things, they are
also White and appear “normal.”
Boys face the additional possibility of harm from homosexuals who
hang out in public spaces, waiting for the opportunity to befriend them, a
perceived threat to heteronormativity that was of great public and political
concern during the period of our study (Adams, 1997; Kinsman, 1987).
The demonization of homosexuality in films such as Boys Beware (1961)
aimed to remove that threat to the sexual norm by instilling fear and avoid-
ance behaviours in young men. In that film Mike M. accepts a ride from
a friendly, non-threatening stranger. As the boy gets into the car, the nar-
rator tells viewers in a sombre voice, “He probably never realized until it
was too late that he was riding in the shadow of death. But sometime that
evening Mike M. traded his life for a newspaper headline.”6
While children are vulnerable and easily threatened, some of the films
tell us that they can also be threatening to others, and timely intervention is
needed to keep them on the conformist path. Again, young men are of par-
ticular concern. For instance, several docudramas in our sample focus on
White, working- and middle-class youths with bottled-up anger who seem
to be drifting inexorably into juvenile delinquency (Age 13, 1955; Angry
Boy, 1951; Boy with a Knife, 1956). As with the issue of “normal” sexual-
ity, these films echoed real-life concerns about the perceived threat to social
order posed by delinquent youth subcultures in the post-war decades (Hall
& Jefferson, 1976; Pfohl, 1994). Some of the boys depicted in these films
are in trouble at school and have already engaged in criminalized activities,
such as petty theft and vandalism. One carries a knife and has threatened
peers with it (Boy with a Knife), while another pulls a gun on his classmates
(Age 13), creating palpable fear that the unaddressed anger of such boys
could lead to serious violence.
A second group of films in our sample addressed the related theme of
mental, emotional, and physical fitness (hygiene) as the key to promoting
conformity and social integration in post-war Canada. Some of the docu-
mentaries emphasized the use of social initiatives for promoting healthy
citizens, and others focused, at a more micro, individual level, on the need
for emotional training of adults and especially of children, who represented
the future of Canadian society. Documentaries emphasizing external sup-
ports reflected both the post-war focus on building a better world and the
belief that deviant behaviour such as juvenile delinquency wasted youth
resources and needed to be prevented or reduced (Wastage of Human Re
sources, 1947). One way to accomplish that goal was, for example, to pro-
vide adequate public recreational facilities (A Chance to Play, 1950). Such
facilities would contribute indirectly to the prevention of delinquency by
helping to maintain the community’s moral and physical health and thus
“keep the American family together as a unit” (A Chance to Play, 1950).
The paternalistic and criminally mistaken view of residential schools as a
means of integrating “the oldest Canadians” (that is, Native children) into
mainstream Canadian society is also evident in a short broadcast by the
Canadian Broadcasting Corporation entitled A New Future (1955), one of
the few instances in which racialized youth appear in our sample. However,
although racialized people are few, race is central in our sample of films.
The message is clear: Whiteness is the gold standard with respect to nor-
mality, and though racialized people can never be White, they can be inte-
grated into society by emulating those who are.
A specific emphasis on mental hygiene was evident in five of the films in
this sample, in which the desire to help people with their emotional prob-
lems was a central theme. In these films medical experts and professionals
drew attention to the range of symptoms and behaviours that might lead
to a personality disorder or serious mental illness, and viewers were urged
to seek help if they displayed the problems mentioned. The films span the
period between 1951 and 1967, when the mental hygiene movement, or
campaigns in “the adjustment of individuals to themselves and the world
at large with the maximum of effectiveness, satisfaction, cheerfulness and
socially considerate behaviours, and the ability to face and accept life’s
realities” (Gleason, 1999a, p. 28), was fully underway. Problems with bore-
dom, jealousy, anxieties, high expectations, fear, disappointment, and lack
of self-confidence were highlighted in the films as emotional states that
could lead to illness and therefore needed attention.
Often the dramatization involved a case study of someone struggling
with these emotions and the impact these struggles had on their lives and
the people around them. For example, in the film Jealousy (1954) we see
a wife and husband arguing about whether or not he has been unfaithful
because he comes home late from work. She orders him out of the house.
Only after his work colleagues have verified his explanation does she realize
that she may have overreacted. Similarly, in Snap Out of It (1951) we are
shown a group of White, middle-class students in situations that cause
them to become emotionally upset. The film focuses on one male student in
particular and shows how he handles the disappointment of doing poorly
on his report card. Throughout the film the narrator points out that his
reactions are “infantile” and that personalities can be stunted if students
do not “keep their emotions in balance.”
In keeping with other research findings, the films also emphasize the
need for a collaborative effort to regulate normality. Jacoby (1954), writing
about the role of films in mental health education during the post-war pe-
riod, notes that preventing emotional illness was a priority for government,
but it was also understood that psychiatrists could not do it alone. Parents,
teachers, nurses, ministers, and others were recruited to help those with
emotional difficulties because building positive mental health was consid-
ered an important duty. To that end, these films depicted the mental health
problem as an individual attribute and laid responsibility on individuals to
overcome their emotional problems by seeking help from professionals or
medical experts. For example, in the film The Empty Life (1961) boredom
is seen as a “bleak, needless tragedy,” which individuals were expected to
manage unless it got out of hand, in which case it was their responsibility
to seek specialized treatment. As the narrator states, “it depends on him,
him alone. Unless he finds help soon, not just this day, but life itself has
ended for him” (The Empty Life, 1961).
Furthermore, consistent with this post-war period, there was a sharp,
stereotypical gender divide, in which jealousy and worry were more strongly
aligned with women, and boredom and high expectations were depicted
as primarily male problems. Gleason (1997) points out that emotional im-
maturity was seen as a threat to the health of Canadians in so far as it
threatened their ability to become and remain good, productive citizens.
Canadians therefore needed to be educated about the importance of main-
taining healthy personality development. Gleason’s research (1997) reveals
that psychologists saw emotional stability, personal fulfilment, and hap-
piness as interconnected, and the theme of emotional illness in the films
illustrates the desire to promote happy, healthy individuals and families.
The third and final group of films in our sample emphasized clinical
training for the treatment of mental illness and highlighted the merits of
institutionalization. Seven of the films provided a focused discussion on
various psychiatric procedures and practices. These films spanned almost
two decades, between 1940 and 1959, and offered information about iden-
tifying symptoms of schizophrenia and depression and evaluating criminal
responsibility. They also emphasized the role of physical treatments for

mental health problems and described how to administer therapies such as
psychosurgery and shock therapy. Throughout these films expert medical
professionals offered detailed information about symptoms, treatment
options, and prognosis, along with the advantages and disadvantages of
treatment approaches. The belief was that many health conditions were
the result of both physical and mental health problems, and therefore
both physical and psychological therapies were needed.
For example, in Ulcer at Work (1957) the doctor tells the White, middle-
aged, male patient that “ulcers breed the wrong kind of feelings” and that
“you have to work on your attitude.” Similarly, in Physical Treatment
(1957) the narrator points out that “emotional extremes” can sometimes
only be relieved by physical therapies. The emphasis on physical treatments
in many of these films, however, was an attempt to demonstrate not only
that scientific treatment by medical experts was necessary to manage the
problem, as claimed in the film Symptoms of Schizophrenia (1940), but also
that combining psychotherapeutic approaches with physical treatments was,
as the film Physical Treatment (1957) asserts, a necessary and effective ap-
proach for patients. Furthermore, in extreme cases where less invasive physi-
cal treatments would not be effective in managing mental distress, medical
experts in the film Psychosurgery and Shock Treatment (1959) argued that
psychosurgery was a potential option for patients. The only film that did
not focus on using physical intervention as an option for patients was Faces
of Depression (1958), where depression was medicalized, but treatment fo-
cused on psychological therapies.
All these films take a highly medicalized approach, as evidenced in the
use of technical language and medical settings, such as doctors’ offices and
operating rooms, to dramatize the discussion. The dichotomy of “normal”
and “abnormal” was a commonly used frame of reference in the films’ dia-
logues, in which, for example, hopelessness, being catatonic, compulsive
behaviour, hysteria, and manic excitement were deemed pathological. At
the same time, images of patients exhibiting mental illnesses – such as the
scene from Recent Modifications of Convulsive Shock Therapy (1941) in
which a young, White woman is pacing in a small room, throwing paper
around, and laughing while alone – illustrated the medical condition being
discussed. Several of the films also provided diagrams and images of the
disease (Ulcer at Work, 1957) or demonstrated how to prepare patients for
treatment (Mentally Ill: Psychosurgery and Shock Treatment, 1959) and
then administer treatments such as injections or electroconvulsive therapy
(Recent Modifications of Convulsive Shock Therapy, 1941).
The visual images are an effective tool for education and also lend legiti-
macy and credibility to the practices and procedures by presenting them as
a science, complete with scenes of medical textbooks and explicit images
of surgery in progress. Meertens (2001) notes that psychiatry and psychol-
ogy were seeking to extend their influence into the public sphere during the
post-war period through an ongoing process of professionalization. While
it is not always clear who the intended audiences of these films were be-
cause, arguably, they could have been used to train medical professionals
as well as to highlight approaches to managing mental health issues for the
general public, the films focused on problems and treatment for “serious”
mental illnesses and offered the starkest example of a didactic approach.
More than in the other films in this sample, the contrast between doctors
as experts in white coats, and patients as passive recipients of treatment,
was a common image throughout these films.
In three of the films the theme of institutionalization was presented as
an important option to help treat people with mental health problems. The
emphasis on providing a caring and supportive environment for patients
to heal was evident, although what constitutes a supportive institutional
environment varies. Mental Hospital (1953) showcased a “modern mental
institution, a city in itself, complete with every facility for effective treat-
ment,” that adults with mental health illnesses could utilize to seek the
help they needed. Scenes demonstrating the process of being admitted,
evaluation of the patient’s condition, and treatments available were used to
demystify the institution. Images show adults with a variety of deteriorat-
ing mental health conditions being admitted to the hospital and then being
seen as happy and well as a result of their stay there. Institutionalization
is very positively portrayed in this film, with the narrator pointing out the
“favourable environment and human comforts” of the institution, along
with the “atmosphere of security and calm” that allows patients “to live qui-
etly during their period of reorientation in which they learn how to achieve
a better adjustment to the world outside.”
In contrast to Mental Hospital (1953), the films Jean Vanier Opens First
L’Arche House (1965) and Warrendale (1967) highlight the merits of a de-
centralized, community-based, non-hospital setting. In particular, L’Arche
houses separated people with mental disabilities from the mentally ill, and
they were at the forefront of providing community-based treatment facili-
ties. Both films depict care facilities that attempt to provide “a family atmo-
sphere,” particularly for children and youth with mental health problems or
mental disabilities, where doctors work alongside psychologists and social
workers. In one film segment Jean Vanier points out that “youngsters are
vegetating in institutions” and that L’Arche houses are superior for provid-
ing housing and employment for young adults who have been released from
institutions (Jean Vanier Opens First L’Arche House, 1965). Both films also
put forward the view that individuals need to be able to express themselves
freely in a safe environment in order to thrive. Phelan, Link, Stueve, and
Pescosolido (2000) note that public attitudes in the 1950s were “suffused
with negative stereotypes, fear and rejection” of people with mental ill-
nesses (p. 189). They argue that these attitudes about people with mental
illnesses also extended to the professionals who treated them (Phelan et.
al., 2000). The film Warrendale (1967), in particular, may have been an
attempt not only to demonstrate that community-based care facilities are
a legitimate, necessary, and humane option to help “sick” people become
“well” again, but also to counter the negative attitudes about people with
mental and emotional illnesses.
Authority, Diagnosis, Causes, and Symptoms
As our quantitative analysis revealed, the voices of authority, or those

who could make authoritative diagnoses of mental health or illness, were
all White, middle-class experts and professionals. In the project films they
included psychiatrists, psychologists, classroom teachers and principals,
nurses and family physicians, social workers, and community workers.
However, the post-war discourse on collaboration and cooperation among
the various authorities who dealt with adults and children exhibiting men-
tal distress or deviant behaviour had a democratic ring that was belied
by the gendered, hierarchical ordering of the various professions. Within
the “psy-” complex, the White, middle-class men in the “psy-” profes-
sions were clearly ensconced at the top of the “hierarchy of credibility”
(Becker, 1967, p. 241).7 For instance, in Faces of Depression (1958), a film
aimed primarily at helping general physicians to recognize how depres-
sion underlies many physical complaints, a psychiatrist dressed in a suit
and tie and sitting behind a desk speaks directly and authoritatively to
the “lesser” professionals about the causes and symptoms of this particu-
lar mental disorder. Likewise, the films show how the growing influence
of medical, scientific approaches to deviance shifted the role of law en-
forcement professionals from one that emphasized the punishment and
deterrence of “criminal” youth to one that promoted education and pre-
vention. Police went into classrooms to educate children and youth about
stranger danger (for example, Boys Beware, 1961) and increasingly acted
as gatekeepers, referring youth who seemed to be pre-delinquent or in
mental distress to the non-legal professionals working in the expanding

post-war system of juvenile and family courts and youth guidance clinics
(Chunn, 1992; Gleason, 1997; Low, 2003).
All of the professionals and experts shared a consensus that their mandate
was to help foster good, nuclear, middle-class families in order to “normal-
ize the ideal” (Gleason, 1997) of the traditional nuclear unit, which was seen
as the key to social integration and stability (Adams, 1997). As we stated
earlier, the normal family was premised on a heterosexual marital relation-
ship and a sexual or gendered division of labour. Husbands and fathers pro-
tected and provided economically for their dependent wives and children,
while wives and mothers carried out the unpaid work of social reproduc-
tion – “wifework,” “motherwork,” and “housework” (Luxton, Rosenberg,
& Arat-Koc, 1990, p. 13) – including the socialization of children into nor-
mative masculinity and femininity. For their part, children were expected to
assume the role of dependents. This included not acting like adults by en-
gaging in under-age drinking, sex, or paid employment, as well as refraining
from using bad language or viewing or attending obscene entertainments
(Adams, 1997).
The idealized nuclear family organized around separate spheres had been
viewed as the norm in Canada since the nineteenth century, with periodic
eruptions of concern that it was under threat (Chunn, 1992). Thus, the
1940s “crisis of the family” marked yet another period of anxiety in the
wake of a world war that had seen many family breadwinners killed or
physically and mentally incapacitated, large numbers of wives and mothers
working outside the home, and children receiving inadequate socialization
and supervision. Like their earlier counterparts, the post–Second World
War politicians, policymakers, professionals, and experts, among others,
all concurred that the nuclear family ideal had to be shored up even when
the nuclear unit in question was broken or dysfunctional (Adams, 1997;
Gleason, 1997).
These assumptions underpin the diagnoses and explanations of deviant
behaviour that were offered by the authoritative sources in the educational
films analysed. For example, the professionals and experts in the docu-
mentaries clearly took for granted the normative expectations that virtu-
ally everyone in society can marry and wants to marry and that everyone is
or could be heterosexual. At first glance, It Takes All Kinds (1950) seems to
promote respect for diversity in the selection of a mate, emphasizing that
most people can find a suitable partner if they set emotion aside and accept
the other person as he or she really is. As the narrator tells viewers, “when
you marry, you must live with a person, not a dream.” However, there is
no acknowledgment in the film that one might choose not to marry or

could be happier without marriage. To the contrary, the film implies that if
individuals are willing to accept less than “perfection” in a mate, they can
have “a relatively happy life,” a stance that perhaps reflected the prevailing
anxiety about the need to stem the high rate of family break-down during
and after the Second World War. Similarly, films about “pedophiles” and
“homosexuals” increasingly portrayed them as mentally ill and potentially
treatable, but never questioned the underlying assumption that hetero-
sexuality was the only normal sexual orientation (for example, Dangerous
Stranger, 1950; The Strange Ones, 1963).
As previously noted, although a poor social environment with deviant
peers, lack of recreational resources, and exposure to unregulated media
(with, for example, obscene language and entertainments) was presented as
an important cause of deviant behaviour in our sample of films, over time
these sociological explanations were less dominant than individual-deficit
explanations. Moreover, the focus on healthy families led to an emphasis
on individual personality disorders that were the result of unrealistic expec-
tations (Snap Out of It, 1951), boredom (The Empty Life, 1961), and the
stress and inner conflict (Ulcer at Work, 1957) generated by dysfunctional or
broken nuclear families.
In many of the films that we analysed, defective families in which par-
ents and step-parents failed to fulfil their sex- or gender-specific roles were
viewed as the major source of deviant behaviour. The film Age 13 (1955),
for instance, begins with the narrator informing viewers that thirteen-year-
old Andrew is grief-stricken by the death of his biological mother. He hates
her for dying and leaving him in the care of his emotionally distant stepfa-
ther. The latter is not a cruel man, but, having no biological children of his
own, he “just didn’t understand” what Andrew was feeling, and cared more
for his cat than his stepson. He also meets another woman who moves in
with him, leaving Andrew even more neglected and alone. As a result of his
“pathological” family situation, Andrew starts down the path of escalating,
deviant behaviour – stealing from his stepfather and at school, skipping
school, threatening other students with his stepfather’s gun, and experi-
encing homicidal feelings towards his stepfather. Eventually, after he runs
away and comes to the attention of juvenile authorities, his school counsel-
lor secures a referral to a woman psychologist who begins to help him work
through his emotional devastation and reconstruct his personality.
Another “defective family” scenario in our project films is the spousal-
or parental-role reversal in which the wife or mother is depicted as over-
bearing and the husband or father as henpecked. In Boy with a Knife (1956)
viewers observe an unhappy home in which a domineering stepmother

openly differentiates between her “good” biological son, and Jerry, her in-
creasingly “deviant” stepson. Jerry’s father does not challenge her when
she makes disparaging comparisons such as, “He’s your son, not mine …
Our son turned out all right,” which suggests that he puts his wife ahead of
his own son. Receiving no appropriate socialization at home, Jerry starts to
carry a switch-blade knife and hang out with other boys from problematic
homes, “rowdy kids” for whom “destruction and violence [is] their only
outlet.” Whereas the boy in Age 13 was presumably saved from a delin-
quent future through individual talk therapy with a “psy-” professional,
the boy with a knife is rescued by a group social worker who observes his
“dangerous seething hostility” and sets out to counteract it by moving the
boy and his troubled peers towards appealing, conformity-building activi-
ties in their own clubhouse. When Jerry’s stepmother announces that she
wants him out of the club, his father finally stands up for him, stating
firmly, “From now on everyone in my family is heard.” The apparent nor-
malization of his family is marked symbolically when Jerry gives up his
knife to Bud, the group worker and narrator who tells viewers that now
“you knew that there was hope in the future.”
We also noted the gendered and racialized aspects of diagnoses and ex-
planations of mental distress presented in our film sample. The pervasive
portrayal of dysfunctional family relationships as a major cause of deviant
behaviour is not even-handed. Perhaps because they are seen as primary
socializers of their children, mothers are more frequently represented as
key contributors to the mental distress of their children than are fathers,
and their poor relationships with their children are often depicted as a
reflection of the way their own mothers brought them up (see Angry Boy,
1951). Moreover, the henpecked husband and father is considered arguably
less blameworthy than the domineering, controlling mother or stepmother
when children, especially boys, begin to exhibit deviant tendencies.
The depiction of a mother or stepmother as the most powerful family
member and as a source of potential dysfunction tells us a lot about the
film-makers’ “preferred” meanings (Hall, 1993). Although our data do not
support generalized claims, we can say that the producers of the films in our
sample did not challenge the prevailing assumptions that normal families
operate on the basis of consensus, with no fundamental conflicts among
members; that as long as members play their assigned gender and age-
related roles, the family will be healthy; and that the main task for parents
is to be on the alert for any signs that their children are deviating from
the norm (Chunn, 1992; Gleason, 1999a). What is absent in these films
is any consideration of power differentials. Far from being all-powerful, in

real life even White, middle-class homemakers were in a tenuous position
because of their assigned role as the economic dependents of their hus-
bands. The ideology of separate spheres generated clear gender and class
differentials between wives and husbands. Women were relegated to the
unpaid work of social reproduction by virtue of their gender, and they were
dependent on their husbands for a middle-class existence.
Gender and race can also intersect to disqualify the motherhood skills
of entire groups. Our sample contains only one short television segment
that speaks to this issue (A New Future, 1955); it was produced by the CBC,
Canada’s national public broadcaster, and focuses on the benefits of resi-
dential schools. The segment implies that Native Canadians per se either
cannot or will not provide a healthy nuclear-family environment for the so-
cialization of their children and that therefore the state must do it for them.
This tells us a great deal about the colonial project and dominant con-
ceptions of inclusion and exclusion at the time. Normality, equated with
homogeneity and adherence to the normalized ideal, was to be achieved
through either educational or overtly coercive techniques of normalization.
Heterogeneity, the greatest threat to social order and the status quo, was
to be actively discouraged (Brock, 2003).
Consequences and Solutions
In the same way that lack of attention to physical well-being can result in
the deterioration of one’s overall health, the films in our project made it
clear that the consequences of not addressing or of mismanaging mental
health problems would be equally dire. In order to educate the public about
taking responsibility for their mental health, the films highlighted the re-
percussions of ignoring these problems. Since they were largely directed at
White, heterosexual, middle-class individuals, the films virtually ignored
the mental health issues among, for example, racialized or gay and lesbian
communities. We surmise that the promotion of good mental health during
the period of the making of our films was quite uneven. Although it is not
directly evident in the films, the scholarly literature on mental health dur-
ing this period suggests that it was likely that White working- and middle-
class communities received positive attention from authorities in the form
of education, whereas other communities (racialized, sexualized) received
negative attention, such as institutionalization and forced treatment.
The project films document how a variety of individual and social prob-
lems such as juvenile delinquency and mental or physical illnesses would
result if individuals did not seek help or treatment for their mental distress.
Given the influence of the mental hygiene movement during this period,
fears of people becoming more abnormal were prevalent. For example,
not seeking medical attention could result in the continued deterioration
of symptoms or of one’s overall mental health (Mental Hospital, 1953;
Symptoms in Schizophrenia, 1940). It could also lead to continued suffer-
ing, resulting in the desire to harm oneself or others (Faces of Depression,
1958; Physical Treatment, 1957), and it could end in a “life spent in futil-
ity and frustration” (The Empty Life, 1961). Conflict and the break-down
of relationships at home and at work were cited numerous times as po-
tential hazards, with unhappiness overwhelming the individual (It Takes
All Kinds, 1950; Jealousy, 1954). In extreme cases death could result. For
example, in the film Ulcer at Work (1957) the viewer is shown how Steve’s
colleague does not address the emotional causes of his ulcer, and conse-
quently he dies. According to Besley (2002), such excesses, exaggerations,
and distortions were not uncommon in mental health films, because they
could be considered “forms of social engineering, preventative medicine
and cultural indoctrination rolled into one” (p. 427).
As we noted earlier, youth in particular were key targets of mental
health education because prevention was portrayed as an important strat-
egy for sorting out “difficult” young people without relying on overt co-
ercion. Fear of social chaos in the form of juvenile delinquency, crime,
and violence was highlighted in the films as a reason for intervening or
“saving” youth from slipping further in a “negative direction” (Boy with a
Knife, 1956). Avoiding dangerous situations was also part of the preven-
tion program, and young boys were strongly advised in many of the films
to avoid strangers and homosexuals; otherwise they might find themselves
kidnapped or disappeared if they did not obey the rules and conform (The
Dangerous Stranger,” 1950). Films such as Age 13, Angry Boy, and Boy
with a Knife also demonstrated the obsession with ensuring that young
men adhered to the Anglo, middle-class family values espoused by those
same films, which claimed that young men were prone to alienation and
deviancy if they were not adequately socialized. For mental hygiene profes-
sionals, stabilizing youth during their adolescence was a priority because
they were the “rising generation” (Comacchio, 2002), and a whole range of
professionals and lay people were expected by the state to assume a central
role in supervising and preventing the emergence of illnesses or “defects”
in youth. Moreover, as our analysis highlights, priority was clearly given
to the well-being of boys, with no specific reference to girls. Although girls
were visually present in some of the films, they were seldom the focus of
the film, and thus they were largely invisible in the presentation of mental
health concerns around youth.
The films also mentioned broader social repercussions, and they rein-
forced the message that the harms resulting from mental distress had com-
munity impacts as well. In the film A Chance to Play (1950) a direct link is
made between access to recreational facilities and the prevention of social
illnesses or pathologies. We are told that “though recreation alone will not
prevent delinquency, it does help to maintain the moral and physical health
of the community” (A Chance to Play, 1950). Furthermore, institutional-
ization was a legitimate option for preventing social disorder if individuals
were unable to manage their mental illness (Age 13, 1955), if they became
a danger to the community (Physical Treatment, 1957), or if they became
too difficult to manage (Warrendale, 1967) and could not “function in so-
ciety” (Psychosurgery and Shock Treatment, 1959). In Wastage of Human
Resources (1947) the social implications of not addressing emotional and
mental health issues are clearly articulated: confining people in institutions
is antithetical to a healthy, vibrant society. The narrator notes that “these
people lost their lives, and the world lost their skill, their artistry and their
services” (Wastage of Human Resources, 1947). In their highlighting of
the consequences of not treating mental health problems we can clearly
see that the preoccupation with guarding the overall well-being of citizens
(largely understood as White and middle class) was a central factor behind
the production of these films. The efforts to guide people towards making
“good” choices for their mental health was as much about education as it
was a means to transmit messages about socially acceptable cultural values.
During the period of our study, people with mental health problems were
not socially accepted, and this may have prevented many from seeking the
necessary treatments they needed. As Trute and Loewen (1978) acknowl-
edge, despite a variety of educational efforts, the public’s attitude about
“the mentally ill” remained (and still remains) one of “denial, isolation and
insulation of mental illness” (p. 80). At the same time, the expansion of psy-
chiatry and psychology also meant that there were now many more medical
professionals seeking to help alleviate mental distress, but such help could
only be used if individuals understood the necessity of seeking treatment
and support. To that end, the educational films helped to justify the pres-
ence of the “psy-” professions by manufacturing patients who needed their
help. Depending on one’s condition, the films in our study offered a variety
of solutions or treatment options. However, all these options were set in
a context of rigid beliefs about what was normal or abnormal. Thus, the
proposed solutions emphasized the language of normality along with the
benefits that would emerge from obtaining the appropriate treatment to

return to what was a narrowly defined conception of a healthy life.
With regard to solutions, the films provided both individual and social
recommendations. Individual solutions included having a positive attitude,
following the doctor’s advice, not bottling up problems or emotions, and
obtaining the necessary medical procedures. The advice was dispensed in a
didactic fashion, typically with a narrator or an authority figure instruct-
ing a patient or a concerned party. For example, in Attitudes and Health
(1949) the doctor tells a boy that his sister would feel much better if she
were “to get the facts, make a plan in relation to the facts, and carry out
the plan.” This advice is repeated three times throughout the short film to
reinforce the message about how to adopt a healthier attitude.
Many of the proposed social solutions in the films centred around en-
suring that resources and treatment facilities were in place to provide care
and attention (A New Future, 1955; Jean Vanier Opens First L’Arche House,
1965; Warrendale, 1967) or that a positive social environment was being
fostered (Mental Hospital, 1953). Recognition of the role of the environ-
ment in mental illness during the early 1950s was evident in several films
that offered both individual and social solutions to mental health recovery.
In It Takes All Kinds (1950) the audience is told to “be realistic, know
yourself and the other person, and accept them for who they are,” and the
narrator also notes that “personality is fashioned in part by the environ-
ment in which you develop.” Gold (1988) observes that this was a period
of optimism and innovation in the mental health field, resulting in numer-
ous social welfare initiatives and legislation. The film A Chance to Play
(1950) is the best exemplar in our sample of this approach. Yet, while a
supportive social environment was important, many of the films indicated
that taking individual responsibility for good mental health was vital, and,
overall, individual solutions were more prevalent than social solutions in
our sample – an indication that, increasingly, problems of mental distress
were being individualized.
Representations of Madness: Continuity and Change
We view our exploratory study as a modest contribution to knowledge

and as providing a jumping-off point for future researchers with an inter-
est in media portrayals of madness. The findings tell us something about
the intended audiences of these educational films and about the preferred
meanings and messages of the film-makers, but nothing about the ways
in which post–Second World War audiences reacted to them. However,
following Stuart Hall (1993), we are probably safe in assuming that the im-
pact was heterogeneous, that most viewers at the time did not contest the
common-sense assumptions about madness that underpinned the films,
and that only a few may have countered the preferred meanings of the
film-makers with other non-critical perspectives or have openly challenged
the mainstream depictions of mental illness. Still, there is a larger ques-
tion of whether historical analyses of media representations of madness
have any relevance in the contemporary world. We want to suggest that
they do, primarily because current representations of madness in public
culture and the educational media are continuous with, as well as different
from, those in the films we have analysed in this chapter. If nothing else,
examining historical continuities is a reminder that current perspectives on
and responses to madness may not be as progressive or advanced as their
adherents often maintain.
The continuities between then and now include, first, the dominance of
“psy-” perspectives that are based on fixed notions of conformity and de-
viance, and the unquestioned assumption that “psy-” experts and related
professionals can do what they claim to be able to do – apply science to the
diagnosis, treatment, and prevention of a wide range of human emotions
and behaviours. The positivist assumption that humans can be studied ob-
jectively in the same way as the natural and physical worlds has been vig-
orously contested. Critiques of positivism by feminists and other critical
scholars emphasize that humans are not objects, and to treat them as such
is to transform social relations of gender, race, class, and sexual orientation
into free-floating variables devoid of any historical and cultural context.
A second continuity is the media emphasis on the provision of health and
mental health education and on encouragement for people to be proactive
about their health, to engage in self-diagnosis for a lengthy list of disorders
or syndromes, and to seek advice and treatment from experts if they exhib-
it symptoms. In contemporary Canadian society the neoliberal discourses
of risk and choice are more dominant than the voices of paternalism that
characterized the welfare state, but the idea remains strong that individu-
als can be educated, or educate themselves, to become good citizens who
do not question the status quo (Rose, 1998). Third, in both the post-war
era and today we see a media focus on children and an emphasis on the
need to produce future conforming citizens by ensuring that children are
protected from harm rather than allowed to become perpetrators of harm
to others. Finally, despite the emergence of feminist and other critical ap-
proaches to madness since the 1970s, the most authoritative “psy-” voices
remain more or less the same today as they were in the post–Second World
War era. Although psychologists may have supplanted psychiatrists in

many areas of the “psy-” complex, White, middle-class men still sit at the
apex of the “hierarchy of credibility” (Becker, 1967, p. 241) both in life and
in the mainstream media.
Nonetheless, we are not arguing that the dominant media constructions
and representations of madness during the post-war period were identi-
cal to contemporary conceptions and representations. One of the biggest
differences between then and now is the transformation of the broader
context in which madness is defined and represented. During the period of
our study (1940–69) we see an expanding welfare state and a growing con-
sensus that social supports such as health care and education were needed
to help level the playing field for historically disadvantaged or margin-
alized individuals and groups (Guest, 1997; Struthers, 1994). “Psy-” ap-
proaches to madness based on the medical model were dominant, but they
were also softened by an acknowledgment of the state’s role in producing
healthy citizens.
In contrast, we now see the impact of an ongoing assault on the welfare
state that began in the 1970s: namely, the consolidation of a neoliberal
state and the suppression of “the social” that was encapsulated in Margaret
Thatcher’s oft-quoted assertion that “there’s no such thing as society” (as
cited in Harvey, 2005, p. 25). “Psy-” approaches to madness still dominate,
but they are hardened by the replacement of the social with ideas drawn
from biogenetic perspectives on madness that have facilitated the resurrec-
tion of eugenics in another guise. The past four decades have witnessed
an unparalleled increase in the number of identified mental illnesses and
personality disorders, as well as, unsurprisingly, the number of people who
receive a “psy-” diagnosis, a phenomenon that can be likened to the syn-
dromization of everyday life (Whitaker, 2002, 2010). Physical interventions
in the human brain and neurological system, and the revival of electrocon-
vulsive therapy, coexist with new gene and drug “therapies” created by the
ever-expanding pharmaceutical industry (Fabris, 2011; Healy, 2012).
While these developments point to the hegemony and impenetrability of
the “psy-” complex, they are also, arguably, creating greater opportunities
and spaces than ever before to challenge the status quo. Canadian universi-
ties are beginning to establish departments and centres for Mad studies and
critical disability studies. A growing body of research is documenting the
unscientific underpinnings of the DSM and the need for intersectional anal-
yses of madness (Cermele, Daniels, & Anderson, 2001). Psychiatric survi-
vors and advocates are organizing Mad Pride movements to work for social
justice (LeFrançois, Menzies, & Reaume, 2013). And like their predecessors
during the 1960s and early 1970s, some “psy-” professionals who are con-
cerned about the dramatic expansion of the “psy-” complex are increasingly
contesting the status quo (Burman, Aitken, & Alldred, 1996; Healy, 2012).
Notably, the use of media to present alternate views of madness is becom-
ing a key focus for mounting challenges to the “psy-” complex. Advocates
are developing websites and blogs,8 producing documentary films (Selling
Sickness [Fiske & Scott, 2004]; The Inmates are Running the Asylum: Stories
from the MPA, 2013), and placing greater emphasis on representing the di-
versity among psychiatrized people, as well as the commonalities. Overall,
then, our film project suggests that, by illuminating continuities as well as
differences between past and present, historical studies can make useful
contributions to the contemporary struggles to deconstruct the common-
sense images of Mad people in mainstream media, especially visual media.
Likewise, our project findings point to the value of intersectional analyses
in illuminating who matters and who does not matter in the “psy-” complex
and, more generally, in the “matrix of domination.”
Appendix 12.1: List of Documentary Films
Symptoms in Schizophrenia (1940)

Recent Modifications of Convulsive Shock Therapy (1941)
Wastage of Human Resources (1947)
Attitudes and Health (1949)
A Chance to Play (1950)
Dangerous Stranger (1950)
It Takes All Kinds (1950)
Angry Boy (1951)
Snap Out of It (1951)
Mental Health (Keeping Mentally Fit) (1952)
Mental Hospital (1953)
Jealousy (1954)
Age 13 (1955)
A New Future (1955)
Boy with a Knife (1956)
Physical Treatment (1957)
Say No to Strangers (1957)
Ulcer at Work (1957)
Faces of Depression (1958)
Mentally Ill: Psychosurgery and Shock Treatment (1959)
Boys Beware (1961)
The Empty Life (1961)

