This exciting, timely and readable text brings together established and

emerging scholars to seek connections and, as importantly, reveal ten-

sions between media and disability studies. The centrality of the body as
a subject and object of analysis means that this book will be of interest
to readers from a myriad of disciplines across the human and social sci-
ences, arts and humanities.
(Professor Dan Goodley, iHuman, University of Sheffield)
Disability, Media, and
Representations

Bringing together scholars from around the world to research the inter-
section between media and disability, this edited collection aims to offer
an interdisciplinary exploration and critique of print, broadcast and on-
line representations of physical and mental impairments.
Drawing on a wide range of case studies addressing how people can
be ‘othered’ in contemporary media, the chapters focus on analyses of
hateful discourses about disability on Reddit, news coverage of disabil-
ity and education, media access of individuals with disabilities, the logic
of memes and brain tumour on Twitter, celebrity and Down Syndrome
on Instagram, disability in TV drama, the metaphor of disability for the
nation as well as an autoethnography of treatment of breast cancer. Pro-
viding a much-needed global perspective, Disability, Media, and Rep-
resentations examines the relationship between self-representation and
representations in either reinforcing or debunking myths around disabil-
ity, and ways in which academic discourse can be differently articulated
to study the relationship between media and disability.
This book will be of interest to students and researchers of disability
studies and media studies as well as activists and readers engaged in de-
bates on diversity, inclusivity and the media.

Jacob Johanssen is Senior Lecturer in Communications, St. Mary’s Uni-

versity (London, UK). His research interests include audience research,
social media, media and the body, psychoanalysis and the media, affect
theory, as well as digital culture.

Diana Garrisi is Lecturer in Media and Communication, Xi’an Jiaotong-

Liverpool University (Suzhou, China). Her research interests include
journalism, body image and the media, rhetorical theory, cultural his-
tory and science communication.
Routledge Research in Disability and Media Studies
Katie Ellis, Curtin University

Disability and Digital Television Cultures

Katie Ellis

Disability, Media, and Representations

Other Bodies
Edited by Jacob Johanssen and Diana Garrisi

For more information about this series, please visit: https://www.routledge.

com/Routledge-Research-in-Disability-and-Media-Studies/book-series/
RRDMS
Disability, Media, and
Representations
Other Bodies

Edited by
Jacob Johanssen and
Diana Garrisi
First published 2020
by Routledge
52 Vanderbilt Avenue, New York, NY 10017
and by Routledge
2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN
Routledge is an imprint of the Taylor & Francis Group, an
informa business
© 2020 selection and editorial matter, Jacob Johanssen and
Diana Garrisi; individual chapters, the contributors
The right of Jacob Johanssen and Diana Garrisi to be identified
as the authors of the editorial material, and of the authors for
their individual chapters, has been asserted in accordance with
sections 77 and 78 of the Copyright, Designs and Patents Act
1988.
All rights reserved. No part of this book may be reprinted
or reproduced or utilised in any form or by any electronic,
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including photocopying and recording, or in any information
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identification and explanation without intent to infringe.
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A catalog record has been requested for this book

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Contents

List of Tables ix
List of Contributors xi

1 Introduction 1
D I A N A G A R R I S I A N D J AC O B J O H A N S S E N

2 ‘The Stuff of Nightmares’: Representations of Disability

on the Online Bulletin Board Reddit 19
L E A H B U RC H

3 Madeline Stuart as Disability Advocate and Brand:

Exploring the Affective Economies of Social Media 35
M A R I A B E E C H R I S T E N S E N - S T RY N Ø A N D C A M I L L A
B RU U N E R I K S E N

4 Losing Someone Like Us: Memetic Logics and Coping

with Brain Tumours on Social Media 51
S A M I R A R AJ A B I

5 Inscribing Comedy in the Breast Cancer Narrative.

Disease, Autoethnography and Black Humour 75
R AC H E L V E L O DY

6 Knowing North Korea through Photographs of Abled/

Disabled Bodies in Western News 94
M ICKY LEE

7 Disabled Heroines: Representations of Female Disability

in Japanese Television Dramas 114
A N N E -LISE M I T HOU T
viii Contents
8 The Education of Children with Disabilities in South
African Online News Reports 135
E L I Z A B E T H WA LT O N A N D J U D I T H M c K E N Z I E

9 Mass Media Use by Individuals with Disabilities in

Germany Compared to the United Kingdom 156
I N G O B O S S E A N D A N N E G R E T H A AG E

Index 179
Tables

7.1 Typology of characters 119

8.1 Analysed articles from 31 January 2013 to 31 January 2018 141
9.1 Personal use of media at least once a week (data in %) 164
9.2 Media equipment of persons with disabilities depending
on living conditions (in %) 165
Contributors

Ingo Bosse (ingo.bosse@tu-dortmund.de) worked as research assistant

and professor at several German Universities. Currently he is leading
the Training Centre for Inclusion of the District Government. His
main fields of work are inclusive education, digital media for partic-
ipation and inclusion, the media use of people with disabilities and
e-inclusion.
Leah Burch (sslfb@leeds.ac.uk) is a PhD candidate in the School of
Sociology and Social Policy at the University of Leeds and a member
of the Centre for Culture and Disability Studies at Liverpool Hope
University. Her PhD research is focused upon the understanding and
experience of disabilist hate crime, particularly in relation to the
‘everyday lives’ of disabled people. This research project also hopes
to raise awareness of the strategies of resistance developed by dis-
abled people to manage these experiences, and consider different ap-
proaches to engaging public awareness with this topic. Her previous
research includes an analysis of online disablist hate speech within
the context of austerity, and a critical discourse analysis of special
educational needs policy. These works have been published in peer-
reviewed journals, including Disability & Society, and The Journal
of Education Policy.
Camilla Bruun Eriksen (cbe@sdu.dk) is an assistant professor in the
Department for the Study of Culture at the University of Southern
Denmark working within the fields of cultural studies, feminist
studies and critical disability studies. As part of the research project
Medicine Man (2019–2021) her research pays special attention to
masculinities, medicalization, ageing and popular culture, and she
has written on the intersections of fatness, embodiment, health,
gender and sexuality.
Maria Bee Christensen-Strynø (mariabee@ruc.dk) is a postdoctoral re-
searcher in the Department of Communication and Arts at Roskilde
University working within the fields of critical disability studies,
visual culture studies, media studies and dialogical/collaborative
xii Contributors
communication studies. Her research focuses on processes of (online
and visual) mediation and representation, with a particular interest
in the ways in which media shape ongoing becomings of disabled
embodiment.
Diana Garrisi (diana.garrisi@xjtlu.edu.cn) is lecturer in media and com-
munication at Xi’an Jiaotong-Liverpool University (Suzhou, China).
Her research interests include journalism, body image and the media,
rhetorical theory, cultural history and science communication.
Annegret Haage (annegret.haage@tu-dortmund.de) is a journalist; since
2013 she has been working as a research assistant at the Faculty of
Rehabilitation Sciences, Department of Motor Development in Reha-
bilitation and Education. Her main fields of work are the potentials
of digital media for participation and inclusion of people with dis-
abilities, the media use of people with disabilities and inclusive media
education.
Micky Lee (mickycheers@yahoo.com) is an associate professor of media
studies at Suffolk University, Boston. She has published in the areas
of feminist political economy; information, technologies, and finance.
Her latest books are Bubbles and Machines: Gender, Information,
and Financial Crises (University of Westminster Press) and Alphabet:
The Becoming of Google (Routledge).
Judith McKenzie (Judith.mckenzie@uct.ac.za) is an Associate Professor
in the Division of Disability Studies in the Department of Health and
Rehabilitation Sciences at the University of Cape Town. She is also
the principal investigator for the Teacher Empowerment for Disability
Inclusion (TEDI) project which develops and evaluates short courses
and massive open online courses (MOOCs) for inclusive teacher
education.
Anne-Lise Mithout (anne-lise.mithout@univ-paris-diderot.fr) is an as-
sociate professor in Japanese studies at Paris-Diderot University. Her
research focuses on the social treatment of disability and the lived
experiences of people with disabilities in Japanese society. She investi-
gates especially the fields of education, employment and the Disability
Right movement, with a focus on gendered experiences.
Jacob Johanssen (Jacob.Johanssen@stmarys.ac.uk) is a Senior Lecturer
in Communications, St. Mary’s University (London, UK). His re-
search interests include audience research, social media, media and
the body, psychoanalysis and the media, affect theory, as well as dig-
ital culture.
Samira Rajabi (Samira.Rajabi@colorado.edu), PhD, is the Director of
Technology Influenced Pedagogy and an Instructor at the University
 Contributors xiii
of Colorado. Prior to that, Rajabi was a postdoctoral fellow at the
Center for Advanced Research in Global Communication at the Uni-
versity of Pennsylvania’s Annenberg School of Communication in
Philadelphia, Pennsylvania. Rajabi’s research focuses on trauma and
digital media.
Rachel Velody (r.velody@virginmedia.com) was formerly a course leader
on the Fashion Media degree programme, London College of Fash-
ion. Her areas of expertise concern screen studies and fashioned iden-
tities. Awarded a 3-year doctoral stipend by the University of Bristol
in 2018, Rachel currently explores the fashioning of the female detec-
tive in contemporary British television crime drama.
Elizabeth Walton (Elizabeth.Walton@nottingham.ac.uk) is an Associate
Professor in the School of Education at the University of Nottingham,
UK. She is a member of the forum of the UNESCO chair in Teacher
Education for Diversity and Development and a visiting Associate
Professor at the Wits School of Education in Johannesburg, South
Africa.
1 Introduction
Diana Garrisi and Jacob Johanssen

‘What can a body do?’, French philosopher Gilles Deleuze asked by

quoting Baruch Spinoza, the original thinker who posed the question
back in the seventeenth century (Deleuze 1990; Spinoza 2000). How is
it made to do certain things, move in a direction, moved by other forces?
How is it shown as doing? How is it shown what it can and cannot do?
What spaces, virtual and material, is it allowed to occupy and in what
ways? How do bodies feel and articulate feelings and emotions about
themselves? How are they made to feel by others through digital means?
Above all, how are bodies ‘othered,’ made to be and feel as other? Those
questions and many more are at the heart of this edited volume. The
contributors seek to analyse how bodies are presented as strange, shame-
ful, wrong, impaired, wounded, scarred, disabled, lacking, different or
‘other’ in the media.
This chapter introduces the edited collection by highlighting key
themes, theoretical frameworks and methodological approaches per-
taining to the intersection between Disability and Media Studies. The
development of new media and the increased engagement with self-
representational practices have potentially multiplied the ways disability
can be mediated, creating the basis for new research questions.
This introduction provides an overview of the book’s themes and sum-
maries of the different chapters. It historically situates the book’s chap-
ters in relation to existing works exploring the question of how bodies
are made to be and feel as ‘other’ in contemporary media. It explores
how media inform ways to conceptualize the self and human relations. It
ends by arguing that research on those topics needs to broaden its frame-
works in order to move beyond an exclusive focus on the representational.
The edited book aims to offer an interdisciplinary exploration and
critique of media representations of physical and mental impairments.
The fast-changing global contemporary media landscape can provide
an ideal site to examine the media portrayal of diversity and evaluate
whether this is informing new ways to conceptualise the self and human
relations.
This volume approaches the study of bodies and the media through
the lenses of disability studies. Interdisciplinary in nature, disability
2 Diana Garrisi and Jacob Johanssen
studies draws on disciplines and theoretical frameworks such as phi-
losophy, sociology, history, queer theory, body studies, affect theories
and other approaches. In a sense, the field of disability studies came into
existence as a result of a rejection on the part of many scholars regard-
ing the mistreatment of disabled people in society. Many scholars who
wrote foundational texts of disability studies wanted to ‘shift the focus
from “what’s wrong with people with disabilities,” to “the social forces
that determine people with disabilities’ chances in life”’ (Bogdan and
Biklen 2013, 1).
Disability studies scholars are still working on moving away from the
perception of disabled people as subjects who suffer from medical condi-
tions. Instead, disabled people are recognized as human beings who are
situated within particular social and cultural structures, knowledge and
policies that enable but also disable their subjectivities. Emerging from
the disability rights movement which started in the United States in the
1960s, disability studies is both an academic field of inquiry and an area
of political activity seeking to give disabled people a voice.

When disability studies (from its inception to the present) challenges

the univocality of medical or rehabilitative models, what is at work
in such challenges is a counter-eugenic will to not eliminate but
rather revalue that which is freakish, deformed, twisted, crippled,
or in any way atypical
McRuer (2012, 357, cited in Goodley 2014, 14)

Many disability studies scholars have also shown how disabled individu-
als affectively experience the world differently than individuals who are
able-bodied. As David T. Mitchell, Susan Antebi and Sharon L. Snyder
put it: disability has ‘its own laws and potentialities of insight’ (2019, ix).
Disability studies is, as Benjamin Fraser (2016, 2) defines it:

a disciplinary formation whose sustained political force requires

constant methodological innovation and political commitment if
it is to respond to struggles that appear, morph and reappear in
specific places and at specific times – always with specific human
consequences.

It is the dynamic qualities of disability studies, as an evolving and

shifting field of enquiry, that this volume hopes to support. Disability
studies is not the disciplinary home of the editors of this volume, but has
particular significance to our background in media studies. Our own
interdisciplinary interest is reflected by the authors of the chapters in this
volume. Different backgrounds and approaches can contribute to debate
and conversations between disability studies, media studies and other
areas (Ellcessor and Kirkpatrick 2017). Media concepts and methods
 Introduction 3
provide disability researchers with tools to analyse texts, technologies
and cultures; disability theories emphasize the central meaning of dis-
ability and its broader social implications in media texts (Ellcessor and
Kirkpatrick 2017, 16–17). The different ways in which we think about
disability in real life as well as in the arts, media and entertainment can
bring benefit and understanding not only to media and disability schol-
ars but also to researchers working across the fields of education, social
services, science, health and medicine (Hadley and McDonald 2019, 1).
Media and disability studies, both characterized by political aspirations,
can work in a mutually constitutive relationship (Ellis and Goggin 2015;
Ellcessor and Kirkpatrick 2017). Taking a critical view on representa-
tions of bodies as a starting point, this volume seeks to discuss con-
temporary practices and discourses about bodies and their relationships
with the media. Scrutinizing global media representations of disability
may provide an opportunity for re-imagining and creating media that
challenge the status quo and advance towards more liberating politics
(Schatz and George 2018).
The chapters in this volume frame bodies in terms of representation
and representativeness from an intersectional perspective in order to
explore how people can be ‘othered’ in contemporary media. To that
end, the book includes chapters on hateful discourses about disability
on social media as a means of disposing of the anxieties of non-disabled
people in a time of financial instability; news coverage of disability in
South Africa; media access of individuals with disabilities in Germany;
an analysis of the memetic logics of brain tumour discussions on Twitter;
celebrity and Down syndrome on Instagram; the representation of dis-
ability in Japanese drama; North Korea and the metaphor of disability
for the nation and North Korean defectors; as well as an autoethnogra-
phy of treatment of breast cancer.
All authors critically discuss the relationship between self-representation
and representations in either reinforcing or debunking myths around dis-
ability and othering. They also go beyond issues of representation by con-
textualizing it within the cultural, political and commercial aspects that
media are situated in.
Disability studies as a field has a strong institutional base in the United
States and the United Kingdom. This is also reflected in many publica-
tions that often draw on examples from the English-speaking world.
As a number of scholars have argued, disability is often the direct or
indirect result of imperialism and colonialism (Ghai 2010; Puar 2017;
Nguyen 2018). The epistemic whiteness of disability studies has been
critiqued by a number of scholars (Snyder and Mitchell 2006; Barker
and Murray 2010; Ghai 2010; Meekosha 2011; McRuer 2018; Nguyen
2018). As Fraser notes, ‘Anglophone publications, in my estimation,
have shown far too little documented scholarly interest in disability in
non-Anglophone contexts’ (Fraser 2016, 2). This book seeks to make a
4 Diana Garrisi and Jacob Johanssen
contribution to the ongoing efforts to de-Westernize disability studies in
order to expand analyses and theoretical frameworks beyond the West.
Such perspectives argue not only to shift the analytical focus to
non-Western places, such as the global South, but also to draw on
non-Western concepts and scholarship when it comes to theorizing dis-
ability itself (Nguyen 2018). Such positions, like Anglophone disability
studies, place an emphasis on the context in which disability occurs. As
Xuan Thuy Nguyen (2018, 8) illustrates:

My experience is intersectional and contextual: my middle-class,

ethnic majority, (dis)able-bodied social location was redefined with
my immigration to Canada as a woman of color in academia, where
my experience with inclusion and exclusion in transnational social
and political spaces has reminded me to critically interrogate my
intellectual positioning within disability studies, recognizing that it
has largely emerged from the global North.