Evaluating Criminal Responsibility (1962)
The Strange Ones (1963)
Jean Vanier Opens First L’Arche House (1965)
Warrendale (1967)
Censored (1968)
Homosexuality an “Illness” (1969)
NOTES
1 With respect to terminology, we use the terms mental health, mental illness,
and mentally ill when they are used in the films that we have analysed or
by authors who are quoted. Otherwise we use alternative terms, including
madness, persons in mental distress, psychiatrized persons, and psychiatric
survivors.
2 The DSM is compiled and disseminated by the American Psychiatric
Association. It is “the standard classification of mental disorders used by
mental health professionals in the United States” (retrieved from the APA
website on 22 October 2013). The fifth edition of the DSM was released at
the annual meeting of the APA in May 2013. It should be noted that the DSM
is not founded on professional consensus. DSM-5 generated internal as well
as external critique both before and after its release.
3 Our search terms were addiction, homosexuality, illicit drugs, madness, medicine
and health, mental hygiene, mental illness, psychiatry/psychology, sex education,
sexually transmitted diseases, social issues, and substance abuse. We did not use
truncated versions of these words.
4 See appendix 12.1 for a chronological list of the films in our sample.
5 There were only a small number of inconsistencies in the coding process.
They were resolved by one of the principal researchers who had coded the
film, by reviewing the film again to determine where the points of difference
arose and making a final decision about coding.
6 The sexuality of girls was also of concern because of their future role as
mothers. For example, Girls Beware (1961), a film that is not in our sample,
focused on the tragic consequences, including rape, “social diseases,”
pregnancy, and murder, that could befall girls if they went out with boys
who were too old for them or if they got into cars with boys or men whom
they did not know.
7 Howard Becker (1967, pp. 241–2) argued that “in any system of ranked
groups, participants take it as given that members of the highest group have
the right to define the way things really are … By refusing to accept the
hierarchy of credibility, we express disrespect for the entire established order.”
8 See, for example, the History of Madness website, http://www.history
ofmadness.ca.
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PART FIVE
Refashioning Research
for Social Justice Praxis
13 Ethics, Research, and Advocacy:
The Experiences of the NAOMI
Patients Association in Vancouver’s
Downtown Eastside
s u s a n b oy d , d av e m u r r ay ,
a n d n a o m i pat i e n t s a s s o c i at i o n
Introduction
CAUTION
This may have the ability to attain?
The path to freedom is there, if one chooses.
The tools were not given readily and the road isn’t clear.
Please give us a compass, a clear day,
and a home.
NAOMI, she was a gift of freedom, a taste,
but she didn’t give me her number!!!
(S., cis male NPA member)
The above poem was written by a former participant in the North Ameri
can Opiate Medication Initiative (NAOMI), the first clinical trial of heroin-
assisted treatment in the Downtown Eastside of Vancouver, British
Columbia, Canada. The participant later became a member of the NAOMI
Patients Association (NPA). The poem expresses the freedom that the par-
ticipant experienced while part of the clinical trial. It also points to his
dismay when the clinical trial ended and a permanent heroin-assisted treat-
ment program had not been established.
The NPA, located in Vancouver’s Downtown Eastside neighbour-
hood, is an independent group that formed almost three years after the
NAOMI heroin-assisted treatment trial had ended. When patients exited
the NAOMI trial, they were denied the medicine that had proved effec-
tive for them. The NPA began organizing former trial participants to
support one another and to advocate for continued treatment. However,
366 Susan Boyd, Dave Murray, and NAOMI Patients Association
the association’s purpose quickly expanded to include original research

and more. In this chapter we highlight the ways in which the NPA in the
Downtown Eastside is part of a larger social movement that is pushing
the boundaries of academic and mainstream understandings of drug
use, treatment, and policy directions. We draw on the brainstorming ses-
sions and writing workshops conducted by the NPA in the fall of 2011.
In the first section of the chapter is a brief discussion about the social
justice movement to change drug policy. The next section discusses the
Downtown Eastside and ethical considerations. We then turn to the four
areas of work by the NPA, including details of the group’s formation and
their research results, advocacy, and recommendations for better drug-
trial ethics, using the example of the group’s efforts to improve conditions
within a new trial, SALOME. The chapter concludes with a discussion
of ongoing advocacy efforts by the NPA, which changed its name to
SALOME/NAOMI Association of Patients (SNAP) in 2013, as it strives
towards social justice for its members and others who may be negatively
affected by drug research, treatment, and policy.
Drug Prohibition and Its Failure
The emergence of a group like the NPA springs from a long history of the
unjust treatment of those in Canada who use criminalized drugs. More than
a century ago, in 1908, Canada passed the Opium Act with little parlia-
mentary debate. A number of scholars argue that Canada’s first narcotic
legislation was shaped by race, class, and gender fears rather than pharma-
cological evidence of harm, in order to support the regulation of opium
(N. Boyd, 1984; S. Boyd, 2015; Comack, 1986; Giffen, Endicott, & Lambert,
1991). Within a few years, law-abiding individuals who had used these sub-
stances legally became criminals. Meanwhile, doctors were stripped of their
right to prescribe narcotics for drug maintenance purposes to anyone who
was addicted. Over time, the Royal Canadian Mounted Police (RCMP) be-
came both enforcers of Canada’s new drug laws and primary knowledge
producers about criminalized drugs and the people who used them. Thus,
law enforcement played a significant role in shaping drug policy in Canada
(Carstairs, 2005; Giffen et al., 1991; Nolan & Kenny, 2003). Harsh prison
sanctions, rather than treatment, became the norm, and those labelled crim-
inal addicts in Canada faced cold turkey in a prison cell. From 1928 to the
early 1970s the RCMP’s division of narcotic control maintained case files
for known “Addicts.” These files contained detailed information, including
police and court records and correspondence with doctors (Carstairs, 2005;
Ethics, Research, and Advocacy 367
Giffen et al., 1991). Later, psychiatric knowledge also became instrumental

in supporting the status quo of a punitive system. Rather than challenge the
Division of Narcotic Control and the RCMP, psychiatry represented crimi-
nal addicts as doubly deviant – criminal and pathological – and as best treat-
ed in secure prison units (Stevenson, Lingley, Trasov, & Stansfield, 1956).
However, as the medical knowledge of drug addiction grew, methadone
maintenance programs were eventually established in some urban areas of
Canada in the late 1950s and the 1960s. Still, since their inception, these
maintenance programs have been compromised by rigid rules, shifts in pol-
icy, and ideologies that continue to represent patients as deviant. Although
methadone is beneficial for some long-time opioid users, it clearly does not
work for everyone, and retention is poor (Carter & MacPherson, 2013;
Luce & Strike, 2011; Reist, 2011). Thus, heroin-assisted treatment contin-
ues to be advocated for some chronic opioid users (Strang, Groshkova, &
Metrebian, 2012) as a more ethical and just option.
For this reason, heroin-assisted treatment (HAT) became an area of
greater interest among researchers seeking better ways to treat some chron-
ic opioid users (Strang et al., 2012). The benefits of HAT are backed by a
plethora of international studies demonstrating that it is safe and effective
for these users (Strang et al., 2012). In Vancouver advocates felt that con-
ventional treatments, such as methadone maintenance, and abstinence from
drug use should not be the only treatments available to improve health. The
NAOMI HAT clinical trial (2005–8) sought to test whether HAT was an
effective treatment for some patients in Canada. In January 2011, partici-
pants who had taken part in the trial decided to form the NPA to support
one another directly and also to advocate for a permanent HAT program.
At the very least, they demanded that HAT trials should transition into
permanent programs, as they have done in every other country, rather than
abandon patients at the end of the trial without support. Their efforts
marked a new point in Canada’s drug policy history: the NPA transformed
former HAT patients and research subjects into knowledge producers and
social justice advocates.
Social Justice Movement for More Ethical Drug Policies
In order to understand the many strands of the NPA’s work for ethical pol-
icy, it is vital to understand the global social justice movement to change
prohibitionist drug policy and its reliance on criminal law. In Canada the
first contemporary challenges to prohibitionist drug policy emerged in the
1950s in Vancouver, BC, in relation to heroin addiction, and in the 1960s
and 1970s nationally in relation to cannabis use (Martel, 2006). However,

it was not until 1981, with the establishment of the first drug users union,
Junkiebond, in Rotterdam, the Netherlands, that heroin users formal-
ly came together to advocate for more ethical drug policy. Junkiebond
sought change at both the local and the national levels by demonstrat-
ing against coercive treatment and establishing the first needle exchange
in the Netherlands in 1984 (Friedman et al., 2007). Later, similar peer-
based, drug-user organizations that demanded ethical services, treatments,
and an end to drug prohibition were established in the United Kingdom,
Australia, Europe, Canada, and other nations.
In Canada one neighbourhood in particular became the site of many
forms of contestation of the drug prohibition’s punitive framework: Down
town Eastside in Vancouver, a diverse community and Canada’s poorest
urban neighbourhood. It has a visible street scene, and homes there, for
many people, consist of single-room-occupancy establishments. The street
scene is directly related to gentrification and cutbacks at the federal, provin-
cial, and local levels, which have led to poverty and a lack of social housing
and private space (Culhane, 2011; Pedersen & Swanson, 2010). For women,
the neighbourhood is the site of much violence, often linked to everyday
life but also to the sex trade; poor and Indigenous women are most af-
fected (Bennett, Eby, Govender, & Pacey, 2012; Bungay, Johnson, Varcoe,
& Boyd, 2010). Negative outcomes of drug prohibition – police profiling
and the criminalization of heroin, cocaine, and other drugs – are played out
on the streets daily, rather than behind closed doors. Thus, owing to their
visibility, the poor and marginalized people in the Downtown Eastside are
more vulnerable to arrest, imprisonment, and occasionally drug-related vi-
olence (S. Boyd, 2015; Carter & MacPherson, 2013; Oscapella & Canadian
Drug Policy Coalition Policy Working Group, 2012) – an unethical and
harmful outcome.
However, it would be a mistake to only describe the neighbourhood in
negative terms. It has also long been the home to many families, friends,
and cultural institutions and the site of a number of resistance movements
highlighting issues such as gentrification and the lack of affordable hous-
ing, violence against women, drug policy, and police brutality (Bennett
et al., 2012; Boyd, MacPherson, & Osborn, 2009; Howard et al., 2002;
Pedersen & Swanson, 2010; VANDU, 2013). Activists in the Downtown
Eastside continue to strive for improvement of the conditions of people
living in the area and to advocate for structural change. The neighbour-
hood also has a thriving artistic community that hosts plays, poetry read-
ings, storytelling, art shows, films, music events, and annual cultural events.
In the mid-1990s activists came together in the Downtown Eastside to

form a social justice movement for change in drug policy (Boyd et al., 2009).
They demanded an end to punitive drug prohibition and campaigned for
the provision of social and health supports, including more harm-reduction
services, such as a safer injection site and heroin-assisted treatment. They
sought recognition and action to stem the public health emergency in the
neighbourhood, which included alarming rates of drug overdose, as well
as transmission of the human immunodeficiency virus (HIV) and the
hepatitis C virus. Canada’s first drug users union, the Vancouver Area
Network of Drug Users (VANDU), emerged in 1997 from this activism
(Boyd et al., 2009).
In response to a public health emergency in the Downtown Eastside in
1997, harm-reduction services in the neighbourhood did increase. Harm
reduction seeks to reduce the harms associated with the use of drugs (both
legal and criminalized) and to offer practical, non-judgmental services in
which abstinence is not primary, but one option among many. Owing to
the advocacy of VANDU and other key organizations and individuals,
such as Bud Osborn, in 2001 the City of Vancouver recommended the es-
tablishment of safer injection sites and other harm-reduction services, such
as HAT (Boyd et al., 2009). In 2005 the first HAT clinical trial, NAOMI,
opened its doors in the Downtown Eastside.
The Emergence of NAOMI Patients Association
All NPA members were once research subjects in the NAOMI HAT trial.
As mentioned previously, NAOMI was a ground-breaking clinical trial
that tested whether HAT could lead to benefit for the people suffering
from chronic opiate addictions who had not benefited from other treat-
ments. Similar to earlier clinical trials outside of Canada, the NAOMI
findings demonstrated that HAT was a safe and effective treatment
that improved physical and psychological health among participants
(NAOMI Study Team, 2008). Other improvements were also observed,
including the decreased use of illicit “street” heroin, reduced criminal
activity, and the spending of less money on illegal drugs. At that time,
the Canadian NAOMI trial was the only heroin-assisted study that failed
to continue offering HAT to its participants after the study had ended
(SALOME, 2012b). This occurred despite evidence suggesting that con-
tinued HAT treatment is beneficial and that ongoing involvement by “ex-
periential” drug users is essential in order to develop ethical drug policy.
For example, the 2005 publication Nothing about Us without Us: Greater,
Meaningful Involvement of People Who Use Illegal Drugs; A Public Health,

Ethical, and Human Rights Imperative, by the Canadian HIV/AIDS Legal
Network (2005), is a manifesto demanding that experiential users be in-
vited to collaborate at all stages of research and program development. In
2011, VANDU also developed ethical guidelines for researchers who sought
to work with the organization. The World Health Organization (WHO) and
UNAIDS’s 2011 report Ethical Engagement of People Who Inject Drugs in
HIV Prevention Trials make similar recommendations, including that the re-
search subjects of clinical trials be provided with continued treatment at the
end of the trial if the medicine or treatment is found to be effective. In fact,
as early as 2006, Dan Small and Ernest Drucker wrote about these issues
in relation to NAOMI. They noted that there was a large body of evidence
demonstrating the effectiveness of HAT. They also noted that NAOMI
failed to provide access to a permanent HAT program after patients exited
the trial (even when the results of the trial were positive). They also ques-
tioned participants’ consent under duress (Small & Drucker, 2006).
Responding to this failure and the needs of some participants who had
been research subjects in NAOMI, Dave Murray established the NAOMI
Patients Association in 2011, almost three years after the HAT trial had
ended. Murray saw many NAOMI participants struggling after they exited
the trial; thus, he sought to provide a place to offer them support. He and
other NPA members established a group with a set of goals that are out-
lined in the following mission statement (Boyd & NPA, 2013):
We are a unique group of former NAOMI research participants dedicated to:

• Support for each other
• Advocacy
• Educating peers and the public
• Personal and political empowerment
• Advising future studies (heroin and other drugs) and permanent programs
• Improvements in consent and ethics
• The right to a stable life and to improvement in quality of life
NPA’s goal is to have alternative and permanent public treatments and

programs, including HAT programs.
These goals demonstrate the group’s commitment to ethical change in
drug policy. Below, we discuss in detail the four ways in which these goals
have been put into action by the association: member support, social re-
search, advocacy, and the formulation of policy recommendations.
Member Support
From the beginning, the NPA was intended to help members. The group
of (men and women) meets on Saturdays in the common meeting room at
the VANDU rental space in the Downtown Eastside. Ten to forty members
attend each meeting, and men outnumber women, reflecting the NAOMI
study’s population. All of the members are on social assistance or disability
benefits. Many have poor health, the majority live in single-room-occupancy
units or social housing in the area, and some are homeless. Because NPA has
no formal outside funding, VANDU’s support has been essential. VANDU
provides a safe place for NPA members to meet, small stipends for mem-
ber participation, and representation on the VANDU board. NPA and
VANDU are also members of provincial, national, and international orga-
nizations that advocate for the rights of people who use criminalized drugs,
such as the BC-Yukon Association of Drug War Survivors, the Canadian
Association of People Who Use Drugs (CAPUD), and the International
Network of People Who Use Drugs (INPUD).
Research for Social Change
In May 2011 the NPA decided to undertake its own research about mem-
bers’ experiences as NAOMI research participants. NPA members met with
co-author Susan Boyd in March 2011 and invited her to work with them.
After much discussion about community-based research for social change
(see Carroll, 2004) they decided to conduct qualitative research consisting
of focus groups, individual interviews, brainstorming sessions, and writ-
ing workshops with NPA members. The NPA members also planned to
co-author a report based on the research and their experiences (see NPA
& Boyd, 2012).
Below, we draw from the brainstorming sessions and writing workshops.
In addition, we include other writing pieces that were submitted at NPA
meetings from April to November 2011. At the NPA writing workshops,
which were held during the group’s weekly meetings, members wrote po-
ems and short essays about their lives. Sandy Cameron’s poem “Telling
Stories” was adopted by the NPA to guide its research process (Cameron,
2013). The NPA writing workshops were modelled after other ongoing
workshops in the neighbourhood. Many organizations in the Downtown
Eastside, including VANDU, have conducted writing workshops so that
the experiences of residents are heard and shared in and outside of the
area. These workshops are also political practices that bring to light peo-
ple’s activism and personal struggles, including their fight for social justice.
n pa w r i t i n g w o r k s h o p s
In the writing workshops members were given a pen and paper. Workshop
leaders explained to participants that any form of writing was acceptable
(poetry, story, one line, etc.) and that participation was voluntary. The
NPA group members surprised even themselves, and a proliferation of sto-
ries emerged.
wa i t i n g , c r e at i v i t y , f r i e n d s h i p , e v e ry d ay l i f e
A number of NPA members wrote about their childhood and the human
condition, often with a focus on the need for connection and self-expression.
Untitled essay
When I close my eyes I see a young boy with a fishing pole walking the booms
on the lake. He’s surrounded by mountains, all around is clear clean water and
most of all there’s LIFE all around.
The water and air is busy with beings with a single purpose. That’s the
point, they have a purpose. All my life I’ve wondered what my purpose was/
is. All my life I’ve tried everything I could to find out what my purpose is. I
start out with my emotions on high then when I realize that what I’m doing
isn’t it. I crash hard.
Self-realization means that we have been consciously connected with our
source of being. Once we have made this connection, then nothing can go
wrong. No one can ask another to be healed but he can let himself be healed,
and thus offer the other what he has received. Who can bestow upon another
what he does not have?
And who can share what he denies himself ?
That which is injurious, loses its capacity to harm.
When it is brought into the light. (L., cis male NPA member)
Peaceful Sunshine
Peaceful Sunshine
Darkened Skies.
Cloudless Sundays
in July’s Days.
The Sun so hot
While the water so cold. Just to cool down is a wondrous way to pass
the time away.
One day at a time or until we have peace and happiness as well all should
have with Every Sound with every Speech with everyone Listening to me
all in tune all in time to only Bring out the Best in All of Us. (R., cis male
NPA member)
Other members combined personal insights with accounts of the con-

fines of conventional drug treatment, such as methadone maintenance.
A Day in the Life

The sun is shining. I’m going to the beach. There’s families here and the waves
are awesome. It smells like my Nova Scotia home. Seaside odours, fish &
chips, sail boats in the harbour and tankers going to trade all over the world.
Oh no! I’m not feeling well, all of a sudden my nose is running, my bones
are aching. It’s the liquid hand-cuffs. Methadone. I forgot because the sun
was shining, and I felt free. But I’m not. It was only a dream. (D., cis female
NPA member)
In Canada, and especially in the Downtown Eastside, drug use is gen-

dered. For example, marginalized women in the neighbourhood who con-
sume crack cocaine have less access to health care and harm-reduction
services (Bungay et al., 2010). Another NPA member wrote about the con-
ditions of her life as an adult woman living in the Downtown Eastside
(DTES) for fifteen years. She writes about the impact of using criminalized
drugs in this space and the effects of the prohibitionist policy:
From my heart
I have been a “resident” in the DTES for 15 years now and still every day I am
in some way or other shocked, surprised, stunned or confused by something I
either see, hear, or experience personally. Not all bad! Please don’t misunder-
stand – a lot of interesting, beautiful and yes sometimes flat out great things
have gone on over these 15 years or so.
One thing however stands out far above everything and that is how so
many of us still have our “humanity” intact.
Most of us have been lied to, robbed, beaten up, ripped off, blamed wrong-
fully, accused of, given credit for or not given credit for all sorts of stuff. Yet,
here we are – still saying “Hi, how are you?’ – sharing whatever we can, trust-
ing the next “guy” and yes – trying to get that 1 hoot of hoots.
For myself, dope has somehow become less and less important – probably
because it has been less and less good dope. My down habit seems to be less
(amount-wise) as time goes by.
Maybe it has something to do with losing “friends” to dope or dope-related

circumstances – who really knows? By the end of today (God forbid) there
could be 1 less of us here. The survival instinct and skills we have acquired are
amazing. We seem to be a bunch of “energizer bunnies.”
I know most of us are physical survivors of massive amounts of sugar –
even though the majority of us are seriously underweight. We live on the stuff.
It really should be illegal too. Just joking. Joining another important survival
skill we need.
At the beginning, middle and end of each day, I find myself just shaking
my head – usually thinking to myself what the fuck are we doing. I am re-
minded of a dog chasing its tail. Wow it hurts when you catch it! But usually
you never do.
The best I can do is to keep carrying on as best I can, trying to keep my
“human” self intact. (C., cis female NPA member)
The writings that follow continue along the theme of friendships that
have developed over time, loss, and living in the Downtown Eastside. They
also highlight the lives of marginalized women in the neighbourhood,
and the violence experienced by many; poor, racialized, and Indigenous
women are vulnerable to legal and social discrimination, “structural and
“every day” violence,” health problems, drug arrests, prison time, child
apprehension, and stigma (S. Boyd, 2015; Bungay et al., 2010; Robertson
& Culhane, 2005).
Dear Sophie,
Of lives and times
How often do friends leave? The immediate intensity of sadness for myself
and we find ourselves to face and or to cope with the horrific news of the
loss of dear others that were close to an individual whose broken few and the
toughness of the street wears even on our expression day to day.
We’ll miss you Sophie.
With love,
(M., cis male NPA member)
Bathroom Floor
Once again I find myself
alone, contemplating
life while sitting on brick
red tiles that make the
bathroom floor. Since the
only thing that I am wearing

is a t-shirt and g-string,
the cold tiles feel so great
Pressed against my flushed
and hot skin.
Thinking, I realize that all
through my life that one
constant and comforting
thing is the hundreds of
hours that I have spent
in this tiny room shutting
Out every thing. The place
where plans are developed,
decisions made and sins
confessed. Also, where I
cry, laugh and apply the
makeup that hides the
purple/blue marks that
cover most of my body,
the red lines caused from
tears running down my
cheeks non-stop. Or the
true feelings that I spend so
much time trying to hide, the one
place that I can be my true
self and not feel the sharp
hot sting of his slap.
I, like so many women, have
learned that hiding is the
way to live. Following every
word of the man that we think loves us and for that
love we live like prisoners locked away. (M., cis female NPA member)1
The NPA members also wrote about their experiences as subjects of

clinical research. It is important to understand that for a short while un-
adulterated legal heroin was available to NAOMI research subjects in a
clinical setting. During that time, outside of the clinical study, heroin was
not legally available elsewhere in Canada. Although heroin can be bought
illegally, it is expensive, adulterated, and only available from the illegal
market. Thus, users are vulnerable to arrest and to possible drug overdose
because the quality is never certain. For many NPA members, the NAOMI
clinical trial provided a respite, and they saw their lives improve (Boyd &
NPA, 2013).
NAOMI participants had to visit the clinic three times a day at desig-
nated time slots – morning, afternoon, and evening – to receive their med-
ication. They were observed prior to, during, and following their dose.
Thus, the participants spent a lot of their day with each other at the clinic.
Whereas the focus groups highlighted some of the positive experiences of
NPA members in the NAOMI trial (see Boyd & NPA, 2013), some NPA
members chose to write about the negative outcome of being a NAOMI
research subject.
Memories at the Corners of My Mind

The way we were.
NAOMI
Emotion = ANGER
Angry at myself, sometimes reminded me of being in school, being disruptive
questioning authority. (D., cis male NPA member)
Untitled Poem
Still down here
can’t remember how many years
had lots of laughs
and lots of tears
not sure how or when it will end
know all kinds of people can’t call 1 a real friend
maybe tomorrow maybe next year
but when it is over don’t shed a tear
’cause the misery is over. I hope . . . (K., cis male NPA member)
NAOMI (Trials?)
How can I (we) be the lucky one? Chosen as 1st grade “A,” fresh, unquestion-
ing meat? To be lucky enough, chosen 1st to receive, FREE grade “A” dope
from places and parts unknown?
Did I care?
Should I care?
If I didn’t care, who could care?
Then: No one (seemed) to care.
Now: EVERYONE (seems) to care!
Raising new issues, NEVER thought of then, only thought of now?
How can this be?

Were we: so far gone, all that mattered was . . .
No! Cost . . .
No!! work . . .
No!!! MORE DRUGS (given FREE)
Back to the Grind, just like I’ve never left!
So . . .
Why, did I even bother to be a “trial” RAT 4 NAOMI?
To be left hanging, with No rope!
Thanks NAOMI. (J., cis female NPA member)
Others wrote about NPA meetings. NPA members expressed concern

in their writing about the lack of an adequate exit strategy for NAOMI
participants – that a permanent HAT program was not established follow-
ing the clinical trial – and about the realities they faced after exiting the
study: having to buy criminalized drugs once again, being vulnerable on
the street, and having to participate in drug treatment programs that had
already failed them (which had been one of the criteria for being a research
subject in the NAOMI clinical trial in the first place).
Untitled Essay
I’m not sure what I’m suppose to write here, since I just occurred on the scene
here late and everyone is already writing their letters I suppose you’d call this
for lack of a better word. So here I sit writing.
Also just got news that a girl we all knew just passed away, she was a junkie.
I suppose nobody knows why she died exactly only that she did.
I suppose life’s like that, you’re here one minute, gone the next. What’s it all
for, what’s it all about, who knows? All I know for sure is one day we’ll all find
out. (M., cis male NPA member)
Untitled Essay
This is my very first meeting that I decided to attend.
I had completely forgotten that VANDU held a committee meeting every
Saturday. The meeting time is usually held at the hours of 12:00 – 1:00 and
$5.00 is awarded to people who decide to attend. (J., cis female NPA member)
NICE
PEOPLE
USE
DRUGS (D., cis male NPA member)
Advocacy
The NPA recognizes the importance of reaching out to drug-user and

harm-reduction groups, researchers, and policymakers. Its goal is to ef-
fect change so that HAT becomes a permanent program that fits the needs
of people who use it; thus, they recommend advocacy on many fronts. At
the end of 2011 the NPA research project, including the writing compo-
nents noted earlier, neared completion; the NPA then co-authored a report
to communicate its findings: NAOMI Research Survivors: Experiences and
Recommendations (NPA & Boyd, 2012). They also communicated the results
of their research at a number of public events in the Downtown Eastside
during the winter of 2011–12, including at VANDU, and at national and in-
ternational conferences. In the following years the association continued to
present locally, nationally, and internationally; thus, the experiences of NPA
members – being the first people in contemporary North America to receive
HAT – and NPA’s recommendations for future studies and programs were
heard by a wide range of audiences.
Recommendations for the Drug Trial SALOME
The very existence of the NPA (and VANDU) shows that the people who
use criminalized drugs in Vancouver’s Downtown Eastside do not accept
their fate without fighting for more ethical drug policy. The decision by
former NAOMI trial participants to hold weekly meetings at VANDU af-
ter the study had ended was a first step in allowing individuals to support
each other and to express themselves and their experience. Their research
and advocacy continued to connect members to a social justice movement
for greater ethics in drug policy and for an end to drug prohibition. Their
most recent advocacy again confirms this connection. At the end of 2012
another major clinical trial began in Vancouver’s Downtown Eastside: the
Study to Assess Longer-term Opiate Medication Effectiveness (SALOME)
examined whether hydromorphone (Dilaudid) was as beneficial as diace-
tylmorphine (heroin) for “people suffering from chronic opioid addiction
who are not benefiting sufficiently from other treatments” (SALOME,
2012a). SALOME also assessed whether “those effectively treated with
these two injectable medications can be successfully switched and retained
to the oral formulations of the medications” (SALOME, 2012a). The
SALOME website stated that Canada was the only country that termi-
nated HAT following the NAOMI clinical trial even though the treatment
showed success. Thus, SALOME researchers stated that they had applied
“for research funding to continue investigating effectiveness of licensed

injectable opioids (the SALOME trial)” (SALOME, 2012b). However,
countries around the world have been testing the effectiveness of HAT,
not hydromorphone.
To test the researchers’ hypothesis, the SALOME trial compared the ef-
fectiveness of six months of injectable diacetylmorphine with that of six
months of injectable hydromorphone; for select research subjects they also
examined the effects of switching from injectable to oral medication after
six months of treatment. Using a lottery system, people who registered for
the trial and were deemed eligible were contacted. The clinical trial expected
that research subjects would participate in the study for one year, followed
by a one-month transition period in which they would be encouraged to
participate, once again, in conventional treatments, such as methadone
maintenance, drug-free treatments, and detox programs (treatments that
had proven to be ineffective for these participants) (SALOME, 2012a). As
noted earlier, the repeated failure of treatment efforts for participants is in
fact part of the criteria for selection of participants in SALOME, as was the
case in NAOMI. Similar to the NAOMI trial, SALOME did not include a
strategy for creating a permanent HAT program following the study.
Prior to SALOME opening its doors, NPA members met with SALOME
researchers and provided valuable input from their experiences as NAOMI
research subjects. They also shared their recommendations for future
HAT trials and maintenance programs (NPA & Boyd, 2012, p. 10). NPA
recommended:
• that, when experimental drug maintenance programs are over, clients

(research subjects), for compassionate reasons, should receive the drug
they were on as long as they need it;
• an umbrella of support and services, such as housing, and access
to medical treatment, all under one roof;
• access to welfare workers and Ministry representatives familiar with
the area;
• access to nutritious food for self and family;
• support to move life forward through enrolment in school and trades,
as well as family unification;
• access to family and criminal lawyers, education/advocacy skills,
and advocates;
• diverse routes of drug administration for its clients: oral, smoking
form, and injection; and finally
• that time on site be used to support, educate, and advocate.
Further, the NPA recommended that all future studies and programs
include NPA and other heroin users in the development of the projects and
that they should be part of the team from the beginning to the end (Boyd &
NPA, 2013). In the future, the NPA would like to see the establishment of
HAT programs that are less rigid, less medicalized, and less regulated. The
NPA favours HAT models that are social and cultural spaces of inclusion
rather than highly medicalized and hierarchal spaces.
Although the SALOME researchers put into place some NPA recom-
mendations, the larger issues concerning lack of an exit plan and the set-
ting up of a permanent HAT program were not addressed at that time.
This raised many concerns for NPA members.
The NPA and other advocates continued to push for change in
SALOME’s policy. In 2012 the NPA consulted with a drug-policy lawyer
for Pivot Legal Society. The society is a non-profit organization in the
Downtown Eastside that strives to “use the law to address the root causes
of poverty and social exclusion” (Pivot Legal Society, 2012). By working
with Pivot Legal Society and by developing other forms of advocacy, the
NPA hoped to change the course of events for SALOME participants and
others who would benefit from HAT programs (rather than clinical trials).
In 2013 the NPA changed its name to SALOME/NAOMI Association
of Patients (SNAP) to reflect its membership better. At that time many
members were patients in the new HAT trial, SALOME. In early 2013,
SNAP sent a community support letter to Providence Health Care, British
Columbia’s health provider, and copied it to a number of prominent play-
ers in the SALOME trial and health care in the province. It was endorsed
by local residents, as well as by Libby Davies, a Member of Parliament
for Vancouver East at that time, and organizations in and outside of the
Downtown Eastside. The community letter supported the provision of
a permanent HAT program in Vancouver. It asked that SALOME and
Providence Health Care immediately provide a more feasible exit strategy
for its research participants and a permanent HAT program for them (Boyd
& NPA, 2013).
Owing to the extensive advocacy efforts on many fronts since late 2012
and early 2013, Providence Health Care has been striving for a more feasible
exit strategy for clinical trial patients. For example, in 2013 some physicians
who were in attendance at Providence Crosstown Clinic in the Downtown
Eastside where SALOME was conducted submitted requests to Health
Canada for special access to injectable heroin for individual patients. In ad-
dition, Providence Health Care began looking into other treatment options
for SALOME patients exiting the clinical trial. In early 2013, patients who
were to exit the trial were kept in an interim program at Crosstown Clinic,
and Providence Health Care began to discuss the possibility of providing
oral hydromorphone to some SALOME participants as a treatment option
after the trial. By September that year some former SALOME patients were
also receiving injections of hydromorphone at Crosstown Clinic. Also in
September 2013, the Special Access Program, Health Canada, approved
twenty-one HAT applications for former SALOME patients to continue
to receive treatment for three months after they exited the trial. However,
quickly following this landmark approval the federal government changed
the rules of the Special Access Program, and the then health minister, Rona
Ambrose, condemned the initial decision. In October 2013 the new rules
of the Special Access Program stated that heroin, and other criminalized
drugs, could no longer be requested by physicians for their patients, even
when drugs had been shown to benefit the patients’ health.
Advocates stressed that there was a wealth of studies demonstrating the
effectiveness of HAT for chronic opioid users and, at that time, none for
Dilaudid (Strang et al., 2012); thus, they argued that it was unethical to
withhold HAT from SALOME patients when they exited the clinical trial.
On 13 November 2013, five SALOME patients (four being long-time SNAP
members), with co-plaintiff Providence Health Care of British Columbia,
filed a constitutional challenge in the BC Supreme Court to overturn the
federal government’s decision to prevent further Special Access requests for
heroin-assisted treatment. They argued that the Special Access Program’s
new regulations were unconstitutional and infringed on the Charter Rights
of former SALOME patients. In May 2014 Chief Justice Hinkson of the
BC Supreme Court granted an injunction for SALOME trial participants,
providing an exemption from the new federal Special Access policy that
prohibited doctors from prescribing heroin to patients for whom other
conventional treatment options had been ineffective. Thus, it was ruled
that the SALOME participants, if eligible, should receive HAT from Provi
dence Health Care physicians until the trial was heard. However, it was not
until the end of November 2014 that some former SALOME participants
began to receive HAT at Crosstown Clinic.
SNAP continues to meet weekly, and January 2015 marked their four-
year anniversary. A celebration honouring their tenacity and activism was
held in February that year, attended by SNAP members and their support-
ers. In September 2016, Health Canada, under the leadership of a Liberal-
led federal government, announced that the former Special Access Program
policy would be reinstated; thus, as this chapter goes to press, Special Access
Program requests for HAT can be submitted by physicians on behalf of their
patients. And in response to this policy shift, the Supreme Court challenge
will no longer be heard.
Conclusion
The SALOME/NAOMI Association of Patients just celebrated its sixth-

year anniversary. The association continues to advocate for ethical, social-
ly just drug policy. Along with international, national, and local groups
they challenge drug prohibition and its reliance on criminal law and puni-
tive policy. They support efforts to legally regulate all currently criminal-
ized drugs, the establishment of drug policy and services based on human
rights, ethical research, and the inclusion and expertise of people who use
currently criminalized drugs. SNAP’s immediate goal is to see HAT pro-
grams – a proven, safe, and effective treatment – established in Canada;
this goal has not yet been accomplished.
SNAP also challenges conventional understandings of people who use
criminalized drugs, especially those who use heroin. With almost no re-
sources except human effort, the NPA members set out to tell their stories,
to conduct social research for social change, to communicate their findings
and recommendations, and to be at the table advocating for drug policy
reform. SNAP’s motivation is simple: it does not want to see other people
suffer from failed prohibitionist drug policy and unethical drug treatment
and research practices.
SNAP members are part of the fabric of Canadian life; their health, so-
cial, economic, and human rights must be considered. SNAP is also part of
a global social justice movement to end prohibition and the criminalization
and pathologization of people who use criminalized drugs such as heroin.
SNAP encourages other groups to advocate for change and to engage in
creating their own community-based research to tell their own stories.
NOTE
1 This poem was printed in Megaphone’s Voices of the Street (2010), p. 20.
Megaphone is a magazine sold on the streets of Vancouver by homeless and
low-income vendors. It is published by the non-profit Street Corner Media
Foundation. In 2010 Megaphone launched the Voices of the Street literary
issue that focused on the stories of people who live in the Downtown Eastside
of Vancouver.
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14 Using Arts-Based Methods to Create
Research Spaces That Encourage
Meaningful Dialogue
i n d r a n i m a r g o l i n , t e r ry k r u pa , s e a n k i d d ,
d a r r e l l b u r n h a m , d aw n h e m i n g way ,
m i c h e l l e pat t e r s o n , a n d d e n i s e z a b k i e w i c z
Introduction
In this chapter we argue that arts-based research methods can capture

aspects of lived experience that are frequently absent from traditional
approaches to the study of mental health and recovery. The arts are a non-
verbal vehicle that enables levels of expression that may not be accessible
through traditional verbal methods (for example, interviews, question-
naires) and, therefore, provide more depth and nuance around the issues of
social location as well as the multiple forms of oppression including gender,
age, and racialization. In this way, arts-based methods address the grow-
ing critiques of traditional research methodologies that have ignored social
location. Research that does not address social location will miss acquiring
important knowledge about the recovery process. For example, research fo-
cused on recovery-oriented practices among service providers and service
institutions typically does not acknowledge that individuals may have dif-
ferent experiences of these services, based on gender, race, social economic
status, et cetera. The incorporation of the arts into research is additionally
well suited to the requirements of intersectional research because creative
engagement allows for tacit, embodied, and complex experiences of exclu-
sion based on intersecting social locations, to be emotionally integrated,
understood, and articulated more precisely by research participants.
Intersectionality is a prominent theoretical lens brought forth by femi-
nists of colour to understand how identity categories such as gender, age,
and race interact and become interdependent, simultaneous forms of op-
pression (Hulko, 2009; Mehrotra, 2010). Intersectionality aims to name
the forms of exclusion that interdependently oppress women for reasons
beyond their gender, such as able-bodiedness and class (Crenshaw, 1989).
Using Arts-Based Methods to Create Research Spaces 387
Feminist scholars have since developed intersectional methods of research,