In that sense, disability is situated between and across geographical, cul-

tural and categorical contexts.
Building on the existent literature, following Jasbir K. Puar (2017) and
Dan Goodley (2014), we wish to broaden the analytic scope of disabil-
ity as a category. This book aims to offer an interdisciplinary explora-
tion and critique of global media representations of physical and mental
impairments including discussions of the representational, the symbolic
and discursive – but also going beyond such prisms and presenting and
questioning the ways in which academic discourse can be differently
articulated to research the intersection between disability and the media.

Media and Disability Studies: A Brief History

In the Anglo-American world, interdisciplinary methodologies within
the humanities and social sciences began to emerge in the 1990s. Colin
Barnes (1992) wrote one of the first studies on the stereotypical depic-
tions of disabled people in the media noting that the discrimination of
people with disability went hand in hand with heterosexism, racism and
sexism, to name a few. The same year Guy Cumberbatch and Negrine
Ralph (1992) presented the results of a comparative quantitative study
measuring the frequency within which people with disabilities appeared
on television in the United Kingdom and United States. The scrutiny
of stereotypes in the representation of disability continued with Per-
spectives of Disability in Broadcasting (BSC 1995) published by the
Broadcasting Standards Service in coincidence of the UK Disability Dis-
crimination Act 1995.
It was clear that addressing questions of disability representations in
the media could be turned into political action. This focus fosters the
 Introduction 5
debate of social participation and inclusivity on equal basis, and has the
potential to popularize the notion of tolerance between each other in
society. But it was, and still is, a long way to go, for misleading assump-
tions about people with disabilities are deep seated within our culture
and endlessly replicated through the media (Barnes 1992). For example,
Ann Pointon and Chris Davies (1997) pointed to a connection between
the use of repetitive narrative tropes in framing disability in film and
television and the lack of access to employment and training in the arts
for people with disabilities who, with their presence, could influence the
programmes’ content and make it more representative.
More recently, it has been noted that social media platforms may in-
crease employment and communication opportunities for people with
disabilities, yet parts of the platforms often remain inaccessible from a
technical point of view (Ellis and Kent 2011, 2017). This can be seen on
Twitter, for example, where long threads are sometimes copied over to
more accessible formats so that they can be accessed with a screen reader
application.
Facilitating access to information is fundamental in enabling citizens
to take part in civil society (Feintuck and Varney 2006). The liberating
potentials of digital media platforms that were often highlighted by
scholars in the early 2000s were not only too idealistic, but they were
also largely modelled on able-bodied individuals rather than on the
diversity of whole populations. Gerard Goggin and Cristopher Newell
(2003) explored technology as a site in which disability is constructed
and questioned in relation to whether the new values reflected in digi-
tal media were inclusive of people with disabilities. Goggin and Newell
framed the rights of people with disabilities within a global perspective,
an approach which would become, at both academic and institutional
level, a recurrent way to address disability-related issues. The Conven-
tion on the Rights of Persons with Disabilities, adopted in 2006, was
then seen as a major shift in the way disability had been dealt with at
international level; this international treaty was viewed as an instrument
to address major cultural changes in the world’s perception of people
with disabilities (Un.org 2006). In the process of negotiating the terms
of the treaty, people with disabilities from all around the world had gath-
ered together and for the first time ‘had a platform and a target for joint
advocacy’ (Bell 2014). As Katie Ellis and Mike Kent (2011, 2) pointed
out, technological advancement does not occur in an ideological vac-
uum: ‘the web 2.0 has been developed in and by the same social world
that routinely disables people with disability.’ The inaccessibility of the
offline world has been duplicated online, especially in social networking
sites (Ellis and Kent 2017). As such, values, desires and ideals of margin-
alized groups are underrepresented and under expressed, as biases priv-
ileging dominant cultural groups are embedded in the organization and
management of media (Alper 2017). More recently, Katie Ellis (2019),
6 Diana Garrisi and Jacob Johanssen
proceeding from a media and cultural studies approach, examined the
way people with disabilities access and watch digital TV. Taking Austra-
lia as a case study, Ellis’s book offers an opportunity for an exploration
of the ‘role of the state and legislation to advance critical disability anal-
ysis of television’ (ibid.)
Anna Hickey-Moody and Vicki Crowley (2012), by studying disability
through the lenses of affect theories, observe that media can be a form
of cultural pedagogy capable of provoking, confronting and redefining
knowledge and practice. According to the authors, affect, intended as
an expression of the embodied manifestation of learning, can chart
the micro-political relations preliminary to social change (ibid.). Eliza
Varney (2013) adopted a comparative approach to explore regulatory
frameworks for information and communication technologies in four
different contexts: Canada, European Union, the United Kingdom and
the United States. Her work takes an advocacy stance suggesting that
policy makers have to design measures capable of narrowing the divide
between people who can effectively have access to information and those
who cannot in times of fast technological developments (Dobransky and
Hargittai 2006; Varney 2013). The failure to addressing this gap would
result in consequence contrary to democratic principles (Feintuck 2003;
Varney 2013), and values of civic engagement and cultural inclusions
(Ellcessor 2016).

Othering Bodies
The practice of ‘othering’ is not restricted to disability. The idea of the
Other is central to various forms of prejudice and exclusion (Young-
Bruehl 1996; Garland-Thompson 1997). It also figures as a social mech-
anism in the construction of identities, groups and borders in society.
On a basic level, identity formation is dependent on how individuals
perceive themselves in relation to others and how difference and simi-
larity are used and experienced by people to construct identities. Iden-
tity formation and group belonging, and the self-other dynamics that
go with them, are thus not inherently negative or problematic. Human
beings make use of symbolic categories and discourses that operate
through self-other distinctions and thereby always mobilize exclusions
and boundaries (Giddens 1991). However, particular categories and
practices can be used to exclude, attack or annihilate others. As Simone
de Beauvoir (1974, xixi–x) wrote in The Second Sex:

Otherness is a fundamental category of human thought. Thus it is

that no group ever sets itself up as One without at once setting up
the Other against itself.

While having roots in a variety of discourses and theoretical frameworks,

the specific concept of ‘othering’ was first developed by the postcolonial
 Introduction 7
thinker and theorist Gayatri Chakravorty Spivak (1985). In her archival
analysis of the colonialist relations, Spivak argues that othering works
as a practice of subordination where the other is made aware of who
holds the power. Othering, as a form of prejudice, is linked to power
and functions as a mechanism through which certain groups or individ-
uals seek to cement their power at the expense of others. As the various
contributions to this volume re-confirm, othering can occur specifically
in relation to categories like class, gender, sexual orientation, ethnicity
and disability. Othering often occurs in a combination of those cate-
gories which are mobilized for ideological purposes. For instance, this
occurs when someone who is blind and from the lesbian, gay, bisexual,
transgender, queer, and intersex (LGBTQI) community is othered be-
cause of their sexual orientation and disability. While this volume puts
disabilities and bodily differences centre stage in relation to othering, it
is important to highlight that disability should not be seen in isolation
or as being part of a sort of hierarchy of categories. In that sense, other-
ing often marks the consequences of the processes of racism, sexism or
ableism. These processes are amplified through the media today.

Disability, Representation and the Media

Representation in the media is an enduring sphere of strenuous efforts
and meaning (Alexander et al. 2015). The advent of digital media has
underlined the importance of the visual and our curiosity in represen-
tations of the body to form opinions about ourselves and others. Media
portrayals of bodies can affect our lives because media are one of the
primary agents of socialization (Moore and Kosut 2010). Stereotypical
representations in the media can strengthen stigmatizing views of dis-
ability impacting on one’s perception of the self and one’s relation with
others in a society (Worrell 2018). A critical analysis of representations
of disability is therefore important as a means of change (Bolt 2014). The
bodies that we encounter in newspapers, on television and in our social
media feeds are often made to appear perfect in order to conform to ra-
cialized, ableist and heteronormative ideals of what it means to be beau-
tiful and normal in contemporary capitalist societies. Disability studies
scholar Dan Goodley (2014, 4) writes:

Our obsessions with our own bodies and biology, fuelled by insti-
tutional, expert, scientific discourse and the fascinations of popular
culture trains our thoughts on to our individual selves, our minds
and our bodies to check how we match up to a normative model of
humanity.

The digital media landscape is posing new challenges to the study

of body representation. The Internet and social media, in particular,
have led to an increased representation and engagement with the body
8 Diana Garrisi and Jacob Johanssen
through practices such as selfies, webcamming, blogging, vlogging and
other forms of engagement. While digital media may contribute to the
self-empowerment of excluded and silenced bodies, they may equally
open up spaces of discrimination, threats, hatred, trolling and silencing
online. It is perhaps not surprising that overall the portrayal of disabil-
ities in different media is still problematic. Paul Darke called it ‘clichéd,
stereotyped and archetypical’ (2003, 100). While mainstream represen-
tations of bodies in popular culture do not stop ‘people with disabilities’
from gaining ‘pleasure from popular culture’ (Ellis 2015, 6), more needs
to be done to represent their full lived experiences instead of being an-
chored in positive or negative stereotypes (Ellis 2015).
In their focus upon literary representation, David Mitchell and Sha-
ron Snyder (2000) argue that disability can become an essential part
of narratives. It is a ‘narrative prosthesis,’ an essential component in
order to drive the plot in a film forward, for example. They have argued
that ‘disability pervades literary narrative, first, as a stock feature of
characterization and, second, as an opportunistic metaphorical device’
(Mitchell and Snyder 2000, 222). This does not mean, however, that
such usages of disability as a stylistic device should always be regarded
as negative. On the contrary, disability can serve to disrupt established
ideals of normalcy and beauty for example. However, this happens all
too rarely (Ellis 2015). Some forms of representations align with the idea
of the ‘supercrip’ which, even though positive, portray people with dis-
abilities as superhuman who everyone should be inspired by (Clogston
1990; Zhang and Haller 2013).
Many chapters in this volume implicitly discuss the relationship be-
tween ableism and disability. When non-disabled individuals talk about
disabilities, such discourses (and ways of representation) are often ableist,
because they imagine what it might be like to be disabled (Titchkosky
2016). Representation is essentially an epistemological notion; it is al-
ways derivative from a priori knowledge and by its own nature is liable
to refinement and falsification; it shows ‘how’ rather than ‘what’ we
know (Daston 2014). As such, Jeffrey Preston (2016) argued that media
representations of disability are not about disabled people but about the
fears and anxieties of disablement, as imagined by non-disabled peo-
ple. Preston says: ‘They do not present us with the lived experience of
disability but rather are the story of the normate, an anxious subject
revolted by their own vulnerability to the point that they hide from it’
(2016, 142). This imagination has been exacerbated within the current
climate of financial instability.
Now widely documented, the 2008 global financial crisis and sub-
sequent benefit cuts to welfare policies have had a substantial impact
upon disabled people in the West (Goodley and Runswick-Cole 2015).
Austerity – government measures to reduce spending and deficit – has
been characterized as a focus on efficiency and pragmatism in order to
 Introduction 9
overcome the economic climate after the 2008 financial crisis. These
developments are significant in two ways: they targeted people on so-
cial benefits in particular (disabled people among them), and they are
implicitly and explicitly echoed in neoliberal media discourses about
self-responsibility, self-care and empowerment of individuals (Jensen
2013). In addition, Clare Barker and Stuart Murray, co-editors of The
Cambridge Companion to Literature and Disability (2017), note the
importance of reflecting on representation and disability in the media, in
fiction, television, film, political discourse and public policy: ‘In a time
when the logic of austerity demands endless efficiency, and with Brexit
threatening to reshape everything from local economies to human rights
legislation’ (The Guardian 13 January 2018, 13).
Elizabeth Ellcessor and Bill Kirkpatrick (2017) have argued that me-
dia studies and disability studies should be combined and move beyond
textual or content analyses of representations of disability by taking as-
pects of production and consumption as well as ideologies and catego-
ries related to disability into account (such as gender, sexuality, class or
ethnicity). Such a focus should include e.g. how disabled people use and
produce media and how media industries, as well as content and tech-
nologies, can be inherently disabling (Ellcessor and Kirkpatrick 2017;
see also Ellis and Goggin 2015; Ellcessor 2016). This volume similarly
follows a broadening of disability beyond the textual or audio-visual, by
focusing on disability in relation to practices, categories, geographical
contexts and bodily abilities as well as representations.

Broadening the Concepts of Disability

and Representation
While this volume uses issues around ‘representation’ as a starting point,
the representational is also questioned and problematized by the authors.
While representation may be a longstanding topic within media and dis-
ability studies, this volume aims to go beyond the symbolic or cultural
interpretations of particular representational practices. Disability has
often been tackled from binary dimensions such as medical model/social
model; old media/new media; theory/practice; ability/disability. A num-
ber of scholars have started to break down such binaries (McRuer 2006;
Campbell 2009; Goodley 2014). Such perspectives have been ushered in
particularly by new materialism(s) and object oriented ontology. New
materialism(s) and object oriented ontology have been instrumental in
reconfiguring and redefining the relationship between, broadly speak-
ing, subjects and objects. As part of a wider ‘nonhuman turn’ (Grusin
2015), questions of the agentic ability of things, objects and matter are
foregrounded by thinkers such as Jane Bennett, Rosi Braidotti, Bruno
Latour, Karen Barad and many others. The rational, reflexive human
subject as an individual who has taken precedence above other forms
10 Diana Garrisi and Jacob Johanssen
in scholarship is critiqued and decentred by such thinkers. This is done
in order to open up perspectives which specifically include disciplines
beyond the humanities and social sciences such as biology, neuroscience
and other branches of knowledge. Lisa Blackman (2019) notes that such
a shift ‘relates to the identification of common ontologies emerging across
the sciences and humanities, which emphasize the complex, processual,
indeterminate, contingent, non-linear, relational nature of phenomena
constantly open to effects from contiguous processes.’ (Blackman 2019,
xviii). Such perspectives have also been recently taken up in disability
studies (Goodley 2014; Puar 2017; Mitchell, Antebi and Snyder 2019).
In her book The Right to Maim (2017), Jasbir K. Puar broadens dis-
ability to encompass more than the traditional sense of the term. Cou-
pling ‘disability’ with debility and capacities for undoing and unmaking
bodies, Puar focuses on the biopolitics of making and unmaking bodies
through forms of capacitation. Across the world, bodies are subject to
violent biopolitical forces and marked along racial, sexual, religious and
physical/psychological abilities. Biopolitics, for her, designates a ‘capac-
itation machine’ (xviii) that refers to processes of situating bodies in a
transitory state between being and becoming. Violent mechanisms, such
as war, torture and oppression, are thus specifically designed to debili-
tate bodies, rather than straight forwardly disabling them.
Puar is adamant that the concept of disability needs to be brought out
of the white (and often male) conceptual home of disability studies in
order to be opened up to intersectional analyses. For Puar, bodies that
are not disabled in the traditional sense, such as black bodies subject
to police brutality in the United States, need to be included in thoughts
about and analyses of othered bodies. Such bodies are all, perhaps to
varying degrees, ‘sustained in a perpetual state of debilitation’ (ibid.,
xiv). In focusing on debility, a processual prism is sharpened that renders
disability fundamental to, but also not enough in, contributing to the un-
derstanding of violence today. ‘Disability is not a fixed state or attribute
but exists in relation to assemblages of capacity and debility, modulated
across historical time, geopolitical space, institutional mandates, and
discursive regimes’ (ibid., xiv). Treating disability as a dynamic, Puar’s
goal is to think through how disability works as a biopolitical mecha-
nism through which individuals and entire populations are at greater
risk of becoming disabled than others. Disability marks bodies, or parts
of bodies, which are either at risk of becoming (marginalized bodies of
ethnic minorities for example) or always already marked by being of less
or no potential. ‘[S]ome are living the disability that does not get codi-
fied or recognized as such, not only as a true site of insufficiency but as
a mark or remainder or reminder of that which is already constituted as
insufficient’ (ibid., 12), as Puar notes. For her, drawing on Foucault, the
body is ‘an ability-machine’ (ibid., 14) subsumed under regimes of capi-
tal. Such formulations open up disability towards affect studies – which
 Introduction 11
has been adopted by scholars in disability studies (Hickey-Moody and
Crowley 2010; Goodley, Liddiard and Runswick-Cole 2018; Redding-
ton 2019) – a field where bodies are seen as sites of becoming and poten-
tial, ruptured along non-human entities. The question for Puar, which is
also of central relevance for this edited volume, is subsequently not what
disability is, but what it does. What it does to bodies, as well as what
bodies do to themselves and others. This emphasis and shifting from
disability as a fixed term towards ability, potential, capacity, as well as
rupture, undoing and debility opens up new alliances and assemblages
in order to consider how bodies are subjected to physical and symbolic
violence today. This does not mean that more positive and emancipatory
perspectives on disability are closed off by such a position (Barnes 2016).
Disabilities studies scholar Dan Goodley has also put forward a con-
ceptualization of disability which specifically takes account of abilities
rather than focusing on disability. What he terms ‘dis/ability’ (Goodley
2014) represents an effort to argue for the mutuality and constitutiveness
of disability and ability. Goodley notes that in recent years, disability
studies has moved towards critical disability studies by embracing
frameworks and ideas from other disciplines. There has also been a
move towards ableist studies (Campbell 2009, 2012; Wolbring 2007,
2012) where scholars analyse how ableist practices and discourses are
perpetrated by individuals who are able-bodied. ‘Ableism is the system
from which forms of disablism, hetero/sexism and racism emanate and
has in mind a “species-typical” human being’ (2014, 22), as Goodley
notes. As a particular form of othering, ableism constructs a hierarchy of
bodies based on arbitrary (albeit ideologically rationalized) characteris-
tics that favour certain bodies over others. Ableism creates a dichotomy
of ‘normal – other’ within which we all become entangled and caught
up within.
As Goodley suggests, ‘Everyone across the dis/ability divide is caught
up in the processes and fantasies of ableism. We – the non/disabled, wo/
man, black/white, gay/straight, poor/rich – are all knotted up in the pro-
cess of ableism’ (ibid., 26, italics in original). Goodley argues that the
notion of dis/ability must be intersectional and incorporate material-
ist, psychoanalytic, poststructural and postconventionalist perspectives
(ibid., 52–66). Such a notion draws on humanities scholarship from a
variety of disciplines in grasping how abilities and disabilities are con-
nected and mutually related (see also Goodley et al. 2019 for a recently
repeated appeal for disability studies to open itself up). ‘Disability asks
of ability: Is that all you’ve got? Are you really that superficial in what
you consider to be worthy of merit?’ (ibid., 156). In that sense, dis/abil-
ity needs to account for, or perhaps acknowledge, how bodies are mis/
represented in general today and this particularly applies to the media.
This edited volume is sympathetic towards such perspectives by dis-
cussing disability in its broadest sense. Rather than arguing for post- or
12 Diana Garrisi and Jacob Johanssen
non-representational approaches to disability and the media, the repre-
sentational and its non-representational surroundings should both be
considered when it comes to disability, othering and the media.