noting that social research itself often makes invisible the social locations
of its subjects by treating groups of people such as women with “men-
tal illness” as homogeneous and disregarding the historical circumstances
that cyclically produce unique forms of hardship for marginalized groups
(Morris & Bunjun, 2007). Intersectional methods make power relations
explicit and attempt to capture multiple axes of oppression and inequal-
ity while portraying participants as multidimensional human beings with
resiliency, strengths, skills, and talents (Morris & Bunjun, 2007). In this
chapter we focus on the intersecting locations of gender, age, and race to
assist in filling this gap in the literature.
Traditionally, research on mental health and illness among women has
focused on topics such as the prevalence of certain disorders or behaviours
(for example, suicide) compared to the prevalence for men. Arts-based re-
search is one methodology that can allow greater understanding of wom-
en’s lived experience of mental health recovery. Knowles and Cole (2008)
broadly defined arts-based research as “the systematic use of the artistic pro-
cess, the actual making of artistic expressions in all of the different forms of
the arts, as a primary way of understanding and examining experience by
both researchers and the people that they involve in their studies” (p. 29).
As a stand-alone methodology or a methodological enhancement to
other approaches (Leavy, 2009a), ABR relocates knowing and being in the
world within local, personal, everyday events where people can engage,
empathize, and transform their lives. Given the privileging of professional
views in the traditional approaches to studying mental health recovery, the
relocation of knowledge to the people living with the actual experience is
particularly important. Even when the intent is to elicit lived experiences,
studies have largely been directed by professionals; they frame the research
questions and are bound by traditional research procedures and standards.
Thus, the inclusion of people with lived experience of mental health issues
is largely predetermined, and the research designs and strategies that iden-
tify and elicit their voices are lacking.
Miller and Crabtree (2000) referred to the importance of creating “re-
search spaces” that enable both those with lived experiences and researchers
to “converse at the wall” or, in other words, to find common ground and lan-
guage to transform research processes so that they are consistent with human
lived experience. Arts-based research has the potential to elicit an authentic
understanding of the lived experience of recovery and to give voice to experi-
ences that are not easily expressed in everyday language (Fraser & al Sayah,
2011; McNiff, 2008).
388 Margolin, Krupa, Kidd, Burnham, Hemingway, Patterson, and Zabkiewicz
Next, we outline the critique of current conceptualizations of recovery

and review the literature on the application of arts-based research in the
mental health field. Our intent is to provide a sense of the way in which
this type of research is currently being developed and used, as well as a
sense of its contributions to the advancement of knowledge in the mental
health field. We then briefly describe the findings of a research project
that was conducted by the authors using arts-based research methods to
study the recovery experiences of differently positioned women, including
younger, older, and racialized women with serious mental illness. Finally,
we reflect on the use of arts-based research to date and consider its po-
tential in advancing conceptualizations of recovery that are sensitive to
gender and other identities.
Recovery
The concept of recovery has gained prominence internationally as an or-

ganizing vision for mental health service delivery. In Canada, fostering re-
covery among citizens with mental health problems and mental illness has
been identified as one of the key directions of the country’s mental health
strategy (Mental Health Commission of Canada, 2012). Emerging large-
ly (though not exclusively) from the voices and narratives of people with
lived experience of mental illness, contemporary perspectives on recovery
have focused on understanding and enabling the processes by which people
come to lead full lives in spite of such illness. Patricia Deegan (1987, 1988,
1996) is often credited with coining the term recovery, and she used her per-
sonal story of being diagnosed with schizophrenia to show how recovery
is a process that belongs to people with mental illness; it is their struggle
to awaken to possibilities, to gain control, to realize their potential, and
to imagine and ultimately realize a future with meaning. From this per-
spective the supports, services, opportunities, and other factors external to
individuals are positioned to influence the recovery process. These factors
can be enabling and helpful or can act as barriers; even worse, they can
become “spirit breakers” (Deegan, 1987) that are more harmful and debili-
tating than the illness itself.
Considerable evidence now exists to show important gender variations
related to serious mental illness, suggesting that a gender-based analysis of
recovery is warranted. For example, the age of onset of a range of mental
illnesses, including depression, bipolar disorder, and schizophrenia, tends
to be later for women (Køster, Lajer, Lindhardt, & Rosenbaum, 2008) than
for men. This has been viewed as a protective factor in that, compared to
men, women have more time to establish careers, adult life skills, and rela-
tionships without the impact of acute illness. Yet, there is also evidence to
suggest that women with serious mental illness are more likely to experi-
ence depression and to attempt suicide and that their self-esteem is more
compromised despite better overall functional outcomes (Nordentoft et al.,
2002; Thorup et al., 2007). Furthermore, the literature shows that, when
aspects of social location are taken into account beyond gender, mental
illness among women can lead to specific adverse outcomes. For example,
women with serious mental illness are more likely to have experiences of co-
ercive sex in the context of poverty and homelessness (Collins, Von Unger,
& Armbrister, 2008) and to be victims of adult sexual abuse (Goodman et
al., 2001).
With regard to the recovery process and heteronormative gendered role
performance, Thorup and colleagues (2007) hypothesized that women may
place greater demands on themselves to meet social expectations. They sug-
gested that the implicit value placed on autonomy in the recovery process
may not adequately address the value that women place on relational dy-
namics. Schön (2010), meanwhile, suggested that structured gender norms
may give women an advantage in the recovery process, enabling them to
focus on making meaning of their situation, compared to men, who often
focus more on occupational roles and independence.
In this chapter we focus primarily on the analysis of gender and its in-
tersection with racialization and age through the lens of arts-based meth-
odologies. Our aim is to promote dialogue around the approaches and
practices within recovery that are sensitive to diversity and are attentive to
the factors that can produce marginalization and inequities.
Review of Arts-Based Research Applied to Mental Health
Arts-based research incorporates the artistic or aesthetic elements of creative

arts to inform any aspect of social science research, including data collec-
tion, analysis, interpretation, and representation (Leavy, 2009b). Imagina-
tive engagement has also been shown to nurture learning and healing (Knill,
Levine, & Levine, 2005).
Arts-based research includes varied art modalities such as photogra-
phy, theatre, film and video, mural art, collage art, poetry, storytelling, and
dance. This variety of methods can make unique contributions to mental
health research; they offer an accessible means for participants to articulate
experience, they allow a more equitable shift in power dynamics in research-

er-participant relationships, and they facilitate dissemination of results to
the broader community (Clements, 2012).
We conducted a search of mental health, wellness, and recovery literatures
that incorporated arts-based methods. We searched CINAHL, PyschInfo,
Medline, Summon, Embase, Web of Science, Google, and Google Scholar,
using the keywords arts, research, and arts-based research, combined with
mental illness, mental disorder, and recovery. Our search was limited to the
years 1995 to 2013. Although much of the literature focused on the use of
arts as treatment, we found fifteen relevant studies that focused on the use
of arts in the research process. These studies are discussed in detail below.
Looking at Lived Experience by Employing Photography Methods
Eight of the fifteen studies used photography as a method to access par-

ticipant experiences. This approach was characterized variously as photo
methods, photography, photo elicitation, and “photovoice,” which com-
bines the visual image of photographs with narratives to promote local
knowledge and community building (Clements, 2012; Wang, 2006). The
prevalence of photography is consistent with a scoping review of seven-
ty-one arts-based health research articles, in which the most widely used
method (in twenty-three articles) was photography (Boydell, Gladstone,
Volpe, Allemang, & Stasiulis, 2012). In our review, photography was pri-
marily used to explore participants’ lived experiences and meaning-making
of recovery as well as to promote recovery-oriented services. The primary
rationale provided for using photography was that people with severe men-
tal illness can struggle cognitively to articulate their experiences, and pho-
tography provides an effective way of sharing experiences in this context
(Erdner, Andersson, Magnusson, & Lützén, 2009; Erdner & Magnusson,
2011). Photography provides access to and a tacit rendering of an over-
whelming and hard-to-conceptualize experience (Clements, 2012; Miller
& Happell, 2006). Consequently, mental health researchers find photo-
voice to be an effective means to understand lived experience (Erdner &
Magnusson, 2011). A second rationale is that people with mental illness are
often marginalized and disempowered (Clements, 2012), and the employ-
ment of visual means, such as photovoice, empowers participants by giving
them control of the captured imagery; it is then used as relevant knowledge,
making them the experts of their own experience. A third rationale is that
the photographs evoke emotional responses, which can move policymakers
to empathize with the needs of individuals in recovery (Fleming, Mahoney,

Carlson, & Engebretson, 2009).
Photo methods offer a low-skill, low-barrier creative form of engage-
ment for capturing and communicating lived experience. These methods
are well suited for the study of inequities because they create new possi-
bilities for participants to respond to research questions. Participants have
control over the location and time in which they respond, which inevita-
bly allows them to shape the interpretation of questions. The power dif-
ferential between researchers and participants is additionally minimized
(Miller & Happell, 2006; Romano, McCay, & Boydell, 2012) because, for
its meaning to be understood, a photograph requires the voiced articula-
tion of the photographer; participants become the authors of their visual
and verbalized narratives.
Erdner, Andersson, Magnusson, and Lützén (2009) explored the life
views of eight participants diagnosed with serious mental illness, at three
day centres. Having reviewed participants’ photographs, along with indi-
vidual interviews, the authors reported that the use of photographs had
enhanced the participants’ capacity to reflect on and converse about their
life views. Similarly, Miller and Happell (2006) compared interview-only
participants with interview-plus-photography participants to show that,
by contemplating their own photographs, the participants were able to lo-
cate sources of hope in their lives. Furthermore, Clements (2012) used pho-
tovoice in a collaborative participatory action research project to discuss
recovery with five people who had lived experience, and one staff member.
Findings indicated that photovoice enabled participants to make personal
meaning of their experiences in relevant, accessible language (Clements,
2012). Overall, the photo method allowed participants to voice their sto-
ries and, in the process, create meanings of recovery. It also enabled re-
searchers to understand more precisely the participants’ internal struggles.
Photography may thus be viewed as a useful mechanism within mental
health research to create and disseminate local knowledge.
Incorporating visual imagery as both data and findings has been increas-
ingly incorporated in mental health research with a view to promoting
empathy and dialogue among researchers, community members, service
providers, and policymakers (see, for example, Fleming, Mahoney, Carlson,
& Engebretson, 2009; Thompson et al., 2008). Both Thompson et al. and
Fleming et al. found that participants in recovery felt misunderstood, in-
visible, and under-valued and suffered from stigma that led to a loss of
identity in their personal and professional relationships. The collaborative
and creative data collection process provided participants an alternative

experience in which they reportedly felt that, when they explored research
questions through photographs, they were more engaged and comfortable
with researchers, they had knowledge to contribute, and they were viewed
as individuals (Miller & Happell, 2006; Romano, McCay, & Boydell, 2012).
Thompson et al. (2008) did not say whether photovoice achieved its objec-
tive of increasing empathy among care professionals. Fleming, et al. (2009),
however, found that the incorporation of a photovoice exhibit communi-
cated mental illness in an engaging way that educated, and reduced stigma
among, its viewers.
Romano, McCay, and Boydell (2012) engaged ten young adults, who
had experienced a first episode of schizophrenia, in photographing an ob-
ject that they believed symbolized their recovery, and then discussing the
object’s importance during an in-depth interview. Thematic findings indi-
cated that participants needed time for recovery, that personal interests and
goals promoted recovery, and that spirituality was a non-medical support
to reclaiming daily life. This coincides with Fleming, Mahoney, Carlson,
and Engebretson’s (2009) work in which participants reported the need to
discuss existential concerns in their recovery. In a slightly different vein,
Bryant, Tibbs, and Clark (2011) undertook a photographic participatory
action research study, intended to influence service development, by exam-
ining whether social networking was occurring in designated social spaces
of a mental health centre. Participant-chosen findings revealed that the so-
cial lounge provided a safe space and, in that space, enabled services that
fostered social networking. Their collaborative photography project showed
that institutional efforts to foster social networks by designing an inviting
social space among service users aided in preventing long-term isolation.
The implications of these investigations are that recovery-oriented service
providers should consider physical spaces that promote social engagement
among users, incorporating discussion around spiritual or existential needs
and concerns and engaging service users artistically to reclaim a positive
sense of self.
Other Arts-Based Research Methods
While photography has been the most documented arts-based research

method in this context, several other methods have been examined. Parr
(2007) facilitated a collaborative film-making process, consisting of twen-
ty film-maker participants (academics and people with mental health prob-
lems) from an arts and mental health organization. Employing film-making
as a form of arts advocacy and consciousness-raising, data collection meth-

ods included ethnographic notes taken during the film-making process and
the public dissemination of the film. Parr described the process as involving
“co-empowerment,” suggesting that both researchers (and their research)
and study participants influenced one another. The final document was a
thirty-minute piece entitled Recovering Lives: Mental Health, Gardening,
and the Arts. Findings revealed that the film-making process was equally
important to the film product because the required collaboration, while
complex, was effective in levelling the power differential between the two
groups. The process also involved negotiation of meaning among group
members, which created depth and nuance around the research question.
Parr’s film-making process enhanced the understanding of how this cre-
ative art form could serve as a source of self-esteem, purpose, and expres-
sion for all participants. Notably, this arts-based research method stands
out in terms of rigour in that it directly addressed the inherent power dif-
ferential between participants with lived experience and academics.
Language-arts research methods have also been developed. Dent-Brown
and Wang (2006) used story-making as a method to assist individuals with
mental illness in increasing self-awareness, and to assist therapists in under-
standing clients’ “internal language.” Participants reportedly felt that the
fictional stories they created provided relevant metaphors for their lives,
even though they were instructed to create a character unlike themselves.
Many participants experienced therapeutic change as they processed per-
sonal, emotionally disturbing content and felt proud of their accomplish-
ment. Similar to Parr’s (2007) inquiry, this finding stands in contrast to
mental health research that uses traditional interviewing methods that can
leave participants reportedly feeling incompetent and devalued.
Arts-based researchers have found that creative methods enrich the ex-
perience for both themselves and participants and bring greater insight to
their focus of inquiry. For example, Vander Kooij (2009) conducted re-
search with participants who wrote songs as part of their music therapy
treatment, and found that the process highlighted the tensions in the strug-
gle to move from illness to health. Silver and Reavey (2010), meanwhile,
used mixed visual-art techniques to inquire into the experiences of embodi-
ment, beliefs about the self, and self-esteem among males and females diag-
nosed with body dysmorphic disorder. The incorporation of self-portraits
as a method afforded participants a more distanced view of self and clari-
fied that individuals with the disorder perceived themselves as looking ex-
ceptionally more attractive when they were younger than they did at the
time of the study. Carless and Douglas (2009) employed poetry with males
and found that poetic approaches produced a richer understanding of the

views of participants with severe mental illness, who may not otherwise
produce coherent narratives. One limitation of this work is that analysis or
meaning-making of the poetry was not provided.
Chung et al. (2006) conducted the only study that could be considered
intersectional because it investigated multiple axes of oppression such as
mental illness and race. They produced a mixed media event that combined
film, a photography exhibit, poetry, and comedy in order to cultivate com-
munity dialogue and engagement about depression. This community-based
participatory study brought together academics and community members
from a wellness group that had been formed to use the arts to commu-
nicate with local African Americans about the stigma and treatment of
depression. From the outset the researchers identified historical oppression
related to race as a critical barrier to effective health communication strate-
gies and to research processes. Thus, the aim of this study was to build on
community strength and to identify environmental stressors that exacer-
bated depressive symptoms. The researchers used both quantitative and
qualitative methods to gauge the impact of the different art forms on the
audience. Findings showed that the participatory framework allowed for
more culturally sensitive and inclusive evaluation methods that involved
the input of both the researchers and the community group members.
The arts-based research literature we surveyed reveals a promising means
to access people’s experiences of mental illness, wellness, and recovery.
Furthermore, the artistic methods reviewed enabled research participants
to drive the knowledge being constructed. The arts foster a humane, ethi-
cal methodological approach in which individuals feel valued as the ex-
perts of their own experience.
Despite these strengths, arts-based research is still in its infancy com-
pared to other methodologies, and thus the clarity of the process and the
rigour of the work needs to be strengthened. Many of the arts-based re-
search articles reviewed did not contextualize the research enough for the
reader, viewer, or listener or include a self-reflexive critique of the rigour of
the research design. In addition, recalling that the goal of intersectional re-
search methods is to produce knowledge that acknowledges and addresses
multiple axes of oppression, only one of the studies directly attended to
gender, race, class, and other factors as integral to understanding the ex-
periences of recovery and of disadvantage and inequity in the recovery
process. Still, issues related to inequities did emerge in the context of these
studies, including, for example, access to good quality treatment. Indeed,
arts-based research itself was often viewed as a strategy to reduce power
differentials between researchers and participants, as well as the impact of

mental health disability, specifically the difficulties in communication as-
sociated with impairments in cognitive processing.
As a means of offering an example of arts-based research that attends to
more than one aspect of social identity, we now turn to our own study. Our
aim was to advance the understanding of the use of arts-based research
methods to access lived experiences of recovery in a Canadian context
and to evaluate these methods in order to study intersectionality and so-
cial inequities.
Studying Recovery Experiences among Women

with Serious Mental Illness
Method
Our study was conducted at three locations across Canada (Prince George,
British Columbia; Kingston, Ontario; Toronto, Ontario). Each site fo-
cused on engaging women with serious mental illness, but there were social
demographic differences across the locations. One site involved Indigenous
and Caucasian older women (N = 7; age range 53–71) with lengthy histo-
ries of mental illness who had been living in a small northern city for at
least thirty years (Prince George). The second site focused on racialized
women (N = 7; age range 31–53) living in a metropolitan urban setting
(Toronto). The third site included young Caucasian women (N = 4; age
under 25) who had received early intervention for psychosis services in a
small city (Kingston). Although there was certainly a degree of diversity
across domains in all groups, we sought to find areas of focus in order to
locate the narratives better, concentrating particularly on groups that are
often neglected and under-represented in the broader literature. While age
and race intersect as factors of exclusion for most women at different stag-
es in their lives, we chose to engage women who might identify to a greater
extent with these locations as points of marginalization in their lives in
order to gain insight into their narratives of how these factors overlapped
to limit their life choices and ostracize them. Such methodological triangu-
lation can strengthen analysis in areas where research has tended to over-
represent the experiences of particular groups, for example, middle-aged
White men (Patton, 1999). Our plan was to engage a diverse sample that
would allow us to study experiences of recovery and to apply an intersec-
tional analysis based on gender, age, and racialization and other identity
categories as they emerged. Participants were recruited through existing
partnerships with consumer-survivor, housing, and mental health organi-

zations. Institutional ethics board approval was obtained from universi-
ties or agencies at all participating sites (Queen’s University, University
of Northern British Columbia, Centre for Addiction and Mental Health,
Activity Centre for Empowerment, Workman Arts).
Our research question was, “What are the important moments, people,
places, events, activities, and milestones in your recovery?” Over three or
four sessions at each site we applied creative, artistic methods to explore
this question with participants. The study group with the older women was
led by researchers, one having expertise in the arts. However, the group
was structured so that group members emerged as leaders and assumed fa-
cilitating roles. The other two groups (the racialized women and the young
women) were led by a person who had lived experience of mental illness and
expertise in the arts. The older women met for three separate three-hour
sessions, during which they did individual and group collage, with paint-
ing, drawing, and the use of pre-made images, along with reflective writing
and guided gesture-and-body-movement work. The group involving racial-
ized women met for three separate three-hour sessions and engaged in a
variety of artistic media, including drawing, painting, poetry, collage, letter
writing, movement, tableau vivant (that is, where people enact a particular
incident or situation while silent and motionless), drama, sound, and voice.
The young women did individual collage, also over three separate three-
hour sessions, which involved a structured technique to prepare canvases
and to integrate painting, hobby craft objects, and magazine pictures and
text. The data included investigator field notes and audio-recorded and
transcribed discussions that focused on participants’ art-making process
and products during a debriefing after each art-making session. These de-
briefings (including a beginning check-in and an ending check-out) were
guided by semi-structured interview questions. The data collected through
the arts was incorporated to deepen exploration of the ideas caught in the
transcribed data.
Our data analysis was consistent with the two-pronged, text-based ap-
proach to intersectionality proposed by Aylward (2010). This method was
chosen for its overt intention to bear light on the complex interplay of
structural forces imposed upon women’s identities and the way in which
women navigate these forces within their unique contexts. The first prong
is premised on the idea that an individual’s experiences of recovery will be
based on multiple identities, some grounded in forms of inequity. The sec-
ond prong focuses on a contextual analysis of these experiences and forms
of inequities. In this way our analytic process focused on using a range
of relevant data to develop a full conceptual understanding of recovery

experiences. The process was also consistent with grounded theory. This
included, first, becoming familiar with all data (records of verbal dialogue
during the creative activities, participant’s comments about the meaning
of their artwork, and investigator field notes) and then coding this data
line by line; and, second, identifying the relationships between codes (for
example, dimensions) and information that cut across multiple codes in a
thematic manner, to develop an integrated and conceptual understanding
of the data.
Thematic analysis was completed at each site by local researchers. Mem
ber checking, focusing on high-level themes, was conducted at two of the
sites (Prince George and Toronto). Member checking did not occur with
the younger women who had first onset psychosis, because of the logis-
tical constraints in accessing participants. The research team conducted
cross-site analyses that focused on common, cross-cutting themes as well
as varying themes.
Findings
Across the three sites the experience of recovery was characterized as an

overall sense of well-being while being true to the “authentic self.” We iden-
tified three common and interconnected themes related to the experience
of recovery. The first theme was the reconciling of changes in personal
identity in order to experience the self as worthy and accomplished. The
second theme was the importance of relationships and the central role of
women in caring and family. The third theme was the finding of a place in
the world and the fulfilling of meaningful community roles. In addition,
the study revealed recovery experiences that were particular to the identi-
ties and places of the specific study groups.
reconciling changes in personal identity

Participants across sites described the negotiation of new perspectives on
personal identity as a response to experiencing the self as being disempow-
ered or compromised. For one young woman, the collage method provided
an avenue for demonstrating pride in her lesbian identity. A second strug-
gled with reconciling participation in medical treatments with its negative
impact on her weight and body image. For another young woman, art
allowed her to show symbolically her ability to live independently from
her parents. During the collage-making process she disclosed: “I thought
I wasn’t going to be able to move out of my parent’s house for a very long
time. Ten to twenty years maybe. And then, all of a sudden, as soon as I
think that – there I am out on my own already. Living and kicking and
being happy.” For the older women, recovery of one’s identity represented
survival – survival from life experiences of stigma, loss, and institutional-
ization – and was expressed as a collective as well as an individual process;
for example, “What I really want to stress is we are people first, intelligent,
creative, wonderful people. We have a mental illness. We are not a mental
illness.” For the racialized women, the response to experiencing a devalued
identity was to create a valued and empowered sense of self that reflected
the integration of a range of identity components, including gender, race,
and illness, as illustrated by the following:
I just did a drawing of myself, and I was really focusing on my face and seeing
if it could look like me, but it’s not exactly what I look like … and that’s kinda
how I feel about my illness. I don’t look like my illness, I don’t feel like my
illness, but it’s built these symbols within me … which is why I used an ankh
[Egyptian symbol] for everlasting life. Because I don’t look like my illness. I
am who I am and I will look like myself again. And the star and the heart [in
the drawing] are the calm feelings I have about myself. Sometimes reminds me
of a star. you know. I always want to love a part of me. It’s hard because when
you get diagnosed, you lose a sense of your identity, and to come to terms
with the illness is finding your identity again, accepting that it is part of your
cultural background, all the differences.
c e n t r a l i t y o f r e l at i o n s h i p s a n d fa m i ly
For the young women, hopes for the future that included an intimate re-
lationship in the context of a happy family life appeared in their artwork.
For one member, who was dealing with the reduced custody of her children
as she focused on completing her schooling, parenting was represented as
a current and important role. Another participant worried that, given her
current need to learn to take care of herself, marriage and parenting might
not be possible, while a third looked forward to the prospects inherent in
her current lesbian relationship. The older women shared stories about be-
ing abandoned by husbands and families and about the loss of children.
Some women spoke of terrible loss and shame but also of finding hope in
solidarity, support, and friendship with others who had also experienced
mental illness. A few women spoke about leaving physically and emotion-
ally abusive marriages. What was remarkably clear was that the diagno-
sis and experience of mental illness had created enormous strife within
families. All the older women had experienced excessive weight gain from
psychiatric medication, which had negatively affected their self-esteem and

their partner’s level of attraction to them. Only one of these seven older
women reported having received unconditional love and support from her
husband and children. For the racialized women, the experiences of per-
sonal empowerment and independence that were central to their recov-
ery often conflicted with the values and expectations of family. For some,
reconnecting with children and the role of being a mother was a central
feature of their recovery. Of greatest importance to all the women was the
presence of relationships – core family or community relationships that
would accept and nurture their emergent identities and that would respect
their capacity as women to contribute meaningfully to the creation of a
strong sense of community.
finding place and meaningful roles

The racialized women reported valuing education and work as a means to
personal achievement and autonomy, as well as being important vehicles
for meaningful community participation. The young women linked involve-
ment in school and work to future aspirations for particular careers, which
were linked in turn to their desire to create a meaningful and stable home
life. The older women described their activities largely in collective activ-
ism and advocacy. They noted that gender differences with respect to work,
career, and family might make recovery more difficult for men who have
been socialized to take on the role of family provider.
g r o u p - s p e c i f i c e x p e r i e n c e s o f r e c ov e ry
The young women experiencing a first episode of psychosis used dark- and
light-colour shading to symbolize elements of the self that were incon-
sistent with perceived social expectations of women. Descriptions of per-
sonal struggles occurring during the emergence of acute illness were often
hidden from others. For example, one young woman noted that she had
had thoughts of violence for several years, but that these were not pursued
by others, who could not imagine that she could harbour such thoughts.
The group members also indicated that while, compared to men, women
might be perceived as more open to sharing and asking for help, this was
highly individual. This finding reveals the need for an intersectional anal-
ysis that does not simply attach, based on gender assumptions, certain
behaviours to men and women, such as help seeking, but recognizes the
intersecting subjectivities that influence help-seeking behaviour, such as
the notions of normalcy with regard to mental health as they interlock
with age and gender.
For the older women with lengthy histories of mental illness, the depri-
vation and indignities experienced during in-patient psychiatric hospital-
izations contributed to the perceived trauma of mental illness. The lived
experience of these deprivations and indignities was illustrated poignantly
through the arts. Gender-related indignities in hospital included forced
disrobing in front of male security guards, with the threat of further co-
ercion, and disregard for sanitation and basic comfort related to men-
struation. Activism, expressed in many of their artistic efforts as well as
a peer-led consumer survey, became a vehicle for effecting change in these
in-patient conditions and a central element of their recovery journeys. The
activism and peer-led survey were not a part of this study; however, they
occurred concurrently, and participants reported that the involvement in
this research had fuelled further energy towards their activist efforts. For
instance, the psychiatric in-patient unit was renovated to improve the en-
vironmental aesthetics, including lowering the glass wall between patients
and staff; the programs, including reinstitution of an arts program; and the
menu, which was altered to include a more nutritious diet.
For racialized women, the creative arts sparked dialogue about oppres-
sion and the loss of power related to mental illness in general, but also
specifically within cultures of origin. The women described how their roles
could be highly prescribed and required sacrificing personal needs to look
after family, in particular male family members; for example, “First it’s her
father, then it’s her husband, then after it’s her son. She’s never free, she
always looks after family rather than herself ” (Kidd, Virdee, et al., 2014).
Discussion
The literature review and the research study presented in this chapter
emerged from our interest in learning about the potential for intersection-
al, gender-sensitive research that was offered by arts-based research in the
area of mental health recovery. Specifically, we asked if arts-based re-
search could provide a vehicle for gaining an intersectional understanding
of the lived experience of recovery among diverse groups of women. We
were also interested in learning whether arts-based research could assist in
gaining a greater understanding of women’s experiences of the intersecting
structural forces that have been known to affect their resilience (Morrow
& Weisser, 2012). With regard to the relationship between recovery and
identity, our inquiry emphasized a dynamic process of variously explor-
ing, integrating, or rejecting aspects of identity as they interacted with
social and cultural influences. Coinciding with Vander Kooij’s (2009) study,
reconciling changes in those identities in order to experience a cohesive

self as worthy and accomplished was a significant aspect of the recovery
journey. With regard to the importance of context, we found that the
women experienced their multiple identities within particular contexts and
that there were identity differences not only across groups but within the
groups. Social location in age, and cultural group affiliation, for example,
were as important to the experience of recovery as was the length of time
with illness. However, even beyond the richer knowledge of identity and
context produced using arts-based research, we noted that the specific arts
practices employed also lent particular meaning to the study results. Next,
we consider this aspect of arts-based approaches to studying recovery.
Arts-Based Research Processes

and Gendered Meanings of Recovery
Arts educator Eisner (2002) argued that the meaning of content is shaped
by, and cannot be separated from, the form in which it is created. Thus, the
specific artistic avenues used to understand important events in women’s
recovery process formed the type of knowledge they conveyed in their art-
making and reflection processes. For instance, particularly striking across
all three sites in the research was the minimal dialogue about treatment and
symptoms and the inclusion of the positive growth-promoting aspects of
their lives. This stands in sharp contrast to literature governed by illness in
which diagnosis, symptoms, and treatment dominate the discussion. Based
on our findings, we contend that this difference is a direct result of the artis-
tic media employed to give voice to women’s perspectives in their recovery
journeys. The arts evoke passion and encourage a focus on searching for
beauty in both the external world around us and the internal world within
us (Eisner, 2002). Participants across sites reported feeling connected with
other group members and inspired with hope through the arts process.
The practice of creating offers female participants the experience of being
a creator with agency rather than a powerless bystander (Ellsworth, 1992;
Margolin, 2013). Women create new knowledge and images of themselves
in the realm of the creative that lives between the known and the not-yet
known (Fels & Belliveau, 2008).
We used visual practices, collage in particular, in all three sites. Visual
art invites the emotional and visceral engagement of researchers, partici-
pants, and viewers. The imagery becomes a potent tool of communication
that encourages multiple meanings through the inherent symbolic nature
of the art (Leavy, 2009a). In keeping with a constructivist epistemology
(Butler-Kisber & Poldma, 2010), collage is a non-threatening visual form for

novice artists to explore concepts and make tacit meaning explicit. Collage
has been used in art movements as a form of social resistance to counter the
oppressive structures steeped in racist, sexist, and classist ideologies, as well
as to counter the modern notion of a single reality of truth (Butler-Kisber,
2008). Collage places multiple, seemingly incongruent, realities (images)
side by side and invites people to view the discordance. This provocation
has a resistive and transformational capability consistent with feminist and
other critical epistemologies with a strong interest in social justice (Leavy,
2009a). In this study, transformation occurred in the collage-making pro-
cess during which three different groups of women at separate sites were
invited into new and intimate dialogue about their emotional experiences.
At the site involving young women, for instance, the participants began to
offer imagery that they thought might be useful to other group members.
This sharing led to deeper discussion about why a particular image reflect-
ed or failed to reflect their identities. Davis (2008) claimed that “collage,
created from a synthesis of shattered fragments, realized in an emergent,
often randomized composition, arrives at meaning in a very different way
– accidentally, capriciously, provocatively, tangentially” (p. 250).
Other visual arts incorporated into our study, including painting, provid-
ed a visual representation of where the racialized women saw themselves in
relation to others and how they either connected with or felt disconnected
from broader systems. Through visual representation and narration of the
meanings of those representations, these women used images such as being
trapped within a bubble or being on a boat out on a lake to explore mar-
ginality and loneliness.
Gesture and improvisational movement practices were also used in the
sites involving racialized women and older women. The goal of inner-
directed movement is to perpetually focus, without interpretive or critical
thought, on feeling, sensations, and desires as they spontaneously mani-
fest in bodily movement (Wyman-McGinty, 2007). The movement may be
guided by themes and/or structural qualities. The embodied creative pro-
cess, with its symbolic expression, can sufficiently invite and safely contain
feelings while integrating personal narratives and illuminating people’s
connections to the external world (Margolin, 2013). Participants are rap-
idly invited to view themselves as the primary authority on their thinking,
feeling, and dancing without knowing ahead of time the forms that their
impulses or intuitions might take. This expression of self, which occurs in
a safe, accepting atmosphere, invites others to open themselves, and holds
great potential for rich and layered responses, in group format, to inquire
into mental health and recovery (Margolin, 2012). In the group involving
older women, movement and gesture were practised as symbols of partici-
pants’ recovery experiences. Each participant posed in a position that she
felt best presented a picture of the beginning point of her recovery process,
followed by a pose that best represented her recovery today. These visual
depictions, captured in photography, spoke profoundly to the dichotomy
experienced on the journey between illness (often in the psychiatric ward)
and recovery. Gestures of illness included covering the face and body with
arms and crouching down, which the researchers perceived, and the par-
ticipants reported, as hiding, shame, and self-soothing. Gestures of health
and recovery included large, wide, reaching, bright-eyed postures that the
researchers perceived, and the participants reported, as expressions of joy
and confidence. The body-movement component of the sessions evoked
memories and emotional responses. Although some participants were vis-
cerally transported back to a painful time in their recovery journey, they
reported that it felt cathartically necessary to continue the movement
experience and ventilate their emotions, even when they were invited to
stop. Many participants reported that inquiring into significant aspects of
their recovery through dance provided them with “spiritual release” and a
sense of “freedom.” While great care and a working knowledge of the emo-
tional connections to the body are necessary to lead inner-directed move-
ment in a research setting, this movement has the potential to synthesize
undeveloped insights and bring them to the surface.
The art-making process seemed to enhance reflection and provide new
insight for participants by creating a safe space in which they could ho-
listically and imaginatively reflect on their experience. In the process of
symbolically using keywords and imagery to capture particular ideas, they
made new meaning as affective aspects began to emerge. The imagery pro-
vided participants with a metaphoric language and a safe container. By
making room, through creative means, for expression that is often silenced
and oppressed, arts-based research allows reflexivity and reveals how so-
cial inequities for female health consumers emerge from an intersection of
social factors, including gender, but also age, class, and racialization. Best
practice requires that our understandings come directly from lived experi-
ence, and lived experienced cannot be understood through rational modes
of language alone, such as traditional qualitative interviewing. Embodied
and affective experience must be a part of making meaning that captures
the ways in which intersecting social locations affect women’s lives.
In our study the resulting visual data also assisted researchers in their
analysis. The participants’ photographed gestures and visual art pieces were
integrated to deepen researcher engagement with the data and to foster

thematic connections.
Advancing Intersectional Conceptualizations of Recovery
The findings from this multi-site study advance the understanding of the
recovery experiences of women who have been diagnosed and have re-
ceived mental health services for serious mental illness. Consistent with the
broader scholarship, the recovery experiences of the women participating
in the study reflected a process whereby individuals come to understand
themselves and to live their lives beyond the confines and limitations of the
mental illness. Our findings highlight the relevance of a historical perspec-
tive and suggest that recovery experiences of individuals are closely tied to
the way in which recovery is understood and institutionalized within the
broader community and health systems. For example, all the young women
in early intervention programs had received in-patient mental health ser-
vices, but, unlike the older women, they did not convey their recovery as
a process of developing activism in response to long-term and oppressive
forms of institutionalization. This understanding was only made possible
through an intersectional approach that included age as an important di-
mension of inquiry. This is not to say that the experiences of young people
with mental illness do not include structural experiences of powerlessness
and exclusion, but rather that, in contemporary mental health systems
where recovery has been embraced as a guiding vision, there is perhaps less
likelihood that it will take the form of long-term institutionalization. This
is not, however, a point without some complexity, because recovery-oriented
care is not the only driving factor for deinstitutionalization; economic
pressures are also involved, and questions arise about the institutional-
izing of community spaces through community treatment orders (Kidd,
McKenzie, & Virdee., 2014).
In addition, the findings suggest the importance of a life-course perspec-
tive on recovery, in which developmental life experiences are recognized
within personal experiences of mental illness and recovery. The artistic
products and reflections of the younger women were focused on common
developmental milestones related to the dreams for their future adult lives,
including finishing high school and vocational training, establishing inti-
mate and long-term relationships, and setting up their own homes. These
were grounded, however, in very current struggles related to the newness of
and lack of familiarity with their illness experiences, with respect to both
managing the illness and understanding the meaning of these experiences

for their future lives. For these younger women the trauma of the illness
and the meaning of its implications might be described as rawer and more
unprocessed than they were for the older and racialized women.
The study also contributes to our understanding of gender-specific expe-
riences of recovery. Findings suggest that gender-based expectations may
influence recovery experiences. In the group of young women, for example,
the social expectation that women are not prone to aggressive behaviours
might help to explain the lack of attention that service providers and others
in the social network give to their potential for aggressive thoughts. Dean
and colleagues (2007), in their study of aggressive behaviours at entry to
first-episode-psychosis treatment, indicated that, although male gender is
linked to violence in the general population, the gender gap narrows when
focusing on those with serious mental illness. Even among our participants
there was surprise at the level of physicality that they could experience in
the context of acute mental illness.
Another intersection that emerged was that of gender and cultural group
expectations. The group of racialized women highlighted that their expe-
riences of creating a meaningful life beyond the illness included negotiat-
ing the limitations and constraints posed by the illness, the discrimination
within mental health services, and, in addition, the expectations of their
cultural networks and families that both defined their primary role as car-
ing for others and controlled their opportunities and resources accordingly.
Their recovery narratives in the creative-arts exercises focused on their ef-
forts to rebel against and break free from these constraints. This refusal to
be silenced was explicitly linked to recovery from mental illness.
The research findings also contribute to our understanding that the
disempowerment associated with gender and its intersections can be ex-
perienced within treatment settings, particularly tertiary-care treatment
settings, which are purported to be places of safety, care, and effective
treatment. Participants highlighted, for example, how the rules and proce-
dures related to security and control can be applied without sensitivity to
or respect for gender-related experiences of safety and dignity. Our findings
are similar to those of Schön (2010), who found that, compared to men,
women were more likely to experience in-patient care as coercive and as
engendering feelings of helplessness. Recently it has been noted that little
attention is paid to developing recovery-oriented care within tertiary-care
and in-patient settings (Chen et al., 2013), and this interest is beginning
to extend to the need to tailor these services so that they are sensitive to
individual needs and experiences related to gender, ethnicity, and culture