Chapter Summaries
The volume opens with the chapter ‘The Stuff of Nightmares’: Represen-
tations of Disability on the Online Bulletin Board Reddit by Leah Burch
who explains how collective anxieties of non-disabled people, projected
onto disabled people, create and perpetuate harmful representations on-
line. The chapter focuses on the extent to which the American social
media platform Reddit spreads and reinforces discriminatory attitudes
towards disability. Euthanasia and eugenics are justified by users on
Reddit in light of economic crises and austerity that have led to welfare
cuts. Disabled people are framed as being a burden on the welfare state
and set up against neoliberal ideas of self-sufficiency and economic pro-
ductivity. Discourses of exclusion portraying people with disabilities as
an economic burden misleadingly emphasize disability as an unworthy
and unwanted state of being. Burch sheds light on the extent to which
the category of the human is often defined according to criteria of eco-
nomic productivity in the context of public online forums.
Maria Bee Christensen-Strynø and Camilla Bruun Eriksen continue
the discussion regarding online communication and disability by ex-
ploring the convergence between commodification and campaigning on
social media. The chapter Madeline Stuart as Disability Advocate and
Brand: Exploring the Affective Economies of Social Media explains
how American disability advocate Madeline Stuart reframed her Down
syndrome within a story of weight loss, sport and fitness. The focus
on fitness pushes Down syndrome to the margins and enables Stuart
to present herself as someone who can take control of her body by los-
ing weight. The two authors of the chapter, drawing on Sara Ahmed’s
notion of affective economies (Ahmed 2004, 2010), argue that Stuart’s
case of online self-commodification exemplifies ways in which a disabil-
ity identity can be transformed into a valuable personal brand and asset,
by aligning it with mainstream narratives of ideal body images, such as
slimness. In this way, disability acquires emotional currency which is
filled with meaning and (surplus) value through affective circulation on
social media. Such forms of representation nonetheless enable agency
and power which challenge traditional ableist narratives, as they have
been researched by Burch in this volume, for example.
Re-definition of identity through interactive spaces is also the focus of
Samira Rajabi’s chapter Losing Someone Like Us: Memetic Logics and
Coping with Brain Tumours on Social Media. In this chapter, Rajabi con-
siders discussions in social media communities on Twitter about brain
tumour and the right to die. Taking as a case study the story of Brittany
 Introduction 13
Maynard, an American woman with terminal brain cancer who decided
to end her life, Rajabi explains the way the memetic logics of the Internet,
based on virality, offer opportunities to simultaneously create, destroy
and re-create meanings surrounding suffering. Bringing together work on
trauma and disability studies with scholarship on digital technologies,
Rajabi reads Twitter as a digital channel for micro-political gestures ca-
pable of underlying the fragile nature of our assumptions about what it
means to live and to die with brain tumour and challenge the idea that
‘anything aside from a cure constitutes a personal failure.’ She broadens
the notion of the meme, which is more commonly associated with jokes,
light-heartedness, or ridicule, by arguing that it constitutes a sense of play-
fulness through which individuals can share lived experiences and subvert
discourses of othering such as disability, sickness and victimization.
With her autobiographical account of breast cancer Inscribing Com-
edy in the Breast Cancer Narrative. Disease, Autoethnography and
Black Humour, Rachel Velody challenges academic literary conventions
and questions the validity of the signifier of ‘objectivity’ to mediate the
notion of disability. Using comedic autoethnography, Velody takes us
through a journey of discovery of not only what it means but also what
it feels to live with breast cancer. Through a range of lexical, syntactic
and semantic possibilities Velody shows the fallacies surrounding cancer
and debunks the myth of disability as an out of ordinary experience.
In putting her experiences into words, Velody aims to affect the reader
in visceral terms. Ultimately, her chapter leaves us with the question of
whether both media and academia are drawing on the full range of ex-
pressive possibilities to write or visually represent disability.
The next two chapters place their geographical focus on Asia. Micky
Lee’s Knowing North Korea through Photographs of Abled/Disabled
Bodies in Western News evokes disability in order to analyse the vi-
sual and textual presentation of North Korean defectors and male and
female soldiers. Lee examines how images of the body serve as sites
where different meanings are laid out and contested. Images of North
Korean bodies may provide a platform used by the government to rein-
force its ideology and by the Western press to contradict it and provide
documentary evidence for its failure. The body, particularly when it is
wounded, malnourished or otherwise ‘different,’ becomes emblematic of
the country’s wellbeing and political economic relations. In official rep-
resentations, for example military parades, the body comes to figure as
embodying the regime as powerful and healthy, whereas disabled bodies
are stigmatized and seen as weak. The bodies, then, come to stand in for
the nation that is seen as both disabling of its citizens and disabled be-
cause of its political economic system. In Lee’s chapter disability serves
an epistemological function as it becomes the lens through which to gain
knowledge about a country whose sources of information are heavily
monitored by a system of censorship.
14 Diana Garrisi and Jacob Johanssen
Anne-Lise Mithout’s chapter Disabled Heroines: Representations
of Female Disability in Japanese Television Dramas explores ideas of
inclusion and social participation in four contemporary Japanese dra-
mas focusing on the representation of female characters with disability.
The author shows that contemporary fictional TV portrayals increas-
ingly depict women with disabilities as involved in sexual and romantic
relationships breaking taboos surrounding disabled people’s sexuality
and reproduction. While such forms of representation may challenge
traditional taboos around disability in Japan, they are nonetheless am-
bivalent, as Mithout argues. For instance, some of the narratives still
emphasize a disabled community that is segregated from the rest of soci-
ety (e.g. through special schools or workshops), rather than advocating
a fully inclusive society. The female protagonists are also portrayed by
well-known actresses, who are shown as young and cute rather than or-
dinary in order to attract audiences. Mithout argues that in these shows
disability is used as a symbol of the female condition in Japan, the social
obstacles faced by women in general and the rules that the society still
imposes upon them.
With the chapter The Education of Children with Disabilities in
South African Online News Reports by Elizabeth Walton and Judith
McKenzie, we move on to journalism in South Africa and its role in ad-
dressing the provision of education for children with disabilities. While
the news reports pick up on the government’s failure in providing in-
clusive education for children with disabilities, they also reinforce ex-
isting stereotypes about disabilities. The chapter lingers on some of the
common paradoxes of journalistic exposé: the press gives publicity to
the failures of the government but, at the same time, through represen-
tative tropes, reinforces stereotypes that are often at the basis of the
systemic neglect of people with disabilities. Walton and McKenzie argue
that the articles present a simplistic, medicalized approach that portrays
the children in terms of individual tragedy. Through discourse analysis,
it is shown that such portrayals evoke shock and pity in audiences by
portraying children as deficient and helpless. The two authors find in the
ahistoricity of the news articles a significant cause for misinformation,
as the news portrayals fail to take into account the country’s apartheid
past and its legacy on contemporary government decisions regarding ed-
ucation for people with disabilities.
Ingo Bosse and Annegret Haage carry on the discussion about media,
disability and human rights by exploring questions of access to media.
In Mass Media Use by Individuals with Disabilities in Germany Com-
pared to the United Kingdom, the two authors conduct a comparative
analysis between their originally produced research in Germany with
Ofcom’s report on individuals with disabilities’ access to media in the
United Kingdom (Ofcom 2015). While there may be specific regulations
and goals in both countries with regard to enabling access to different
media, satisfactory levels of access are unachieved. Bosse and Haage’s
 Introduction 15
mixed methods study features expert interviews, quantitative surveys
and qualitative focus group discussions. Individuals with visual, hear-
ing, mobility and learning impairments were recruited for the research
project. In conjunction with the British study, the authors show that
barriers in media access are still significant and this is in stark contrast
with the wealth of possibilities that today technologies could potentially
offer to facilitate inclusivity.

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2 ‘The Stuff of Nightmares’
Representations of Disability
on the Online Bulletin Board
Reddit
Leah Burch

Introduction
Attitudes towards disability are shaped by long-standing normative
assumptions about the human body and mind and the problematiza-
tion of those who deviate from them. During the eighteenth century,
the privilege of pathological anatomy constituted the ‘suzerainty of the
gaze’ (Foucault 1989, p. 2) during which the professional gaze came to
‘exercise its right of origin over truth’ (Foucault 1989, 2) about the body.
Thus, disability moved from the ‘philosopher’s cabinets of curiosities’
to ‘the medical man’s dissection table’ (Garland-Thompson 1997, 57).
Moving into the nineteenth-century era of Freak Shows, the bodies of
disabled people were presented to the paying public to demonstrate the
extremities of the human body (Garland-Thompson 1997). Such prac-
tices sought to confirm to the ‘normative’ figure, what they were not.
Simultaneously, the development of Adolphe Quetelet’s l’homme moyen
and Francis Galton’s ‘normal distribution’ curve in the nineteenth cen-
tury contributed to a worldwide eugenic movement aiming to genetically
enhance the human race (Davis 2013; Hubbard 2013). This movement
adopted a ‘curative mode that privileged the full repair of defective
organs or cells, and stigmatized patients who were unable to return to
economically rational social roles’ (Borsay 2005, 1). Subject to increasing
medicalization, disabled people were conceptualized as bodies in need of
treatment (Sullivan 1991).
Medicalized narratives continue to dominate current stories of dis-
ability, and have justified the routine exclusion, abuse and murder of
disabled people (Quarmby 2011). Deficit-focused language continues to
position disabled people outside of the boundaries of the human (Ralph
et al. 2016). Constructed and mediated in the media domain, cultural
representations reinforce stereotypes and assumptions about disability
within the social domain. These representations serve to medicalize,
patronize, criminalize and dehumanize disabled people, thus demon-
strating the role of media in reproducing certain stereotypes surrounding
disability (Barnes 1992). Such stereotypes sustain traditional assump-
tions of disabled people as unfortunate, tragic and costly (Emens 2013)
20 Leah Burch
and ultimately define individual perceptions of disability that are drawn
upon when encountering, and categorizing, new information (Cameron
2014).
The projection of personal and social anxieties onto disabled people is
not a recent practice, but one rooted in the very fabric of social encoun-
ters. Disability, perceived by non-disabled people as ‘the sight of dam-
age’ or ‘something gone wrong,’ has traditionally evoked fear, avoidance
and hostility (Sinason 1992). In this sense, discrimination is not only a
question of individual prejudice, but is rooted in society (Barnes 1992).
It is, therefore, important to expose the platforms and technologies that
disseminate these attitudes and continue to influence wider social atti-
tudes towards disability.
Recent work (Garthwaite 2011; Briant et al. 2013; Burch 2018) has
sought to explore media representations of disability within the context
of welfare. Such work demonstrates how long-standing tropes of disabil-
ity as pitiable, a burden, and incapable, are being reproduced within the
rhetoric of financial instability and dependency. Indeed, online media
representations of disability reflect the current socio-economic climate
which has been accompanied by a plethora of politically charged,
anti-welfare discourses presented as ‘common-sense’ (Jensen & Tyler
2015). The dissemination of such narratives in social media is suggested
to be one means of many ‘fundamental agents in the development and
normalisation of disablist discourses, and to the creation of an inher-
ently negative meta-narrative that renders disability as an unnecessary
and burdensome cost’ (Burch 2018, 406). To this point, discriminating
and disablist comments presented in media outlets are representative of
personal anxieties and threats, charged by their wider social and polit-
ical context.
The growth of the World Wide Web has revolutionized the way in
which we communicate across the globe. The offer of immediate,
global and anonymous interaction has transformed how we gather and
distribute information on an international scale (Buchstein 1997; Rhe-
ingold 2000; Yates 2001; Natilene Bowker & Tuffin 2002; Banks 2010;
Fenton 2012). Researching forms of online communication provide an
insight to the dissemination of traditional assumptions and norms in on-
line media platforms. Such research grapples with questions surrounding
the right to free speech, against the risk of harm for those who become
the subjects of oppressive expressions. This chapter offers a snapshot of
such processes, exploring and theorizing the ways in which the online
bulletin board, Reddit, has enabled disabling conversations to emerge.
The first part of this chapter outlines the literary backdrop of the
research by drawing upon the concepts of disablism and ableism.
I outline David Hevey’s (1991) ‘dustbins for disavowal’ as a theoretical
framework for exploring how representations of disabled people generate
metanarratives of disability (Bolt 2014) that are constructed for and by
 ‘The Stuff of Nightmares’ 21
non-disabled people. Next, I consider the relationship between disability
and media, including the risks and possibilities this presents. Following
this, I discuss research findings and, in particular, pay attention to the
ways in which assumptions concerning quality of life and financial in-
stability have been detrimental to the emergence of conversations sur-
rounding euthanasia, prenatal testing, abortion and sterilization.