(Battersby & Morrow, 2012).
Finally, the study highlights how the central role of women in creating
places of family and community is compromised in the context of serious
mental illness, an insight that, up to now, has been poorly developed in
conceptualizations of recovery. To date, much of the dialogue related to
roles and occupations in recovery has focused on work, school, community
participation, and financial autonomy. Studies suggest that men in recovery
are perhaps disadvantaged because of the expectations placed on them for
performance in these domains, both for their own well-being and as family
and social contributors (see, for example, Schön, 2010). Yet, for the women
in our multi-site study, much of the discourse related to roles, and contribu-
tions focused on their sense of themselves as creators of family and com-
munity life and on the extent to which these roles and contributions were
compromised in the context of serious mental illness. This damage took
many forms, including the loss of children and, in some cases, actions to
re-engage with adult children. Questions related to the potential for child-
bearing, parenting, exclusion, and even abandonment by families arose.
Where cultural values placed restricting expectations on women’s participa-
tion in family, this was magnified in the context of the illness experience.
For the women in our study the course of recovery involved an active pro-
cess of reconciling identity and developing potential within these important
and valued social roles.
Several limitations to our multi-site study must be considered. Although
we engaged distinct populations of women at each site, this study was limit-
ed by the lack of attention within the study design and analytic processes to
the influence of place on recovery experiences and in particular to the ways
in which place intersects with other aspects of identity. Another limitation
is that the three groups do not capture the diversity of experience among
the women with mental health problems in Canada. Additional limitations
were that the young women’s group did not partake of member-checking
activities, and some participants in the older women’s group may have expe-
rienced enhanced integration of their recovery experience as a result of their
activism work rather than of their involvement with this research. Lastly,
in the Toronto site the cultural backgrounds of the racialized women who
participated were tremendously diverse and may not reflect the even greater
forms of diversity that are subsumed under the moniker racialized. The only
qualifier to this criticism is that services, mainstream socio-cultural con-
texts, and the forms of discrimination that these women faced create some
conditions of commonality. This was reflected in the many commonalities

that arose from the participant narratives in the study. It would be beneficial
for future work to examine the meanings of recovery with specific ethnic
groups in a more in-depth fashion, to include their histories in terms of
refugee or immigrant experiences, to consider the types of mental illness
faced, and to probe the experiences of race and structural inequalities.
Conclusions
This research provides introductory evidence in support of the less promi-

nent but evocative and promising arts-based methods, such as collage,
tableau vivant, and creative dance, as a means to understand the barriers
and the resilience-promoting factors in women’s experiences of recovery.
Further, this research illustrates that resilience-promoting factors are at
play on both personal and structural levels and are mediated by gender,
age, and ethnicity. Arts methods can capture nuanced dimensions of ex-
perience and assist participants in articulating insights that are missed by
more traditional interview methods. As researchers we hope to add to the
legitimacy of widening mental health research to include artistic processes,
not only because it humanizes and dignifies women who live with men-
tal illness but also because there is evidence that more meaningful data
can be gleaned from arts-based methods, analysis, and representation. The
authors recommend that future mental health researchers consider incor-
porating arts-based research in order to methodologically enhance their
work, and including in the research design a peer, that is, an individual
with lived experience and expertise in the arts. Arts methods can deepen
researcher engagement and assist researchers in the analysis phase, an en-
gagement that is often missing in traditional interview and analysis meth-
ods. Only by using methods that allow visceral experience can researchers
and community members truly engage, empathize with, and transform the
people who are recovering from mental illness.
Acknowledgments
The authors extend thanks to Trina Oommen, a graduate student in oc-

cupational therapy, who assisted in locating and summarizing the relevant
research literature, and to Gursharan Virdee, who reviewed an earlier ver-
sion of the chapter. Thanks are also extended to the many women who
participated in this research.
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15 Disrupting Dominant Discourses:
Rethinking Services and Systems
for Women with Experiences of Abuse
l o u i s e g o d a r d a n d v i v i a n e j o s e w s k i ,1
w i t h j i l l c o ry , a l e x x a a b i - j a o u d é ,
lo r r a i n e h a l i n k a m a l c o e , a n d v i c to r i a s m y e
Women whose lives are shaped by experiences of violence and mental

health and/or substance use concerns often engage with multiple systems
and agencies in their attempts to access support and safety. These include,
but are not limited to, health and mental health services, child welfare ser-
vices, transition houses, and the legal system. For example, as Morrow,
Hankivsky, and Varcoe (2004) explain, when women attempt to leave an
abusive partner and re-establish their lives, they are usually dependent on
state-funded organizations and social welfare. Further, as has been docu-
mented in the literature, women with past or current experiences of abuse
tend to experience significantly poorer health and mental health and to
use health care services more frequently (Bonomi et al., 2006; Campbell,
2002; Campbell & Lewandowski, 1997; Wuest et al., 2008). At the same
time, other studies indicate that while women with experiences of violence
may indeed use more health care resources, they also more often experi-
ence significant barriers to having their needs adequately met by health
and social services and supports (Bates, Hancock, & Peterkin, 2001; Tower,
McMurray, Rowe, & Wallis, 2006; Varcoe, 2001; Wuest, Ford-Gilboe,
Merritt-Gray, & Berman, 2003). Barriers are particularly prevalent for
women whose lives are shaped by the intersecting issues of violence, men-
tal health, substance use, and other social and structural inequities (Ford-
Gilboe et al., 2009; Morrow et al., 2004; Varcoe & Irwin, 2004).
Therefore, the provision of health and social services and supports that
constitute safe, responsive care for women whose lives are shaped by past
and/or current experiences of abuse – particularly those living with histo-
ries of mental health and substance use issues, and trauma – presents a
major concern to those who want to support them, including community-
based leaders in women’s health, health authorities, service providers, and
414 Godard and Josewski, with Cory, Abi-Jaoudé, Malcoe, and Smye
community members. In response to these concerns, in 2006 the Woman

Abuse Response Program (WARP), operating in British Columbia, Canada,
out of B.C. Women’s Hospital and Health Centre (the major affiliation for
three authors of this chapter), launched a province-wide consultation ini-
tiative entitled “Building Bridges: Linking Woman Abuse, Substance Use
and Mental Ill Health.” The goals of the Building Bridges initiative were
to (1) increase understanding about the intersections of violence, substance
use, and mental ill health that are grounded in women’s voices and lived
experiences; (2) encourage and foster cross-sectoral dialogues within and
across the areas of mental health, addiction, and anti-violence; and (3)
build individual and community capacity to better support women with
experiences of violence and mental ill health and/or substance use.
The project team collaborated with anti-violence agencies (for example,
transition houses, women’s centres, community-based victim services)
throughout British Columbia to invite women with past or current experi-
ences of abuse and substance use and/or mental health concerns to partici-
pate in locally held focus groups. Self-identified women, nineteen years of
age or older, were eligible to take part. The researchers conducted a series of
fourteen focus groups across twelve communities in the province, with a to-
tal of 102 women. The majority of women identified as White, and a small
number identified as First Nations, Inuit, or Métis, or as belonging to an
ethnic minority group. There was participant representation from all regions
of British Columbia, with 80 per cent of the participants living in urban
communities (mid-size or large), and 20 per cent living in rural and remote
communities. Following an additional consultation with over 460 service
providers (representing eighty-two communities in British Columbia), find-
ings elucidated a range of key barriers and gaps in service provision that
women faced when seeking health and social supports. These barriers and
gaps included the marginalization of women’s experiences of abuse, the
misinterpretation of abuse and its impacts, and fragmented approaches to
violence, mental health, and substance use concerns that required women
to prioritize one concern or need over another (Cory, Godard, Abi-Jaoudé,
& Wallace, 2010; Godard, Cory, & Abi-Jaoudé, 2008). Despite the doc-
umented links between experiences of abuse, substance use, and mental
health issues, women were often denied access to services because of exclu-
sionary policies in the anti-violence, addictions, and mental health sectors.
When women did access services, they often found them to be ineffective
and inappropriate in addressing the complexity of their lives, including
multiple intersecting social and structural inequities such as stigma, dis-
crimination, racism, colonialism, poverty, and housing insecurity.
Disrupting Dominant Discourses 415
The findings of the original Building Bridges initiative support a growing

evidence base that suggests that, despite the expressed intents of the legal,
health, and social services systems (including the anti-violence and mental
health sectors) to enhance women’s well-being and safety, these services
and systems can and do cause harm (Cory et al., 2010; Elliott, Bjelajac,
Fallot, Markoff, & Reed, 2005; Humphreys, Regan, River, & Thiara, 2005;
Markoff, Reed, Fallot, Elliot, & Bjelajac, 2005). This harm occurs when
systems elide the historical and socio-political contexts in which violence
against women occurs, when they fail to address or even name the social
inequities that exacerbate women’s distress, and when they overlook the ca-
pabilities and resourcefulness of women to survive and support themselves
and their children productively despite tremendous ongoing adversity.
In 2009 the original Building Bridges initiative was extended in order
to deepen the data analysis, explore how health services and systems of
support interact on the social and structural levels, and understand how
these, in turn, shape women’s experiences of vulnerability and oppression.
During this next phase a unique partnership and an inter-professional re-
search team was established through a seed grant from the Centre for the
Study of Gender, Social Inequities, and Mental Health. The goal of the
grant was to support a secondary analysis of the original women’s focus
group data in order to explore more closely the structural dimensions of
women’s experiences of living with abuse and substance use and/or men-
tal health issues, and women’s ability to negotiate these multiple relations
of power. Spanning different disciplines and bridging academia, health,
and community-based leadership, this partnership allowed research team
members to apply feminist and critical perspectives and expertise in prob-
ing for a deeper understanding of the gathered data. In this way, we sought
to put the analytic spotlight on the interplay of discourses in practice and
their effects on women’s lives, health, and safety.
Our team sought to address a number of questions: How do current
health and social services and supports fit with women’s understandings
and lived experiences of violence and safety? How are myriad social is-
sues, such as poverty and housing insecurity, that are known to curtail the
life opportunities of women with past and/or current abuse and mental
health and/or substance use concerns being addressed? What structures
and processes legitimate, sustain, and reinforce current approaches to pol-
icy and practice, and how do they interact? How do these structures and
processes shape women’s experiences of services and support in ways that
are concordant with wider forms of oppression and domination? Finally,
what kind of knowledge is needed to disrupt these interlocking systems of
structural violence and improve the understanding of, and responses to,
violence against women as a social justice and equity issue?
In this chapter we share selected findings from the secondary data analy-
sis that highlight the complexity of women’s experiences of violence in rela-
tion to the intersecting issues of mental health; substance use; mothering
and poverty within the context of the child welfare and legal systems; the
health and mental health systems; and the anti-violence sector. We show
that opportunities to improve responses to women with experiences of
abuse exist through a revaluing of women’s knowledge and by adopting
and implementing a violence- and trauma-informed framework at the indi-
vidual, social, and structural levels of policy, practice, and education.
Linking Theoretical Perspectives to Women’s Experiences
Our approach to inquiry and research questions has been informed by crit-
ical scholarship that has documented the problematic nature of public pol-
icy and service delivery. Although commonly viewed as neutral and equally
beneficial to all citizens, both policy and delivery are often profoundly ex-
clusionary and embedded in social, ideological, and political forces with
particular consequences for marginalized2 and vulnerable groups. Using,
for example, Aboriginal women’s experiences of leaving and/or staying
with an abusive partner as a starting point for understanding what con-
stitutes accessible, safe, and responsive health and social services and sup
ports, Smye and colleagues (2007–10)3 concluded that women’s experiences
of leaving and/or staying are organized in large part by institutional poli-
cies and practices that are, in turn, informed by intersecting and oppressive
ideologies and structures, including patriarchy, biomedicine, and neo
colonialism. For example, some housing opportunities exclude women who
do not have their children with them; and Indigenous women have their
children removed far more often than do non-Indigenous women – yet
regaining children, for all women, requires safe housing. Similarly, drawing
on their long-standing work with girls and women who have experiences
of abuse,4 Godard, Cory, and Abi-Jaoudé (2008) found that gender-based
violence is routinely framed as an individual problem, which conceals the
social and structural nature of violence against women and leads to solu-
tions or interventions aimed at “fixing” the woman rather than challeng-
ing the powerful impact of dominant patriarchal ideologies on women.
Specifically troubling the attribution of authoritative knowledge, Godard,
Cory, and Abi-Jaoudé (2008) concluded that “the best outcomes for wom-
en result when women are seen as experts of their own experience and are
involved in the development of the supports they receive” (p. 13).
Thus, in rethinking forms of help for women with experiences of abuse,

an analysis of power is essential; power, operating through existing sys-
tems, gives authority to some individuals to whom we attribute knowledge,
including researchers and social and health care experts, while marginaliz-
ing others deemed to lack formal knowledge. Who are deemed knowledge
holders and how power functions when knowledge is produced are key
questions in feminist scholarship and thought (Ramazanoğlu & Holland,
2002), and these also guided our critique, revealing that those who are mar-
ginalized often include the very women who have lived through abuse.
Using feminist theory to re-introduce and re-legitimize women’s lived ex-
periences as a valid form of knowledge thus politicizes the social organiza-
tion of knowledge that underpins current approaches to health and social
services and supports. The alternative truths arrived at through this pro-
cess produce “rupture”’ in the otherwise taken-for-grantedness of “seem-
ingly inclusionary knowledge produced in exclusionary contexts” (Collins,
2009, p. xii). In producing these ruptures, critical feminist inquiries have
been instrumental in shedding light on the ways that dominant ideologies
(for example, patriarchy, biomedicine, and liberal individualism), in their
intersection with a range of gendered medical and socio-political discours-
es, exert their influence on women’s lives and opportunities.
Lavis, Horrocks, Kelly, and Barker (2005), for example, highlight the
importance of the ideological role of the medical model of care and its
discursive practices, which position women as individually accountable for
violence-related symptoms and injuries. In this process of individualizing
accountability, power and gender relations tend to remain unexamined,
and women’s responses to their experiences of abuse, including depression,
anger, and substance use, become misinterpreted by some service providers
as “explanations for why she got into the [abusive] relationship or reasons
she did not leave the relationship” (Shlonsky, Friend, & Lambert, 2007,
p. 348). This has led some scholars to remark with concern on the tenden-
cy of the mental health care system to label women who have experienced
violence with, for example, borderline personality disorders (Proctor,
2007; Shaw & Proctor, 2005), reaffirming long-standing harmful gendered
discourses in the practice of the mental health profession (Burstow, 2003,
2005; Gilfus, 1999; Humphreys & Joseph, 2004; Humphreys & Thiara,
2003; Morrow, 2008).
Attention to how these interactive processes of inequity and differenti-
ation across levels of structure, identity, and representation operate is im-
portant to developing more responsive and safe health and social services
and supports for women with experiences of abuse and mental health and
substance use concerns. As supported by the theoretical literature in this
field, analysis is needed of the various levels at which power operates and
subject formation occurs. For example, the dominance of the medical
model often results in the labelling of women’s behaviour as problematic
(for example, attention seeking, non-compliant), which then shapes the
interactions and ultimately the health care that women receive. The judg-
ments and assumptions of health care providers create additional barriers
for women in accessing relevant and safe services and supports, and fur-
ther add to the stigma faced by women with histories of abuse.
Method of Inquiry and Data Analysis
To examine our research questions, our team applied a feminist critical dis-
course analysis; that is, we brought together critical discourse analysis and
feminist theories with an eye to revealing the discursive social practices
that currently sustain and reinforce gendered health and social inequities
(Lazar, 2007).
In the critical literature a discourse is commonly understood as configu-
rations of ideas that describe the terms of reference in which a social issue
or problem is defined, thought of, and discussed (Jørgensen & Phillips,
2002; Phillips & Hardy, 2002). Discourses can thus be said to contain
dominant ideologies. These “ideological-discursive formations” often be-
come “naturalized” or taken for granted in social institutions, policies, and
practice (Smith, 1987). In this way, discourses (languages and practices)
function as important constitutive forces of social identities, social rela-
tions, and systems of knowledge and meaning (Jørgensen & Phillips, 2002,
p. 67). For example, reflecting on women’s narratives around mothering in
the context of abuse, we see women being held as complicit in the abuse
perpetrated against them and flagged as mothers at risk, instead of being
perceived for their capabilities and for the safety strategies they utilize to
protect and care for their children. Yet, although discourses play powerful
roles in the construction of truth and reality, a “discourse can never be so
completely fixed that it cannot be undermined and changed by the multi-
plicity of meaning in the field of discursivity” (Jørgensen & Phillips, 2002,
p. 28). As in the example above, alternative, conflicting discourses also exist
that, when they are actualized, may challenge and transform the prevailing
dominant discourses.
The aim of critical discourse analysis is therefore to reveal the “dynam-
ics of power, knowledge and ideology that surround discursive processes”
(Phillips & Hardy, 2002, p. 20), or, to put it differently, to explore “how
some ideas, concepts, and beliefs become dominant or accepted as reality”
and what the effects of these processes are (Irving & English, 2008, p. 108).
As a theory, critical discourse has been criticized for lacking “any guide-
lines as to which taken-for-granted understandings are most in need of
deconstruction and in terms of which political criterion” (Jørgensen &
Phillips, 2002, p. 188). To invest critical discourse analysis with a clear po-
litical direction, we put forward feminist theorizing as an appropriate and
relevant perspective to our research topic.
Emphasizing the marginalization of women in the social construction of
reality, and the need to make women and their life experiences visible, fem-
inist theorizing directs us to use women’s lived experiences as the starting
point for identifying and questioning dominant, naturalized understand-
ings, representations, and practices that ultimately maintain and reproduce
gendered inequities (Jørgensen & Phillips, 2002; Lazar, 2007; Smith, 1987).
However, while gender as a discourse and a social structure is undoubt-
edly important for elucidating how the experiences of women and their
perceptions of mental health, social services, and systems of support are
shaped by and are continuous with wider ideological systems, we need not
understand gender as the most important and only axis of oppression. For
example, we found that many women’s experiences of oppression could not
be divorced from their identity as women living in poverty, from their ex-
periences of homelessness and housing insecurity, or from their immigra-
tion status. Rather, as informed by the notion of intersectionality (Collins,
2000; Davis, 2008), we conceive of gender as only one form of oppression
that relies for its existence and operation on a multitude of other systems
of power, such as capitalism, colonialism, racism, and heterosexism.
Our analytical goals were thus to understand and make visible the ways
in which gender oppression and inequities are relationally constituted at
both the discursive and the structural levels, and how these produce rela-
tional differences for women within the context of living with past and/
or current abuse and coexistent mental health and/or substance use con-
cerns. To achieve our goals we applied thematic analytical processes de-
scribed for qualitatively derived ethnographic data (Braun & Clarke, 2006;
Thorne, Kirkham, & O’Flynn-Magee, 2004). First, research team mem-
bers individually coded focus group transcripts to identify preliminary
concepts and illustrative examples that spoke to the factors that shaped
women’s interactions with health, legal, and social service systems. Second,
the research team collectively analysed these concepts using “comparative
re-coding” (Anderson et al., 2003) to identify recurring, converging, and
contradictory patterns of interaction, as well as higher-level key concepts
and themes within and across interviews. For example, one salient theme
that emerged throughout women’s narratives was women’s experiences of

being disbelieved or seen as un-credible witnesses to their own experiences
of abuse. Next, the team’s collective analysis proceeded to explore emerging
concepts and themes further from the angles of our theoretical perspectives,
analytically linking data and theory. Guided by critical feminist perspec-
tives and an intersectional lens, we paid particular attention to processes
of power – that is, how the problem of violence against women was differ-
ently constructed in women’s various interactions with health, legal, and
social institutions, and how these constructions worked together in shaping
women’s experiences of the harms and benefits of services and supports.
Our team’s inter-sectoral and interdisciplinary background enabled us to
engage in an ongoing reflexive dialogue and deconstruction of the inherent
assumptions and taken-for-granted truths that are routinely enacted within
our own professional disciplines. This varied background also helped us to
recognize the workings of these assumptions in women’s accounts of their
encounters with health and social services and supports. Our analysis thus
engendered what Anderson (1998) describes as a dialogue between emerg-
ing theoretical perspectives and data. Analytically, this required a recursive
process of examination, analysis, writing, and reflection, through which,
by remaining vigilant and attentive to the issue of voice, we were able to
draw distinctions among the researchers’ constructs, the participants’ con-
structs, the research data, and the researchers’ ideological frames.
Exposing Discourses in Action: Insights Gained
We focus on three distinct, albeit intersecting, discourses in the discussion

of the study’s results: expert discourse, pathologizing discourse, and leav-
ing discourse. While these discourses were central to all focus groups, they
also produced relational differences in women’s experiences of vulnerabil-
ity, depending on their intersection with women’s social positioning and
context, such as mental health, substance use, mothering, and poverty. We
elucidate how these three discourses exist institutionally and were relevant
to the focus group participants in relation to their well-being, safety, and
access to mental health and social resources. Rather than feeling support-
ed, women tended to feel discredited, blamed, and silenced through the
actions of the medical and social systems that heavily constrained their
everyday lives. Caught in the intricate web of these institutions, women’s
experiences and responses to violence were increasingly pathologized, di-
minished, and controlled by systems. These experiences had serious nega-
tive consequences for the women’s capacity to re-establish their lives and
the lives of their children.We offer our detailed analysis of each of the three
discourses as follows.
Expert Discourses: Whose Voices Matter?
“The judge said, ‘Oh, it’s a soap opera. You’re pretending it’s a movie.’ They
just didn’t believe me.”
The experience of being a discredited witness to one’s own abuse ran as a

common thread through all focus groups. Women in our study reported a
range of interactions with service providers in which their claims of expe-
riencing abuse were met with deep-seated scepticism, disbelief, and doubt.
These reports take on greater significance when we consider that the wom-
en routinely came into contact with experts, including health and social ser-
vice providers and government and legal agents, as part of their efforts to
leave their relationships and/or move towards safety. Women consistently
described how their voices were silenced or marginalized, while the experts’
constructions of the women’s realities and experiences were preferred. As
one participant put it, “for myself, when I dealt with health care profession-
als, especially when I talked about addiction, my words weren’t of value.
My voice didn’t mean anything.” Similar experiences were reported by oth-
er focus group participants across various service settings, including health
care, housing, and anti-violence services, with the women recounting many
instances in which they were in effect dissuaded by service providers − and
even prohibited − from sharing, as some women noted, their “war stories.”
These interactions silenced women and placed the power in the hands of
health and social service providers as the only persons equipped to speak
with authority.
Institutional acts of silencing reveal power differentials between service
providers and the women in this study. Service providers are positioned as
having full access to expert knowledge. The positioning is differently en-
acted depending on the distinct and fragmented expert discourses that un-
derpin the dominant policy and practice frameworks of various sectors. In
the health care context, for example, health providers, such as physicians,
can and do draw on their medical expert status in defending the claim that
they are not responsible for dealing with issues of abuse, “which is often
seen by health providers as a non-medical or non-health issue” (García-
Moreno, 2002, p. 1511). Indeed, several studies show that physicians admit
to shying away from asking women about experiences of abuse (D’Avolio
et al., 2001; Reid & Glasser, 1997; Sugg & Inui, 1992; Sugg, Thompson,
Thompson, Maiuro, & Rivara, 1999; Waalen, Goodwin, Spitz, Petersen,

& Saltzman, 2000), citing, among other reasons, a lack of “scientifically
assessed and effective interventions” and “frustration at the perceived
lack of responsiveness of patients to their advice” as barriers to engaging
with issues of abuse (García-Moreno, 2002, p. 1510). In other contexts,
professionals capitalize on their expert power by claiming to know best
what women’s needs are, even when this knowing runs contrary to what
women want or believe is best for achieving or maintaining safety (García-
Moreno, 2002). As a result, some of the most pressing health concerns of
women who have experienced abuse from a partner, including the link be-
tween experiences of violence, mental health, and substance use, often re-
main unacknowledged, unaddressed, and decontextualized (Humphreys
et al., 2005). Similarly, interactions with experts often fail to address the
multiple intersections that influence women’s lives and life opportunities,
such as safe and affordable housing, poverty, lack of social support, stig-
matization, and the ongoing, often increasingly intense, frequent abuse
after leaving (or the risk of this) (Horrill & Berman, 2004).
In our study the valuing of expert knowledge was particularly salient in
women’s interactions with courts concerning issues of custody and access,
as well as with the child welfare system. In these encounters women’s expe-
riences of abuse were routinely discounted and invalidated. Their suffering
was made invisible. One woman narrated her experience after having left
her abusive partner: “But where I went was even worse than where I left.
And the hardest part for me was they didn’t believe me … the courts didn’t
believe me, the judge didn’t believe me. I had to pay for supervised visita-
tions, because family services didn’t believe me. No one believed that what
I was telling them, what was going on in my home, was true. So I had to
provide the necessary steps to keep my kids safe.”
Here the power of the judge to accept the woman’s “truth” rested on his
expert status vis-à-vis the woman. The onus was on the victim of abuse to
prove to the court the existence of violence towards her and her children.
Similarly, several more women with extensive abuse histories said that it
was not uncommon for them to be blamed for fabricating stories or dis-
torting facts. This blame supports long-standing gendered representations
of women that suggest that women are in some way complicit in their
own abuse and/or simply irrational. Our findings thus echo other research
that has shown that women are often placed in a double bind – held ac-
countable both for the abuse they experience from their partners and for
the safety and protection of their children (Strega et al., 2008; Varcoe &
Irwin, 2004). In essence, this bind diminishes and ignores all perpetrator
and societal accountability, and stigmatizes the women who in this pro-
cess are often judged as “bad mothers” by child-protection workers for
neglecting or failing to protect their children (Johnson & Sullivan, 2008;
Kantor & Little, 2003; Mulkeen, 2012). Speaking to an experience shared
by several women in our study, one participant discussed the consequenc-
es of such social and structural stigmatization as follows: “I had said to
[the Ministry] ... ‘Even if you put me on a bus or whatever, I will pay ev-
erything back. Just get me and my kids out of here.’ They told me to get
a job and do it on my own. ‘If you want out, you do it on your own.’ [By]
the end of the relationship the Ministry had removed my children, saying
that I neglected to meet their safety requirements, which [I found] was re-
ally … ignorant. They made it worse by taking my children, and it was six
months that my children were in care before I got them back.”
Women’s accounts of the loss of custody, and the persistent fear of hav-
ing their children removed by child welfare agencies, must be understood
in the context of how gendered discourses surrounding mothering become
relationally re-enacted within the legal and child welfare systems through
constructions of the “expert,” who, as the ultimate authority enabled to
speak the truth, holds the power to discredit women as their own witnesses
of abuse. Other women in the focus groups spoke of their great efforts to
protect their children, even within the context of staying with an abusive
partner. However, the woman’s agency tended to be grossly ignored and
distorted within the narrow confines of legalistic expert discourses. These
distortions exacerbated women’s experiences of social suffering and vulner-
ability by negating the women as competent mothers and credible witnesses
to their experience. In their role as mothers, the women in our study de-
scribed the institutional regulations of the child welfare and legal systems
as blaming and punitive rather than supportive. In several cases a restric-
tive regime of control and surveillance that authorized experts to determine
the capacity of a woman to mother, often without acknowledgment of her
practical realities, further constrained her agency. In the accounts of these
women, the felt or perceived stigma resulting from institutionalized expert
discourses in intersection with other social discourses acted as an impor-
tant social determinant for women’s mental health and well-being that also
operated as a structural constraint on women’s ability to access resources
and enact agency. One woman described the way in which her agency with
regard to her sick child was constrained by perceived stigma: “My son had
a hole in his stomach. When he was born he was 8.6 lbs; when we left the
hospital he was 8.3 lbs. And because I had a red flag on my chart … because
my girls weren’t with me, and I was overweight … they said, ‘Well, you are
a poor parent.’ I was timid, I didn’t know what to do … None of the doc-
tors would listen to me about my concerns about my son. He wasn’t gaining
any weight. But because I had a red flag, no one believed me. [The health
centre] put me in touch with another doctor who listened to what I had to
say and did some tests and realized that there was a hole. If they had closed
it up months and months earlier, it would have saved him and me from so
much pain.”
As noted by Kleinman, Das, and Lock (1997), “the trauma, pain and
disorders to which atrocity [like the treatment of the woman above] gives
rise are health conditions; yet they are also political and cultural matters”
(p. ix). When women are viewed abstractly, as divorced from the social
forces and contexts of violence that shape their lives, expert discourses
contribute to the depoliticization of violence against women. As a conse-
quence, women’s experiences of abuse and oppression remain too often un-
acknowledged, their suffering invisible, and their needs unmet (Hamilton,
2010; Humphreys et al., 2005).
Pathologizing Discourse
Going to my doctor, I used to break down and cry in his office, and he’d say,
“You’re depressed.” “No, I’m just sad. I’m just going through a really sad
time.” He said, “There’s a name for that. It’s depression.” Finally he con-
vinced me I should go on an anti-depressant. Like that was going to stop me
from being beat up.
Despite the over-representation of women who have suffered violence in

the population of mental-health-service users, and their expressed need for
mental health support (Bonomi et al., 2006; Golding, 1999; Humphreys &
Thiara, 2003; Jones, Hughes, & Unterstaller, 2001), our findings show that
the medical model on which psychology and psychiatry base their practices
often alienates women. Although the women in our research spoke of se-
vere emotional distress that often fit the pattern of symptoms associated
with the diagnostic categories of depression, post-traumatic stress disorder
(PTSD), and other psychiatric diagnoses, most of the women were more in-
clined to use non-psychological and non-medical language to describe their
emotional and mental distress. They also more often ascribed the cause of
these “symptoms” to abuse. When the women did use medical language,
it was most often in reference to the psychiatric diagnoses that they had
received as a consequence of seeking professional support in dealing with
the constraints of violence on their lives. One participant said, “Myself,
being abused, I have PTSD. I was actually diagnosed with bipolar. I had no
idea.” This comment speaks to the complexity of women’s experiences with
mental health diagnoses. While this woman had normalized a diagnosis of
PTSD, which she saw as simply what happens to women who experience
violence, her response to being diagnosed with bipolar disorder evoked, if
not resistance, at least surprise. Regardless of whether or not the diagnosis
was a legitimate fit within the confines of psychiatry, this woman’s experi-
ence draws attention to the findings of several authors who have noted the
problematic tendency of the mental health care system to individualize so-
cial and political problems and to pathologize human conditions of social
suffering (Josewski, 2012; Morrow, 2008; Morrow, Frischmuth, & Johnson,
2006; Rossiter & Morrow, 2011; Smye, Browne, Varcoe, & Josewski, 2011).
In response, Humphreys and Thiara (2003) warn that “the slippage be-
tween acknowledging and intervening in the private pain created by vio-
lence and then re-constructing this as individual pathology is only a label
away” (p. 219).
The emerging discourse surrounding PTSD has found strong support
among some feminists. For them, PSTD offers an alternative to the tradi-
tional victim-blaming stance and hegemonic clinical practices of labelling
women’s responses to the traumatic experiences of violence. Unlike these
traditional practices, which pathologize and stigmatize women by using
labels to mark individualistic psychiatric and personality disorders (for
example, borderline personality disorder), the diagnosis of PTSD makes
explicit the causal relationship between women’s experiences of abuse and
present mental health symptoms (Burstow, 2005; Gilfus, 1999; Humphreys
& Joseph, 2004; Morrow, 2008). In this vein, Herman (1997) contends that
“knowledge is power. The traumatized person is often relieved simply to
learn the true name of her condition. By ascertaining her diagnosis, she
begins the process of mastery. No longer imprisoned in the wordlessness
of the trauma, she discovers that there is a language for her experience.
She discovers that she is not alone; others have suffered in similar ways.
She discovers further that she is not crazy; the traumatic syndromes are
normal human responses to extreme circumstances. And she discovers,
finally, that she is not doomed to suffer this condition indefinitely; she can
expect to recover, as others have recovered” (p. 158).
Yet, as Humphreys and Joseph (2004) remind us, “the politics of PTSD
applied to women’s experiences of violence and sexual assault do not stand
outside the development of PTSD as a concept recognized as a diagnostic
category within the Diagnostic and Statistical Manual of Mental Disorders
(DSM) framework” (p. 560). That is, although PTSD has brought the
significance of the traumatic nature of women’s experiences of suffering

violence into psychotherapeutic discourses, and while it has contributed to
the normalization of trauma discourse in relation to violence against wom-
en, “the term ‘disorder’ also expresses a notion of pathology, writ large by
its inclusion within the DSM framework” (Humphreys & Joseph, 2004,
p. 566). For example, reflecting on her experience of being pathologized,
the following participant described how the diagnosis of PTSD represent-
ed just another label in a long list of psychiatric disorders that she had had
attributed to her: “I have been diagnosed with PTSD. I had been diagnosed
with OCD … And at one point it was call MPD and now it’s called DID.”
To borrow from Gilfus (1999), the price that women have had to pay
for the benefits of DSM legitimization of PTSD has been high – some
scholars say too high (Burstow, 2003, 2005; Humphreys & Joseph, 2004).
Feminist sociologist Dorothy Smith (1990) argues that the institutional
practice of psychiatric diagnosing must be understood as part and parcel
of a regime of ruling. Within this regime the DSM functions as the key
text that mediates the application of diagnoses. From this point of view
the medical vocabulary through which individual pain is named, particu-
larly when it involves DSM terminology, is not a neutral tool. Instead,
the vocabulary performs an important regulatory function in the social
construction and medicalization of women’s experiences and responses to
violence by “organiz[ing] what can be said and done” (DeVault & McCoy,
2002, p. 765).
According to Conrad (1992), medicalization occurs on the concep-
tual, interactional, and institutional levels, both within and beyond the
medical profession; it is best understood as the process of using a medi-
cal model to order and define problems. Consistent with this biomedi-
cal ideology, which underpins psychological and psychiatric frameworks
for understanding mental health problems, trauma, and substance use (for
example, the DSM), the tendency of mental health systems has been to
systematically marginalize ideas about social support, as well as the con-
textualized, culturally inclusive, and strengths-based understandings of
violence against women, in favour of dominant biopsychiatric, individu-
alistic treatment models and interventions (Burstow, 2003, 2005; Gilfus,
1999; Humphreys & Joseph, 2004). As a result, Humphreys and Thiara
(2003) contend, a woman’s “mental illness” becomes the exclusive focus
of treatment with little or no acknowledgment of the abuse context. The
effects of this are exemplified by the description of one study partici-
pant, who said she felt perpetually inhibited in expressing the truth of her
life: “I could never speak completely freely or anywhere freely about the
relationship. All that was being dealt with was the mental health issue. But
the mental health issue had so much to do with the relationship issues.”
This participant’s words demonstrate the therapeutic limitations of men-
tal health practices that seek to explain and treat the psychological aftermath
of violence as a set of symptoms, which are understood out of context, us-
ing the narrow lens of psychopathology. Another participant touched on
this point in the following: “But a lot of women are labelling it as depression
when they’re actually grieving. And they’re grieving all the losses, they’re
grieving not being with a spouse that they expected to retire with, they’re
grieving because they’ve lost their children, they’re grieving because of a
huge number of things. Yet, grieving after leaving a violent relationship is
really not talked about out there.”
Here the participant speaks to the subjugation and marginalization of
women’s voices when their subjective experiences are reworked to fit a
dominant script of the helping professions and systems of support. Our
findings indicate that for many women psychiatric diagnoses generally do
not capture women’s actual experiences and may add to a sense of vulner-
ability, by first seizing the women’s power and authority to name and speak
about their own experiences, and then ushering them towards treatment
choices that they may not want or experience as comfortable. Worse, those
treatment options may invalidate women’s experiences by labelling them as
individual pathology, even as their pressing needs for safety, shelter, and
financial and legal assistance remain unaddressed. In addition, the impact
of stigma attached to diagnoses of mental illness may compound the ex-
periences of stigma and discrimination already faced by victims of abuse.
Ultimately, being pathologized through diagnosis can re-enact what one
participant described as the “abuser’s mantra,” that is, the male claim that
the woman’s “craziness” caused the abuse in the first place. In this way, be-
ing pathologized can prop up both the historical discourse of mental illness
as madness and the discourses of gender that define women as irrational
by nature.
Leaving Discourse
“They just said, ‘Okay, end the relationship, go your separate ways, and get
treatment for your violence.’”
The notion of leaving as the dominant normative ideal underpinning health

and social services and supports, designed to help women with experi-
ences of violence, rests on two interrelated key assumptions. First, leaving
is construed as the most rational choice for a woman experiencing abuse

in a relationship (Baker, 1997; Barnett, 2000). Second, it is assumed that
the act of leaving an abusive partner will stop the violence (Barnett, 2000;
Hamilton, 2010). Although these taken-for-granted assumptions are rare-
ly questioned, our findings show that they can and should be contested.
In fact, both assumptions are decontexualized and overly individualistic
(Keeling & Van Wormer, 2012; Sandel, 2003). Women in the focus groups
expressed significant fear of physical harm and ongoing abuse to themselves
and their children by their abusive partner if they left. As the following par-
ticipant points out, this often makes leaving very difficult or impossible. “I
heard people say that you make your own choice; you can do whatever you
want. And to an extent I agree, but when you make that choice, you and
your children could be killed if you do it, so you choose not to. To an extent
that choice is made for you.”
Despite the reality of the extreme dangers of leaving, women reported
that access to many services and supports, such as shelters and custody
rights over children, tend to be offered on the condition that the woman
cease all contact with her abusive partner. She must leave and stay out of
the abusive relationship. This requirement was experienced as highly prob-
lematic. Many women said they were often not in a position to control
those decisions: “It’s really difficult, because I remember when I was in an
active abusive relationship, it was hard to get out … It was hard to go to a
place alone, where he wasn’t constantly following you or having people spy
on you. Where you feel safe.”
The effects of institutional practices that enforce leaving in exchange
for help were often compounded among participants by a stance that con-
structs leaving as a moral obligation of women with children. This moral
discourse trades in stereotypes of the women experiencing abuse as being
mentally disordered, and legitimizes formal and informal theorizing that
pathologizes women (Lapierre, 2010; Leisenring, 2006). The discourse of
leaving thus becomes a common axis on which both expert and patholo-
gizing discourses turn, to devastating effect. One woman summarized it:
“Asking for help – as soon as you ask for help – boom! They take your kids.”
One key finding of our analysis, then, is that the uncritical enforcement
of leaving as the ideal for women in abusive relationships needs to be
troubled. This finding is underscored by the intersecting social and struc-
tural constraints that women described encountering in everyday life and,
in particular, when leaving. Poverty, financial dependency, housing inse-
curities, and unemployment all acted as significant barriers in women’s
experiences with respect to leaving. “[Leaving]. That’s a huge thing. When

you’re coming out of this ... If there was some way ... Who the hell can
afford $900 a month when you are single? If there was some kind of set up
[that] when you leave the transition house [you go into] low-income hous-
ing, then you can plant your family, afford your rent, get a job, get on your
feet. There’s nothing like that.”
Simplistic ideas about leaving thus fail to take into account the reality
that women’s experiences of abuse often occur within a broader context of
disenfranchisement, such as unstable housing, homelessness, and poverty,
and are continuous with wider experiences of oppression and domination
that are, in turn, linked to the gendered histories of patriarchy, capitalism,
colonialism, and racism (Dick & Varcoe, 2004; Morrow et al., 2004; Varcoe,
2002). For many women, the experience of being poor, insecurely housed,
and lacking support was decisive in returning to an abusive partner. “I am
going back or I am choosing to go back to my husband. The living situa-
tion I am in is basically that there is no way I could afford any other place
to go other than to live with three or four other women in a house ... But I
don’t want to go through it again with a whole lot of new people. It is too
emotionally draining. So I am going to try to go back with my husband and
see what happens there.”
Despite the range of women’s shelters that now exist in Canada, housing
options for women leaving abusive relationships remain limited and transi-
tory in nature, with long waiting lists for affordable long-term housing. As a
result, several women, including the one above, felt that they were often left
with no choice but to return to their abusive partner. This situation had pro-
found consequences for their health and well-being, as another participant
made clear: “I can’t even get into them [low-income housing]. I’m on the list
now. And then I went back to him, and he beat me up again two weeks ago.”
Several women also discussed linkages between the practical realities of
leaving and the societal patterns of cultural valuation. In keeping with the
findings of Varcoe and Doane (2007), we found that within a culture of
victim-blaming, in which blaming is reinforced and maintained by norma-
tive claims about good mothering and individual responsibility, both single
motherhood and economic dependence can produce new stigmatizing dis-
courses and forms of discrimination. These discourses of discrimination,
including the label of “welfare mom,” place mothers who leave their abusive
partner in a uniquely precarious situation of vulnerability, stigma, and social
exclusion. The following focus group excerpt illustrates the stigma experi-
ence of a single mother who was trying unsuccessfully to secure safe market
housing: “I’ve had so many doors closed in my face because I was a single
parent. People would not let me rent a house because I was a single parent.
People would not let me rent because I was on welfare and a single parent.”
Another participant provided a slightly different insight into another
experience of inequity and oppression, based on the co-constitution of
gender, class, social positioning, and culture: “When a woman becomes
a widow or victim of domestic violence, [she] has to go through separa-
tion and divorce. Basically she is expected to become dependent on [her]
brother or brother’s wife. Basically you become dependent on your own
family. And … it is almost very close to becoming a slave ... Basically as
a woman you don’t have the freedom to express your desires and wishes.
Like you lose it. Even though you separate and all that, you lose your
freedom of making your choices.” In this woman’s experience, leaving an
abusive relationship was complicated by her particular socio-political and
cultural context.
Furthermore, leaving the relationship is not always what women want
(Baker, 1997; Magen, 1999). Yet, as the following woman points out, “there’s
no support that tries to keep the couple together.” Women discussed the
complexity of leaving when the abuser was also the father of their child or
children, particularly given the value that both women and legal institutions
place on the father-child relationship. For example, one woman described
making enormous personal and financial sacrifices to enable her children to
stay in touch with their father: “Because the judge didn’t believe me, I had
to pay for family services access. They wouldn’t do the provisions for me, so
I had to go to work so I could pay for the supervision for my kids so they
didn’t get hurt when they were with their dad. Paid supervision. And it was
just like one obstacle after another, it didn’t stop, it didn’t stop … and I fi-
nally managed to get everything in line. And my kids to this day don’t know
that their father abused me; I won’t let them. I don’t feel that it’s beneficial
to tell them now; it will just cause them pain because they finally have a re-
lationship with their dad.”
Similar to findings by several authors (for example, Keeling & Van
Wormer, 2012; Sandel, 2003), in our research we found that when health
and social services impose leaving as the singular solution and moral im-
perative, reaching out for support often poses significant risks of harm.
A decontextualized understanding of leaving makes invisible the ways in
which the meaning and experiences of leaving intersect with the cultural
and economic dimensions of women’s lives to create new forms of violence.
Institutional practices, including those of service agencies that ignore the
complexity of leaving, subject women to moral judgment and take their
struggles with leaving as proof of individual failure and incompetence. As

a result, depending on their social locations, the women’s experiences, be-
haviours, and needs are subject to complex institutional reinterpretations
that legitimize paternalistic, judgmental, and often coercive treatment that
ultimately undermines women’s agency and produces a myriad of negative
outcomes for women and their children. Addressing the material barriers
to leaving among women who experience partner abuse, such as a lack of
safe and affordable housing and inadequate levels of social welfare, is not
enough. We must also consider the public stigma directed at single mothers
and victims of abuse, and the harms that emanate from the ways in which
services and supports are offered.
Implications for Policy and Practice
Our research elucidates the harms that women with experiences of abuse
encounter in their interactions with services – regardless of the intent of
service providers and policymakers. A key finding of our research is that
gender-based violence is not just an intra- or interpersonal experience;
rather, harm has an ongoing presence in women’s lives that extends beyond
individual relationships to the disparate power relations within health care
and social systems. As our analysis illustrates, dominant discourses fail to
construct violence against women in gendered social and structural terms,
which results in policies and practices that define violence in individualistic
and pathologizing terms and define whether women experiencing abuse are
“deserving” of services, public sympathy, support, and safety. Instead of
supporting women’s safety and well-being and ensuring opportunities to
live violence free, these discourses inform policy and practice and lead to
systems that create further harm to women, trap women in abuse, or thrust
them into poverty and housing insecurity.
In keeping with an understanding of gender-based violence as both a
process and a multiply determined, contextually embedded, and relation-
ally mediated outcome, we put forward a violence- and trauma-informed
framework that responds better to women’s experiences of abuse and men-
tal health and/or substance use as well as their immediate safety concerns.
By adding the notion of violence to the concept of “trauma-informed,”
we draw explicit attention to the intersection of women’s experiences of
violence and social and structural inequities, including structural violence.
Although the emerging notion of trauma-informed supports and services
for women with histories of past and/or current abuse (for example, Elliott,
Bjelajac, Fallot, Markoff, & Reed, 2005) promises to reshape possibilities
for girls and women across the continuum of community-based supports

and helping professions, attendance to the notion of violence is equally
critical for countering the dominant tendency to entrench the focus on the
individual, and particularly on her psyche, as both the problem and the
solution. Without a broad understanding of violence, its myriad physical,
economic, political, and social effects can be overlooked.
Adopting a violence- and trauma-informed framework has important
implications for policy, education, and practice. At the practice level one
way to implement this framework would be to ensure that care and so-
cial supports are offered from a stance that frames women’s experiences of
abuse (including leaving experiences) in relation to the contextual features
of women’s lives, by understanding women’s fears about leaving an abusive
partner within the context of gendered poverty, stigma, and discrimina-
tion, and by responding with a wide range of services that could be offered,
versus viewing and judging those issues from an individualistic perspec-
tive. Taking such a structural lens to women’s experiences of staying in or
leaving abusive relationships would also make it necessary for providers to
act upon what women identify as their most immediate concerns, such as
safety; securing safe and affordable housing, income assistance, or employ-
ment; and coping with issues related to child welfare, custody, and access
(Dell, 2012). This would mean a re-casting of the role of professionals
from experts to advocates and change agents who are willing to listen to
women’s experiences and engage in collaborative and joint decision-making
processes. In this way a violence- and trauma- informed model supports a
strength-based approach to care that challenges practitioners to consider
how to integrate into their current practice anti-oppression, feminist, and
other critical approaches to conceptualizing women’s experiences and re-
sponses to violence and trauma, such as substance use and mental distress.
For example, if what is valued are the approaches to service delivery that
acknowledge the impact of violence (including structural violence) and
trauma (meaning historical, intergenerational, emotional, and physical
abuses) on women’s mental health and substance use issues, then ser-
vice delivery would be organized in ways that reflect that understanding;
outreach and advocacy would be a priority; and integrated services may
be more highly valued (and resourced). By integrated services, we mean
services that include interdisciplinary teams that build alliances between
different service sectors, such as the legal system and the child welfare sys-
tem; mental health and addictions; and the wider health and social service
sector, including housing, anti-violence, and employment services.
Providing integrated health and social services to women that align with
the espoused values of a violence- and trauma-informed model of care,
however, cannot be achieved without educational reforms and profes-
sional skills development that teach helping professionals and policymak-
ers the ways in which often well-intended policies, programs, and practice
guidelines inadvertently re-harm women, particularly those whose lives are
shaped by structural inequities. Considering, for example, the experience of
the woman who was told by the judge that her account of abuse was noth-
ing but a “soap opera”; if what is valued is explicit acknowledgment of the
social and structural inequities that shape women’s disproportionate experi-
ences of gender-based violence and trauma, the “rightness” of such judicial
decision-making and related policy decisions would be ethically unsustain-
able. Instead, a call for a transformative shift from the current emphasis on
management and control to a commitment to create safety and a range of
systems of support for women and their families would be warranted.
Embracing relational thinking and practice is challenging because it calls
for vulnerability. As Smye and colleagues (2010) explain, biomedicine, as
the dominant tradition in the helping professions, continues to instil a fear
in many service providers that they are vulnerable without professional
boundaries and distance from their clients. In addition, many providers feel
simply overwhelmed and helpless in the face of women’s experiences of
abuse, mental health, and substance use. To overcome this fear, training
must start from a deep understanding of women’s experiences of abuse
in order to engender empathy and compassion rather than judgment and
harm. Next, it would require practitioners to engage in a relational un-
derstanding of their own social positioning in intersection with social and
structural systems of oppression.
At an organizational level, change processes can be time consuming and
difficult and may benefit from the development of a violence- and trauma-
informed tool-kit. Such a tool-kit would help organizations to develop,
implement, and evaluate organizational change strategies for incorporat-
ing violence- and trauma-informed principles into the organization’s poli-
cies, procedures, and interactions with women and their families. Although
any such tool-kit needs to be adjusted to the particularities of organiza-
tional contexts and needs, a violence- and trauma-informed tool-kit could
serve as a useful road map for identifying the iterative phases and differ-
ent axes of organizational transformation. For example, drawing on the
work of Tina Lopes and Barb Thomas (2006) and others, organizational
change requires working with members at all levels of the organization,
including front-line staff, managers, administrators, directors, and unions.

This process, broadly speaking, can be divided into three overlapping
phases: (1) In keeping with a violence- and trauma-informed lens, the aim
of the first phase would be to generate dialogue within the organization
and provide training where needed in order to gain a better understand-
ing of violence and trauma in women’s lives, their impact on women’s
life opportunities and well-being, and the multiple ways in which women
resist and cope; (2) in the second phase the focus could then shift towards
promoting an organizational understanding of how dominant discourses
operate in and through organizational structures and processes, and of the
impact that this has on women’s experiences of care and well-being; and
(3) the insights gained from such organizational self-assessment are critical
for the third phase of organizational change, which is characterized by the
development and implementation of specific strategies and responses that
are aligned with violence- and trauma-informed principles.
Overall, organizational change requires ongoing commitment to a pro-
cess, which includes ongoing reflexivity, dialogue, and evaluation. To guide
and facilitate this process, a violence- and trauma- informed tool-kit should
offer a variety of substantive case studies that include narratives and stories
told by women themselves, to link theory, practice, and lived experience.
In addition it should include self-assessment tools, and critical dialogue
questions to help participants clarify underlying assumptions and values.
Organizations do not need to reinvent the wheel; through applied case ex-
amples of social justice work, tool-kits can offer organizations concrete ex-
amples of how to integrate violence- and trauma-informed principles into
policy and practice.
Although a number of trauma-informed tool-kits have been developed
(see, for example, Guarino, Soares, Konnath, Clervil, & Bassuk, 2009;
Institute for Health and Recovery, 2012; Jean Tweed Centre, 2013), the au-
thors are not aware of the existence of a violence- and trauma-informed
tool-kit. As we have argued, a narrow focus on trauma omits women’s ex-
periences of systemic oppression and structural violence and thus is not
enough to truly promote health and safety for women who live with histo-
ries of abuse, and may in fact risk re-traumatizing women and compound-
ing existing harms.
At a structural level a violence- and trauma-informed framework high-
lights the need to shift the public and institutional gaze beyond a narrow
focus on the psychological effects of current and/or past experiences of
abuse to a relational understanding of women’s health and support needs.
With an emphasis on structural rather than atomized, private explanations
and solutions for gender-based violence, a violence- and trauma-informed

framework situates women’s experiences of violence within multiple op-
pressions, and highlights perpetrator and systemic social accountability
for addressing violence against women as a human rights and social jus-
tice concern.
In the pursuit of social justice and equity, merely recognizing that struc-
tural inequities exacerbate women’s experiences of violence and limit their
opportunities to achieve safety and well-being is not enough. Ensuring
that women, including those who remain in an abusive relationship, have
access to a broad spectrum of supports – such as educational and employ-
ment opportunities, peer support and women’s support groups, outreach,
advocacy, and ongoing material support (for example, food, transporta-
tion, childcare) – is essential to truly help, rather than harm, women and
assist them in re-establishing their lives. As we have outlined, the process of
leaving an abusive relationship is complex and in many cases is not a viable
option, owing to increased risks, economic inequities, and housing insecu-
rity. Access to adequate social assistance rates and safe, stable, affordable
housing cannot be over-emphasized and is fundamental to women achiev-
ing safety and well-being for themselves and their children.
Countering and, ultimately, shifting firmly entrenched social and politi-
cal discourses within social systems may seem an ambitious task; yet by
listening to the women’s voices in this study, we should realize that the solu-
tions for enacting socially just, violence- and trauma-informed policies and
practices are within reach but require our sustained collective will, effort,
and advocacy.
NOTES
1 Godard and Josewski are co-first authors; they contributed equally to

the chapter.
2 Our use of the term marginalization, or marginalized, refers both to the
conditions and processes by which particular populations are affected by
structural inequities and structural violence resulting in a disproportionate
burden of ill health and social suffering, and to peoples’ agency, resistance,
and resilience in the face of these challenges.
3 This work refers to a research project entitled “Aboriginal Women’s Experiences
of Leaving and/or Staying with an Abusive Partner.” The project was funded
by the Canadian Institutes of Health Research (2007–10). Smye served as the
principal investigator, and Josewski as the research manager. Co-principal
investigators included Annette Browne, Madeleine Dion Stout, and Colleen

Varcoe. Co-investigators included Marilyn Ford Gilboe, Lorraine Davies,
and Nadine Caplette.
4 See, for example, J. Cory, L. Godard, A. Abi-Jaoudé, and J. Wallace, “Building
Bridges: Linking Woman Abuse, Substance Use, and Mental Ill Health,” for
their introduction to the concept of violence- and trauma-informed policy
practice; and L. Godard, J. Cory, A. Abi-Jaoudé, K. McAndless-Davis, and
N. Armstrong, “Making Connections: Supporting Women with Experiences
of Violence, Substance Use, and/or Mental Health Concerns,” as a practice
example of a violence- and trauma-informed approach.
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16 An Intersectionality Approach to
Resilience Research: Centring Structural
Analysis, Resistance, and Social Justice
sarah chown and lorraine halink a malcoe
Introduction
Throughout human history, same-sex desire and relationships have

existed in many forms across multiple cultural contexts. However, the
birth of the term homosexual – and particularly its relationship to medi-
cine and “the clinic” – has been the subject of ongoing scholarly debate
(Wahlert, 2012). It seems clear that the term was first used in print in the
late-nineteenth century in both legal and medical texts of Austro-German,
Austro-Hungarian, and Italian origin (Wahlert, 2012). Also clear is that
the medical use of “homosexual” as a pathological category, including as
a defined mental disorder in the Diagnostic and Statistical Manual (DSM),
has caused great harm to gay men1 for more than a century (Dowsett, 2007;
Wahlert, 2012). Yet, gay men and diverse communities of queer2 people
have resisted the characterization of their sexual desires and personhood
as sick or abnormal, advocating for de-medicalization and for equality,
dignity, and justice in law, health, and social settings (Kinsman, 2001;
Minton, 1997; Wahlert, 2012).
Gay men’s activism beginning in the 1960s led to the removal of homo-
sexuality as a designated mental illness from the DSM-2 in 1973 (Wahlert,
2012). However, the perception among many psychiatrists and clinicians that
homosexuals are diseased individuals did not end in 1973. Indeed, patholo-
gization of gay men surged with the emergence of HIV/AIDS in the early
1980s (Wahlert, 2012), and it persists – albeit with more coded language –
into the present. Contemporary pathologization is evident in ongoing de-
bates over psychiatric diagnoses of “gender dysphoria,” “dishomophilia,”
“egodystonic homosexuality,” and “sexual conflict disorder” (Wahlert, 2012,
444 Sarah Chown and Lorraine Halinka Malcoe
p. 270) and in depictions within the public health and mental health litera-
ture of “damaged psychologies” resulting from “internalized homophobia”
among gay men (Aguinaldo, 2008, p. 90). Many scholars have critiqued these
conceptualizations of internalized homophobia, which individualize the so-
cietal phenomena of heterosexism. Building on these critiques, Aguinaldo
(2008) argues that the extant framing of internalized homophobia “encour-
ages health care professions to help gay men better adapt to an oppressive
society and to accommodate oppression and its effects” (p. 92).
Mental health research on internalized homophobia reinforces hetero-
normative assumptions of gay men’s deficits. Studies point to internalized
homophobia as a cause of “self-compromising behaviours,” such as de-
pression, suicidality, substance use, “sexual risk taking,” and homelessness
(Aguinaldo, 2008, p. 91). This research discredits men’s agency – including
the possibility that some of these actions represent political acts of resis-
tance – and diverts attention from the social change needed to prevent all
forms of homophobia. For decades, gay men and gay rights activists have
opposed these and other deficit-based approaches to understanding their
health because they reinforce societal beliefs that gay lives are pathologi-
cal and thus an “insufficient form of personhood” (Wahlert, 2012, p. 271).
More recently, gay men have proposed resilience-based approaches as an
alternative. For example, Eric Rofes (2005), a leader in gay men’s health
and HIV activism in the United States, has argued for resilience paradigms
that “take as [their] starting point that most gay men are already happy,
healthy, and successful” (p. 1).
Gay men’s activism has been a key factor precipitating a marked increase
in the use of the term resilience in gay men’s health literature over the past
decade. Rofes sounded a call in 1999 to “transform the ways in which we
think about and evaluate gay men … into a model which recognizes the
tenacity, survival-skills, and overall resilience of our cultures and commu-
nities” (p. 11). However, before Rofes, in the 1980s, gay men were writing
about what is understood today as resilience in their communities. Black
gay men’s literature features many examples, such as these words by activ-
ist and author Joseph Beam, writing in 1984: “I dare myself to dream of
us moving from survival to potential, from merely getting by to a positive
getting over” (as cited in Harris, 2005, p. 30).
Despite increased attention to the concept of resilience in gay men’s
health (Savin-Williams, 2005, p. 50), there is no consensus definition, op-
erationalization, or framework that informs gay men’s health resilience
research. Much of the recent gay men’s health research that uses resilience
approaches is based on the psychological construct of resilience (Chown
An Intersectionality Approach to Resilience Research 445
& Malcoe, 2012) that has been commonly used within academic research
since the 1980s (Ungar, 2012), rather than on emic notions proposed from
within communities of gay men. Our systematic assessment of the defini-
tions of resilience that were used in English-language (mostly U.S.-based)
gay men’s health research for the twenty-five-year period from 1987 to 2012
found that the definitions closely mirrored those used in psychology and
shared two characteristics: (1) resilience emerged in the context of current
or former exposure to adversity; and (2) resilience required researcher-de-
termined notions of “successful” negotiation of acute or chronic adverse
circumstances (Chown & Malcoe, 2012).
Recent scholarship has delineated concerns about these narrow psychol-
ogy-based concepts of resilience and the resulting knowledge produced by
academic-based resilience research, which have not only implications but
also real life consequences for individuals and communities who experience
and resist high levels of marginalization (for example, Wexler, DiFluvio, &
Burke, 2009). There have been critiques of the prevailing hegemonic cul-
tural norms that undergird current understandings and measures of re-
silience; of the absence of a structural analysis of factors that shape both
the adversity experienced by gay men and their opportunities to achieve
resilience; and of the discourse that expects resilience from gay men (for
example, participant in Tooley, 2010). Our conceptual framework attempts
to rectify these criticisms.
Objectives
We propose a conceptual framework for resilience research that replaces

dominant psychology-based approaches with a focus on structural analy-
sis, resistance, and social justice. Our framework is informed by gay men’s
ongoing health activism, as well as intersectionality and queer theory. We
put forward five principles to guide resilience-based research, arguing that
producers and consumers of this work should (1) incorporate historical
and structural analysis, (2) foreground interlocking systems of domina-
tion, (3) affirm resistance, (4) centre in the margins, and (5) engage in self-
reflexive praxis. We next apply these principles to an analysis of three recent
research articles that explore resilience among gay men and other men who
have sex with men. Through these three examples we demonstrate ways in
which the five principles can inform knowledge production with an explicit
social justice aim of advancing social and health equity. We hope that this
framework will support the health and well-being of diverse gay men and
their communities.
Gay Men’s Health Activism
For nearly a century gay and lesbian people have advocated for, and par-
ticipated in, improving knowledge production about their lives as an activ-
ist strategy (Minton, 1997). As described above, during the 1990s activist
academics and gay men’s health leaders in the United States (Rofes, 1999)
and Canada (Ryan & Chervin, 2001) called for research to move away
from pathologizing approaches to gay men’s health towards an emphasis
on gay men’s strengths and successes. These initial calls for resilience re-
search challenged heteronormative beliefs that were shaping the approach
to research about gay men. Subsequently the concept of resilience has
been used in Canadian gay men’s health policy documents to affirm cur-
rent and past strengths of gay men’s communities (for example, Ryan &
Chervin, 2001). Resilience has also been a focus of recent Canadian gay
men’s health summits for practitioners, advocates, and policymakers (for
example, Community-Based Research Centre, 2010).
Gay men have a history of advocacy directed towards research and poli-
cy issues that affect their lives, particularly in response to HIV. Formal gay
organizing in Canada emerged in the 1960s, focusing on an agenda that
sought access to institutions (for example, military service) and equal-
ity under the law (for example, human rights protections, and removing
homosexuality as an aggravating factor in the severity of criminal acts)
(M. Smith, 2007). This initial activism leveraged the skills and experience
that had been developed by the earlier women’s and youth movements (Roy,
1995; M. Smith, 2007). However, the emergence of the HIV epidemic in the
United States and Canada in the early 1980s – first concentrated among
gay men – shifted the focus of many gay activists (M. Smith, 2007). From
the outset of the epidemic, people living with the virus or the syndrome it
causes, AIDS, articulated the need for their experiences and knowledge to
inform institutional responses to people living with, and at risk of, HIV.
In Canada and elsewhere, governments were pushed to respond to HIV
because of the advocacy efforts of people living with HIV/AIDS (PHAs)3
and the organizations they formed, such as the AIDS Coalition to Unleash
Power (ACT UP) in the United States, and AIDS Action Now! (AAN!) in
Canada (Roy, 1995). With PHAs in leadership positions, the activist re-
sponse to HIV was framed “through a personal awareness and understand-
ing of their experience” (Brown et al., 2004, p. 53). In the Canadian context,
AAN! succeeded in securing access to HIV medications, funding for local
supports and research, and a national AIDS strategy (AAN!, n.d.).
Community responses to HIV/AIDS have expanded to include continued

activism, AIDS service organizations, and an HIV research sector. All of
these responses espouse – to varying degrees – the principle of greater and
meaningful involvement of people with HIV/AIDS (GIPA/MIPA), which
affirms the centrality of the experiences and knowledge of PHAs (Travers
et al., 2008; UNAIDS, 2007). This approach prioritizes the meaningful in-
volvement of PHAs in generating, developing, implementing, and evalu-
ating research, policy, and programs across the domains of prevention,
treatment, care, and support (OAN, 2011). In Canadian practice, GIPA/
MIPA has resulted in PHA engagement in institutions and organizations
that provide funding, offer services, affect policy, and conduct research
through both formal (for example, advisory committees, paid staff, peer re-
search associates) and informal (for example, conversations, casual volun-
teers) channels. GIPA/MIPA is consistent with the idea of “centring in the
margins,” a key tenet of intersectionality discussed in detail below.
Intersectionality
The term intersectionality was first introduced to the academic literature

by Crenshaw (1989), who argued that “the multidimensionality of Black
women’s experience” (p. 139) in the United States required analysis of Black
women’s simultaneous and intersecting experiences of racism and sexism.
Crenshaw argued that these experiences were distorted and “theoretically
erased” by single-axis sex or race frameworks prevalent in much of promi-
nent feminist and anti-racist theory and activism of the day. Among its
many contributions, intersectionality has disrupted the notion of homog-
enous group identities, such as “women” and “people of colour,” and has
created new possibilities for collective social action. Intersectionality not
only explains but also seeks to resist and dismantle intersecting systems of
power that (re)produce unjust social relations (Dhamoon, 2011).
Although intersectionality is a relatively new concept in public health
and policy scholarship (Hankivsky, 2011; Schulz & Mullings, 2005), many
communities have used the language and analysis of intersectionality for
some time. For example, writings by men who identify as Black and as gay
have considered the impacts of oppressive systems and embodied markers
of exclusion/inclusion on their lives (Bowleg, 2013). In one 1986 essay, On
Not Being White, U.S. poet Reginald Shepherd (2005) described the chal-
lenges of integrating multiple social identities: “I have spent years proudly
and often militantly defining myself as a gay man; I am still tentatively
moving toward equally proudly defining myself as a black man. The pro-
cess of reconciling myself to each of my social identities has had much to
do with how and to what extent those around me bring the two together
and keep them separate … I was black before I was consciously sexual, but
I was sexual long before I had the words for sex or race; and when did I
become ‘I’?” (as cited in Harris, 2005, p. 56).
To put this nuanced articulation into Dhamoon’s (2011) analytic rubric
for intersectional research, Shepherd’s reflections illustrate the complex
and shifting nature of identities marked as different (for example, gay man,
Black man) as well as “categories of difference” (for example, gender, sex-
ual orientation, race). Dhamoon uses two additional terms to capture the
interrelated aspects of an intersectional analysis: “processes of differentia-
tion” (for example, sexualization, gendering, racialization) and “systems of
domination” (for example, heterosexism, patriarchy, racism). By analysing
these interactive processes and systems, Dhamoon argues that we can il-
luminate the “doing and making of difference” (p. 235) and the dynamic
workings of power. For example, quantitative health researchers typically
examine outcomes associated with being a member of groups marked as
different (for example, gay or Black) by using dominant group identities
(for example, heterosexual, White) as the standards for comparison. This
common research practice leaves the health statuses of dominant identi-
ties unmarked and unexamined (Dean, 2010) and perpetuates “the myth
that identities naturally preexist and the fallacy that subjects have identi-
ties” (Dhamoon, 2011, p. 235, italics in original). This practice is thus part
and parcel of societal processes of differentiation that normalize unequal
power relations between groups. As Dean (2010) argues, by instead shift-
ing the analysis to the unmarked, we can “focus our attention on how
white supremacy, male domination and heteronormativity operate through
their absence, omission, and unnamed status, as well as through repressive
power relations” (p. 127).
Dhamoon (2011) explains that drawing attention to interpersonal and
institutional processes of differentiation, for example via discourses and
everyday practices of gendering and sexualization, shifts the analysis away
from binary notions of difference – and of oppression versus privilege –
towards a structural analysis of “differing degrees and forms of penalty and
privilege” (p. 234, italics in original). From this perspective, all of us, as
actors in ongoing systems of domination, participate in the doing and un-
doing of everyday processes of inclusion and exclusion that differentially
affect individuals’ rights to citizenship, material conditions of living, and
participation in daily life.
According to Dhamoon (2011), systems of domination include social and

institutional processes and arrangements that distribute power to shape
the lives of individuals and communities. These systems operate in mutu-
ally constituting ways at multiple levels. Kanani (2011) delineates how,
at the societal level, settler colonialism and racism have been integral to
oppressive practices and policies of psychiatric institutions in Canada and
the United States, resulting in high levels of “surveillance and control of
Indigenous people’s reproduction” through state-sanctioned, forced ster-
ilizations of “mentally defective” First Nations women (per, for example,
Alberta’s Sexual Sterilization Act), and in disproportionately high rates of
psychiatric institutionalization of “violent” African Americans in the late
1880s and early 1900s by “intimidating, punishing, and controlling African
Americans who did not remain docile,” in order to maintain a racist social
order (pp. 8–9). At the interpersonal level, individuals and groups enact
power that (re)creates, (re)produces, and/or resists these systems of domi-
nation (Cohen, 2004; Collins, 2000). This complex understanding of power
affords opportunities for individuals and groups to enact resistance and
agency; thus, the analysis by intersectionality scholars of mutually consti-
tuting systems of domination is integral to social justice strategies that seek
to disrupt these systems (Spade, 2013).
Intersectionality also emphasizes the “situatedness” of all knowledge
(Collins, 2000), thereby asserting the value of multiple forms of knowl-
edge and especially knowledge garnered from lived experience because it
is so often discounted by academic research. In both types of knowledge
generation, individuals’ social locations and first-hand experiences of sys-
tems of domination affect their observations of the world, and thus the
understandings produced. Intersectionality encourages its practitioners to
consider these limitations of knowledge production and to make them vis-
ible in their work (Dhamoon, 2011, p. 240).
Locating Ourselves in This Work
In the spirit of the self-reflexive praxis we advocate for here, we offer a brief
discussion of our involvement in this work. We hope that our approach to
resilience research disrupts and challenges what we see as the harms caused
by too much current academic work in the area of gay men’s health, es-
pecially the harms of perpetuating notions of health and wellness based
on White, heterosexual, middle-/upper-class, and professional norms. Our
reflections are an attempt to offer the reader some transparency about our
experiences, commitments, and beliefs that affect and limit the knowledge
we produce. As people who are not gay men, we do not purport to speak
for this heterogeneous group.
Sarah
My approach to gay men’s health is largely informed by my experiences
of working alongside gay men in Vancouver, the unceded Coast Salish
Territories, and Ontario, Canada, since 2010. Through my training and
professional and volunteer experiences in academic and community-based
settings, I have seen gay men’s efforts to support each other and strengthen
their communities, and I have sought to integrate the theoretical frame-
works, such as intersectionality, that I encountered in my public health
graduate studies. My ongoing experience working alongside diverse groups
of gay men grounds my understanding of intersectionality and queer the-
ory and also informs my learning about programming and research within
the fields of HIV and gay men’s health. These paradigms provide a frame-
work that helps me critique my own work; centre the voices and experi-
ences of diverse queer men; continue to learn; and challenge, through my
research and practice, the reproduction of oppression.
Lorraine
I have limited experience in the field of gay men’s health and in working
with communities of gay men. My interests in this work stem from my
struggles within and against the academic industrial complex during the
past twenty-five years, particularly in the fields of public health and men-
tal health in Canada and the United States. I have contributed to and be-
come increasingly dismayed with the limited theoretical, epistemological,
and ethical foundations of mainstream knowledge production and educa-
tion in these fields. From intersecting positions of privilege and penalty, I
have sought out new social justice–centred approaches based in commu-
nity knowledge, as well as in critical race, feminist, and decolonial scholar-
ship. With regard to the concept of resilience, I have been an advocate of
its introduction to public health in response to community resistance to
deficits-based knowledge production and have resisted its appropriation
by academia in reinforcing status quo power relations.
Queer Theory Perspectives on Intersectionality
Queer theory has commonalities with intersectionality: they both dialogue