Theoretical Framework: Disablism, Ableism and

‘dustbins for disavowal’
Disabling attitudes and stereotypes contribute to the construction of dis-
ability as an individual problem (Beckett & Buckner 2012). Disability,
from this understanding, is not defined in terms of individual deficit
but as ‘a social problem caused by social processes’ (Priestley 2003, 13).
Fundamentally, the constitution of disability as a social construct, rather
than individual problem, focuses on wider influences and relationships
that exist in the social, cultural and political spheres. To quote Davis
(2013, 1), ‘the problem is not the person with disabilities; the problem
is the way that normalcy is constructed to create the “problem” of the
disabled person.’ Disability, then, is a construct that has been sculpted
by disabling values and practices throughout history.
Disablism, from this perspective, describes the processes, systems
and structures that are disablist, and contributes to the production of
‘disability.’ These processes problematize deviance from socially ac-
cepted standards (Bolt 2015) and are operationalized through the use
of discriminatory, oppressive and/or abusive behaviours. Although not
a concept you will find in the dictionary (Miller et al. 2004), disablism
is present in a myriad of forms and expressions, and is a mundane in-
trusion to the lives of many disabled people (Madriaga 2007). Levin
(2013), for example, explains how a culture of ‘banter’ has normalized
disablist attitudes to the extent that disablist hate is often unacknowl-
edged and unchallenged (Burch 2018). Similarly, Bolt (2016) contends
that disablism is a common feature of humour, to which disablist lan-
guage is employed in casual and indirect ways, as a means of marking
particular characters out as deviant. In these works, disablism reaffirms
a binary opposition to which disability is constructed as the inferior
Other. Whether attitudinal or structural, disablism creates the problems
of disability by imposing barriers on people with impairments, simulta-
neously driving up the processes of ableism.
Disabling attitudes are a prevailing feature of our culture, and con-
tinue to position disability on the peripheries of society. Such position-
ing relies not simply on the problematization of difference, but on the
ableist processes and assumptions that bolster the superiority of the
so-called ‘normal’ figure. The concept of ableism describes ‘a system
of dividing practices’ that seeks to differentiate and rank individuals
22 Leah Burch
(Campbell 2017, 287). It refers to the systems and tools of measure-
ment that have been established as means of marking out and enforc-
ing distance between those considered to be ‘normal’ and ‘abnormal.’
This pervasive marking of minds and bodies provides an infrastructure
for the constitution of what Campbell (2008, 2009, 2012) terms ‘ableist
relations.’ Co-relationally and constitutively produced, ableist relations
rely upon the fallacies of normalcy to sketch ontological boundaries of
the human (Campbell 2009).
Ableist relations reinforce the supremacy of ‘ableness’ against the
flawed existence of the ‘Other’ figure (Hughes 2007). In the current
socio-economic climate, ableism has provided ‘an ecosystem for the
nourishment of ableism’ (Goodley et al. 2014, 981), aligning perceptions
of humanness with the ability to flourish under strict work conditions.
Often unconscious, the internalization of ableism aims to protect oneself
from the anxieties and fears of the modern world, and drive up one’s
sense of superiority as a ‘hard-working taxpayer’ (Hughes 2015). As ex-
plained by Bolt (2015), ableism is so pervasive and taken for granted
that people aspire to the ideal subject position of the ‘hard-working
taxpayer,’ gradually and unconsciously. Disablism reinforces this process
and results in a plethora of disablist practices underpinning our social
make-up. Disability, caught within these relational processes, becomes a
scapegoat for the anxieties, insecurities and instabilities that arise in the
pursuit to adhere to corporeal standards of ableism within the context
of financial instability. These anxieties, as it will be discussed, revolve
around notions of dependency, death and vulnerability.
Disablism arises through a ‘negative and aversive reaction to the pres-
ence of disability’ and represents ‘fear for the precariousness of one’s
own being and the vulnerabilities of our ephemeral flesh’ (Hughes 2012,
69). Within this process, disability is socially constructed in terms of
the characteristics and fears that transgress ableist standards. In doing
so, such bodies become spectacles of otherness, while those unmarked
remain sheltered under the pretence of normalcy (Garland-Thompson
1997). Disabled people are used as containers for the unwanted, pro-
jected feelings of the dominant groups (Watermeyer & Swartz 2016).
In the words of Hevey (1991), disabled people become ‘dustbins for dis-
avowal,’ occupants of the difficult aspects of human existence, and the
vulnerabilities that we naturally possess (Shakespeare 1997). Disability
comes to be as an ‘other’ in the making of the self within a particular
social context. That is, identities are crafted within specific social insti-
tutions and cultural formations, creating both the ‘self’ and the ‘other’
(Richards 1989). In this sense, narratives that reduce disability to such
vulnerabilities reveal much more about the social and personal anxiet-
ies of the narrator than disabled people (McRuer 2006). Disablism, in
other words, validates one’s own fascination with, and internalization
of, ableism, gaining prevalence during periods of financial instability.
 ‘The Stuff of Nightmares’ 23
Disability and the Media
The World Wide Web has and continues to revolutionize and transform
the social world. Indeed, the internet has created new potential for com-
munication (Yates 2001) and is considered to be a powerful and dynamic
amplifier of messages, values and ideas (Daniels 2008). As a tool, the
internet can be manipulated to serve a myriad of purposes, reaching a
diverse and ever-changing audience.
For some writers, online platforms allow users to exist outside the con-
ventions of the offline world (Bowker & Tuffin 2007). Online communi-
cation can therefore be liberating, allowing users to temporarily detach
from their offline identity. In this way, the internet presents the opportu-
nity for users to build their own identity, rather than the one constructed
by the offline world (Bowker & Tuffin 2002; Huffaker & Calvert 2005).
Indeed, it has allowed vibrant disability communities to emerge, es-
tablishing support networks (Williamson et al. 2001; Guo et al. 2005;
Stamou et al. 2016) and opportunities for resistance and support. Recent
examples of this include the use of Twitter hashtags, #justaboutcoping
and #worldwithoutdowns, which aimed to turn ‘so-called truths inside
out, and reveal their fabricated existence within an ableist imagination’
(Burch 2017, 1088). Additionally, an ongoing project funded by the Eco-
nomic and Social Research Council (ESRC) ‘Living life to the fullest’ has
used the flexibility and accessibility of online communication and social
media as a means of collaboratively planning and conducting a research
project with little face-to-face communication (Living Life to the Full-
est 2018). In these cases, the internet offered flexibility and community,
with affirmative consequences.
The same facilities, however, of immediacy, anonymity and global
reach allow for the dissemination of harmful messages. The transfor-
mation of communication has made the internet an ideal tool for the
widespread expression of hate (Banks 2010). That is, the dissemination
of hateful and/or oppressive attitudes is able to re-emerge in new ways
on the internet (Cornwell & Orbe 1999), reaching audiences far beyond
the parameters of the physical world (Duffy 2003; Slagle 2009). Online
communication allows disablist attitudes to be shared and reinforced
by providing a site for the disposal of the anxieties and fears of ableism
through narrative representations of disability. Such representation
relies upon cultural assumptions to fill in the missing details (Garland-
Thompson 1997) often reflecting much broader stereotypes of disability,
which have been constructed and reconstructed through the narratives
of powerful members of society (Cameron 2014). These narratives, it is
contended, endorse the hegemony of ableism, and represent a culturally
created metanarrative of disability as the ‘Other.’ A metanarrative is
thus formed, predicated upon the characteristics and traits that cultural
representations denote (Bolt 2014).
24 Leah Burch
This Research
This chapter draws upon findings from a small-scale research project
that aimed to explore the expression of disablist hate on the online
bulletin board, Reddit (Burch 2018). This project drew upon the con-
text of shrinking financial support and vitriolic media representations
of welfare, under austerity-measures. Thus, search terms included those
related to financial instability and disability, for example ‘scrounger,’
‘welfare,’ ‘cheat,’ ‘benefit claimant,’ ‘disabled’ and ‘disability.’ While
these search terms did return some more positive discussions surround-
ing disability and the impacts of welfare reform, many comments re-
mained to be underpinned by disablist attitudes presenting, for example,
pity and infantilization. Many threads did also offer deep and thought-
ful conversations surrounding disabled family members and personal
experiences, demonstrating the potential for establishing strong support
networks on Reddit. The original scope of the project, however, meant
that these discussions were not subject to further analysis.
With over 330 million users (Smith 2019) from approximately 215
countries (Reddit 2015a), Reddit offers international and cultural
diversity. In addition, Reddit is heralded as a supporter of free speech
and encourages its users to utilize the tools of anonymity. Specifically,
the anonymity afforded by Reddit allows for ‘provocative, personal, and
often-revealing aspects of a person’s life’ to be posted on online plat-
forms with tangible connections back to that person’s life (Gullota et al.
2014). Thus, it is suggested that ‘the anonymity of the internet usually
brings out the worst in people’ (Reddit 2014b) because ‘it is just easier
to bitch about it on the internet’ (Reddit 2015b). So-called ‘throwaway
accounts’ enable users to post comments under ‘temporary technical
identities’ (Leavitt 2015) disassociated from their offline self. Demon-
strated in previous work, the ability to post from these anonymous ac-
counts is recognized widely by users, and often heralded as a unique and
liberating feature of Reddit. Indeed, in response to a slight shake-up of
content policy on Reddit, many users protested, posting comments such
as ‘surely, edit, a pioneer of free speech will provide us an outlet for our
angst’ (Reddit 2015b).
Along with a number of other social media sites, Reddit has attempted
to manage the content posted on their sites. Despite openly providing ‘a
lot of leeway’ regarding content, Reddit’s content policy prohibits the
expression of content that ‘encourages or incites violence’ or ‘threatens,
harasses, or bullies’ (Reddit 2018). Thus, there are some regulatory mea-
sures that have been implemented as a means of reducing the presence of
hateful content on Reddit (Reddit 2015c). For example, individual mod-
erators of specific Reddit threads have the responsibility to temporarily
ban users from posting content. More recently, five threads were re-
moved from the site due to harassment. While these developments show
improvement, the management of online platforms is a thorny issue.
 ‘The Stuff of Nightmares’ 25
Findings

‘The stuff of nightmares’: Fear of Disability from the

Non-disabled Imaginary
According to Titchkosky (2016), when non-disabled people imagine the
prospect of disability, they do so through the words and assumptions
of ableism. From this imaginary, disability is positioned within a nar-
rative of dependency, struggle and unhappiness. Imagined by one user:
‘I wouldn’t want that life, so it is hard to think these guys are truly
happy’ (Reddit 2014a) while another questions their very existence: ‘but
how do you feel about being disabled? I mean, I would rather be dead
honestly’ (Reddit 2012).
Revealing a sense of authorship over the lives of disabled people, these
comments demonstrate the fear towards disability when imagined by
non-disabled people. What is more, they present a sense of distance felt
between the orator and disabled people, between the ‘I’ and the ‘you.’
Doing so, disability is positioned as something distinct from the non-
disabled imaginary and, thus, at a safe distance.
Comments that construct divisions between the lives of disabled and
non-disabled people maintain the safety of imagining, rather than living
disability. Evident in assumptions surrounding quality of life, disability
is imagined as ‘the stuff of nightmares’ and ‘a fate worse than death’
(Reddit 2012). For another user, disabled children are suggested to have
been ‘stricken by the misfortune to live the rest of life as an imbecile try-
ing to fumble [their] way towards the grave’ (Reddit 2012). These com-
ments assume a pitiful and tormented existence (Overboe 2009), that is
incomprehensible for the non-disabled imaginary. Put bluntly, ‘there are
things worse than death. Rotting away, deprived of your beautiful phys-
ical and mental abilities’ (Reddit 2012). To rot suggests a story of deteri-
oration and decay, and again makes a nod to the prospect of ‘fumbling’
towards the grave. Such an existence, as imagined through the values
and assumptions of ableism, presents ‘the disavowal of the presence of
death and mortality’ (Hevey 1991, 13). Thus, the lives of disabled people
are positioned to occupy a liminal space of not quite living, ‘declassified
but not yet reclassified’ (Murphy et al. 1988, 237). Disability occupies a
murky existence between life and death outside of the imaginations of
non-disabled people.
The non-disabled imaginary often assumes that disability is a life
lacking happiness and purpose. According to Wong (2000), the most
common attitude felt towards death is fear, and in particular, the fear
no longer being in existence. The fears of non-disabled people relating
to both death and disability create a metanarrative of disability as a life
not worth living. ‘Scrupulously described, interpreted, and displayed,’
the bodies, minds and behaviours of disabled people function as ‘icons
upon which people charge their anxieties, convictions, and fantasies’
26 Leah Burch
(Garland-Thompson 1997, 56). Conceptualized as a ‘terrible, unending
tragedy,’ disability becomes a future to avoid (Kafer 2013) or one that
is too painful to confront (Sinason 1992). Such narratives are disabling
in the stories that they tell, as well as the discussions that they evoke,
providing fertile grounds for simplistic conversations around abortion
and sterilization.
Conversations surrounding abortion, prenatal testing and sterilization
are often shaped by the assumption that disabled children are a ‘burden,’
who will ‘destroy the lives of the parents’ and bring ‘suffering’ to their
family (Reddit 2014a). While a debate on prenatal testing, abortion and
the right to ‘choose’ is out of scope for this chapter, it is necessary to note
how negative imaginaries of disability shape these discussions. Specifi-
cally, where debate centres on tragedy ‘a future with disability is a future
no-one wants, and the figure of the disabled person, especially the foetus
or child, becomes the symbol of this undesired future’ (Kafer 2013, 3; see
also Burch 2017). Such debates mirror those disablist attitudes presented
on Reddit that support sterilization as a means of necessary precaution
to preventing the misery and tragedy of disability. One user notes, ‘I’d
prefer abortion, it’s much more humane than how I’d ever treat a defec-
tive child’ (Reddit 2012) while another proposes that ‘abortion or giving
the kid to a clinic would be so much more humane for both the kid
and the parents’ (Reddit 2014c). Such comments, in addition to support-
ing the appropriateness of prenatal screening and abortion, similarly
advocate for the use of disabled people within research. Among others,
one user asserts that ‘severe mentally handicapped babies… should be
used for research or killed’ (Reddit 2013b). Such comments diminish
the value of disabled lives and present an uneasy reminder of the past,
whereby the sterilization of those deemed to be ‘mentally defective’ was
considered crucial for society (Hubbard 2013). In the United States,
these ideas translated to the widespread adoption of sterilization laws,
and resulted in an estimated 200,000 women being sterilized between
1930 and 1970 (Saxton 2013).
While many of us would hope that conversations of forced steril-
ization are locked securely in the past, there was substantial support
on Reddit. Justified by assumptions of ability and intelligence, users
argued that disabled people did not understand enough about sex to
reproduce, and that they were also unable to look after a child (Reddit,
2011) Thus, claims that ‘people like this should not be allowed to pro-
create’ (Reddit 2011) proposes forced sterilization as the most appro-
priate solution. Here disability is presented as something that must be
managed through the actions of non-disabled people, coated within
the justification of moral necessity and logic. Management of d isability
thus takes the form of particularly damaging conversations concerning
abortion and reproductive rights and again relates to perceived quality
of life.
 ‘The Stuff of Nightmares’ 27
The imagination of disability through the assumptions and values of
ableism reinforces stories of inability and tragedy. Thus, the question of
life itself is brought into discussion, with many users suggesting death as
a more humane and moral response to disability. One user asked, ‘can we
just pull the plug on coma patients and euthanize the severely retarded?’
(Reddit 2014a). Casually articulated, this comment proposes the use of
mercy killing and euthanasia as obvious alternatives to living life as a
disabled person. The support for euthanasia was widespread, with users
noting that society would be in a much better situation, both financially
and genetically, if eugenics was socially acceptable. Euthanasia is pre-
sented as a ‘swift and painless’ death (Reddit 2012) and an alternative to
a ‘creature that will never fully develop’ (Reddit 2012). These comments
render the lives of disabled people unbearable, consumed by pain and
misfortune and, therefore, ‘absolutely pointless’ (Burleigh 1994). Such a
story proposes death as an appropriate and humane solution to manag-
ing disability. Within this narrative, disabled people

are made subject to a process of “(human) waste disposal” to which

“unfit, invalid or unviable human relations [are] born with the mark
of impending wastage” (Bauman 2004). Marked in this way, dis-
abled people are presented as an infringement to the economic and
genetic advancement of society.
(Burch 2018, 403)

Further analysis suggests that there are alternative justifications for

death, predicated not simply upon assumptions of quality of life, but
means of economic gain. Disabled people are perceived as ‘a colossal
waste of energy and resources’ (Reddit 2013c). Here, the lives of disabled
people are subject to cost-benefit analysis that is interrogated through
the values of ableism and the logic of a ‘cultural political economy of
welfare disgust’ (Jensen & Tyler 2015, 478). This cost-evaluation is
evident in comments stating that ‘letting them die off saves resources’
(Reddit 2013c) and disabled people are ‘causing extreme harm to our
economy as a whole’ (Reddit 2011).
In recent years, welfare support has become a symbolic of deviance
and deficit in the context of a shrinking welfare spending budget. Within
this context, ‘the neoliberal, hard-working taxpayer’ is portrayed as the
victim of financial inequality while disabled people and others receiving
welfare support are painted as cheats, scroungers and skivers (Garth-
waite 2011; Hughes 2015). Indeed, such representations constitute a
metanarrative of disability within which disabled people are ‘objectified
[and] framed in a narrative that bolsters the normate subject position’
(Bolt 2014, 9).
With employability an increasingly important requirement of the
body (Lakes 2011), feelings of inequality and resentment underpin much
28 Leah Burch
of the discussion surrounding disability and welfare support. Questions
such as ‘why should society take care of all those who can’t take care
of themselves?’ (Reddit 2014b) and ‘it’s not like that retarded baby will
help society, right?’ (Reddit 2013c) reduce the value and purpose of the
human life to one of financial stability and productivity. Within this nar-
row narrative, it is proposed that ‘the severely mentally disabled do not
contribute to society’ (Reddit 2013b) and that, therefore, ‘they serve no
purpose to society’ (Reddit 2014a). Demonstrating a process of ‘making
invisible the very humanity of the victim’ (Bauman 1989), such com-
ments reinforce the homogenization of particular groups as a threat to
the social order, and their exclusion from the category of the human.
Exclusion from the category of the human on the basis of economic con-
tribution magnifies a metanarrative of disability that is formulated upon
those unwanted characteristics of ableism. With economic productivity
and ‘independency’ taking on particularly charged meanings within
current notions of citizenship, disabled people become something of a
nightmare in need of disposal and management.