with feminist scholarship, offer nuanced ways of conceptualizing identity,
and demand structural analysis. However, these theories emerged from
differently situated groups and in different, but parallel contexts. As men-

tioned earlier, Crenshaw’s (1989) initial articulation of intersectionality
centred the diverse experiences of U.S. Black women within political or-
ganizing and academic analysis. In contrast, queer theory emerged as a
critique of identity-based politics and organizing within lesbian, gay, bi-
sexual, and trans (LGBT) movements. Although queer theory seeks to be
broadly applicable, it has faced criticism for upholding whiteness, erasing
experiences of Indigenous people and people of colour, and reproducing
settler colonialism (Driskill, 2010).
Queer theory analyses categories of difference (for example, sexuality
and gender) to reveal the ways in which state power governs social rela-
tions. As Marcus (2005) explains, “sexuality can mean affect, kinship, so-
cial reproduction, the transmission of property, the division between public
and private, and the construction of race and nationality” (p. 206, italics
in original). Using sexuality as an entry point, queer theory now exam-
ines a range of “state-sanctioned disciplinary acts concerning race, class
and gender identity positions” that culminate in notions of “undesirable
sexual acts” or their outcomes, such as “‘too many’ poor children” (Yekani,
Michaelis, & Dietze, 2010, p. 101). Queer theory interrogates expressions of
power that privilege, introduce, create, or require normalcy.
Drawing from queer theory and intersectionality, Duong (2012) illus-
trates the benefits of transcending historically and structurally constitut-
ed identity categories. In the 2008 California same-sex marriage debate,
Blacks (and, more specifically, Black churches) and queers were assumed
to be in conflict. However, Duong’s more nuanced analysis underscores
the limits of identity-based framings: “The problem is not with blacks or
queers; it is with people who hold certain normative visions of the world,
whether queers, blacks, both, or neither … [W]e should not ground the
intersectional contours here exclusively on the demographic fact that these
are gays, blacks, and churches … but, instead … [on] the contested world-
making practices and posited visions of justice, which in fact underwrite
political solidarities and alliances” (Duong, 2012, p. 383).
Duong articulates the need to shift analysis of issues from those based
on contested identity categories to nuanced understandings of individuals
and groups seeking to maintain or disrupt normative ways of being. Queer
theory thereby “emphasizes affinity and solidarity over identity” and con-
nects people seeking to disrupt norms, regardless of identity (Marcus, 2005,
p. 197).
As other scholars have discussed, intersectionality and queer theory
are complementary: “In many ways, queer intersectionality is simply the
necessary tautology: intersectionality is inevitably disruptively queer, and

queer must be analytically intersectional” (Rahman, 2010, p. 957). These
two theories provide the starting point for the principles we propose to
guide and strengthen resilience research in the service of social justice.
Guiding Principles for Resilience-Based Approaches

to Gay Men’s Health Research
Drawing from the legacy of gay men’s health and social activism, and from
intersectionality and queer theory, we now describe in detail our five com-
plementary principles to guide resilience-based approaches to health re-
search, focusing on their applicability to gay men’s health (figure 16.1).
Incorporate Historical and Structural Analysis
At one time historical analysis was seen as crucial to public health research;
however, in the present day its absence is salient (Chowkwanyun, 2011).
Historical and structural analysis is central to understanding the changing
social contexts in which health and inequities are (re)produced, and it can
make visible past processes that have led to contemporary circumstances.
Still, as many scholars remind us, history is often told in ways that erase the
lives and stories of people who challenge dominant ways of being. Indeed,
queer theory, intersectionality, sexuality studies, and Indigenous scholars
all emphasize the importance of interrogating the histories of contempo-
rary social, political, and economic structures (for example, L.T. Smith,
2012; Wahlert, 2012; Weeks, 2010). Thus it is important to evaluate histori-
cal accounts, their claims, and who benefits from these claims, and to tell
histories in ways that encourage individuals and entities in the present to
respond to historical injustices (Young, 2011, p. 209).
Historical and structural analysis is key to interrupting unjust social
relations based on inequitable distributions of power. Young (2011) uses
the term structural injustice to underscore the historically contingent social
processes that produce both domination and privilege. As she explains,
these “social processes put large groups of persons under systematic threat
of domination …, at the same time that these processes enable others to
dominate or to have a wide range of opportunities for developing and ex-
ercising capacities available to them” (p. 52).
Historical and structural analysis disrupts the tendency in much of con-
temporary health research to frame questions and approaches based on in-
dividualized notions of health and illness. For example, a historical analysis
AFFIRM
RESISTANCE
CENTRE IN THE
INTERSECTIONALITY
MARGINS RESILIENCE
INCORPORATE RESEARCH
HISTORICAL & FOR SOCIAL
QUEER THEORY
STRUCTURAL JUSTICE AND
GAY MEN’S ANALYSIS HEALTH
ENGAGE IN EQUITY
HEALTH ACTIVISM
FOREGROUND SELF-REFLEXIVE
INTERLOCKING PRAXIS
SYSTEMS OF
DOMINATION
THEORY & ACTIVISM PRINCIPLES
Figure 16.1. Conceptual framework for resilience research applied

to gay men’s health.
of the notion of internalized homophobia reveals that it was originally con-

sidered a problem of individual heterosexual people who were seen to have
adverse reactions to homosexual people they encountered. Internalized
homophobia was subsequently transformed into a description and a diag-
nosis for homosexual people, including gay men (Aguinaldo, 2008). This
historical perspective shows how the discourse of internalized homopho-
bia maintains heterosexism as a system of domination by focusing on se-
lect people, labelled as homophobic, who are seen as exceptions in a society
that is otherwise free of homophobia. As discussed earlier, “the idea of IH
[internalized homophobia] perpetuates the injustice of privatizing socio-
cultural problems, in this case, homophobia and heterosexism” (Tilsen &
Nylund, 2010, p. 98).
Applied to resilience research, historical and structural analysis draws
attention to ways in which the markers used to infer and measure resil-
ience inadvertently advance, rather than disrupt, deficit-based approaches
by blaming some gay men for their poorer health outcomes. For example,
remaining HIV-negative is a common indicator of resilience in gay men’s
health research. Its usage ignores historically contingent structural pro-
cesses that heavily influence when, how, and why HIV risk is concentrated
among certain communities of gay men. Using HIV status as a marker
of resilience creates new binaries of “successful” and “unsuccessful” (or
“deserving” and “undeserving”) gay men, thereby reifying the notion that
preventing HIV is firmly within individual control. Yet we know that
a host of structural factors, including poverty, trauma, racism, and sex
education that ignores the sexual experiences of many gay men, are all as-
sociated with increased HIV exposure (Stall, Friedman, & Catania, 2008).
Foreground Interlocking Systems of Domination
Systems of domination refer to “historically constituted structures of dom-

ination such as racism, colonialism, patriarchy, sexism, capitalism, and so
on” (Dhamoon, 2011, p. 234) and to the violence produced by these struc-
tures. Queer and intersectionality theory – and related activism – all empha-
size that analysis of these interlocking systems is integral to struggles for
a just society. Analysis of these systems is fundamentally about the work-
ings of power “that constitute, govern, and counter difference” (Dhamoon,
2011, p. 234). The foregrounding of systems of domination, in concert with
the examination of interactive processes of differentiation, enables delinea-
tion of “the specificities of power, including an analysis of what practices
of differentiation do to social relations, how difference making organizes
subjects in varied and changeable ways, how subjects perform and resist
modes of differentiation …” (Dhamoon, 2011, p. 235).
There are several examples of interlocking systems of domination in cur-
rent gay men’s health practice and research, although knowledge of these
systems varies, as do efforts to resist them. Dean (2010), for example, con-
siders processes of differentiation and systems of domination that have an
impact on identity practices of U.S. heterosexual men, through analysis of
what he terms “racial heterosexual masculinities.” He illustrates how rac-
ism and heterosexism interlock in identity-making practices, noting that
the dominant (racist, heteropatriarchical) perception of Black men as hy-
persexual and heterosexual means that they “can rely on their racial iden-
tity to code them as exaggeratedly heterosexual masculine men,” whereas
non-Black heterosexual men “rely on strong boundaries of social distance
to project a clear heterosexual masculinity” (p. 131). Dean shows how nu-
anced experiences of unmarked categories – such as heterosexual masculin-
ity – can be illuminated by studying them in concert with other oppressive
systems (in this case, racism).
Interlocking systems of domination are also visible in sexual health work
with gay men. Over the past decade gay, bisexual, and queer trans men in
Ontario have organized to challenge the cissexism that erases trans men’s
needs and experiences within gay men’s HIV prevention, as evidenced, for
example, by the absence of sexual health and HIV prevention informa-
tion pertinent to trans men’s bodies (Scheim, Ware, Redman, Marshall, &
Giambrone, 2014). In many cases, gay men’s sexual health programs have
developed without trans men, in part because of the historical practice of

denying transition-related care to trans men who express sexual desire for
other men (Scheim et al., 2014). In response to the needs of trans men in
Ontario, the Gay/Bi/Queer Trans Men’s Working Group, composed largely
of gay, bisexual, or queer trans men, was established in 2006. The working
group produced the first sexual health guide for trans men whose sexual
partners are men, titled Primed. This guide has since been translated into
several languages and spurred the development of sexual health guides for
many trans populations (Scheim et al., 2014).
Despite these successes, gay, bisexual, and queer trans men have ongo-
ing concerns about the absence of adequate supports for trans men, men
racialized as non-White, Indigenous men, and bisexual men (Scheim et
al., 2014). Efforts to respond to these concerns include intentionally re-
cruiting diverse trans men within the working group itself and engaging
diverse trans men as models for photographs used in the Primed resource
that they developed.
In the context of resilience research in gay men’s health, the foreground-
ing of systems of domination calls for analyses to move beyond the single
category of sexuality to consider how heterosexism interlocks with other
oppressive systems. Doing so shifts the focus from individual identities
towards analysis of structural and interpersonal processes of identity for-
mation, and creates new opportunities for resisting the reproduction of
social inequities.
Affirm Resistance
People targeted by oppressive systems are not simply dominated; they, too,
exert power, and in many cases this power is intentionally enacted to resist
and disrupt domination (hooks, 1989; Mullings, 2005). Often acts of resis-
tance are criminalized or otherwise disparaged by dominant social actors
and institutions (Cohen, 1997). Yet, critical social science scholars working
towards social equity (for example, Mullings, 2005) regard resistance as
a positive outcome within a community and as an indicator of social and
political engagement. Resistance is also correlated closely with health; as
Wade (1997) notes, it is “both a symptom of health and health inducing”
(p. 24). Thus, resilience research is a natural opportunity to affirm resistance.
Collins (2000) emphasizes that resistance takes many forms, including both
the work of group survival and direct confrontations with institutional and
state power. However, it is important to avoid assumptions about which
actions constitute resistance (Cohen, 2004). As such, it is imperative that
people in the margins, that is, people who most directly experience harmful
impacts of systems of domination, are actively engaged in discussions of
resistance within their specific communities (hooks, 1989).
Affirming resistance supports the struggles of people and communi-
ties in the margins and can oppose institutional efforts to disrupt acts and
voices of resistance. For example, Eric Rofes (1999) called for research to
regard aspects of gay men’s communities, such as “gender play, kinship
networks, and sexual cultures[,] … as adaptive survival strategies which
have served us well” (p. 11). In addition, research with sexual minority
youth has shown that many of their survival strategies are often negatively
perceived by authority figures, such as parents or teachers, which can re-
sult in these youth being “punished or ostracized for exactly those behav-
iours that help them” (Harvey, 2012, p. 5). Prevailing resilience research
discourages and erases these acts of resistance. Indeed, this research often
uses indicators, such as school performance and relationships with author-
ity, which classify the youth who are enacting resistance as faring poorly.
Resilience research also uses assimilatory outcomes, such as developmen-
tal milestones and psychological scale measures that do not make space for
the possibility of acts of resistance.
Resistance can occur at individual and group levels (Collins, 2000), in-
cluding group-level resistance to state-sponsored projects (Kinsman, 2001).
For example, in Canada the colonial-settler project has, from its inception,
violently imposed Eurocentric concepts and practices of sexuality and gen-
der that usurped Indigenous traditions of two-spirit people. In response,
Indigenous people have sought to reclaim traditional notions of sexuality
and gender within their communities and to create opportunities for the
celebration of contemporary two-spirit people (Kinsman, 2001, p. 224). In
addition, the Royal Canadian Mounted Police in the 1950s and 1960s cre-
ated “objective” scientific technology to systematically identify and subse-
quently fire lesbians and gay men who were working in federal public service
(Kinsman, 2001, p. 211). In response, gay men and lesbians resisted these
efforts by refusing to provide names of other gay men and lesbians and by
altering their social behaviours so they would be harder to identify.
Resistance must be affirmed; yet it is important also to be attentive to the
negative health impacts of ongoing resistance – particularly those related
to chronic stress – among individuals and communities who employ them
(Mullings, 2005, p. 9). Resistance must be affirmed as a vital strategy used
by communities that experience violence, alongside other strategies, such as
providing direct help, structural analyses, and solidarity building (Spade,
2013, p. 8). In order to recognize the ways in which people and communities
enact resistance, resilience research must create alternative indicators of

success that move beyond researcher-derived assimilatory notions and are
instead inclusive of gay men’s diverse lived experiences of resistance.
Centre in the Margins
Western societies generally only value “knowledge” generated by profes-

sionals and researchers using purportedly objective means (Collins, 2000;
Lorde, 1984/2007). Centring in the margins is a principle that asserts the
necessity of knowledge generated by those who experience and resist so-
cial marginalization, where reality is seen “from the outside in and from
the inside out” (hooks, 1984, as cited in hooks, 1989, p. 206). Centring
in the margins recognizes embodied knowledge, which “emphasize[s] and
celebrate[s] the voices, experiences, situated knowledge, and perspectives of
those traditionally marginalized and erased …” (Dhamoon, 2011, p. 233).
As Bannerji (2000) elaborates, knowledge generated from the margins is
often most relevant to social justice aims because “the possibilities for con-
structing a radically different Canada emerge only from those who have
been ‘othered’ as the insider-outsiders of the nation” (p. 81). Centring in
the margins also emphasizes accountability to people in the margins, which
dramatically shifts the focus and purpose of knowledge production.
In the context of gay men’s health and HIV, centring in the margins
dovetails with, and extends calls for, community-based (participatory) re-
search and the principle of GIPA/MIPA. Both of these approaches repre-
sent the commitment of professionals to include, in knowledge production
and decision-making, PHAs and people from the communities that are
being researched. Although both of these ways of producing knowledge
incorporate the perspectives of those most affected, too often key decision-
making power is still concentrated among those in the centre rather than
in the margins. For example, persistent barriers related to stigma and the
episodic nature of HIV-related illness (Travers et al., 2008), alongside the
professionalization of AIDS service organizations, have at times eclipsed
the knowledge of those most directly affected by HIV (Adam, 2011).
Many organizations struggle to systematically centre the needs of indi-
viduals experiencing high degrees of marginalization. The Sylvia Rivera
Law Project is an organization with a decision-making structure that pur-
posely centres in the margin. This structure helps to enact the concept of
“trickle up” social justice, in which the needs of people experiencing mul-
tiple forms of marginalization are prioritized (Spade, 2011; Sylvia Rivera
Law Project, 2013). Underlying this concept is the idea that the changes
that serve the needs of groups harmed by multiple systems of domination

will also trickle up to those with more privilege. For example, as a collec-
tive, the Sylvia Rivera Law Project makes major organizational decisions
by giving all members – including volunteers, staff, and people who use
services – an equal vote. In addition, the project supports centring in the
margins via initiatives to support capacity development and opportunities
for leadership and training among its members.
Engage in Self-Reflexive Praxis
Research is a productive force that plays an active role in creating images

of the people and groups it studies (Holt, 2013). Research shapes the
interactions among institutions (for example, social welfare, health, and
education systems; media; and government bodies) and the understandings
of people, groups, communities, and their needs. Research has been a site
of violence against populations marked as different, including Indigenous
peoples (L.T. Smith, 2012) and sexual and gender minorities (Minton, 1997).
Limited attention has been paid to self-reflexive praxis as a tool to prevent
harm in the first place and to identify and redress harms that occur.
Self-reflexive praxis is an orientation to activism, research, and profes-
sional engagement that combines theory and practice for social justice.
It requires ongoing learning; personal reflection on the topics we choose
to research, the people with whom we work, and the approach we take to
this work; and honest conversations with our research and practice teams
about whose voices, experiences, and concerns are being centred, and where
the decision-making power lies. Thus, reflexive praxis acts as a form of ac-
countability, especially to those whose experiences, social locations, and
relationships with systems of power are less privileged and are different
from our own (Reynolds, 2010).
Self-reflexive praxis encourages us to consider the impact of our social
locations and experiences of domination and privilege on knowledge pro-
duction, including the knowledge that is produced, the ways in which it is
produced, and the voices involved in its production (Collins, 2000; Ibáñez-
Carrasco, 2012). When meaningfully adopted as an essential component of
research, self-reflexive praxis creates opportunities to unsettle the ways in
which privilege operates in the practice of research and to disrupt oppres-
sion within our daily lives. Self-reflexive praxis opens up the often over-
looked questions about whether and how we are resisting hierarchies of
power or inadvertently reproducing inequities, and it requires us to examine
both our intentions and our impacts, which may or may not be consistent
with our goals.
In the context of community-based (participatory) research, self-reflexive
praxis may help scholars to “become transparent, sincere and trustworthy
to the communities we investigate” and to “accept that seemingly radical
and diasporic clusters of individuals can amount to collective knowledge,
skill, and experience – that they have something to teach us and they are
not only sources of information” (Ibáñez-Carrasco, 2012, p. 316). This
praxis enhances efforts to centre in the margins and disrupt the primacy
of professionalized knowledge. It supports us to consider diversity with-
in groups, thereby resisting homogenization of the groups of people with
whom we work (for example, gay men) and increasing awareness of those
whose voices are being left out of decisions, programs, and information.
Engaging in self-reflexive praxis is an important strategy to first artic-
ulate and then hold oneself accountable to social justice values. In the
context of our conceptual framework, engaging in self-reflexive praxis is
an opportunity to revisit the other principles presented herein, identifying
both their potential for the specific project being considered and the ways
in which researchers have or have not implemented them throughout their
work. Community-based (participatory) research, participatory action re-
search, and Indigenous and decolonizing methodologies, as discussed in
greater depth elsewhere in this volume, each have mechanisms in place to
support self-reflexive praxis.
Intertwining Principles
These five principles are intertwined and complement one other to empha-
size important areas for consideration by people engaged in knowledge
production and research. They are not presented in a definitive order here
and can be applied in multiple ways to support resilience research for social
justice. We intend that these principles reinforce GIPA/MIPA and create
space for, and ascribe value to, the experiential knowledge of diverse sexu-
ally active people within gay men’s communities.
Figure 16.1 highlights intersectionality, queer theory, and gay men’s
health activism as the foundation of the five principles and illustrates the
continuity among the principles. Historical and structural analysis informs
understandings of the interlocking nature of systems of domination. Rec
ognizing resistance requires the analysis of interlocking systems and their
impact on people’s lives, and it requires centring the experiences of people
in the margins. In turn, centring in the margins deepens our understand-

ing of the simultaneous impacts of these systems and includes historical
and structural analysis to identify people who have been systemically mar-
ginalized and thereby excluded from knowledge production and decision-
making. The principle of self-reflexive praxis fosters the implementation of
the other principles by encouraging their ongoing consideration. For exam-
ple, centring in the margins requires a reflexive process about the systems of
domination with which we are engaging and that we are reproducing in our
work. This principle recognizes that we are often simultaneously subject to
and complicit in various forms of violence (Lorde, 1984/2007; Spade, 2011).
Taken together, the five principles inform a research process that is itself
consistent with the outcomes that it desires: programming, policies, and in-
terventions that support gay men, and diverse men who have sex with men,
in living self-determined healthy lives, free of interpersonal, institutional,
and structural violence.
Principles in Action
We chose three examples of articles from the gay men’s health resilience
literature (Bruce, Harper, & Adolescent Medicine Trials Network for HIV/
AIDS Interventions, 2011; Gwadz et al., 2006; Herrick et al., 2013) to dem-
onstrate how these principles may be applied to existing work and to in-
form future research. These papers are based on three separate data sets
from the United States and exemplify common quantitative and qualita-
tive approaches to resilience research. Each paper has contributed to the
burgeoning scholarship on resilience among gay men, and each considers
a different subgroup of gay men, uses different methods, and conceptual-
izes resilience in distinct ways. We offer a brief description of each paper’s
objectives and methods; highlight areas where the five principles described
have been taken up by the authors; and explore areas that may be strength-
ened by the use of the principles.
We do not intend to be exhaustive in our application of the five princi-
ples to these papers. Our readings of these papers focus on four research-
related domains, which are evident in these papers and in the broader
resilience literature and have implications for the ways in which resilience
is understood: conceptualization of individual and group identities; fram-
ings of health, risk, and resilience; operationalization of resilience and
adversity; and reproduction of hegemonic norms and values. Throughout
this section we use the language and acronyms of each paper’s authors.
Many of the points we raise can be extrapolated to the wider body of
resilience literature with gay men and, even more broadly, to gay men’s
health research.
It Gets Better: Resolution of Internalized Homophobia over Time and
Associations with Positive Health Outcomes among MSM (Herrick et al.,
2013) studies the association between internalized homophobia (IH) and
health outcomes among 1,551 participants enrolled in the Multicenter
AIDS Cohort Study that was conducted in four large U.S. cities. This study
infers resilience in participants who resolved IH, as measured by a previ-
ously validated nine-item scale. Participants completed the IH scale with
reference to two time periods in their life: upon first realization of same-
sex attraction and in the past twelve months. Participants were classified
as “having” IH if they indicated that they strongly agreed or agreed with
one or more of the nine items. Associations were examined between IH
resolution (participants who indicated early IH and then no IH in the past
twelve months) and several health-related variables: (1) stimulant drug use,
(2) psychological distress, (3) stress, (4) intimate partner violence, (5) un-
protected anal intercourse with a non-main partner in the past six months,
and (6) syndemics (co-occurrence of two or more of these variables).
Operating without a Safety Net and Emerging Adults’ Experiences of
Marginalization and Migration, and Implications for Theory of Syndemic
Production of Health Disparities (Bruce et al., 2011) presents a qualita-
tive study of fifty-four HIV-positive gay and bisexual young men (aged
seventeen to twenty-four years), predominantly African American (57 per
cent) and Latino (22 per cent), across four U.S. urban centres. The authors
qualitatively explore “syndemic production” of health disparities among
gay men. This theory holds that gay men’s health disparities are “socially
produced through … marginalization associated with early male adoles-
cent socialization in heterosexist environments and the stressors associ-
ated with migration to large cities with sizeable gay communities” (p. 367).
They examine gay and bisexual men’s experiences of “risks,” resilience,
and health behaviours in relation to gay-related stigma and marginaliza-
tion, and migration to gay-identified communities. The paper’s results de-
scribe men’s accounts of syndemic phases (Stall, Friedman, & Catania,
2008) and outline four themes of risk and resiliency.
Resilience among Young Men Who Have Sex with Men in New York City
(Gwadz et al., 2006) reports on levels of adaptive functioning among a di-
verse group of young men who have sex with men (YMSM), aged seventeen
to twenty-eight years, who reported sexual contact with a man one or more
times in the past six months in New York City. The paper, which draws
on psychological concepts of resilience, evaluates differences between the
YMSM who had experienced high childhood adversity (indicated by foster-

home placement) and those who had not, based on seven indicators: (1)
formal employment, (2) stable housing, (3) school enrolment or high school
completion, (4) no criminal justice system involvement, (5) no clinical de-
pression, (6) social support, and (7) fewer than three days of hard drug use
in the past month.
Conceptualization of Individual and Group Identities
Both intersectionality and queer theory highlight implications of the ways

communities are framed in research, how the resulting knowledge can be
used, and how researchers and service providers understand the needs of
these diverse populations. One such challenge within gay men’s health re-
search is the framing of participants’ sexual identities and behaviours: the
ubiquitous term MSM refers (albeit imprecisely) to sexual behaviour but
does not capture the richness and diversity of the ways in which these men
identify and experience their sexualities (Young & Meyer, 2005). For exam-
ple, MSM who identify as gay may be socially networked in ways that are
different from those who identify as two-spirit, queer, straight, or bisexual.
As is common in articles based on the Multicenter AIDS Cohort Study,
Herrick et al. (2013) do not report the sexual identities of their partici-
pants, and they use the terms MSM and gay and bisexual men interchange-
ably. In doing so, participants’ self-determined identities are erased, along
with potentially important differences in social and sexual experiences of
adversity and risk. These differences are shaped by experiences of margin-
alization and privilege related to sexual identities and their intersections
with simultaneous social identities. For example, there may be important
differences in the meaning of resilience across participants’ sexual and so-
cial identities and social networks. The analysis presented by Herrick et al.
does not consider simultaneous aspects of men’s identities and the ways
in which they may affect the resolution of IH, beyond reporting that “a
greater proportion of men with current IH were younger, racial/ethnic mi-
norities, less educated and lower earners compared to those with no IH”
(p. 1426). Herrick et al. thus do not acknowledge histories of resilience
(including resistance) within communities that coalesce around identity
markers beyond sexuality, such as race and indigeneity.
One way to account for the multiplicity of categories and systems that
affect individual experiences is to include measures of chronic stress, his-
torical trauma, and institutional and interpersonal discrimination that are
grounded in intersectionality and gay men’s resistance. Including these types
of measures would enhance the understanding of the impacts of oppressive

systems and processes of differentiation on people’s experiences of resilience
and their opportunity to demonstrate resilience indicators. For example, a
study that captures experiences of heterosexism and colonialism could dis-
rupt assumed homogeneity with the sexuality category and illuminate possi-
ble differences between participants’ experiences of both resilience and stress
related to their sexual identity.
Another challenge in gay men’s health resilience research is conceptual-
izing racial and ethnic identity in meaningful ways. In their introduction
Bruce et al. (2011) discuss the simultaneity of sexual and ethnic identity
development, yet they do not take up this issue in their aims or analyses.
Indeed, they explicitly oversample African American and Latino men to
address the absence of men of colour in syndemic research, and they
include race/ethnicity identifiers alongside participant quotations, but
they fail to provide a race-conscious analysis that asks “how racializa-
tion contribute[s] to the problem at hand” (Ford & Airhihenbuwa, 2010,
p. 1391). This omission is perplexing given the paper’s rationale, stated lim-
itations, and call for future syndemic research to “consider racial identity
and responses to racial stigma among young gay men of color” (p. 376).
The mere inclusion of men of colour in research does not, alone, advance
our understanding of how racial identity and racism affect gay men’s mar-
ginalization, identity development, resilience, or health. Moreover, the ab-
sence of a race-conscious analysis can do harm: it advances knowledge
production that erases the importance of race-related factors (most no-
tably, racism) by leaving them unexamined (Ford & Airhihenbuwa, 2010)
and makes it impossible to advance intersectional understandings that are
surely important for eliminating health disparities that negatively affect
gay men of colour. Alongside a race-conscious orientation towards re-
search, a historical and structural analysis aids researchers in considering
the reasons that study samples are chosen and the ways that they are de-
scribed; for example, a historical analysis reveals that the category MSM
was developed by medical authorities to respond to a sexually transmitted
virus. Although there may be some merits to the use of the term, it is not
directly transferable into the context of resilience research, which neces-
sarily examines the social aspects of men’s lives. We recommend that re-
searchers account for the decisions they make regarding the language they
use to describe their samples, and regarding the identity categories they
choose to include or exclude when reporting. It is also important to affirm
self-naming by individuals and groups, which can be an act of resistance
(Collins, 2000). Lastly, self-reflexive praxis may help researchers to consider
different approaches to classifying individual and group identity catego-

ries, and to challenge the assumptions they make about within-group di-
versity in these categories.
Framings of Health, Risk, and Resilience
Health outcomes, including resilience, are produced, in part, by social struc-

tures that have an impact on risk contexts, health information, and health
care. However, gay men’s health resilience literature often relies on notions
of individual risk and resilience without a structural analysis (Chown &
Malcoe, 2012). With the exception of a single reference to stigma, Gwadz
et al. (2006) do not discuss the well-documented structural forces that affect
the health risks experienced by YMSM, including interlocking systems of
heterosexism and racism (for example, Bowleg, 2013; Collins, 2004). Instead,
their paper focuses on individual behaviours as explanations for elevated
rates of poor health outcomes among YMSM. Gwadz et al. also adopt an
individual conceptualization of resilience, measured by the achievement or
absence of individual outcomes, as described earlier. Adopting this individ-
ualistic framing leaves the reader with a one-dimensional understanding of
how risk operates in the lives of YMSM, which elides the marginalization
that YMSM may experience and instead portrays them as individuals who
make poor behavioural choices.
Gwadz et al. (2006), however, do briefly address structural considerations
in their discussion, where they note that policing practices continue to dis-
proportionately target queer people, people of colour, and queer people
of colour. Gwadz et al.’s discussion of transgender YMSM also mentions
some structural factors that affect the lives of transgender YMSM with
regard to accessing care. The discussion section provides a few examples
of structural issues, including the possibility of homophobia within fami-
lies of origin that may lead to foster-care placement, and a note for future
research to consider “the degree to which resilience is dependent on struc-
tural factors, and how these can be addressed” (Gwadz et al., 2006, p. 19).
In contrast to the mostly individual framings implicit in Gwadz et al.’s
(2006) research, Bruce et al. (2011) emphasize the structural production of
risk; they conceptualize both the behaviours (for example, using substanc-
es to cope with stressful situations) and the environment (for example,
elevated rates of HIV within concentrated sexual networks) within a struc-
tural context (albeit, as noted earlier, one without attention to processes
of racialization). Bruce et al. also highlight participants’ own explanations
of risk experiences that foreground structural factors for gay and bisexual
men, such as the absence of support as they navigate gay men’s communi-
ties, and the variation in risk by place.
Intersectionality and queer theory emphasize the value of self-determined
notions of health, risk, and resilience, and the need to account for struc-
tural contexts, including systems of domination and privilege. Centring in
the margins provides researchers with an opportunity to learn with and
from the populations whose health they seek to support.
Operationalization of Resilience and Adversity
In the extant literature, resilience and adversity are almost always defined
by academic researchers; individuals’ own experiences are not centred
(Chown & Malcoe, 2012). For example, Herrick et al. (2013) categorize
resilient individuals as those who previously “had” IH, yet do not report
any current indicators of IH at the time of study participation. As the au-
thors note, it is a limitation to consider IH a dichotomous variable based
on presence or absence of one or more scale indicators, because “inter-
nalized feelings of shame or inadequacy are much more complex than a
dichotomous variable can capture” (p. 1428). Moreover, the theorizing of
IH as an individual attribute that gay and bisexual men have or resolve for
themselves ignores the pervasive heterosexism that affects these men’s lives
and dismisses the emancipatory potential of collective acts of resistance in
overcoming heterosexism, internalized or otherwise.
In contrast, Gwadz et al. (2006) adopt a concept of resilience that is not
dichotomous and that includes several domains of assessment. Their con-
cept is based on extant literature and reflects a social determinants of health
model, which, as discussed, too often does little to account for structural
production of risk and resilience, and may not be consistent with the val-
ues of the YMSM in their study. As Wexler et al. (2009) note, this reliance
on models that potentially clash with the worldviews of study partici-
pants is a trend that characterizes much resilience research with marginal-
ized youth. The principle of centring in the margins emphasizes a starkly
different approach, encouraging researchers to engage people within the
study population (or with those comparable to the study population) in
order to capture emic understandings of their lives. Adopting this principle
would likely produce new knowledge of resilience, including of the types
of challenges that YMSM themselves feel they face.
Neither Herrick et al. (2013) nor Gwadz et al. (2006) uses resilience
concepts that affirm resistance. Take the case of Gwadz et al.’s use of
stable housing as a marker of resilience. For YMSM, it is plausible that
stable housing may be incompatible with other life-affirming goals. For

example, leaving a family home may provide YMSM greater access to a
community of their peers, or an escape from abusive home situations, as de-
scribed by extant research, including participants in the Bruce et al. (2011)
study. Unstable housing among YMSM is largely produced by structural
injustice (Young, 2011), including an absence of social programs that pro-
vide adequate housing for people experiencing abusive family situations.
For these YMSM, leaving “stable” housing situations that are violent or
harmful (which results in them being classified as less resilient) may actu-
ally be an indication of positive resistance. Yet these possibilities are not
addressed in Gwadz et al.’s research. Gwadz et al. also used the indicator
of high school completion or attendance but did not account for the copi-
ous research suggesting that structural factors push youth, especially youth
of colour, out of school, a phenomenon often referred to as “push-outs”
(Dignity in Schools, 2011). People, including YMSM, may leave school to
support themselves or their families financially; to avoid, for example, het-
erosexist, racist, and ableist school systems and curricula; and/or to enact
resistance (Wexler et al., 2009).
The measures in Gwadz et al.’s (2006) paper and many others like it
suggest that resilience occurs among participants who achieve functioning
that is deemed positive by dominant discourses, actors, and institutions.
It is crucial to consider the types of norms and values that are being rein-
forced by these measures. Future research that centres values held by those
in the margins and is conducted by researchers who engage in self-reflexive
praxis as elucidated earlier may help research teams to develop measures
of resilience that are consistent with men’s own understandings.
Reproduction of Hegemonic Norms and Values
Herrick et al. (2013) examine the relationship between internalized ho-

mophobia (IH) resolution and “positive” health outcomes, such as no or
low stressors of daily life due to job, finances, health, crime, etc.; less-than-
monthly use of stimulants; and no or low sexual compulsivity. The as-
sumption that these behaviours are positive is based on decontextualized
public health assessments of health, wellness, and risk, which are often
inconsistent with the experiences of gay and bisexual men (Dowsett, 2007).
Although Herrick et al. recognize that disadvantage and deficit are cultur-
ally defined, they do not extend this observation to their classification of
positive and negative outcomes.
For Herrick et al. (2013), the study of resilience is important because

it can be used to identify gay and bisexual men’s successful strategies to
manage or avoid negative health outcomes; these strategies can, in turn, be
used “as part of interventions to support greater resiliency” (p. 1424). The
authors’ approach recognizes the past and ongoing work of gay and bi-
sexual men; however, they also suggest that academic research is needed to
formally “discover” and “promote” successes. As Ibáñez-Carrasco (2012)
argues, this suggestion may delegitimize gay men’s knowledge and experi-
ences, which have not been concretized via academic research. Gay men’s
health organizations, particularly in the context of the HIV epidemic but
also in domains of well-being beyond HIV, have been doing this work for
years, often with limited funding and in the face of multiple barriers. It
is important for resilience researchers to consider how their studies may
usurp community knowledge and be counter-productive in attempts to
support and affirm the work of gay men (Ibáñez-Carrasco, 2012).
At the outset, Herrick et al.’s (2013) paper states that it seeks to increase
understanding of the ways in which gay and bisexual men avoid or resolve
“negative” behaviours. The authors allude to the possibility that resolu-
tion of IH may be associated with known protective factors, such as com-
munity connection, but these are left unexamined. Further, as the authors
state, their study does not explain how gay or bisexual men resolve or
avoid IH, a contribution that would serve to advance current understand-
ings of the processes by which IH is resolved. Instead, the paper validates
the notably criticized (for example, Puar, 2010) assertion that “it gets bet-
ter” for gay and bisexual youth, an adage coined as a suicide-prevention
campaign aimed at LGBTQ youth who experience bullying as a result
of their sexuality or gender. The “It Gets Better” campaign, led by Dan
Savage, has been criticized for its reproduction of hegemonic values related
to class, whiteness, and upward mobility (Puar, 2010). By employing self-
reflexive praxis and centring in the margins, researchers can work to ensure
that the participants, and groups they represent (that is, gay men), benefit
from the research and that future research advances resilience knowledge in
ways that could inform interventions or policy change.
Conclusion and Implications
As an ongoing area of activism and a burgeoning area of scholarship with-

in gay men’s health, the concept of resilience contains many opportuni-
ties to transform practice and research in the field. This chapter presents a
conceptual framework that provides guidance to those who are interested

in exploring resilience in ways that reflect gay men’s activism and affirm
diverse gay men’s lives. The framework we present challenges researchers
and public health practitioners who use constructs of resilience; organiza-
tions and funders that participate in or support resilience programs and
research; and journals that publish resilience research, to adopt notions of
resilience that serve to support and strengthen diverse gay men’s health and
well-being. The five principles we delineate provide tools to support critical
analysis of existing scholarship and research in progress and to engage gay
men in ongoing knowledge production relating to resilience. We hope that
this writing informs further resilience-based research with gay men that
will incorporate historical and structural analysis, foreground interlocking
systems of domination, affirm resistance, and centre in the margins. Our
chapter also illustrates the need for self-reflexive praxis and echoes calls
to reconsider dominant academic forms of funding, knowledge produc-
tion, and translation. Although we apply our conceptual framework to
resilience research in gay men’s health, the spirit of the principles offered
here might be useful in resilience research with other populations. As the
public health and mental health fields continue to expand their use of
this concept, the framework presented here offers key considerations that
extend the potential of resilience work to advance social justice.
NOTES
1 The term MSM is commonly used as an epidemiological category to describe

men who have sex with other men, where sex is undefined but assumed to be
specific to penile-anal intercourse. This term diminishes attention to social
aspects of men’s lives, including sexuality, gender, and culture (Young &
Meyer, 2005), and assumes that anal sex is the defining behaviour of gay men’s
lives. While we use the term gay men throughout, we acknowledge that it too
has limitations in that it homogenizes a diverse group of men who identify
their sexuality in many ways. Because the bulk of the research reviewed here
focuses on men who identify as gay, and the first author’s experience has taken
place largely in organizations with a primary focus on gay men’s health, we
believe our work is perhaps relevant more to men who identify as gay than
to other men who have sex with men and identify in other ways. Throughout
this chapter the term gay is used when speaking generally; however, when
discussing specific examples in the literature, we preserve the terms used in
the original published works.
2 The term queer is used by a diverse group of people who do not define their
sexuality and/or gender within the normative, binary categories prescribed
by Western medical and state authorities. In the context of queer theory, this
term “has become a compact alternative to lesbian-gay-bisexual-transgender,
but it also emphasizes affinity and solidarity over identity” (Marcus, 2005,
p. 197).
3 The acronym PHAs and the phrase that it represents, people living with
HIV/AIDS, evolved from the earliest advocacy, in 1983, to secure a role for
people diagnosed with HIV or AIDS, in response to the epidemic (OAN, 2011;
Roy, 1995). In Ontario the acronym PHAs has been used within community-
based organizing and research since at least 1995 (Roy, 1995) and continues to
be used by the Ontario AIDS Network (OAN, 2011) to emphasize that people
living with a diagnosis of HIV or AIDS make ongoing contributions to the
HIV sector in the form of activism and research.
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Contributors
Alexxa Abi-Jaoudé is the research coordinator within the Education De

partment, Centre for Addiction and Mental Health. She was formerly
the program coordinator for the now defunded Woman Abuse Response
Program, BC Women’s Hospital and Health Centre. She holds a master
of public health (MPH) degree from Simon Fraser University. Her current
research areas include understanding the intersection of violence against
women, substance use, and mental health; improving access to mental
health support and resources using eHealth interventions; and exploring
ways to authentically engage clients and families in developing and deliv-
ering mental health education initiatives. Alexxa has worked on numerous
participatory action research projects focused on improving supports and
services for vulnerable women and youth. She co-led the British Columbia
research project “Building Bridges: Linking Woman Abuse, Substance
Use, and Mental Ill Health.”
Mike Arnouse is a Secwepemc Elder at Thompson Rivers University,