Conclusion
Throughout this chapter, I have explored some of the ways that disablist
attitudes are distributed and reinforced on the online media platform,
Reddit. While I am not suggesting that media platforms will always re-
inforce disablist attitudes towards disability, or that these are the only
stories of disability that exist on such sites, social media provide a pos-
sible space that can be manipulated to share and reinforce disabling
narratives. Indeed, the affordance of anonymous and disposable online
identities allows for the safe distribution of demeaning and derogatory
messages with other users (Gullota et al. 2014). While these stories exist
on the online world, they are representative of narratives of disability
that have long-standing prominence in the offline world. In this way,
online media present an opportunity for these narratives to gain further
momentum and should not be approached lightly due to their seemingly
online existence.
Drawing upon the context of austerity, particular representational
narratives of disability have been shown to perpetuate harmful attitudes
towards disability. These attitudes position disability as defective, de-
pendent and a drain to society. Anxieties of one’s own financial posi-
tioning, perpetuated by media representations of disability, provide the
undergirding logic that maintains the denigrating expulsions towards
‘national abjects’ (Jensen & Tyler 2015). Presented in the words of
(Fritsch 2015, 48), disability

is given meaning through the neoliberal hegemonic social imagi-

nation that defines disabled people as unworthy, inadequate, and
 ‘The Stuff of Nightmares’ 29
dependent, while naturalising disability as excessive, contaminated,
indicative of helplessness, pitiable, deviant, tragic, and inferior.

These disablist attitudes have disabling consequences; by reinforcing a

metanarrative of disability as an unworthy and unwanted state of be-
ing, such narratives justify the perception that disability is in need of
treatment, cure or avoidance. Indeed, the disablist attitudes present on
Reddit pave the way for the continued support of disabling systems and
practices aiming to manage disability. Continued support, for example,
for euthanasia, prenatal testing and abortion, and forced sterilization
reinforce problematic quality of life assumptions and reject the variety
of possibilities of living, being and giving as a person with impairments.
The negative attitudes towards disability presented within these narra-
tives become the defining features of disabled people (Garland-Thompson
1997) and proof of carefully constructed boundaries between ‘us’ and
‘them.’ Indeed, such narratives bolster the normate subject position by
reducing the story of disability to one of misfortune. Through the gener-
ation and preservation of narratives of disability, such as those explored
within this chapter, it is possible for non-disabled people to deny their
own human fragilities by casting them aside as characteristics confined
to disability (Garland-Thompson 1997; Watermeyer & Swartz 2016).
Disability becomes ‘necessary for the reiteration of “truth” of the “real/
essential” human self who is endowed with masculinist attributes of cer-
tainty, mastery and autonomy’ (Campbell 1999, 58). Disablism not only
problematizes difference but also operates alongside ableism to shape
and reinforce normative assumptions about the mind and body. As
Garland-Thompson describes: ‘the meanings attributed to extraordinary
bodies reside not in inherent physical flaws, but in social relationships in
which one group is legitimised…by systematically imposing the role of
cultural or corporeal inferiority on others’ (1997, 7)
The disablist comments on Reddit presented in this chapter feed into
this ongoing process of subjugation and legitimation by reinforcing a
metanarrative of disability that resembles the characteristics and vulner-
abilities feared by non-disabled people. What is more, they contribute to
the normalization of discrimination and hate towards disabled people.
While supporters of free speech might suggest that ‘opinions in and of
themselves are not harmful’ (Bruce 2001, xviii), everyday expressions of
prejudice can very quickly develop into a culture that tolerates discrimi-
nation (Nemes 2002) and perpetuates power inequalities within society
(Slagle 2009). In support of growing scholarship surrounding disablist
hate (Quarmby 2011; EHRC 2012; Sherry 2012; Levin 2013; Roulstone
& Mason-Bish 2013), the findings of this project suggest that we need to
take ‘casual’ or ‘aversive’ disablism (Deal 2007) more seriously and sit-
uate devaluing, denigrating and disempowering discourses of disability
under the label of ‘hate speech.’
30 Leah Burch
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3 Madeline Stuart as
Disability Advocate
and Brand
Exploring the Affective
Economies of Social Media
Maria Bee Christensen-Strynø and
Camilla Bruun Eriksen

Madeline Stuart is a 23-year-old fashion model from Australia who lives

with Down syndrome. Since the spring of 2015 she has gained extensive
visibility and attention on social media by documenting and promoting
her achievements in the international fashion industry. She became a
social media phenomenon after her mother created a public Facebook
profile with photographs of her, and ever since she has travelled around
the world to attend fashion industry shows and events. For instance,
she became the second person with Down syndrome who appeared on
a New York Fashion Week runway in September 2015 (only surpassed
by the American actress Jamie Brewer who modelled during this prom-
inent semi-annual fashion event earlier the same year). Currently Stuart
has more than 650,000 followers on her public Facebook profile and
195,000 on Instagram (retrieved January 2019).
From early on, after the first pictures of Stuart went viral, her online
presence was characterized by a high level of activity distributed across
a number of social media platforms including Facebook, Instagram and
Twitter, supplemented by a standalone website and a (now deactivated)
blog. Her consistent and massive presence has been marked by an explicit
advocacy for disability visibility and inclusion, which is perspicuously
stated in her Facebook profile description that says: ‘I am a model,
I hope through modelling I can change society’s view on people with
disabilities, exposure is creating awareness, acceptance and inclusion’
(Facebook 2018).
At the same time, gaining visibility and attention has led to an increased
professionalization and celebrification of Stuart’s self-presentation
in which she has taken on a number of versatile and distinctive roles
and identities as supermodel, advocate, dancer, role model, actor and
philanthropist (Madelinestuartmodel 2018). Recently, she has added
fashion designer and webshop owner to the list by launching her own
clothing label 21 Reasons Why, which through its direct reference to
36 Maria Bee Christensen-Strynø and Camilla Bruun Eriksen
the ‘extra’ chromosome that is often assigned as a defining (biomedical)
marker of being a carrier of Down syndrome reflects and highlights
the co-presence and intermingling of commercial interests and Stuart’s
self-identification as a disability advocate.
In this chapter, we explore the dynamics and tensions relating to the
co-existence of Stuart’s self-commodification and disability advocacy.
We look into the ways in which Stuart manages and negotiates her
different roles and identities through transformative processes of celeb-
rification (Jerslev 2014, 2016) on social media defined by a set of specific
strategies such as (subcultural) micro-celebrity (Abidin 2016; Marwick
2013; Raun 2018; Senft 2008, 2013) and Instafame (Marwick 2015).
Our analysis is thus situated broadly within a cultural studies approach
to disability with a critical orientation towards cultural representation
(Garland-Thomson 1997, 2009; Snyder & Mitchell 2000; Waldschmidt
et al. 2017) through which our particular analytical focus is the self-
representation exercised by Stuart on social media.
Inspired by Sara Ahmed (2010, 2014 [2004]), we understand the
Stuart case through a conceptual framework of affective economies,
which is operationalized for the purpose of thinking about disability
as a form of emotional currency, and which through circulation and
exchange acquires surplus value. In this framework, disability, then,
is explored in itself as an empty sign to which meaning and value at-
tach themselves through their continuous circulation. This is effectively
demonstrated by paying analytical attention to Stuart’s framing of the
common cultural trope of weight loss as a significant transformative
process, which, we argue, performs as a gateway to legitimizing and
branding Down syndrome and disability as a particular capitalizable
identity. We conclude the chapter with a discussion of the accumulation
of value and capitalization of Stuart’s social media practice and her
career as a model.

Madeline’s Story: ‘The World’s Most Famous

Model with Down Syndrome’
Stuart’s story of becoming a model is told on her personal website as
Madeline’s Story. The ‘plot’ in this unfolds as a familiar tale of gene-
sis, in which a completely unknown person achieves success, fame and
wealth on the background of their online accomplishments. The narra-
tive development in this type of story builds upon well-known merito-
cratic principles such as talent, ambition and willpower (Littler 2018),
which have been widely promoted and institutionalized in contemporary
popular cultural entertainment genres such as reality and makeover TV
shows (Weber 2009). In other words, Stuart is framed through positions
that are culturally recognizable to many people, but with ‘a twist,’ since
 Madeline Stuart as Disability Advocate 37
she is not just an unknown young woman who wishes to become a fash-
ion model, she also lives with Down syndrome.
In Madeline’s Story we are told that:

[a]s with many people with Down syndrome, Madeline struggled

with her weight for a long time, and in early 2015 she decided to get
healthy and chase after her dreams […]. She lost over 20 kg, and is
now changing society’s perception of people with disabilities, one
photo shoot at the time.
(Madelinestuartmodel 2018)

It is highlighted that she has been labelled ‘the world’s most famous
model with Down syndrome’ in the media, and that she has been fea-
tured and headlined in numerous international media stories, as well as
that she has been travelling around the world since her first appearances
on social media.
First of all, Madeline’s Story illustrates important developments and
trends of contemporary digital media practices in relation to disability,
in which online and social media can be seen as creating opportuni-
ties for a new disabled workforce to enter the scene of mainstream
media (Ellis 2016). It is noticeable that not only has the internet gained
more recognition as an alternative site of disability representation, but
online spaces are also becoming an area in which a growing number
of people who self-identify as disabled disclose and frame their per-
sonal experiences of disability as proficient skillsets (ibid., 91–92). This
points to an important development in which disability shifts away
from traditional locations of media representation and sociality as an
always tragic and pitiful figure (cf. Garland-Thomson 1997; Liddiard
2014; McRuer 2006; Preston 2016). Thus, on social media the con-
ventional predetermination of disability as a devalued form of identity
and embodiment seems to become more ambiguous and is now being
challenged by entrepreneurial (and activist) voices from an emergent
globalized disability community (Ellis & Goggin 2015; Trevisan 2017).
In the light of an increasingly precarious job market (Beer 2013, 102)
and the information-saturated global media economy’s applauding of
the ability to attract attention (Fairchild 2007, 359), this shift might
not be all that surprising. As expressed by disability and media scholar
Katie Ellis: ‘In an era of self as product and constant networking for the
next job, disability has become an asset’ (2016, 93). This is a statement
that points towards the growing possibilities of professionalizing and
branding disability in new ways, and which is also particularly perti-
nent in relation to Stuart’s presence on social media as her professional
self becomes openly entangled with contemporary notions of celebrated
and celebrified selfhood.
38 Maria Bee Christensen-Strynø and Camilla Bruun Eriksen
The Logics of Celebrification: (Subcultural)
Micro-celebrity and Instafame
Celebrity strategies, and celebrification as a performative practice of
doing celebrity (Jerslev 2014), have progressively become a rich area
of study in social media research, in which the conceptualization of
micro-celebrity has come to denote a way of naming the orchestrations
of characteristic approaches and practices of self-representation (Abidin
2016; Jerslev 2016; Marwick 2013, 2015; Raun 2018; Senft 2008,
2013). According to social media scholar Alice Marwick (2013, 2015),
individual private users of social media benefit from the use of micro-
celebrity strategies in order to increase their online popularity. Marwick
explains how micro-celebrity, in comparison to traditional notions of ce-
lebrity, clearly constitutes itself as a performative practice, as something
people do instead of as an ascribed value of identity (2015, 140).
As a supplementary specification and variation of micro-celebrity, Mar-
wick (2015) has also introduced the concept of Instafame, which directly
relates to attaining celebrity status on the social media platform Insta-
gram, but also contrasts some of the central conceptual characteristics of
micro-celebrity. Whereas the practice of micro-celebrity is conditioned
through an explicit readiness and familiarity that presupposes personal
availability, understood as a dedicated willingness to engage in direct
and sometimes intimate exchanges with fans and followers (Marwick
2013, 118), an instafamous position puts emphasis on more conventional
hierarchies of celebrity status, in which success is obtained through the
capability of visually imitating traditional mainstream celebrity culture.
In this sense, as Marwick asserts, celebrity is re-inscribed with tradi-
tional iconographies such as glamour, luxury and wealth (2015, 139).
These positions of celebrification are both of relevance in relation to
Stuart. Although she carries out and performs an identity of a consider-
ate and attentive micro-celebrity who acknowledges and appreciates her
followers, at the same time she also manages to maintain a clear distance
to her fans, which is most evident in her use of Instagram. Contrasting
the more varied mix of images and information she shares on Facebook
or Twitter, Stuart’s profile on Instagram is exclusively centred on im-
ages of herself, most of which are related to successful moments in her
career as a model. The importance of visual self-control is intensified on
Instagram due to the affordances of the platform, which privilege the
aestheticized and stylistic image post rather than explanatory captions
or comments (Marwick 2015, 143). This is reflected in Stuart’s use of
the platform and thus makes her Instagram profile an exemplary site of
exploration.
Consequently, we frame Stuart within a discourse of celebrification
on social media that mixes strategies of micro-celebrity and Instafame.
However, as this framing takes place primarily within the subculture of
 Madeline Stuart as Disability Advocate 39
disability media representation, in which Stuart’s minority status consti-
tutes a key component in the branding of her as a celebrity, and which also
permeates her whole presence on social media, it is of relevance to add yet
another specification to the logics of celebrification. This is the concept
of subcultural micro-celebrity, which was introduced by Tobias Raun
(2018) in connection with a study of the developments in trans-vlogging
on YouTube. According to Raun this specific appendix to micro-celebrity
clarifies and puts emphasis on an important form of political identity
that occurs in between positions of (activist) minority cultural self-
presentation and self-commercializing micro-celebrity strategies.
Subcultural micro-celebrity corresponds well with Stuart’s explicit
claims for a minority political position of disability (or different ability, as
she prefers to call it) through positioning herself as a unique and market-
able brand. This is particularly apparent in social media posts exhibiting
her alliances and engagements with specific Down syndrome and disabil-
ity organizations and communities. One example of this is a photograph
of Stuart posing in a T-shirt with the print: ‘I ♥ HOMIES WITH EXTRA
CHROMIES,’ which is supplemented by an image caption with a per-
sonal endorsement of a small shirt-making business that promotes and
raises awareness on Down syndrome (Instagram 2017).1
The framing of Stuart, through the logics of celebrification, draws
out some of the immediate characteristics of how disability is being re-
framed on social media. In the following section we introduce the con-
cept of affective economies, which constitutes a framework that can help
us grasp and conceptualize the complex signification and circulation of
disability within Stuart’s social media self-representation.

Affective Economies and Disability

Borrowing from the Marxian critique of the logic of capital Ahmed
(2014) claims that affect too is a form of capital (11). Just as is the case
with money: ‘[…] affect does not reside positively in the sign or com-
modity, but is produced as an effect of its circulation’ (ibid., 45). In this
way Ahmed is suggesting that emotions do not (and cannot) reside inside
someone: ‘[…] meaning that “the subject” is simply one nodal point in
the economy, rather than its origin and destination’ (ibid., 46). 2 Instead
feelings are to be found between bodies, signs and objects as they move
through ‘sticky’ associations creating what Ahmed calls the ‘rippling’
effect of emotions (ibid., 45). In this way the distribution of signs or
objects across a social as well as psychic field converts into affect: ‘Signs
increase in affective value as an effect of the movement between signs:
the more signs circulate, the more affective they become’ (ibid.). The
concept ‘affective economies,’ then, is a tool for Ahmed to dismantle the
circuits of affective value and the construction of social norms.
40 Maria Bee Christensen-Strynø and Camilla Bruun Eriksen
However, emotions not only stick – they slide too. Focusing on hate,
Ahmed explains how emotions get ‘stuck’ to a social figure (i.e. the asylum
seeker) by sliding both sideways between other signs, constructing a
relation of resemblance between signs, bodies and figures, as well as
backwards, and thereby: ‘[…] reopening past associations, which allow
some bodies to be read as being the cause of “our hate”’ (ibid., 54). In
this way Ahmed’s theorization of affective economies becomes especially
useful when trying to identify or simply ‘follow’ an almost never straight
line between signs, bodies, feelings, images and (affective) narratives.
Also, worth noticing – as does Nirmala Erevelles (2014) in ‘Becoming
Disabled’: ‘Ahmed’s argument enables affective relations between assem-
blages that do not have to claim humanist notions of subjectivity’ (230).
In other words, Ahmed’s definition of affect allows us to follow the very
complex ways a social body, e.g. the disabled body, is interrelated with
(and made possible through its proximity to) not only other bodies but
also signs, objects and communities – as it underlines and makes clear,
how affect helps structure some bodies as more fragile and vulnerable
than others. It is of relevance to point out that an analytical approach to
disability through affect also extends into important themes of agency.
Through the mapping of affective signs the disabled body reveals itself
as a site of micro-political negotiations of social identity. As agency trav-
els along the construction of social identities, some of which are consid-
ered more or less agentive than others, it becomes evident that reading
disability through affect is also a review of the ability to gain agency
(Hickey-Moody & Crowley 2010). Furthermore, when understanding
affect as a system of economic valuation, agency not only can be viewed
as a valuable by-product of inhabiting specific social identities but also
becomes negotiable and obtainable through the continuous circulation
of affective signs that, as Ahmed suggests, ‘slide’ and ‘stick’ – in this case
to a body clearly marked with disability in the form of Down syndrome.
An example of this is a post made by Stuart in which she is posing in
a Diesel-shirt with the word ‘abort’ written across her chest under the
headline: ‘The more hate you wear, the less you care’ supplemented by
the hashtag ‘#DieselHateCouture’ (Instagram 2018a). In collaboration
with Diesel, Stuart states that she wants to make her followers aware that
hate is often associated with Down syndrome: ‘Hate starts at a very early
age with Down Syndrome, but it is the worst sort of hate, it is the hate
that comes across in an accepted way for most of society.’ Stuart goes on
to explain that expectant parents are most often recommended to termi-
nate a pregnancy in an effort ‘[…] to eradicate Down syndrome’ (ibid.) if
detected. As pointed out by Stuart, hate and Down syndrome are closely
connected, or in Ahmed’s vocabulary: hate ‘sticks’ to bodies marked by
the ‘sign’ Down syndrome, a hate, Stuart in a later post explains, she is
no stranger to. In this post a screenshot shows a personal message sent
to Stuart by an 11-year-old child wishing her dead (Instagram 2018b).
However, towards the end of the first-mentioned Diesel-post, Stuart also
 Madeline Stuart as Disability Advocate 41
declares that it is, in fact, this particular hate connected to Down syn-
drome that has given her ‘[…] the strength to show my worth and prove
to the world I am here and I am worthy’ (Instagram 2018a). Also gener-
ally using hashtags such as #inclusion, #diversity and #timesarechang-
ing, Stuart takes part in a negotiation of the affective signs associated
with Down syndrome by pointing out that the hate, which through met-
onymic slides between signs like ‘abortion,’ ‘eradication’ and ‘death,’ gets
distributed to and across her own body. This shows that Stuart attempts
to take part in a conversation about diversity and inclusion, which can
be read as an effort to convert hate into positive-connoted actions such
as finding ‘the strength’ to show her ‘worth.’
With Ahmed’s relational model of the sociality of emotions in mind,
disability can be seen in itself as an empty sign to which meaning and
value attach themselves through their continuous circulation, contact
and juxtaposition with other signs. However, the circulation of signs
is not the sum of one’s own choosing and several disability scholars
have analysed how visible signs of disability are inscribed in what we
in Ahmed’s terminology could call emotional economies of fear, dis-
gust, pity, etc. An example of this is the way in which the disabled
figure in popular cultural representations almost always falls short of
mainstream perceptions of what constitutes a ‘real and ‘whole’ body,
and therefore becomes a sign of shame and unhappiness (Clare 1999;
Garland-Thomson 1997; McRuer 2006). Thus, when Stuart enters the
self-representational scene of social media, her visible markers of Down
syndrome and disability are already enrolled in a ‘failed’ economy, so
to speak. As some disability scholars have pointed out, both negative
and positive representations of disability have contributed to a number
of dominant stereotypes, figures and narratives, such as the overcom-
pensating supercrip (e.g. para-athletes portrayed as particularly and
extraordinarily skilled in spite of their disability, which is also a trope
that could very well appear on a list of Down syndrome stereotypes
(see Ellis 2015; Garland-Thomson 1997; Snyder & Mitchell 2000). But,
as is discussed later in this chapter, disability in Stuart’s social media
practice is being revaluated as it attaches itself to and travels through
various signs (such as luxury goods and exclusive events) and narratives
(of both celebrification and weight loss). Paying special attention to the
main trajectories that help Stuart renegotiate and convert disability from
a devalued position of embodiment within a failed economy of disability
into a valuable currency of celebrated selfhood we will now turn to the
grand narrative of weight loss.

Revaluating Disability through Weight Loss

As we have briefly touched upon when introducing Stuart’s self-
representational practice on social media, the narrative of transition
and transformation through weight loss is given substantial attention in
42 Maria Bee Christensen-Strynø and Camilla Bruun Eriksen
Madeline’s Story (Madelinestuartmodel 2018). This storyline is further
projected in Stuart’s social media posts, especially on Instagram where
Stuart regularly uploads pictures from the gym, and of her performing
sports activities, which are also often supplemented by body positive
hashtags such as #nolimits, #womenshealth and #diversity (Instagram
2018c).
In the following analysis of Stuart’s self-representation of weight loss,
we focus on her images from Instagram. It is thus of relevance to note
that social media imagery may differ from printed photography in a
number of ways. Particularly pertinent in this connection, visual culture
theorists have stressed that the dynamic circulation of screen-based
digital images changes our visual perception in ways that are much more
dependent on the understanding of flows and streams than on seeing
pictures on social media as isolated media texts and single images (Hand
2017; Rubenstein & Sluis 2008). While we do single out specific images
from Stuart’s Instagram profile as analytical examples, we also recog-
nize that these are part of social media practices that are highly dynamic
and intertextual. In Stuart’s case this means that the narrative of weight
loss is deeply intertwined with the constant streams of pictures uploaded
to Instagram. This intertextuality not only creates links to the continu-
ous framing of herself on her own profile as an instafamous and subcul-
tural micro-celebrity, but it also explicitly positions her in extension of
other weight loss, sports and fitness-related imagery on Instagram and
other social media, as well as in the broader cultural imagination and
representation of ‘becoming fit’ and ‘losing weight.’
Stuart emphasizes that her decision to lose weight was partly a con-
sequence of living with Down syndrome (giving her a low metabolism).
Because she wanted to avoid illness and bad health in the future, Stuart
says she made a choice to become ‘fit’: ‘It has never been about being
Skinny, it has always been about my health. The career that followed
was just a bonus’ (Instagram 2018c). However, the narrative of weight
loss does more than position Stuart as a body positive activist. As an
already culturally acceptable position of bodily transformation, which
is the case in popular makeover TV shows (Weber 2009), weight loss
helps make Stuart more broadly recognizable as a regular person. As fat
scholars have pointed out, this happens because weight loss is a common
cultural trope so heavily impregnated with positive value that it is sel-
dom questioned, but almost always celebrated and encouraged (Bacon
2010; Basham et al. 2006; Bordo 2003; Miller 1999). When Stuart
repeatedly aligns herself with the positive affective value of weight loss,
she is also creating an immediate gateway allowing herself to operate
within conventional scripts of bodily normativity. Correspondingly, the
visual depictions of Stuart are imbued with familiar tropes of make-
over logics such as before-and-after pictures and flattering images of
the after-body (Weber 2009). Fatness – much like disability – can be
 Madeline Stuart as Disability Advocate 43
thought of as stigmatized state of embodiment to which almost only
negative affect sticks. However, unlike disability, fatness is most often
viewed as a temporary ‘condition’ within the control of the individ-
ual (Harjunen 2009; Maor 2013). Similar to the stigma of addiction
fatness is also commonly perceived as an undesirable and changeable
bodily state that reflects bad decision-making and ultimately a lack of
personal control (Murray 2008). On the one hand, several fat scholars
have also underlined that since the fat body is never culturally allowed
to occupy the after-position, the before-and-after narrative produces
the fat body as unstable, liminal and an incomplete subject always in the
process of ‘becoming’ thin (Kendrick 2008; Kent 2001; Levy-Navarro
2009). On the other hand, thinness is celebrated and attributed a long
list of positive qualities – or as Ahmed would probably argue: the slide
between weight loss and thinness allows the skinny body to be read
as a ‘success’ associated with ‘happiness,’ ‘willpower,’ ‘the future’ and
‘agency’ opposite the fat body ‘stuck’ in the past in the form of a sad
before-picture.
This is also the case with Stuart. In many of the gym pictures, which
represent the after-body, Stuart is depicted while exercising or posing
with fitness equipment in ways that are appealingly staged. In one image
she is portrayed in a confident frontal pose, one hip protruding, gazing
directly into the camera, while nonchalantly lifting a dumbbell. She is
in full makeup, her hair insouciantly brushed back, and she is wearing
tights and a sports bra, ‘casually’ showing off her fit and slender body
(Instagram 2018d). In contrast, the before pictures of Stuart show her in
rather unflattering ways and thus seem to be chosen in accordance with
the underlying and highly naturalized logic of before-and-after imagery.
In Stuart’s case, it is implied that her before-body is less attractive than
her after-body because she carries more body weight. However, it could
also be argued that the before-pictures appear to be less appealing pri-
marily as a question of photographic modes of expression and aesthetics.
In two before shots that are juxtaposed in an image montage together
with two after-body images (one of which is the one mentioned earlier),
Stuart is depicted in non-posing and somewhat trivial situations, one
in an outdoor sports arena, and one in a meadow next to a tree. She is
wearing ill-fitting clothes, and she doesn’t seem to be aware of the camera
(Instagram 2018e). Compared to the after-body images from the gym,
the before-pictures are bad quality, low resolution photos, less arranged
and stylized, all of which make Stuart’s appearance rather awkward and
a bit goofy. The before-body that is not identifiable as the body of a su-
permodel because it is not slim is also not recognizable as a body made
available for the gaze of an audience: it doesn’t know how to pose for the
camera, or how to dress in order to present itself professionally, which
stands in sharp contrast to Stuart’s celebrified and glossy after-body, a
body that is fit and slim, but also polished and well-groomed.
44 Maria Bee Christensen-Strynø and Camilla Bruun Eriksen
In addition to a large number of photographs of training and sport-
ing activities, Stuart has also made it a practice to post statements with
motivation advice for a healthy life: ‘Forget Skinny, I am training to
be a Fit BAD ASS’ (Instagram 2018c). This creates a narrative allow-
ing Stuart to distance herself from an affective framing of the disabled
body as fragile and vulnerable by orienting herself towards signs of self-
determination and strength, which ultimately verify Stuart’s position-
ing of herself through individualized neoliberal logics of intention and
willpower.

Becoming a Fit Body, Becoming a Valuable Brand

Stuart’s weight loss story, like so many others,’ not only helps underline
an idealized notion of the controlled and disciplined body but also works
as a stabilization of (bodily) identity. By constantly stressing her own
dedication to living a healthy life and being in good shape Stuart man-
ages to push back on the stereotypical narratives about Down syndrome,
and about (intellectual) disability more generally, which is convention-
ally placed in devalued non-agentive positions (Ellis & Goggin 2015;
Goodley et al. 2012) and as conditions of illness and sickness in need
for cure (Clare 2017; Siebers 2008). Stuart’s weight loss narrative thus
becomes a way of taking control of the body, showing her followers that
‘even’ a body visibly marked by disability – through decisiveness and the
will to modulate and transform itself from fat to slim – can be controlled
and ‘tamed.’ ‘Too much’ body weight, in turn, becomes a kind of substi-
tute for disability, in the traditional sense of a ‘failed body,’ which (in a
makeover logic) legitimizes a necessary bodily transition through which
the body undergoes transformation from ‘otherness’ to ‘normalcy.’ First,
this happens through Stuart’s choice of making fatness her most central
‘identity crisis’ almost erasing disability in the process. In other words,
fatness becomes a substitute for Down syndrome and its pre-assigned
role as ‘problematic embodiment.’ Second, this seems to create renewed
space for Down syndrome and disability, as (unavoidable) markers of
identity, to circulate affect and hereby to be presented in a positive sense
as ‘unique’ and desirable characteristics. Instead of framing disability as
a problematic fundamental condition, Down syndrome comes to amplify
Stuart’s narrative of bodily willpower. The weight loss narrative thus
ends up almost safeguarding disability, making Stuart appear as a person
who has experienced positive bodily change and therefore has become an
authority on the matter. In addition, it is thus worth noticing that Stu-
art’s critical negotiation of disability identity goes through and is condi-
tioned by other identity borne constructions of bodily normality like that
of slimness. Therefore, Stuart’s ability to lose weight is an important part
of turning disability into a marketable and valuable product. As positive
affects, such as happiness and joy, circulate and manifest themselves on
 Madeline Stuart as Disability Advocate 45
her Instagram profile in the form of inspirational captions, big smiles
and glamorous work-out pictures, Stuart is able to distance herself from
a failed affective economy of disability by downplaying the importance
of disability and instead orienting herself towards another bodily ideal:
the slim body. In her rewriting of an affective economy of disability,
Stuart gains positive value through making connections and ‘sticking’
to already established and validated (healthy) paths, signs (of willpower)
and (happy) objects associated with weight loss. In this sense Stuart’s
becoming-fit-body is qualified as the object of future happiness and suc-
cessfulness without touching upon and reinforcing disability as a trope
of sickness and unhappiness that would be better off being eradicated,
which is otherwise ever so often the case with disability, a narrative Stu-
art is very well-aware and sceptical of. On yet another stylish image of
herself, here posing in the style of a sophisticated philanthropist, she
writes: ‘I have down syndrome, it is a genetic condition. It is not a sick-
ness and it does not make me useless or irrelevant’ (Instagram 2018f).
Another caption next to the image goes on to state:

I hear so many people refer to Down Syndrome as a sickness, I hope

with time people understand it is not a sickness as I am not sick and
also stop referring to it as a disability and start realising we all have
different abilities.
(ibid.)

By virtue of her subcultural micro-celebrity status, Stuart is able to

position herself and to mobilize her authority as a disability and Down
syndrome advocate, which translates into a subtle recoding and rewrit-
ing of disability (hence: ‘[…] we all have different abilities’). Stuart’s
after-body still contains visible signs of disability, which are not as such
aimed at being eliminated, but are nonetheless still present in the context
of a fashion industry permeated by idealizations of able-bodied mod-
els with tall, skinny, symmetrical bodies and faces. Stuart’s ability to
subsist within these logics is conditioned by the transgression of the ac-
cepted norms of beauty and body standards in the fashion industry and
is legitimized by her affective rewriting of Down syndrome. In other
words, Down syndrome and disability are, in this context, reiterated as
a characteristic ‘out of the ordinary,’ but in a revaluated form. At one
and the same time it is what sets Stuart apart from the conventional
fashion models, but it is also that which allows her to succeed in the
world of fashion. In this sense, Stuart’s ‘upgraded’ version of a healthy
Down syndrome body and identity comes to inhabit an unapologetic
and distinguished position of well-earned authentic extraordinariness.
Unlike the figure of the supercrip who gains positive recognition in spite
of a disability, Stuart manages to claim agency and position herself as
someone unique and authentic because of Down syndrome.
46 Maria Bee Christensen-Strynø and Camilla Bruun Eriksen
Consistent with research into contemporary strategies of branding,
Stuart capitalizes on her ‘uniqueness’ as a form of authenticity, and as
a flexible and entrepreneurial self, which exists in constant tension with
expectations about coherency and predictability (Gershon 2016). Inter-
estingly, this tension allows for Stuart to manage to advocate for Down
syndrome and to turn her disability status into a commodity and a
brand, in which the bridging of commercialized ascriptions of value and
disability is neatly aligned. One could, in fact, say that disability identity
becomes the qualifying criterion for an effective branding.
Once in control of her body, in the sense that Stuart now embodies
a long line of normative female beauty ideals and has rid herself of fat
stigma, the return to disability seems safer, perhaps even advantageous.
Instead of a sign of ‘sickness’ or ‘lack,’ disability is allowed to inhabit the
position as that ‘something extra,’ which gives Stuart edge and makes
her stand out: ‘My extra chromosome makes me extra supermodel’ as an
image caption reads (Instagram 2018g).