Kamloops, British Columbia.
Katie Aubrecht is a postdoctoral fellow and research coordinator at the

Nova Scotia Centre on Aging, Mount Saint Vincent University, Halifax.
She uses intersectional, post-colonial, and interpretive sociological theo-
ries and qualitative research methods to examine the social construction
of “mental life.” Her research and teaching adopts a disability studies per-
spective, which privileges the lived experience of disability. Katie has pub-
lished in Social Identities, Review of Disability Studies, Studies in Social
Justice, and Seniors Housing & Care, and in 2013 she edited a special issue
476 Contributors
of Health, Culture, and Society, “Translating Happiness: Medicine, Cul-

ture, and Social Progress.”
Susan Boyd is a distinguished professor in the Faculty of Human and Social

Development, University of Victoria, British Columbia. She was a member
of the Criminalization, Mental Health, and Addictions team in the Centre
for the Study of Gender, Social Inequities, and Mental Health. She is the
author of Hooked: Drug Films in Britain, Canada, and the US; From Witches
to Crack Moms: Women, Drug Law, and Policy; and Mothers and Illicit
Drugs: Transcending the Myths; a co-author of Killer Weed: Marijuana
Grow Ops, Media, and Justice; Raise Shit! Social Action Saving Lives; and
More Harm Than Good: Drug Policy in Canada; and a co-editor of With
Child: Substance Use during Pregnancy: A Woman-Centred Approach.
Darrell Burnham is the chief executive officer of Coast Mental Health, a

multi-service community mental health agency in the Greater Vancouver
area. With its interest in enabling the recovery of people with mental illness,
Coast Mental Health has participated in several important research stud-
ies focusing on a range of important issues related to community living.
Wendy Chan is professor of sociology at Simon Fraser University. She was

a co-leader of the Criminalization, Mental Health, and Addictions team in
the Centre for the Study of Gender, Social Inequities, and Mental Health.
She has published in the areas of gender and mental health, race, racial-
ization, and the criminal justice system, and on welfare fraud and poverty
in Canada. Her publications include monographs and co-edited books:
Racialization, Crime, and Criminal Justice in Canada; Criminalizing Race,
Criminalizing Poverty; Women, Madness, and the Law: A Feminist Reader;
Crimes of Colour; Women, Murder, and Justice.
Sabina Chatterjee is an activist, artist, scholar, and community facilitator.

She worked with street-involved youth for twenty years and was the direc-
tor of antidote: Multiracial and Indigenous Girls and Women’s Network.
Sabina has a master’s degree in dispute resolution from the University
of Victoria and is currently a doctoral student in gender, feminist, and
women’s studies at York University. Decolonization and accountability
by non-Indigenous racialized people, critical race theory, collaborative in-
quiry, social justice, and solidarity are deeply woven within her activist
work and scholarship. Sabina is deeply indebted to the fierce determination
of troublemakers and dreamers whose tireless work to create change has
Contributors 477
made it possible for her to write about matters that are close to her heart.
Whether working with fibres or words, she is grateful to be surrounded by
beauty, possibility, and inspiration every day.
Sarah Chown started working in sexual health during her undergraduate

studies in public affairs and policy management at Carleton University,
Ottawa. Since then, she has worked as a researcher, an educator, and a
health promoter in Kigali (Rwanda), Iqaluit (Nunavut), Guelph (Ontario),
and Vancouver (British Columbia). Sarah works as executive director at
YouthCO HIV & Hep C Society, a youth-driven organization providing
peer support and education around HIV and hepatitis C. She holds a
master of public health degree in social inequities and health concentra-
tion at Simon Fraser University.
Dorothy E. Chunn is emerita professor of sociology at Simon Fraser Uni

versity. She was a co-leader of the Criminalization, Mental Health, and
Addictions team in the Centre for the Study of Gender, Social Inequities,
and Mental Health. She has published both historical and contemporary
analyses in the areas of crime, madness, and social welfare; feminism, law,
and social change; the regulation of lone motherhood; and media repre-
sentations of social issues. Dorothy’s publications include several co-edited
collections: The Legal Tender of Gender: Welfare, Law, and the Regulation
of Women’s Poverty; Reaction and Resistance: Feminism, Law, and Social
Change; and Women, Madness, and the Law: A Feminist Reader.
Natalie Clark (Métis ancestry, and mother of Secwepemc children) is on

the faculty at the School of Social Work, Thompson Rivers University in
Kamloops, British Columbia, on unceded Secwepemc territory. She has fo-
cused on Indigenous and decolonizing research in partnership with commu-
nity. Natalie is currently co-principal investigator of a Social Sciences and
Humanities Research Council (SSHRC)–funded grant, “How Do Mothers
and Caseworkers Develop ‘Care Capital’?: Testing an Asset Building
Framework in Child Welfare Practice,” and of a Canadian Institute of
Health (CIHR)–funded research project with the Native Youth Sexual
Health Network, National Indigenous Youth Council on HIV/AIDS,
and the Canadian Aboriginal AIDS Network entitled “Beyond ‘At Risk’:
Looking Seven Generations Ahead.” She teaches front-line undergradu-
ate and graduate courses on trauma practice. Her practice, teaching, and
research over the last twenty years have focused on trauma with children,
youth, and their families and communities, and on the coping responses to
478 Contributors
trauma and violence including experiences with issues of sexual exploita-

tion; eating disorders; and addictions, youth justice, and health.
Jill Cory has over thirty years of experience in the anti-violence field, work-
ing in front-line policy, training, evaluation, and research. Until 2015 she
was program director of the Provincial Woman Abuse Response Program
at BC Women’s Hospital and Health Centre, where she was responsible for
developing policy, conducting research, establishing province-wide net-
works, and providing curricula and training to support health regions and
communities in implementing strategies and programs to address the health
impacts of violence against women and reduce women’s negative service
experiences. Along with her team, Jill conducted a five-year, province-wide
participatory research project entitled “Building Bridges: Linking Woman
Abuse, Substance Use, and Mental Ill Health.” She is the co-author of
several publications, including SHE Framework: Safety and Health En-
hancement for Women Experiencing Abuse, A Toolkit for Health Care Pro-
viders and Planners; Best Practice Approaches: Child Protection and Violence
against Women, A Curriculum for Child Protection Workers; and When Love
Hurts: A Woman’s Guide to Understanding Abuse in Relationships.
Julie Drolet is an associate professor in the Faculty of Social Work, Central

and Northern Alberta Region, University of Calgary. She is principal
investigator of the “Alberta Resilient Communities Project: Engaging
Children and Youth in Community Resilience Post-Flood in Southern
Alberta,” funded by Alberta Innovates Health Solutions (2015–18), and
of “Rebuilding Lives Post-Disaster: Innovative Community Practices for
Sustainable Development,” funded by a SSHRC partnership develop-
ment grant (2012–16). She is co-investigator in Pathways to Prosperity,
a research alliance dedicated to fostering welcoming communities that
promote economic, social, and civic integration of migrants and minori-
ties in Canada. Julie was previously a domain leader in the Settlement,
Integration, and Welcoming Communities Domain with the Metropolis
BC network. She has published extensively on international social work
and social development with a focus on gender and development, climate
change and disasters, international social protection initiatives, anti-op-
pressive social work field education, qualitative research, and interna-
tional migration and Canadian immigration.
T. Garner holds a doctorate in gender, sexuality, and women’s studies

from Simon Fraser University. Their thesis, “Stitching Up the Natural:
Contributors 479
‘Manboobs,’ Pregnancy, and the Transgender Body,” focuses on the

construction of the (un)natural body through a comparison of gyneco-
mastia surgery, transgender chest surgery, and pregnancy. Garner is the
community organizer for the BC Poverty Reduction Coalition, a project
co-founded by the Canadian Centre for Policy Alternatives, and teaches
within the Gender, Sexuality, and Women’s Studies department at Simon
Fraser University, most recently teaching a course on disability studies and
its intersections.
Louise Godard is a community-based researcher. For the past eighteen

years she has worked in various capacities in the area of violence against
women, including front-line crisis work, community-based research, policy
development, and international work, developing health policy for young
girls trafficked and exploited in the sex trade. She holds a master of social
work degree from Wilfrid Laurier University (Ontario) and was previously
the project coordinator for the Woman Abuse Response Program at BC
Women’s Hospital and Health Centre. Louise’s work has focused on how
women’s and girls’ experiences of violence, access to services, and general
health and well-being intersect with gender and other social determinants
of health. Most recently, her focus has been on uncovering the ways in
which services and systems can be restructured, and how innovative policy
and practice solutions can be employed to foster women’s and girls’ health
and safety in a meaningful way.
Dawn Hemingway is associate professor and chair of the School of Social

Work at the University of Northern British Columbia, with adjunct ap-
pointments in Community Health Science and Gender Studies. She was
on the Recovery and Housing team in the Centre for the Study of Gender,
Social Inequities, and Mental Health. Her research interests include men-
tal health and aging; caregiving; and northern and rural health and quality
of life. Dawn is co-director of Women North Network/Northern FIRE:
The Centre for Women’s Health Research at the University of Northern
British Columbia and serves on the board of a local women’s shelter, sexu-
al assault centre, committee addressing homelessness, and child and youth
mental health agency.
Mohamed Ibrahim is on the faculty at Kwantlen Polytechnic University,

Surrey, British Columbia, and a doctoral candidate in the Faculty of Health
Sciences at Simon Fraser University. He has worked as a mental health cli-
nician and educator in the United States, Canada, and East Africa. His
480 Contributors
efforts in East Africa have included teaching in the School of Nursing in

Mogadishu, Somalia, and work with the Ministry of Health, Kenya, and
Médecins Sans Frontières at Dadaab Refugee Camp, the largest refugee
camp in the world. Mohamed is the founder of a community-based orga-
nization in northern Kenya that provides treatment and support for men-
tal health concerns, promotes awareness, and reduces stigma. His areas of
teaching and research include transnational mental health, mental health
reforms, community mental health, addiction, and holistic approaches to
psychosocial distress.
Viviane Josewski is a doctoral candidate in the Faculty of Health Sciences

at Simon Fraser University. She is a graduate of the doctoral traineeship
program at the Centre for the Study of Gender, Social Inequities, and
Mental Health. Her areas of interest include gender, mental health, and
social inequities, with emphasis on ethical practice, policy, and research
within the post-colonial context of health care reform. Viviane’s doctoral
research explores how current funding environments and contractual ar-
rangements with the Indigenous non-profit sector promote individual,
family, and community mental wellness within the urban, off-reserve con-
text of British Columbia.
Georgia Jules is a youth researcher, Secwepemc Nation. At the time of the

project described in chapter 6 of Critical Inquiries for Social Justice in Mental
Health she was a student at Thompson Rivers University, Kamloops, British
Columbia.
Sean Kidd is chief of psychology in the Centre for Addiction and Mental
Health and is associate professor with the University of Toronto, Depart
ment of Psychiatry. He was a co-leader of the Recovery and Housing
team in the Centre for the Study of Gender, Social Inequities, and Mental
Health. Sean’s interests include examining mechanisms of resilience among
marginalized persons and the effectiveness of psychiatric rehabilitation
interventions. His past work has focused on Assertive Community Treat
ment, policy and service development for homeless youth, and the delivery
of recovery-oriented services.
Terry Krupa is a professor in the School of Rehabilitation Therapy at Queen’s

University, Kingston, Ontario. She was a co-leader of the Recovery and
Housing team in the Centre for the Study of Gender, Social Inequities, and
Mental Health. Terry’s work focuses on issues of social and occupational
Contributors 481
participation experienced by people with lived experience of mental ill-

ness. She has a particular interest in the design of mental health services
and supports that authentically enable experiences of community partici-
pation characterized by inclusion, equity, and access to the full range of
human capabilities.
Talicia Main is a youth researcher, Urban First Nations. At the time of

the project described in chapter 6 of Critical Inquiries for Social Justice in
Mental Health she was a high school student.
Lorraine Halinka Malcoe is associate professor of social epidemiology in

the Joseph J. Zilber School of Public Health, University of Wisconsin–
Milwaukee, and adjunct professor in the Faculty of Health Sciences,
Simon Fraser University. She was a co-leader of the Violence, Mental
Health, and Substance Use team in the Centre for the Study of Gender,
Social Inequities, and Mental Health. Her research has addressed child
health, mental health, and violence against women who experience mar-
ginalization from multiple oppressive systems. Lorraine seeks to develop
participatory and transdisciplinary methodological approaches for study-
ing gender, colonial, race, and class inequities in health. Currently she is
applying critical race, feminist, decolonial, and intersectional theories to
examine health inequities research, with attention to the ways in which the
scientific knowledge production process and resulting scholarship exacer-
bate existing structured inequities or promote health equity.
Indrani Margolin is an associate professor in the School of Social Work at

the University of Northern British Columbia. She was on the Recovery
and Housing team in the Centre for the Study of Gender, Social Inequities,
and Mental Health. Indrani organized and helped establish a Vancouver-
based bachelor of social work program. Her research interests include girls’
and women’s wellness; arts-based inquiry; the role of spirituality in practice
for social workers and clients; and Mahavakyam Meditation: The Ancient
Secrets of Success system. Indrani won an award for a dance-based re-
search program created for girls in an urban school setting and is a lead
researcher with Women North Network / Northern FIRE: The Centre for
Women’s Health Research at the University of Northern British Columbia.
China Mills is a lecturer at the University of Sheffield, United Kingdom. She

carries out research that explores the ways in which the “psy-” disciplines
and psychotropic drugs function in local and global contexts of inequality,
482 Contributors
poverty, and neocolonialism and increasingly under the politics of auster-

ity. Her book Decolonizing Global Mental Health: The Psychiatrization of
the Majority World was published by Routledge in 2014. Since then she has
published numerous articles and book chapters, with a particular focus on
global psychiatrization and pharmaceuticalization.
Marina Morrow is professor and chair of the School of Health Policy and
Management at York University. She was the director of the Centre for
the Study of Gender, Social Inequities, and Mental Health. Marina’s doc-
torate is in community psychology from the Ontario Institute for Studies
in Education at the University of Toronto. Her research interests are in
critical health policy with foci on the following four themes: mental health
reform, service provision, and access to health services; mental health and
social inequity; mental health and citizen engagement; and neoliberal re-
forms, gender, and health.
Dave Murray and NAOMI Patients Association. Dave is the founder of

SALOME/NAOMI Association of Patients, formerly the NAOMI Patients
Association, and facilitates its weekly meetings. He is also a volunteer
at Vancouver Area Network of Drug Users and a board member of the
Downtown Eastside Neighbourhood Council, BC/Yukon Association of
Drug War Survivors, Pivot Legal Society, and the Pacific Hepatitis C
Network, and acting secretary of the Canadian Association of People
Who Use Drugs.
Michelle Patterson is a scientist and adjunct professor in the Faculty of

Health Sciences at Simon Fraser University. She was on the Recovery and
Housing team in the Centre for the Study of Gender, Social Inequities,
and Mental Health. Her research focuses on the intersection of housing,
mental illness, and addiction. She is interested in system-level integration
and change within marginalized communities, and the ways in which sys-
temic factors influence individual and collective perceptions of belonging
and community. Michelle also has a part-time private clinical psychology
practice in Vancouver.
Janette Perz is professor and director of the Centre for Health Research
at Western Sydney University, Australia. She was a co-leader of the Re
productive and Sexual Mental Health team in the Centre for the Study of
Gender, Social Inequities, and Mental Health. She conducts research in the
field of reproductive and sexual health with a particular focus on gendered
Contributors 483
experiences, subjectivity, and identity. Janette has undertaken a significant

research program in sexual and reproductive health, including the experi-
ence of premenstrual syndrome in heterosexual and lesbian relationships;
the development and evaluation of a couple-based psychological interven-
tion for premenstrual syndrome; sexual well-being and reproductive needs
in culturally and linguistically diverse populations; sexual and psychologi-
cal well-being during menopause and midlife; and sexuality and fertility in
the context of cancer.
Ruby Peterson (Pankwa’las) is from ‘Namgis First Nation in Alert Bay,

British Columbia, where she grew up with her mother, Pauline Isaac, her
grandparents, Ben and Dorothy (neé Nowell) Isaac, and her large extended
family. Her work and education have centred largely around the history
and impacts of Indigenous people of Canada and restoring Indigenous
Knowledge healing and wellness practices. She has a private counselling
and mentorship practice in the Okanagan where she lives with her husband
and four children, and she teaches part time at the University of British
Columbia, Okanagan Campus.
Victoria Smye is associate professor and director of nursing, Faculty of

Health Sciences, at the University of Ontario Institute of Technology. Her
program of research focuses on addressing inequity in mental health and
addictions policy and services, located at the intersections of violence, gen-
der, poverty, and Indigenous health. For example, she is leading a SSHRC–
CHIR-funded study entitled “Indigenous Men’s Narratives of Health:
Reclaiming our Lives,” conducted in collaboration with other research-
ers, community agencies, and community members. Other recently con-
cluded CIHR-funded research include “Aboriginal Women’s Experiences
of Leaving and/or Staying with an Abusive Partner,” “Improving Primary
Health Care: Lessons Learned from Two Aboriginal Health Centers,” and
“The Methadone Mess (an International Project).” She is a co-investigator
on several studies, including CIHR-funded health equity research in primary
health care and a Masculinities and Men’s Depression and Suicide Network
project, funded by the Canadian Men’s Health Network “Movember.”
Katherine Teghtsoonian is a professor in the Faculty of Human and

Social Development at the University of Victoria, British Columbia. She
has a long-standing interest in feminist and other critical approaches to
public policy and policy analysis, which is reflected in her previous re-
search on childcare policy debates, women’s policy agencies, and gender
484 Contributors
mainstreaming initiatives within government. Her recent scholarship has

involved a critical analysis of initiatives intended to address the problem
of depression in workplaces and as a public health issue. Like her earlier
work, this research is centrally concerned with an analysis of neoliber-
alizing policies, governing practices, and their effects. She has published
in both discipline-based and interdisciplinary journals, including the
Canadian Journal of Political Science, Critical Policy Studies, Signs:
Journal of Women in Culture and Society, and Social Science & Medicine,
as well as the volume Contesting Illness: Processes and Practices, which
she co-edited with Pamela Moss.
Tanya Titchkosky is a professor in social justice education at the Ontario

Institute for Studies in Education, University of Toronto. Her teaching
and research areas are tied to interpretive approaches to disability studies
informed by Black, post-colonial, and queer theory that work in relation-
ship to phenomenological traditions. Tanya has authored three books –
The Question of Access; Reading and Writing Disability Differently; and
Disability, Self, and Society – and co-edited, with Rod Michalko, Rethinking
Normalcy: A Disability Studies Reader. Her most recent SSHRC-funded
research project is titled “Reimaging the Appearance and Disappearance
of Disability in the Academy.”
Jemma Tosh is a researcher in the Faculty of Health Sciences at Simon

Fraser University. Her research incorporates critical psychology, feminist,
queer, trans, and intersex perspectives with a particular focus on gender,
sexual violence, and related psychiatric diagnoses. Jemma is the author of
Perverse Psychology: The Pathologization of Sexual Violence and Transgen-
derism and Psychology and Gender Dysphoria: Feminist and Transgender
Perspectives. She has written extensively about her opposition to psychiat-
ric treatment that discourages gender creativity in children.
Tara Tribute (of Mohawk ancestry) has a master of education degree and
is a First Nations counsellor in School District 73, Kamloops, British
Columbia. At the time of the project described in chapter 6 of Critical
Inquiries for Social Justice in Mental Health she was a youth counsellor
with the Kamloops Aboriginal Friendship Society.
Jane M. Ussher is professor of women’s health psychology at Western

Sydney University, Australia. She was a co-leader of the Reproductive and
Sexual Mental Health team in the Centre for the Study of Gender, Social
Contributors 485
Inequities, and Mental Health. She has published widely on the construction
and lived experience of health, in particular women’s mental health, the
reproductive body, and sexuality. Jane is editor of the Routledge Women
and Psychology book series and is author of a number of books, including
Women’s Madness: Misogyny or Mental Illness?; Managing the Monstrous
Feminine: Regulating the Reproductive Body; and The Madness of Women:
Myth and Experience. Her current research focuses on sexual and reproduc-
tive health, with particular emphasis on premenstrual experiences, sexuality
and fertility in the context of cancer, and the sexual health of culturally and
linguistically diverse women.
Patrick Walton (of Métis ancestry) is a faculty member in the School of

Education at Thompson Rivers University, Kamloops, British Columbia.
His research focuses on the development of curricula to teach Aboriginal
children pre-reading skills and reading strategies that include the use of
songs and movement. Patrick is also interested in Aboriginal university re-
tention, and his research in this area has resulted in a report to Thompson
Rivers University; it will be used to assist in developing strategies that are
being designed by the university.
Denise Zabkiewicz is a social epidemiologist and associate professor in the

Faculty of Health Sciences at Simon Fraser University. Her research fo-
cuses on the social and economic factors related to mental health among
women living in poverty. Recently her work has examined issues of family
fragmentation among homeless women living with mental illness, and how
the role of mothering influences trajectories of mental illness and housing
instability.
Index
ableism, 11, 46, 323, 327, 329n7 African Health Care System, South
abnormal/normal, 262–3, 338, 344 Africa, 128
Aboriginal: deaths in police custody, African Mental Health Foundation,
4; two-spirit, 259; women’s experi- Nairobi, Kenya, 128
ences, 416; youth, 168–9, 178; African Mind in Health and Disease,
abuse, services and systems for women The (WHO, Carothers), 118
with experience of, 413–42 African Union, 114
activism, 142, 144, 147, 153, 158, Age 13 (1955), 348, 351
454, 458; overview, 7, 10, 12, 16, AIDS Action Now! (AAN!), 446
19, 20, 22, 230. See also gay men; AIDS Coalition to Unleash Power
Indigenous (traditional) knowl- (ACT UP), 446
edge; intersectional activism, Alberta’s Sexual Sterilization Act, 449
analysis, and framework; intersex Alfred, Taiaiake, 169–70
and intersexuality; LGBTIQ2S; Algiers School of Psychiatry, 116
lived experience; Mad activism, allies, 147, 154, 161n7, 256
politics, and liberation; neoliberal- American Psychiatric Association
ism; responsibilization; SALOME/ (APA), 255–6, 266–7
NAOMI Association of Patients American Psychological Association,
(SNAP); transgender; Vancouver 267
Area Network of Drug Users Angry Boy (1951), 351
(VANDU) Antidepressant Skills at Work (Bilsker,
Africa, mental health, 113–37; healing Gilber, and Samra), 232
systems, 126; language and culture, anti-psychiatry movement: about,
122; mental health research, 127–8; 33, 50n2; compared to feminist
services in, 119–24; traditional academic critiques of psychiatry,
knowledge, 121 35–6; compared to mental patients’
488 Index
liberation movement, 34; “right to biomedical psychiatry. See biomedicine

be different,” 336. See also biomedi- biomedicine, 49, 75, 90, 416, 417; bio-
cine; mental patients’ liberation medicalism and psychiatry, 37–42;
movement challenges of, 433; effectiveness of,
arts-based methods: collage used in, 126; ethics and inequities, 63–4, 76;
401–2; for creating research spaces, as form of oppression, 115, 117,
386–412; film-making used in, 255, 416, 426; as harmful, 120,
392–3; language arts used in, 393; 123, 124; legitimacy questioned,
movement (gesture and improvisa- 127–8, 131; and neoliberalism,
tional) used in, 402; photography 42–6; normalized, 39, 50n7; over-
used in, 390–2; visual arts used in, view, 5, 6, 7, 13, 14, 33; rationale
393 for, 125; versus traditional
arts-based research: definition, 387; knowledge, 127–8; used to justify
lived experiences, 387; review, colonialism, 114. See also anti-psy-
389–95 chiatry movement; mental patients’
Assyrian refugees: Australian study, liberation movement; premenstrual
212–16 changes; psychiatry
Attitudes and Health (1949), 353 biopower, 301
Australia: study of Assyrian and biopsychiatry, 36, 46, 78, 90, 92, 97
Karen refugees, 212–16; study of Blackbridge, Persimmon, 33–4
PMS sufferers, Anglo-Australian, Black feminists, 10, 63, 170, 337–8,
200–12 386, 447. See also feminism and
Ayana or Mingis (folkloric healing feminist movement; people of
system), 124 colour; racialization; racism
Bland, R.C., 315, 327–8n1
Bannerji, H., 457 borderline personality disorders, 417,
Barrie Native Friendship Centre, 425
162n9 Bottom Line Conference (2013), 233
BC-Yukon Association of Drug War Boy with a Knife (1956), 348, 351
Survivors, 371 Braedley, S., 43
Beam, Joseph, 444 bricolage, 79
Beauvoir, Simone de, 305 British Columbia, 34, 44–5, 48, 50n3,
Becker, Howard, 357n7 166–7, 172–3, 230, 244–6, 380–1,
Bell Canada, 231, 320 395–6
Bhabha, Homi, 79 British Psychological Society, division
Bilge, S., 12 of clinical psychology (DCP), 37,
Bill of Client Rights, 76 267
Billy, Irene, 179–80 Bröckling, U., 234, 236
biological psychiatry. See biomedicine Browne, A.J., 76, 77
Index 489
Bruce, D., 463, 464, 466 Chamberlin, J., 34–6

Burstow, B., 11–12, 50n4 Chance to Play, A (1950), 352, 353
Business and Economic Plan (Global Chantler, K., 47
Roundtable), 242 Chase, C., 269–70
Chazan, M., 152
Canadian Association of People Who Chesler, Phyllis, 36
Use Drugs (CAPUD), 371 Chrisler, J., 199, 216, 217
Canadian Association of University cisgenderism, 255, 257, 260–1, 266,
Teachers, 245 307, 307n1
Canadian Charter of Rights and cissexism, 454
Freedoms, 66 class and classism, 77, 90, 170, 230,
Canadian HIV/AIDS Legal Network, 292, 334, 394, 451; analysis of, 241;
369–70 assumptions based on, 198, 257–8,
Canadian Institutes of Health 263, 335, 339–43, 449; differences
Research (CIHR), 239 ignored, discriminatory, 37, 68,
Canadian Mental Health Association 72; different health outcomes, 62;
(CMHA), 232, 235 inequities in, 218, 386, 430, 467;
Canadian Standards Association, 244 intersected with race and gender,
Cannon, M., 180 63, 296, 337, 402–3; legislation
capabilities-informed approaches based on, 366; overview, 3, 7, 10,
to social justice, 67 13, 16, 18; power mediated through,
capitalism: analysis of, 241; intersected 47; structural differences, 67.
with colonialism and gender, 170; See also madness in the media
and neoliberalism, 8; and political Clean Living Recovery, 327n1
economy, 241; as system of oppres- cognitive behavioural therapy (CBT),
sion, 10, 11, 419, 429, 454 232, 237, 265
Caplan, P., 262, 269 cognitive enslavement, 87
care, ethics of, 67, 69 cognitive injustice, 87
Cariboo Tribal Council, 174 Collins, Patricia Hill, 10, 337–8, 417,
Carless, D., 393–4 449, 455
Carothers, J.C., 118, 126 colonialism, 87–109; versus colonial-
Cartwright, S., 117 ity, 88; and decolonization, 113–37,
Centre for Addiction and Mental 138–64; definition, 63, 80n2; as
Health (CAMH), 76, 267, 269, 273n9 form of oppression, 46–7, 80n2,
Centre for the Study of Gender, Social 88, 122, 419, 429, 454; and hetero-
Inequities, and Mental Health, ix, sexism, 463; as metaphor, 93–4;
x, 415 ongoing, 40–1, 167, 170; overview,
centre in the margins, 445, 447, 457–60, 4, 9, 11, 14, 15, 21; resistance to,
465–8 174; as structural factor, 36, 169,
490 Index
414; and structural racism, 177–82. Danforth, Jessica, 183

See also Indigenous youth (urban); dargahs, 97
neocolonialism; settler colonialism decolonization: human rights ap-
colonization, 87–109, 152, 169–70. proaches to, 113–37; social justice
See also decolonization; psychiatri- dialogues, 138–64
zation; settler colonialism decolonizing research and practice.
colonization of the mind, 87 See decolonization; Indigenous
community, virtual, 287 youth (urban)
community-based (participatory) Deegan, Patricia, 388
research, 171, 173, 371, 382, 394, de-institutionalization, 35, 38, 44
457, 459. See also participatory Denzin, N.K., 76–7, 79
action research depression, 219, 237, 249n1
compliance therapy, 265 depression in the workplace, 229–54;
Conrad, P., 318, 426 business response, 231; cost of,
constructivism and constructivist 249n2; feminist analysis, 241–7;
epistemology, 304–5, 401–2. See gender, 242–3; governing practices,
also social constructionism 236–40; government responses,
Convention on the Rights of Persons 229–30, 232; in hierarchy of re-
with Disabilities (CRPD), United search, 239, 250n6; resilience train-
Nations, 120, 129–30, 132n1 ing, 236; sexual orientation, 243;
Crenshaw, Kimberlé, 10, 170, 337–8, for women in academia, 246
447, 451 Derrida, J., 262
criminalization: of drugs, 368–9; Dhamoon, R.K., 448–9
of Indigenous people, 4, 113; of Dhareshwar, V., 99
psychiatrized people, 114, 118. Diagnostic and Statistical Manual
See also drug policy in Canada of Mental Disorders. See DSM
critical disability studies, 48, 314, 355 (APA)
critical realist epistemology and ap- disability: benefits, 44–5, 230–1; case
proach: discussion of, 37, 78, 200; management of, 236, 238–9; con-
overview, 16, 21. See also material- cepts of, 72–3; and human rights,
discursive-intrapsychic (MDI) 129–30, 132; and mental illness,
approach; relational approaches 125; psychosocial, 113, 129–32,
to social justice 132n1; and unemployment, 68,
critical theory, 8–9, 12, 15, 20, 76–8 73, 78
cultural appropriation, 273n7 Disability-Adjusted Life Year (DALY),
cultural competency, 168, 186n2 124
cultural safety and culturally safe Disability Benefits Program Act
practices, 47, 169, 172, 175, (British Columbia), 44–5
178–80 disability case management, 238–9
Index 491
discourse: definition, 418; experts ver- egalitarian theories of social justice,

sus lived experience, 421–4; leaving, 66–7
427–31; pathologizing, 424–7 electroconvulsive therapy (ECT), 4,
discourse analysis, 201, 290–1, 418–19 11–12, 116–18, 120–1, 344, 355
discrimination, 269; effects of, 243–4; Emerson, Larry, 144
experience of, 114; within mental Emke, I., 266
health services, 405; against people employment, 45, 340; barriers to, 68,
with psychosocial disabilities, 114; 73–4; as indicator of resilience, 462;
and sanism, 40, 47; structural, 36, at L’Arche houses, 346; overview, 3;
260, 374, 414, 462; against trans return to, 42. See also depression
people, 270, 288; against victims in the workplace; unemployment
of abuse, 427; working against, Employment and Assistance for
168, 337. See also stigma Persons with Disabilities Act
distress: and mental health, xi–xii, 21, (British Columbia), 44–5
34, 37–9, 50n4, 87, 89–98, 102–3, Empty Life, The (1961), 343
125; premenstrual, 197–221; trans- epistemicide, 98, 102–3
sexualism versus gynecomastia, Ethical Engagement of People Who
289–90 Inject Drugs in HIV Prevention
documentaries: list of, 356–7. See also Trials (UNAIDS), 370
madness in the media ethical issues: drug policies, 365–85; eth-
domination: and colonialism, 88–9, ics of care, 69; ethics of consent, 100;
182, 186n1; interlocking systems of, feminist ethics, 69; and gender iden-
11, 337, 429, 448–9, 454–6; matrix tity, 260; guidelines, 172; Indigenous
of, 337, 356; and privilege, 452, 458, ethics, 172; theories, 60–74
460; and social justice, 63 ethical theory and mental health
Downie, J., 69 inequities: critical relational un-
Downtown Eastside (DTES, derstanding, 69–74; redistributive
Vancouver, BC), 365–85 paradigm, 64–8
Driskell, Qwo-Li, 182 eugenics, 7, 18, 116, 334, 355
Drucker, Ernest, 370 experts: versus non-experts, 313–32;
drug policy in Canada, 366–70, 378, 382 participants becoming, of their own
DSM (APA): about, 334, 357n2; criti- lives/experiences, 390, 394, 416;
cism of, 8, 37–8, 258, 263, 267, 355; versus people with lived experience,
shift of terminology, 255–6, 263–4, 421–4; versus traditional knowl-
285, 307–8n2, 443 edge, 158; use of certain tools, 240
Dua, E., 152
Duong, K., 451 Faces of Depression (1958), 344, 346
Duran, B., 159 Fanon, Frantz, 90–5, 101, 103
Duran, Eduardo, 141, 159 Feder, E., 263
492 Index
female-to-male transition, 293–8 Galgalpotla (hold one another up),