Closing Remarks: The Capitalization of Disability

In our pairing of Stuart’s celebrified self-commercializing strategies
with Ahmed’s concepts into an affective economy of disability, we have
through the narrative of weight loss on Stuart’s Instagram profile sought
to highlight how it is possible to turn Down syndrome and disability
identity into a valuable personal brand.
Stuart’s gain (as well as our analytical focus) is not primarily concen-
trated on monetary capital, but rather is occupied with the vindication
of disability identity as a form of social and emotional capital. However,
at the same time, it is not possible to separate Stuart’s social media prac-
tice entirely from questions about monetary value.
As the creator of a highly distinct and capitalizable brand of Down
syndrome and disability, Stuart is given the possibility to exchange her
accumulated positive value into goods in the form of advertisement,
sponsorships, travels and a luxury lifestyle.
The confluence of commodification and disability advocacy on social
media makes up a new and relatively unexplored field of tension in both
disability and media studies. Even without a large number of precedent
cases or comparable positions, what becomes clear through our analysis
of the Stuart case is the emergence of new forms of disability representa-
tions, in which minority identity and status may become valuable assets
in the creation of effective branding strategies. However, disability as a
category of capitalization is not something that is entirely new. Hence,
Stuart’s self-commercialization does not exist in a vacuum. Historically
there have been remarkable instances of ways in which disability has
been capitalized and monetized and several disability studies scholars
have scrutinized the ways in which disability has been explicitly ex-
ploited for economic gain (Bogdon 1988; Clare 1999; Garland-Thomson
 Madeline Stuart as Disability Advocate 47
1996, 1997). The dime and freak shows of the nineteenth century are
historical examples of how entrepreneurs and showmen made money
from the bag of ‘extraordinary bodies.’ The financial exploitation didn’t
end with the freak show however:

The extraordinary body shifted from its earlier visible, public posi-
tion as strange, awful, and lurid spectacle to its later, private position
as sick, hidden, and shameful, producing finally the fully medical-
ized freak who after 1940 was removed from the stage platform to
the teaching hospital amphitheatre, the medical text, and the special
institution.
(Garland-Thomson 1997, 78)

It may have started with priests, entrepreneurs and agents, desperate

or greedy families, philosophers and doctors showing off and profiting
from the ‘enfreakment’ of the disabled body (Garland-Thomson 1997,
57), but it didn’t end with them. Today’s growing self-help literature
in the genre of body improvement and talk shows and television pro-
grammes exhibiting extraordinary bodies are contemporary examples
of how individual entrepreneurs, large businesses and industries profit
from people’s desire, not only to live up to normative scripts of embodi-
ment but also to earn recognition, and possibly fame and fortune.
In the meantime, what seems to be different on social media from both
earlier and present times’ exploitative cashing in on disabled subjects as
curiosities and freaks is the reasoning that self-branding practices that
are carried out by individual people, such as Stuart’s, are often perceived
as being detached from exploitative arrangements. Online and social
media still thrive on their early image of being democratic outlets for
creative fulfilment and peer-production: ‘free from corporate and gov-
ernment constraints’ (van Dijck 2013, 15). However, as internet celebri-
ties and influencers (Abidin 2018) have made their way into the scenes of
social media, it also becomes more obvious that commercial value must
be considered an inevitable component in everyday media practices.
The wider issues that arise from our analysis of Stuart’s celebrified
self-representation on social media thus show that the entanglements of
commercialized platform logics and identity politics demand us to refine
our analytical apparatuses in order to understand the ways in which dif-
ferent forms of capital circulate and manifest. By activating an analytical
framework of affective economies we have introduced a productive lens
through which it is possible to map out the important mechanisms of
disability self-representation and advocacy on social media as processes
of affective revaluation. Thus by paying analytical attention to the per-
formative nature and circulation of affects on social media platforms,
concepts such as celebrification and Instafame become visible and recog-
nizable as scripted doings while disabled embodiment in similar ways
emerges as ongoing processes of becoming rather than inherent identities.
48 Maria Bee Christensen-Strynø and Camilla Bruun Eriksen
Acknowledgement
Parts of the analysis in this chapter built on research conducted for a
PhD project financed by The Danish Council for Independent Research
and Roskilde University (2015–2018).
A special thank you to Tobias Raun, who was originally supposed to
co-author this chapter, for contributing with invaluable insights in the
initial stages of thinking and writing.

Notes
1 It is important to note that not all ‘extra chromies’ fall within disability.
While an additional chromosome among males within medical discourse
has been labelled ‘Klinefelter syndrome’ or simply ‘47XXY,’ its status as
disability is contested. While some 47XXY may want to celebrate their addi-
tional chromosome through political fashion, such as the T-shirt promoted
by Stuart on Instagram, others may actively be fighting this positioning.
2 Like Ahmed we don’t distinguish between feelings, affect and emotions. For
a more elaborate clarification see Ahmed (2010, 230).

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4 Losing Someone Like Us
Memetic Logics and Coping
with Brain Tumours on
Social Media
Samira Rajabi

“Healthy people can become sick people in the blink of an eye. #BTSM”
(HYHUTriangle 2017)

Introduction
Brittany Maynard was dying when I first encountered her. As an active
member of a monthly digital community formed on Twitter dedicated to
wrestling with the complex experience of a brain tumour diagnosis, I was
not surprised when I was sent a YouTube video of Maynard. I hesitantly
pushed play, knowing the vicarious suffering of what I was about to see
would be viscerally confronting. I was speechless as I watched Maynard’s
swollen face, likely a by-product of her cancer treatment, look directly
at me through my phone screen. At just 29 years old, Brittany Maynard
was facing the end of her life and in this video, she passionately made the
case that she should be granted some agency in the process of dying from
a glioblastoma – an aggressive and often deadly brain tumour.
Sponsored by the US non-profit organization Compassion & Choices
which aims to improve patient rights at the end of their life, Maynard
uses this video to explain her decision to end her life. Looking past the
camera and thus looking past me, in a soft voice she says, ‘The thoughts
that go through your mind when you find out you have so little time is
everything you need to say to the people you love’ (CompassionChoices
2014). I knew the Brain Tumor Social Media (#btsm) Twitter community
understood what Maynard meant when she said this. Originally posted
on 6 October 2014, the video captured the national imaginary and it
was mediated and re-mediated over and over again. I knew the signifi-
cance the video held for my immediate digital community, but I was not
prepared to witness its national resonance and the way memetic logics
enabled the story to proliferate and take on new life. In my various social
media feeds, I saw still frames of the video remixed to reflect various
sides of the arguments in the ‘death with dignity’ debates. Beyond the
debates, empathetic sufferers who’d lost loved ones to a multitude of
52 Samira Rajabi
cancers offered condolences and prayers. For different audiences May-
nard embodied different things, for some the travesty of cancer, for oth-
ers the right to ‘play God,’ and for others still, a sobering look at their
own mortality. In her virality, given the controversy surrounding the
legality of her decision to die, Maynard had become a meme – her image,
her likeness, her words were all recycled, remixed and reshared to cre-
ate new meaning. Later that month, while buying my groceries, I saw
a familiar face staring at me from a People magazine. I walked closer
to find that Maynard, like many other memetic figures before her, had
emerged from social media and into mainstream press. A photograph
of her staring directly into the lens of the camera was captioned in big
white letters, ‘My Decision to Die.’
On 2 November 2017, a day after Maynard opted to take the pre-
scription drugs that would end her life, Liz Salmi, one of the creators
of the community tweeting under the hashtag #btsm, during a monthly
Brain Tumor Social Media (#btsm) Chat posted the following question:
‘Did anyone feel like Brittany was being exploited for the ‘death w[ith]/
dignity’ legislative cause?’ (TheLizArmy 2014). Responses to the prompt
varied but captured a certain ambivalence on the part of the community
of brain tumour patients. Notably, even while she did not mention the
content of the YouTube videos of Maynard, Salmi re-mediated them,
imbuing them with new meaning, layering the meaning they convey
with ideas of exploitation, inscribing on Maynard’s image discussions
of power, ability, and choice. In remediating Maynard’s story and lay-
ering it with new meanings using the hashtags and imagery associated
with the Brain Tumor Social Media Tweet chats, Salmi memed May-
nard making her a vehicle through which meaning was made for those
individuals whose health, ability and meaning making schema had been
undone by the trauma of a brain tumour.
There is a space between experience and the representation of experi-
ence. Popular culture, from news, television dramas and films to digital
and social media, is full of representations of illness. The people who
participate in the #btsm community on Twitter attempt to fill this space
between their experiences and the way the experience of illness is fre-
quently represented back to them on mediated platforms.
This chapter bridges disability studies and media studies together
through the lens of memetic logics to explore the disabling helplessness
of traumatized communities and the way platform affordances and
hashtags are mobilized by loosely formed digital communities to make
sense of moments of suffering. These digital communities engage with
their representations by making and remaking ways of knowing their
sick bodies or the sick bodies of their loved ones. Consequently, the
communities they organically create straddle the boundaries between
medical and social, they are both emotionally and rationally inflected,
and they are, above all, spaces for suffering bodies who go online to
 Losing Someone Like Us 53
negotiate meaning after traumatic events, to represent themselves, using
the unique affordances of digital platforms. In this chapter I trace the
way Brittany Maynard’s story, benefitting from platform affordances
and memetic logics, proliferated, spread, was mediated and shared in
the Brain Tumor Social Media Community on Twitter. In so doing, I
look at how Maynard’s story, and digital media more broadly, allows for
the mediation and re-mediation of content around trauma and disability
in ways that are productive in reconstituting broken meaning making
schema or in remaking new schema with which to guide one’s life – and
those new mediations might resist normative frameworks of how sick
bodies are allowed to exist.