Feminine Mystique (Friedan), 257–8 150, 159
femininity, idealized, 209, 347 Gandhi, Mahatma, 100
feminism and feminist movement or Gay/Bi/Queer Trans Men’s Working
perspective: and concept of power, Group, 455
250, 420; critique of positivism, gay men: health activism and research,
354; critique of psychology and 446–7, 452–60; term usage, 443,
psychiatry, 33–5, 255, 266; over- 468n1. See also homosexuality;
view, 5, 10, 11, 12, 13, 16–17, 19; LGBTIQ2S; queer and queer
and psychiatric survivors, 36; rela- theory
tionship to mental patients’ libera- gender: assigned, 264; assumptions
tion movement and anti-psychiatry of, 256, 272n3, 399; as cultural
movement, 33, 50n2; support construct, 182, 257–60, 273n7, 286,
for PTSD, 425; and transgender 288, 307–8n2; in-patient care, 405;
community, 267–8. See also Black roles, expectations of, 212, 258, 406
feminists; intersectionality; Mad gender creativity. See transgender
activism, politics, and liberation; gender dysphoria (formerly gender
post-colonial feminism; post- identity disorder), 255–61, 272n1–2,
colonial frameworks 285
feminist analysis, 20, 33, 198, 201, gendering, discourse, and power. See
208–9, 230, 241–8 depression in the workplace; non-
feminist social justice framework, conformity (gender) or psychiatric
40–1, 67, 69, 402, 432, 450 non-compliance; premenstrual
feminist theories, 69–70, 158, 216, changes
250n5, 417–9; overview, 20, 21, 22. gender non-compliance, 255–82
See also intersectionality gender non-conformity. See
Fernando, S., 98 transgender
film-making. See arts-based methods Gender Shock (Burke), 260
Finney, Sandrina de, 171 Ghana, 115, 121
First Peoples of Canada, 141. See also GID Reform Advocates, 267
Indigenous themes Gilfus, M.E., 426
food insecurity, 271, 379, 435 Gilhooly, Sheila, 33–4
Foucauldian discourse analysis, 201, GIPA/MIPA, 447, 457, 459
290–1 Gleason, Mona, 335, 338, 339–40, 343
Foucault, M., 71, 233, 250n5, 250n6, Global Burden of Disease (WHO), 124,
263, 290, 298 128
Fourth World, The (Manuel), 179 Global Business and Economic
Fraser, N., 70, 72, 74 Roundtable on Addiction
Freire, P., 141 and Mental Health (Global
Frieden, B., 257–8 Roundtable), 231, 242–4, 250n4
Index 493
global psychiatrization. See psychia- See also gynecomastia; homopho-

trization, global bia; madness in the media
Goffman, E., 315–16, 323, 327 heterosexual: self-identified in study,
Gordon, D.R., 7 200–12, 217, 220
Gordon, H.L., 117 “hierarchy of credibility,” 346, 358n7
Gorman, R., 49 Higginbotham, N., 98
governing practices and policies, Hinduism, 140, 161n1
236–40, 249n3. See also depression Hinkson, Chief Justice, 381
in the workplace HIV/AIDS, 119, 369–70, 443–74. See
governmentality, 43, 230, 233–5, also people living with HIV/AIDS
240–2, 247, 250n5 (PHAs)
greater and meaningful involvement homophobia and internalized
of people with HIV/AIDS (GIPA/ homophobia, 259, 444, 453, 461,
MIPA), 447, 457, 459 464–6
Great-West Life Centre for Mental homosexuality, 335–6, 341, 348, 351.
Health in the Workplace, 231 See also gay men; heterosexism; les-
Guarding Minds @ Work, 237 bians and lesbianism; LGBTIQ2S;
Gwadz, M.V., 464, 465, 466 two-spirit
gynecomastia, 285, 289, 299–305 hooks, b., 457
“house” of knowledge, 144, 161n4
Hall, Stuart, 354 housing, 42, 44, 45, 62, 75, 247, 288,
Hancock, A.M., 78 346, 421–2; housing first, 42; lack
Hankivsky, O., 67, 69 of social housing, DTES, 368, 371;
harm reduction, 64–5, 369, 373 overview, 3, 20; recommendations,
Hassan, Mohamed Abdullah, 119 379; stability of, marker of resil-
HAT, 365–85 ience, 465–6
health care systems, 39, 44, 47–8, 70, housing insecurity, 414–16, 419, 428,
75–6, 122–8, 246 429, 431, 432, 435, 466
Herman, J., 425 human immunodeficiency virus
Hermaphrodites with Attitude, 270 (HIV). See HIV/AIDS
heroin-assisted treatment (HAT), human rights issues: addressing
365–85 violence against women, 435; ap-
Herrick, A.L., 462, 465, 466–7 proaches to decolonization, 113–37;
heterosexism: assumption of, 264; and colonization in Canada, 152;
and colonialism, 463; as form of drug policies and services based on,
oppression, 419, 448, 455, 466; as 382, 446; equality for gay men, 446;
the norm, 263, 449; overview, 11, ethical guidelines, 172; inequities in
16, 33, 444; and racism, 454, 464; health as, 65; overview, 15, 113, 114
reinforced by traditional custom, Human Rights Watch, 115
47; in the workplace, 243–4. Hunt, Sarah, 172
494 Index
Ibáñez-Carrasco, F., 459, 467 neoliberalism, 42–3, 235; resistance

ICL (Indigenous-centred learning), to, 49; social justice theories, 64–9, 76
142 inequities in mental health, frame-
identity politics, 70 works of: and ethical theories,
IH (internalized homophobia). See 63–74; and (re)distribution, 70,
homophobia 72, 77–9. See also intersectional
immigration and immigrant experi- activism, analysis, and framework;
ences, 11, 152, 198, 245, 407, 419. post-colonial frameworks; social
See also under Australia determinants framework
impairment versus disability, 72 insane liberation, 50n1. See also
imperialism: overview, 33; psychiatry anti-psychiatry movement; mental
as, 33, 96, 98 patients’ liberation movement; Mad
India, 95–8, 259 activism, politics, and liberation;
Indian Act (Canada), 181 Mad studies
indigeneity, 170, 180, 183, 462 institutionalization, 34–8, 336, 343–5,
Indigenous-centred learning (ICL), 142 350–2, 398, 404, 449
Indigenous themes: colonization, insulin coma therapy, 117
167; culture by specific nation, 177; interdisciplinarity, 64, 79, 142, 161n2
decolonization, 167; documenta- internalized homophobia (IH).
ries of early nineteenth-century See homophobia
Canada, 339; feminists, 63; healing international classification of disease
and health, 97, 102, 167, 174, 177; (ICD), 37
identity, 174–6, 179; importance of International Network of People Who
languages, 176, 179, 181; intersec- Use Drugs (INPUD), 371
tionality, 46–7, 169; lived experi- Internet and American Life Project
ences of researchers, 169; protective (Pew Research Center), 286
factors for youth, 168, 181; scholar intersectional activism, analysis, and
recognition, 70; self-determination, framework, 20, 62–3, 77, 146, 268,
70; spirituality, 176. See also colo- 269, 355, 386
nialism; decolonization; residential intersectional and Mad studies frame-
schools; settler colonies and works, 33–59
communities; two-spirit intersectionality, 20, 419; about,
Indigenous (traditional) knowledge, 386; Black feminists, 337–8; data
96, 141–4, 149–51, 155, 157–8, analysis of, 396; explanation, 46–7;
164n4, 172, 185 and Indigenous peoples, 170; and
Indigenous youth (urban), re- Mad studies, 46–9; overview, 10,
imagining mental health, 165–93 11, 12, 13, 17, 18, 20; and post-
individualism: as dominant ideology, structuralism, 255; queer theory
417; overview, 8, 10; policy changes perspectives, 450–2; scholarship
in BC toward, 45; reinforced by on approach, 47; social justice,
Index 495
and mental health inequities, 77–9; Kirby, Michael, 118

term usage, 447. See also feminism Kirkham, S.R., 76, 77
and feminist movement; feminist knowledge-power nexus, 38–42.
theories; Indigenous themes; lesbi- See also biomedicine
ans and lesbianism; post-colonial Koggel, C.M., 69
frameworks; resistance; sanism; Kreitzer, L., 121
social justice approaches Krieger, N., 6
intersectionality approach to resilience Kwakwaka’wakw: museum and cul-
research, 443–74 tural centre, 162n11; teachings, 144
Intersectionality-Based Policy
Analysis Framework (IBPA), 47–8 Lafrance, Michelle, 209–10
intersex and intersexuality, 256–7, Lang, Sabine, 259
261–2, 264, 266–70 language arts. See arts-based methods
Intersex Society of North America, Laqueur, Thomas, 288
270 L’Arche houses, 345–6
Iraq. See Assyrian refugees Lawrence, B., 152, 181
“It Gets Better” campaign, 467 Laying Our Stories Bare project,
It Takes All Kinds (1950), 347, 353 162n12
Leaky, Louis, 118
Jealousy (1954), 342 Lemke, T., 234, 235
Jean Vanier Opens First L’Arche House lesbian, gay, bisexual, trans, intersex,
(1965), 345 queer, two-spirit (LGBTIQ2S).
Joseph, Christine. See Wa’ta (Christine See LGBTIQ2S
Joseph) lesbians and lesbianism: in arts-based
Junkiebond (Rotterdam, Netherlands), research, 397–8; hospitalized
368 for, 33–4; and intersectionality,
170; in the workplace, 243, 456.
Kamloops Aboriginal Friendship See also Australia; homosexual-
Society (formerly the Interior ity; LGBTIQ2S; queer and queer
Indian Friendship Society), 166, theory
171, 178 Let’s Talk campaign, 320
Kanani, N., 449 LGBTIQ2S, 33, 153, 268, 443, 451,
Karen refugees, Australian study, 467, 469n2. See also gay men; ho-
212–16 mosexuality; intersex and intersexu-
Kennedy, N., 257, 269 ality; lesbians and lesbianism; queer
Kenya, 114–21, 128 and queer theory; transgender;
Kenya National Commission on two-spirit
Human Rights (KNCHR), 115, Li, T.M., 240–1, 247
120, 131 libertarian rights-based approaches
Keropudas Hospital (Finland), 42 to social justice, 65–6
496 Index
Liegghio, M., 63, 70 Marsh, Teresa, 150

Like a Death Sentence (Human Rights masculinity, idealized, 347
Watch), 115 material-discursive-intrapsychic
Lincoln, Y.S., 76–7, 79 (MDI) approach, 37, 200, 216, 217
lived experience: access through arts- Mathari Lunatic Asylum, Kenya, 118;
based research, 387; at centre of documentary about, 131; escaped
social justice frameworks, 46; patients, 124
legitimate or valued, 34, 78, 403, Mau Mau uprising, 117, 118
417, 449, 457–8; women in psychi- McKenzie-Mohr, Sue, 209–10
atric hospitals, 400 McNeil-Seymour, Jeffery, 182
Llewellyn, J.J., 69 MDI approach, 37, 200, 216, 217
Locked Up and Forgotten (CNN), 131 media, madness in, 333–61
Loewen, A., 352 media as a site of social (in)justice.
looking in one direction (concept), See madness in the media; preva-
171 lence problematic in mental illness
Lopes, Tina, 433–4 discourse
Lunacy Act (African countries), Megaphone (Street Corner Media
118–19; in Nigeria, 132 Foundation), 382n1
Luxton, M., 43 mental distress versus mental health
Lyautey, Hubert, 116 or mental illness, 36, 50n4, 349
mental health: alternate modes of
Macfarlane, E., 66 portraying, 313, 329n6; awareness
MacKay, G., 180 campaigns, 313, 328n5; decoloniza-
Mad activism, politics, and liberation, tion of research, 169–70; frame-
10, 22, 35–6, 50n1, 50n6, 69–70, 93, works of inequities, 40–1, 62–3;
326–7, 355 global, 124–7; services and supports
“Mad Mullah.” See Hassan, for women, 414, 415; for urban
Mohamed Abdullah Indigenous youth, 165–93; and
madness in the media, 333–61 worker productivity, 238–40. See
Mad People of Colour Manifesto, 93 also mental distress versus mental
Mad studies, 10, 11, 33–49, 355 health or mental illness; mental
Making Sex (Laqueur), 288 illness
maldistribution and misrecognition, Mental Health Act (African countries),
72–4 118–19
Manuel, George, 179 Mental Health Act (India, 1987), 97
Marcedo, Donald, 141 Mental Health Commission of
Marcus, S., 451 Canada (MHCC), 229, 324
marginalization, defined, 416 Mental Health Gap Action Program
Marsella, A.J., 98 (mhGAP), 96, 124
Index 497
mental health users’ associations, Multicenter AIDS Cohort Study, 461

129–32 Mwasipile, Ambilikile “Babu,” 123
Mental Hospital (1953), 345
mental hospitals: psychiatric racism, ‘Namgis Nation, 143–4, 149
115–19 Nandy, A., 90, 99, 102
mental illness: age of onset, 388; as- NAOMI Patients Association (NPA),
sumption of treatment, 326; context, 365–85
426; depression as, 249n1; illness National Association of Friendship
versus social context, 39; need for Centres (NAFC), 166, 172
expert, 312–25; prevalence problem, National Film Board (NFB), 336
312–32; prevalence statistics, 312, National Gay and Lesbian Taskforce,
327–8n1; “problem people,” 318; re- 267
configuration of dissent and distress, National Institute of Mental Health,
91; and sexual abuse, 389; stereo- 267
types, 346; study using arts-based National Standard, 244
methods, 395–400; term usage and Nedelsky, Jennifer, 66
alternatives, 333, 357n1. See also neocolonialism, 63, 173, 416. See also
biomedicine; mental health; psychia- colonialism; settler colonialism
trization; psychosocial disability neoliberalism, 322, 354–5; activism
mental injuries, government policies against, 49; and biomedicalism, ef-
on, 249n3 fect on policy, 39, 42–6; definition,
mentalism. See sanism 43; feminist analysis and depres-
mental patients’ liberation movement, sion, 242–7; and governmentality,
34, 35–6, 50n1, 50n2. See also 233–9; government support of, 48;
anti-psychiatry movement; Mad and libertarianism, 65; overview, 8,
activism, politics, and liberation; 10, 12, 13, 16, 33. See also depres-
Mad studies sion in the workplace
mganga (traditional healer, Swahili), New Future, A (CBC), 342
123 Newman, S.C., 315, 327–8n1
Miller, Peter, 233–4, 240 Nhat Hanh, Thich, 162n13
Moncrieff, J., 94 Nigeria, 120, 122, 126, 132
Morris, J., 67, 72 Nkwenkwe, Nonthetha, 119
Mosher, Loren, 92–4, 99 non-compliance, 255–82, 265–6
movement (gesture and improvisation- non-conformity (gender) or psychiat-
al). See arts-based methods ric non-compliance, 255–2
Movement for Global Mental Health, non-expert help, 312–25
89, 93–4, 96, 98, 114, 124–5 normal/abnormal, 262–3, 338, 344
MSM, 461–6; term usage, 443, 462, North American Opiate Medication
468n1; young, transgender, 464 Initiative (NAOMI), 365–85
498 Index
Nothing about Us without Us Other, person as, 323–5

(Canadian HIV/AIDS Legal Our Bodies, Ourselves (Boston
Network), 369–70 Women’s Health Collective), 265–6
NPA. See NAOMI Patients
Association (NPA) Palestine, 91, 94
Pan African Network of People
OECD, 249n2 with Psychosocial Disabilities
“On Not Being White” (Shepherd), (PANUSP), 102, 114, 129
447–8 Pan African Network of Users
“Open Dialogue” (Finland), 42 and Survivors of Psychiatry. See
Opening Minds, 324 PANUSP
operationalizing social justice in men- Pancha Mahabhutas, 140
tal health: intersectionality, social PANUSP, 102, 114, 129
justice, and mental health inequi- parity of participation, 74, 77–9
ties, 77–9 Parr, H., 392–3
Opium Act (Canada, 1908), 366 participatory action research (PAR),
oppression and oppressive systems or 172–3, 459. See also community-
practices: and arts-based research, based (participatory) research
400–4; experience of, 424, 429, Patel, V., 95
430; intersecting systems of, 75, patriarchy: analysis of, 33–4; and co-
170, 269, 271, 337, 419, 447, 455; lonialism, 182, 259–60, 339; as form
of Mad subjects, 48–9; overview, of oppression, 416–17, 429, 448,
12–15, 19, 20, 22, 113–14, 386–7; 454; overview, 12; service delivery
psychiatrization as, 63; and settlers outside of, 102; structural, 88
of colour, 153–4; in social context, people living with HIV/AIDS (PHAs),
95; and social justice theories, 446, 457, 469n3
66–74; stigma as social oppression, people of colour, 143–4, 151–3, 330–1,
323. See also biomedicine; capital- 447, 451, 464. See also intersection-
ism; colonialism; heterosexism; ality; racialization
patriarchy; poverty; sanism; Pew Research Center, 286
sexism pharmaceutical industry, 92–4. See
Organisation for Economic Co- also psycho-pharmaceuticals
operation and Development PHAs, 446, 457, 469n3
(OECD), 249n2 photography. See arts-based methods
Organization Intersex International Physical Treatment (1957), 344
Australia, 256 politics of difference, 69–71
Organization of African Unity positivism, 76, 354
(OAU), 114 post-colonial feminism, 63, 77.
Orn, H., 315, 327–8n1 See also feminism and feminist
Osborn, Bud, 369 movement
Index 499
post-colonial frameworks, 40–1, 63, responsibilities, 208–10; responses

94, 152. See also decolonization; by others, 210–12; and stress/con-
feminism and feminist movement; flict avoidance, 204–6; vary across
intersectionality cultures, 197–8
postmodern feminist theories, 69–70, premenstrual dysphoric disorder
78 (PMDD), 197
post-natal depression, 218 premenstrual syndrome (PMS), 197,
post-structuralist theory, 255 198, 210–12, 215, 219
post-traumatic stress disorder premenstrual tension. See premen-
(PTSD), 38, 424–6 strual changes
poverty: in African countries, 126; prevalence problematic in mental ill-
from effect of colonialism, 167; ness discourse, 312–32
experience of, 149, 153, 155, 235; Prince, R.H., 126
as form of oppression, 46, 47; “processes of differentiation,” 448
intersection with other structural psychiatric non-compliance, 255–82
factors, 419–20, 422, 428–9, 431–2, psychiatric racism: mental hospitals
453; and other risk factors, 389; as, 115–19
psychiatric perception of, 91; re- psychiatric survivors, 36, 50n1, 327,
sponsibilization of, 235; as struc- 357n1
tural factor, 36, 43, 68, 73, 169, 368, psychiatrization: definition, 63; of gen-
380, 389, 414–16 der non-conforming people, 271–2;
power: analysis of, 49, 76, 417–18, global, 87–109, 119; of intersex and
452, 454; from colonialism, 63, 172; transgender children, 261–2; lived
Foucault’s model, 71, 201, 250n5; experience of, 36; and Mad studies,
making disparities visible/explicit, 48; overview, 11, 14, 22
80, 291, 387; perceptions of, 199; psychiatry: alternatives to, 101;
of psychiatric experts, 261–5; rela- bolstered patriarchy, 34; colonial,
tions of, 46–8, 68, 96, 349–50, 415, in Africa, 113; conferences on,
421–3, 448; between researchers 50n5; decolonization of, 100–3;
and participants, 390–4; role in by early feminists, 33–7; as form
social justice, 40 of colonization, 89–92; gender
premenstrual changes, 197–228; non-conformity as pathological,
Anglo-Australian study, 200–12; 257; normalized, 39, 50n7; orga-
Assyrian and Karen refugee study, nizations against, 103n1; radical,
212–16; and care of self, 206–8; by Mad activists, 36; redefined
coping strategies, 204–10; descrip- as psycho-pharmacology, 94. See
tions of, 201–2; list of symptoms, also anti-psychiatry movement;
198; lived experience, 200; normal- biomedicine; colonization; mental
ization of, 202–4; versus PMS, 218; patients’ liberation movement;
positive, 199–200; and relational psychiatrization
500 Index
“Psychology of the Mau Mau, The” racism: anti-racist frameworks, 152;

(Carothers), 118 and colonization, 154; experience
psycho-pharmaceuticals, 93, 99, 102, of, 153; as form of oppression, 34,
125 46, 49; ideologies that support, 40;
psychosocial disability, 113, 133n1 institutional, 167; intersected with
Psychosurgery and Shock Treatment classism and genderism, 63, 419;
(1959), 344 intersected with sexism, 447; over-
“psy-” disciplines. See biomedicine; view, 10, 11, 33, 34; psychiatric,
psychiatrization; psychiatry 115–19; and settler colonialism,
public education, films on mental ill- 449; as structural factor, 36, 169,
ness. See madness in the media 414, 429, 454; in the workplace,
244
qualitative versus quantitative re- Ramsden, Irihapeti, 172
search, 174; comparative impor- Raphael, D., 62
tance of, 41 rationalist liberal individualism, 66
queer and queer theory, 443, Rawls, J., 66
450–2, 469n2. See also gay men; Raymond, Janice, 301–2
homosexuality; intersex and Razack, S.H., 4
intersexuality; lesbians and lesbian- Recent Modifications of Convulsive
ism; LGBTIQ2S; transgender; Shock Therapy (1941), 344
two-spirit recognition, politics of, 69–74, 76–9
Recovering Lives (film), 393
race, 62, 68; assumptions about, 296; recovery: overview, 386–92, 395–407;
and drug policies, 366; effects of, projects, 103n
455; and indigeneity, 462; intersec- redistributive paradigm: egalitarian
tion with age, 395; intersection theories, 66–8; libertarian rights-
with gender, 40, 178, 337, 350, 447, based approaches, 65–6; utilitarian
448; intersection with gender and approaches, 64–5
illness, 398; and mental illness, 394; reductionism, 6, 78, 99
overview, 3, 7, 11, 13, 142, 333, reflexivity, 185; reflexive gaze or lens,
334, 386; as social factor, 292, 354; 76, 78; self-reflexivity or self-
as structural factor, 67. See also reflexive praxis, 322, 449, 458–60,
arts-based methods; colonization; 463, 467
intersectionality; madness in the relational approaches to social justice:
media; people of colour; settler discussion of, 62–3, 64, 66, 69–80,
colonies and communities 204, 208–10, 292, 419–23, 431–4;
racialization, 90–1, 115–17, 386, 389, overview, 9, 13–14, 16, 61. See also
395, 403, 463–4; effects of, 245–8, arts-based methods; critical realist
340–2; racialized identity, 143–4, epistemology and approach; MDI
151–2, 230 approach; social justice approaches
Index 501
researcher-as-bricoleur, 79 SALOME/NAOMI Association of

research spaces, creation of using arts- Patients (SNAP), 366, 378–82. See
based methods, 386–412 also NAOMI Patients Association
residential schools, Canada, 143–4, (NPA)
149, 160, 177, 179–80, 342, 350 sanism: definition, 10, 40, 63; inter-
resilience, definition of, 445 sectionality of, 47, 49; in list of
resilience-based approaches to gay oppressive systems, 11, 34, 46, 49
men’s health research, 452–60; sanity-insanity as binary, 73
conceptual framework, 453f Savage, Dan, 467
resilience research, 443–74; conceptual schizophrenia, 343, 388, 392
framework, 445; and race, 463 Schön, U.K., 389, 405
resistance, 87, 99, 138, 154, 271, Second World War, 334
444; affirmation of, 455–7, 468; to Secwepemc peoples, 165–6, 171, 179
colonization, 89, 90, 96, 147, 160; self-policing. See self-surveillance
to diagnosis, 425; to dominant self-reflexive praxis. See reflexivity
biomedical framings, 286–91; expe- self-silencing. See self-surveillance
rience of, 147, 148, 152; to gender self-surveillance, 146, 202–6, 209, 263.
conformity, 256, 266, 267; and See also silenced
intersectionality, 337, 449; overview, Sen, Amartya, 67
14, 20, 21, 22, 103, 216–17, 219–20; Senate Standing Committee on
to psychiatry, 102, 255; reconfig- Aboriginal Peoples (2003), 166
ured by psychiatrization, 91, 92, serotonin reuptake inhibitors (SSRIs),
93, 95, 98, 100, 101, 118; speaking 204
out as essential to, 269; through settler colonialism, 4, 91, 145, 153,
arts, 402; by women with PMS, 200, 154, 449, 451. See also colonialism;
204, 210. See also intersectional- colonization; decolonization
ity approach to resilience research; settler colonies and communities,
Indigenous youth (urban) 93, 116, 144–5, 153. See also
responsibilization, 43, 50n8, 235–8 Indigenous themes
rest, 165 sexism: as form of oppression, 46, 49,
re-traumatization, 66, 434. See also 454; intersection with cisgenderism
trauma and sanism, 255; intersection with
Rheingold, H., 287 racism, 447; overview, 7, 11; shaped
Riverview Hospital (Coquitlam, BC), by psychiatry, 35; as structural
45 factor, 36, 40, 169, 181, 262; in
Rofes, Eric, 444, 456 the workplace, 244
Rose, Nikolas, 39, 50n7, 233–4, 236, sexuality, 37, 47, 68, 182, 183, 213,
240 262, 443–4, 456; overview, 3, 7, 13,
Royal Canadian Mounted Police 15, 21. See also gay men; intersex
(RCMP), 366, 456 and intersexuality; lesbians and
502 Index
lesbianism; LGBTIQ2S; queer utilitarian approaches to social

and queer theory; transgender; justice
two-spirit social justice dialogues and decoloni-
Shalhoub-Kevorkian, N., 91 zation, 138–64
Shepherd, Reginald, 447–8 social justice praxis, research refash-
Sherwin, Susan, 66 ioning for. See NAOMI Patients
Shildrick, M., 70 Association (NPA); research spaces;
Shiva, V., 138 resilience research; women with
Shorter, Edward, 218 experience of abuse, services and
silenced: because of difference, 70, systems
145–6, 154; by biomedical system, social policy, cuts to government
115, 131, 158, 421–4. See also funding, 43–5
self-surveillance Somalia, 119
Silenced Mind (KNCHR), 115, 131 South Africa, 119, 128
Small, Dan, 370 Spade, D., 11
Smith, Dorothy, 426 Spitzer, Robert, 266
Smith, Linda Tuhiwai, 152 Sterne, Jonathan, 290
Snap Out of It (1951), 343 stigma, 45, 130, 323–6, 422, 464;
social class. See class and classism accompanying a mental health
social constructionism: approaches diagnosis, 60, 62–3, 175, 287, 314–
to sex/gender, 264; feminist, 198. 15, 327, 391, 392, 398, 418, 425;
See also constructivism and con- from association with prisons, 118;
structivist epistemology creation of, from socio-structural
social determinants framework, 40, processes, 9; decrease of, 75, 118,
62–3, 167, 465 313, 315–16, 392; experienced by
social engineering. See madness in the gay men, 461, 463; institutional-
media ized, 11, 72, 113, 422–3, 429, 431;
social justice: definition, xii, 9; opera- layperson accused of creating,
tionalizing social justice in mental 318–19, 321–2, 326; overview, 3,
health, 75–80; theory, 60–86. See 15, 65; from pathologization of
also intersectional and Mad studies gender difference, 266–7, 271; of
frameworks PMS (as madness), 220. See also
social justice approaches. See capabil- discrimination
ities-informed approaches to social Still Sane (art exhibit) (Gilhooly,
justice; critical relational approach Blackbridge), 33–4
to social justice; decolonization; St Michael’s Residential School, 149,
feminist analysis; intersectionality; 150, 162n10
libertarian rights-based approaches storytelling through dance, 139
to social justice; material-discursive- storywork, 173–4
intrapsychic (MDI) approach; stranger danger, 335, 340–1, 346
Index 503
structural racism, 36, 40, 46, 67, 169, trans man: versus transman or cis-
174, 177, 179, 181, 414. See also man, 293–8, 308n13
race; racism; racialization transphobia, 260–1
structural violence, 75, 80n3, 155, 246 Transsexual Empire, The (Raymond),
Study to Assess Longer-Term 302
Opiate Medication Effectiveness transsexualism, 272n2
(SALOME), 378–82 transsexuality, gynecomastia, and
substance use, harm-reduction ap- mental health diagnoses in online
proaches, 64–5 communities, 285–311
suicide, 95–6 Transsexual Menace and GenderPAC
Summerfield, D., 96, 100 (Gender Public Advocacy
Sunseri, L., 180 Coalition), 266
surgery, for gynecomastia or for trauma, 151, 157, 416; from coloniza-
sex-reassignment, 286, 303, 304, tion, 141, 145, 148, 168–9; embodi-
309n18 ment of, 139; from gynecomastia,
survivors’ associations, 129–32 290; psychiatry, 424; psychological
Sylvia Rivera Law Project, 457–8 impact of, 120, 400, 405, 462–3;
Symptoms of Schizophrenia (1940), recovery from, 70, 143; responses
344 to, 159, 425–6, 432; as structural
Szasz, T., 261 factor, 453; term usage, 80. See
also re-traumatization; violence-
Tanzania, 123, 127 and trauma-informed framework/
Thachuk, A., 39 toolkit
Thinking the Internet (Sterne), 290 trauma-informed care, 168, 186n2
Thiong’o, N., 102 trauma-informed framework. See
Thomas, Barb, 433–4 violence- and trauma-informed
Thompson Rivers University, 166 framework/toolkit
Thomson, Garland, 318 Trute, B., 352
Thorne, S., 78 Tuck, E., 140, 153, 167, 173
Tiefer, L., 266 two-spirit, 182, 259, 273n6, 273n7.
Tk’emlúps, the city of Kamloops, 166 See also Indigenous themes;
T’lisalagi’lakw school, 162n10 LGBTIQ2S
Tracking the Perfect Legal Storm
(MHCC), 233 Uganda, 128
trans. See transgender Ulcer at Work (1957), 344, 351
transgender, 256, 271, 287, 272n4. U’mista Cultural Centre, 149, 162n11
See also gay men; intersex and unemployment: as barrier, 428–9;
intersexuality; lesbians and lesbian- decrease in insurance, 44; increase
ism; LGBTIQ2S; queer and queer in, 43–4. See also depression in
theory; two-spirit the workplace; employment
504 Index
urban-rural contexts, 176, 180 Winters, K., 257

Users and Survivors of Psychiatry “Wise Practices in Campus and
(USP), 131–2 Community Partnerships” (Clark,
utilitarian approaches to social justice, Hunt), 183–5, 186n3
64–5 Witchcraft Suppression Act, 119
Wodak, A., 64–5
Vancouver Area Network of Drug Woman Abuse Response Program
Users (VANDU), 369, 371 (WARP), 414
Varcoe, C., 77, 78, 413, 429 Women and Madness (Chesler), 36
victimization, 257–8, 260–2, 425, 429 women with experience of abuse,
violence against women, 413–42 services and systems, 413–42
violence- and trauma-informed frame- women with mental illness: arts-based
work/toolkit, 20, 416, 431–5. See methods, 395–400
also re-traumatization; trauma Woolf, Virginia, 207
visual arts, used in arts-based re- World Health Organization (WHO),
search, 393 89, 93–4, 101–2, 114, 370
Voices of the Street / Megaphone, World Network of Users and
382n1 Survivors of Psychiatry (WNUSP),
114, 129, 132n1
Wade, A., 455 World Professional Association for
Walia, H., 153 Transgender Health (WPATH),
Warrendale (1967), 345, 346 260, 289
Wa’ta (Christine Joseph), 144
Waziyatawin, 139 Yajima, Sayaka, 162n12
Wepa, Dianne, 172 Yalamarty, Harshita, 162n12
Where the Spirit Lives (Haldane and Yang, K.W., 140, 153
Jordan), 149 Yee, Jessica, 183
White settlers. See settler colonies and Young, I.M., 9, 68, 69–70, 71, 452
communities Younglai-Case, Maïmouna, 162n12
Wildeman, S., 66
Wilkinson, John, 118 Zambia, 131
Wilson, Michael, 229 Zimbabwe, 116

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CRITICAL INQUIRIES FOR SOCIAL JUSTICE

Edited by Marina Morrow and Lorraine Halinka Malcoe

An exceptional showcase of interdisciplinary research, Critical Inquiries

is professor and chair of the School of Health Policy

lorraine halinka malcoe is associate professor of social epidemiol-

EDITED BY MARINA MORROW

UNIVERSITY OF TORONTO PRESS

ISBN 978-1-4426-4920-0 (cloth) ISBN 978-1-4426-2662-1 (paper)

Printed on acid-free paper.

Library and Archives Canada Cataloguing in Publication

Includes bibliographical references and index.

1. Mental health services – Research. 2. Social justice – Research. I. Morrow,

University of Toronto Press acknowledges the financial assistance to its

University of Toronto Press acknowledges the financial support of the Government

Funded by the Financé par le

Introduction: Science, Social (In)Justice, and Mental Health 3

Part One: Foregrounding Social Justice Theorizing

1 “Women and Madness” Revisited: The Promise of Intersectional

2 A “Third Space” for Doing Social Justice Research 60

3 Global Psychiatrization and Psychic Colonization: The Coloniality

Part Two: Decolonizing Research and Practice

4 Mental Health in Africa: Human Rights Approaches

5 Dancing with Complexity: Decolonization and Social Justice

6 Melq’ilwiye (Coming Together): Re-imagining Mental Health

Part Three: Gendering, Discourse, and Power

7 Is It Normal or PMS? Women’s Strategies in Negotiating

8 Depression in Workplaces: Governmentality, Feminist Analysis,

9 Gender Non-conformity or Psychiatric Non-compliance?

Part Four: Media as a Site of Social (In)Justice

10 (De)Pathologization: Transsexuality, Gynecomastia, and the

11 “One in Five”: The Prevalence Problematic in Mental Illness

12 Madness in the Media: An Intersectional Analysis of Educational

Part Five: Refashioning Research for Social Justice Praxis

13 Ethics, Research, and Advocacy: The Experiences of the NAOMI

14 Using Arts-Based Methods to Create Research Spaces That Encourage

15 Disrupting Dominant Discourses: Rethinking Services and Systems

16 An Intersectionality Approach to Resilience Research:

significant contributions, especially to our discussions about policy and

emotional suffering, or mental difference to disrupt the power of psychiatry

This book is an important contribution to the field of mental health. The

Diamond, 2014; LeFrançois, Menzies, & Reaume, 2013) is its predomi-

About the Editors

As editors of this book who are committed to intersectional and self-­

Dominant Ideologies, Epistemologies,

claims further that it has developed effective methods of screening, diag-

Foucault, 1961/2006; Foucault, 1965/1988; Metzl, 2009; Shorter, 1998, 2008;

to treat diagnoses of schizophrenia), benzodiazepines (used to treat diagno-

Critical Theories for Social Justice in Mental Health

that construe social problems as the fault and responsibility of individuals.

Many feminist scholars and activists have embraced intersectionality

comprehensive multi-site, multi-instrument prospective study of the cogni-

Organization and Chapters

health praxis. In between, contributors delineate approaches for decolo-

Foregrounding Social Justice Theorizing

Part 1 presents the theoretical foundation of the book. Contributors pro-

Josewski emphasizes our ethical and political responsibilities for generat-

Decolonizing Research and Practice

of Africans. He thereby illustrates the ongoing legacy of colonialism, where

Gendering, Discourse, and Power

and responses to emotional distress and mental difference are governed in

Jemma Tosh (chapter 9) applies a critical feminist approach – which

Media as a Site of Social (In)Justice in Mental Health

dysphoria. Garner shows how experiential narratives generate important

As editors of this book who are committed to intersectional and self-