Bridging the Literature: From Trauma and

Media to Disability Studies
Trauma dismantles meaning making schema (Janoff-Bulman 1989, 121).
Meaning making schema are those schemas that govern day to day
experience and inform how individuals inhabit their social worlds
(Janoff-Bulman 1989, 115). A variety of assumptions make up meaning
making schema; these assumptions that are stored in memory and often
go unquestioned are cultural, social and political. Traumatic experiences
break these schema and function to dislodge assumptions of the way the
world works. In this way, traumas demean the status quo individuals
and groups build in their lives and force those who suffer from them
to make new meanings or remake their previous meanings in ways that
allow their new embodied experiences to make sense in the story of their
lives. The rapid proliferation of digital media, especially social media,
has opened spaces through which to negotiate meaning, particularly
for sufferers of trauma who may feel misrepresented, erased or disen-
franchised in mainstream popular culture and in legacy media formats.
Meaning making in spaces like this offers crucial coping mechanisms
for traumatized bodies enabling them to make an ‘intervention’ in their
distress and place that distress in a framework that enables them to live
a positive life, even as that life co-exists with the turmoil of their trauma
(Lee 2008, 782).
In digital media, on social media sites like Twitter, hashtags are used
to bridge connections across disparate groups. As users inhabit certain
digital, social spaces for long enough they become familiar with hashtags
that loosely form communities of interest. This chapter examines three
hashtags on Twitter that unify communities that are brought together
based on a shared experience of suffering – those suffering with or car-
ing for patients who have brain tumours. The hashtags #btsm (Brain
Tumor Social Media), #braintumorthursday and #BrittanyMaynard
bring disparate people together based on a shared experience. I argue
in this chapter that these hashtags, and the accordant media artefacts
54 Samira Rajabi
they circulate, function based on memetic logics, or what Milner (2016)
identifies as the qualities of reappropriation, multimodality, resonance,
spread and collectivism. These logics, as the processes that allow digi-
tal media to memetically spread into culture, offer a playfulness which
enables meaning production for traumatized subjects. Milner (2016)
alongside Willett, Robinson, and Marsh (2009) notes that play, just like
memetics, doesn’t indicate frivolity or light-heartedness. Rather, playful-
ness indicates the ability to engage creativity to collectively intertwine
ideas, concepts, media artefacts and use them in the negotiation of and
performance of identity and creation of a hybridized culture (Milner
2016, 2; Willett, Robinson, and Marsh 2009, 64). Digital platform af-
fordances enable often Othered bodies to engage representations of their
bodies differently. In this way, the hashtags and the narratives of suffer-
ing people flag using the hashtags become inextricably linked, producing
new articulations of what it is to be sick, and what it is to be sick online.
This analysis explores first how Brittany Maynard engaged in digital
advocacy for the right to die using digital affordances, followed by an
analysis as to how those impacted by brain tumours, specifically Twitter
users with brain tumours or who had close family or friends with brain
tumours, mediated their own suffering through her story using the
hashtag #BrittanyMaynard. Maynard was a 29-year-old woman with
a glioblastoma, a cancerous, and often lethal, brain tumour. Her influ-
ence online came from her partnership with Compassion & Choices,
where she advocated for medical aid in dying, and opted to exercise
her right as a patient to ‘die with dignity’ as her condition worsened
(CompassionChoices 2014). Maynard’s case was heavily mediated, and
her name and advocacy thrust both medical aid in dying debates and
brain tumours into the national spotlight in the United States. Thus,
in 2014, the hashtags #btsm and #braintumorthursday overlapped with
the story of Maynard and many members of these communities opted to
mediate their own traumas through the narrative laid out via YouTube,
social media and in popular press about Maynard’s end of life decision.1
This case, my access to this case, and the way it was mediated offer
scholars of disability, trauma and media an opportunity to discover how
individuals contending with their own mortality engage their own bod-
ies in digital space, particularly as they relate to broader discussions in
mainstream media about what it means to be sick, and what kind of sick
bodies should live and which should die.
To understand how these hashtags function using memetic logics to
facilitate meaning making online, I trace a variety of literature that re-
lates to trauma and disability studies and bring it in conversation with
literature around the playful, as-if environments afforded to people
through the capabilities of technological platforms. Trauma, here, is
taken to be disabling – an assertion I explore more fully in the next
section. Given this assertion, I examine how the language of feminist
 Losing Someone Like Us 55
disability studies is useful for analysing illness and trauma, specifically
when looking at social media sites of meaning making. In looking at
testimony of trauma in social media, these theories allow us to ask if
users are subverting or normalizing notions of disability, victimization
and sickness with the meanings they mediate, re-mediate and proliferate
through these hashtags.
Janoff-Bulman (1989) notes that traumatic experiences are, in part,
those life events that lead to ‘anxiety, confusion, helplessness, and depres-
sion’ (113). In addition, Herman (1997) notes that traumatic experiences
violate the social contract and create psychological distress (1, 7). Termi-
nal illnesses betray the contract bodies make with their social worlds in
that they bring forward the visceral and confronting reality of death in
ways that Western society seldom prepares people for. Traumatized peo-
ple are made to suffer because of what they have experienced, a suffering
that forces a feeling of disconnection from their own bodies, social envi-
ronments and the present (Herman 1997, 35). Trauma caused by illness
interrupts the body’s ‘insistence on meaning’ that is experienced not just
through medical facts but the way the body socially and physically expe-
riences and feels illness (Kirmayer 1992, 325). Illness is both medically
and socially traumatic because of the way it challenges the frameworks
people have used to guide their body through life. The assumptions and
frameworks that tend to guide life before trauma dismantles it generally
have to do with avoidance of the ‘tragedy of life’; in other words people
live their lives according to assumptions that death and dying are far
away from them and that mortality is a primarily medical, not social,
experience (Gawande 2014, 7).
Traumatic experience, particularly illness, breaks our engagement
with our world. ‘In sickness we confront the inchoate. Bodily suffering
distorts the landscape of thought, rendering our previous constructions
incoherent and incomplete’ (Kirmayer 1992, 329). Trauma and illness
function socially like disability, as trauma forces people’s lives into dis-
courses that ‘contain and fix dis/abled bodies’ (Chen cited in McRuer
2018, 22). In scholarship, trauma must be taken as disabling in the
ways it shatters constructed notions of normal. Traumatized subjects,
as disabled subjects, see through problematic constructions of ‘normal’
because of their social location. These subjects are forced to make mean-
ing around their embodied experience in order to navigate their phys-
ical body in the world, to carve out space for their bodies to exist in
a society that largely erases and hides disabled and sick bodies. These
meanings may be subversive, speaking back to power structures, or they
may inadvertently reinsert the trauma survivors into systems of power
(Edkins 2003, 9). Indeed, prominent medical discourses of recovery and
therapy attempt to fix trauma sufferers in ways that force them back
into normative frameworks (Edkins 2003, 9). Rothe (2011) articulates
the way popular trauma culture has become a media spectacle, erases
56 Samira Rajabi
the socio-political context and reduces them to a body in pain (5). Sub-
jects online, however, are able to narrate their suffering in ways that en-
ables them to remember and experience collectively, thus repositioning
themselves and their suffering within the larger socio-political context
(Alexander 2004, 8; Rothe 2011, 158)
Disability studies need to be applied to trauma for several reasons.
Trauma, at its core, causes the suffering subject to become disabled,
both physically and socially. Though these disabilities may be invisi-
ble on the body, not all sickness can be seen, the ramifications of them
cause the suffering body to be dislodged from social worlds. To under-
stand the way digital sufferers negotiate their embodied suffering in a
disembodied online space, trauma and its accordant meaning making
need to be separated from medical discourses and seen as multiple, com-
plex and situated in what McRuer (2018) calls a ‘global crip imagina-
tion’ (24). Refusing medicalization of trauma means that trauma needs
to be understood from the level of social signification. This gesture,
adapted from Linton’s disability studies, reframes trauma as ‘a designa-
tion having primarily social and political significance’ (Linton 1998, 2).
Edkins (2003) argues that ‘in contemporary culture victimhood offers
sympathy and pity in return for the surrender of any political voice’ (9).
Those who go online to negotiate trauma, however, use the affordances
of digital platforms to recuperate that voice through practices of produc-
ing meaning. These gestures are micro-political tactics that are invested
in situating the disabled body as ‘not a discrete object but rather a set of
social relations’ (Davis 1995, 11).
Trauma is always embodied, illness is always embodied and disability
is always embodied. Even when the location of suffering is not isolated
to the physical body, suffering is lived, felt and experienced through the
body. In an embodied politics of trauma, trauma must be considered dis-
abling. I concretely situate this research within feminist disability studies
because of its investment in resisting narratives of Othered bodies, such
as disabled or female bodies, as lacking. Pain and suffering, because
of their visceral nature, are unshareable, destroying language as they
destroy meaning making schema (Scarry 1985, 5). Feminist disability
studies divorce disability from its social construction as a ‘natural state
of corporeal inferiority’ and instead identify and contest the way dis-
courses of disability socially mark certain bodies, ‘legitimating an un-
equal distribution of resources, status, and power’ (Garland-Thomson
2002, 5). Moreover, an attention to embodied suffering represented by
agentic users in media allows research to ‘move from mere discursive in-
tervention to deep interrogation of the material constraints that give rise
to the oppressive binaries of self/other, normal/abnormal, able/disabled,
us/they,’ to which I would add sick/well and traumatized/untraumatized
(Erevelles 2011, 119).
Feminist media studies offer a bridge between feminist disability
studies and meaning making practices through digital media as a
 Losing Someone Like Us 57
response to trauma. Feminist media studies recognize the substantial
role of mediation in the way ‘relations of power are made and re-made’
(McRobbie 2004, 262). Durham (2011) argues that ‘power differentials
translate to an inability to make oneself heard’ (54). These power differ-
entials are mediated, digital media platforms that afford users an oppor-
tunity to play with the constructedness of socially constituted identities
in ways that produce new meanings, build on existing meanings and
possibly transgress boundaries of what it means to materially live in a
disabled body. The playful, as-if space of the digital world lets people
imagine new discursive possibilities for their offline, material existence.
Social networks, such as Twitter, are used ‘as a way of performing and
perhaps playing with’ identity (Willett, Robinson, and Marsh 2009, 64).
The space produced in digital space is a third space, between purely
online space and offline space, one in which ‘the meaning of cultural
objects is negotiated and in which dominant discourses can be contested’
(Willett, Robinson, and Marsh 2009, 64). Much like Bhabha’s (1994)
third space this in-between space manifested in online engagement
with social media is a space where new ‘strategies of self-hood’ emerge,
overlap with, and displace previous ways of knowing and domains of
cultural difference (2).
McRuer (2010) urges disability studies to be capacious in analysis of
disability, such that disability studies would be ‘an epistemological field
that makes it possible to know about or intervene in any political or
cultural issue’ (164). Exploring illness narratives online as trauma and
bridging the language of trauma studies, disability studies, feminism
and media studies allow for an analysis that questions the categories
of ability and disability. In so doing this scholarship accounts for what
McRuer (2010), borrowing from Puar, terms the ‘the uneven biopolitical
incorporation’ of bodies, targeting some for life and others for death
(171). In taking up McRuer’s call that disability studies recognize the
relationship between the disabled subject, their survival and the state en-
ables this work to ask questions about ‘the risks that always attend our
most urgent projects’ and to recognize that the affirmative identities ex-
pressed in digital communities, even while generative, in part reinforce
state systems of control. To attend to these questions, I turn to Balkin
(2004), who notes that in looking at digital speech, such as testimo-
nies in social media, it is important to ‘focus on salience’ and recognize
what about the human condition technology foregrounds, emphasizes or
problematizes (2–3). For traumatized bodies, social media offer a way to
re-enter society through the creation of meaning, even as that meaning
might be situated in systems of domination.
Social media offer a paradigm shift in the way meaning has been me-
diated, re-mediated, proliferated and changed over time. The bound-
ary between ‘the original and a copy’ has been blurred (Piekot 2012,
192). Digital mediations in social media tend to build upon one another;
hashtags start with one user and proliferate, the intended meaning
58 Samira Rajabi
shifting with each user who uses the hashtag. This form of spreading and
replication follows a mimetic logic of ‘polyvocal public participation’
(Milner 2016, 111). According to Milner (2016) memetic media function
based on several logics such as resonance, spread and collectivism that
go beyond just the use of a hashtag to categorize and share informa-
tion. I argue, hashtags become memetic when users reappropriate them
to weave their personal narrative into the larger conversation, offering
meanings that form ‘aggregate texts, collectively created, circulated, and
transformed by countless cultural participants’ (Milner 2016, 2). Milner
(2016) is also careful to note that memetics are not just about the memes
themselves, but the grammar of the social processes that enable them to
proliferate. Here, hashtags around brain tumours, and the testimonies
they flag, are the media artefacts that proliferate, making meanings that,
in the data set, enable transformative reappropriation of meaning, just
by entering possibly resistive narratives into cultural circulation with
dominant discourses. Though not all the possible uses of hashtags foster
expressions of resistive discourse that undoes marginalizing ways of
knowing, memetic logics offer that possibility to users – a possibility
that Twitter users in the #btsm community latch onto.
Like the memetic, originally derived from Dawkins evolutionary
biology that used the term meme to capture the ‘natural human spread-
ing, replication, and modification of ideas and culture’ (Chen 2012, 7),
public participation, like that surveyed in this chapter, follows a logic of
‘reappropriation, collectivism, and spread’ (Milner 2016, 111). I argue
here that much of what is shared online follows this memetic logic, in
which the meaning of even a hashtag is based on its previous instantia-
tions. Knobel and Lankshear (2007) challenge us to recognize memes as
including such things as ‘popular tunes, catchphrases, clothing fashions,
architectural styles, ways of doing things, icons, jingles, and the like’
in the way they reorient audiences and producers of mediated content
towards cultural information (199). Much of what is shared in social
media is replicated and transformed as it is shared because of the unique
location, sensibilities, attitudes, identities and networks of the sharers.
Just as discourse is polyphonic, the production of discourse in digital
space is ‘created by a multiplicity of unfinished texts overlapping’ (Mil-
ner 2016, 111). These texts are more than hashtags that serve to organize
and connect, rather the layered meanings produced in the proliferation
and re-vamping of ideas that create hybrid texts that are uniquely under-
stood by particular communities. Returning to Milner (2016), he notes:
‘media texts become memetic when they connect with enough partici-
pants to inspire iteration after iteration from a fixed premise’ (29). As
such, hashtags can become memetic, but do not necessarily achieve this
status. With each tweet that accompanies a hashtag the meaning of that
hashtag morphs, shifts and goes through a process of becoming what it
is. Like internet memes, hashtags and their accompanying content are
 Losing Someone Like Us 59
‘dislocated’ in time and space, and are defined based on who is seeing it,
in the moment in which it is seen.
When considering trauma, the dislocation of the media artefact be-
comes even more important. Trauma itself is a trans-temporal, trans-
spatial experience that divests the suffering subject from time and space
as they had come to understand it, partitioning memory from chronol-
ogy (Bennett 2005; Cvetkovich 2003; Edkins 2003). To remember and
articulate trauma is never to articulate it as it actually happened, rather
it is to ‘seize hold of a memory as it flashes up at a moment of dan-
ger’ (Fassin and Rechtman 2009, 16). Given the visceral way trauma
dislocates itself, meaning making through simple affordances, such as
hashtags online, offers the trauma sufferer a space through which to
negotiate this disjuncture between social worlds, the legibility of their
new body and the way they materially inhabit space. Jackson (1983)
tells us that ‘Culture has thus served as a token to demarcate, sepa-
rate, exclude and deny’ (328), determining that which is natural and
that which is allowed to exist. Digital sufferers use digital meaning mak-
ing to redraw these boundaries that subjugate their bodies, diminishing
the purported organic order of what is natural and normal and carving
out space through digital engagement. The following section explores
the way #btsm, #braintumorthursday and #BrittanyMaynard attempt
to mediate suffering and make meaning, exploring what normative and
resistive gestures each hashtag makes and the subsequent material effects
of mediating illness, disability and trauma online.

Meme-ing and Re-mediating for Tactical

Meaning Making

Methods
This data set is comprised of YouTube videos and tweets collected from
2014 to 2018 of the hashtags #btsm (Brain Tumor Social Media), #brain-
tumorthursday and #BrittanyMaynard. These tweets were collected
using targeted searches via Twitter’s integrated search function. This
purposive sample looked for tweets that were posted by either patients or
caretakers in the brain tumour community, particularly as they related
to Brittany Maynard. Approximately six YouTube videos were analysed,
and 110 tweets were collected from all of the hashtags combined and
they were examined in depth using Rose’s (2011) discourse analysis that
focuses on the site of the image, site of production and site of reception.
Many of these tweets included links to images, blog posts and articles
in which case those items were included as a part of the data set as well.
In addition, to add an audience component to the study, I use mixed
methods, rounding out the textual analysis using a group interview. I
interviewed three active Twitter users in the #btsm community, Charlie
60 Samira Rajabi
Blotner and Liz Salmi, the creators of the #btsm and its monthly tweet
chats, as well as Adam Hayden, a brain tumour patient and activist for
brain tumour awareness and healthcare legislation. 2 I interviewed all
three people at the same time via Skype to determine if the findings of
the discourse analysis were consistent with their intent in producing the
digital media artefacts that were studied for this chapter. The purpose of
approaching this research with both a discourse analysis and interviews
is to determine how intent in posting is captured in the outcome of their
posts – the subsequent conversations, community and thus the discourse
they contribute to. The interview helps the reader determine why these
participants opted to negotiate their suffering in and through the #btsm
Tweet chats, as well as why and how they engaged the very publicly me-
diated narrative of Brittany Maynard.

Making Space for Suffering

It is meaning that invests one’s life with purpose (Lee 2008, 779). Trau-
matic diagnoses of tumours, cancers, or the like force an ‘existential
plight’ through confronting individuals and their families with the ‘inev-
itability of death’ (Lee 2008, 780). This existential plight is one in which
meanings that have guided routines of everyday life no longer serve their
function in the face of death. The people faced with this plight must make
new meanings to survive. Though meaning is ‘vague and boundless’ in
nature, it is useful in allowing bodies with even the most profound suf-
fering to strive towards goals, imbuing their lives with purpose and of-
fering a new schema and ordering of life’s meanings through which they
can build routines and live a life that provides satisfaction, happiness
and productivity (Emmons 2005, 734). What this process looks like in
practice is highly dependent on context but, as the following pages will
demonstrate, many patients and caregivers, disabled by illness and trau-
matized by their diagnoses, use digital affordances to make meaning in
social media spaces. Particularly poignant are those who shared ‘tumor
types’ with Maynard, who spoke directly to her, collapsing their expe-
rience into hers while expressing grief, fear and sadness, or still others
contemplating a similar decision between treatment and death.

Brittany Maynard’s Story, as Told by Digital

and Social Media
I started this chapter with the viscerally confronting experience I had,
as a brain tumour sufferer, watching a woman not much different from
me, grappling with a tumour that would have dire consequences for her
body. The video, which details Maynard’s plans as to where and how
she would die, who would be with her, and who she was and what the
brain tumour had done to change her world, serves as a simultaneous
 Losing Someone Like Us 61
expression of agency for a disabled body while also working as an ad-
vocative tool situated within a medical system that functions through
a neoliberal logic – the video was a promotional piece meant to mobi-
lize activism in favour of death with dignity laws (CompassionChoices
2014). This is clearest when the final black screen appears, and in white
lettering the video reads, ‘At present, only five US states allow terminally
ill patients the right to die with dignity. A movement is underway to
expand access, so that no American has to endure prolonged pain and
suffering’ (CompassionChoices 2014). This video has over 12 million
views (CompassionChoices 2014).
Rose (2011) positions three important sites for discourse analysis of
visual media artefacts. The site of the image, in this case, is Brittany
Maynard’s likeness, positioned within a widely contested political and
personal decision about the progression of her illness and her desire and
right to choose how to live or die. The site of production of her image
complicates the discursive work these YouTube videos do, in that the
images were produced specifically for Compassion & Choices advocacy
campaign. While the YouTube videos featuring Maynard purportedly
do the work of narrating her complicated testimony of trauma and re-
sistive navigation of her diagnosis, they fundamentally serve to produce
highly political ideas around the right to live and die – or as termed in
the videos, ‘death with dignity’ (CompassionChoices 2014). The You-
Tube portrayals of Maynard become increasingly complicated when it
comes to the site of reception, as the fluid spaces in which audiences
engaged them displayed that such emotionally charged content could
not be read without an interrogation of, and perhaps conflation of, the
self. Often, brain tumour patients, caregivers and others invested in the
debates around the right to death with dignity commented on Maynard’s
videos through an engagement with their own experiences, thus making
a meme of Maynard by inextricably tying their stories together online.
Once users had begun to engage in comments about Maynard’s choice
the image and its production became discursively fixed to their reception
on various social media platforms.
Affective mediation enables suffering bodies engaged in digital activ-
ism to do work that functions both in their favour and to their detriment.
Maynard’s unequivocal attention to dying bodies forefronts them in a
way that representations of illness rarely do while still reinforcing nor-
mative ways of understanding illness. In de-medicalizing the discourse
of trauma through testimony and seeing trauma as a social condition
in which non-normate, or in this case, dying bodies are often erased
in society, social constructions around what constitutes a valuable life
become more apparent. The meaning perpetuated in this video is one
that advocates for a cure and an overcoming of one’s circumstances.
Maynard’s narrative in the video described as well as in many others
produced by mourners and the organization Compassion & Choices
62 Samira Rajabi
after her death conveys that to live in any valuable sense, a body must
be healthy. I am not arguing here in favour or in opposition to end of
life rights. In parallel I am not advocating a person should choose to
live in pain either. Instead, what I am arguing is that social construc-
tions of representation and perception that place sick bodies in catego-
ries of diseased and defective marginalize those bodies for them to be
cured. While patients struggling with debilitating tumours may indeed
seek treatment and cures, for many there is no cure. For those patients,
the received narratives that admonish their suffering bodies who cannot
appropriately ‘fight’ against their disease, function to erase trauma suf-
ferers who simply want to accept the circumstances of their illness, and
thus, their disability. Further, the data set highlighted that many within
the community agitate for attention to palliative care to dismantle this
notion that anything aside from a cure constitutes a personal failure.
Siebers (2001) argues that society privileges ‘performativity over corpo-
reality, favouring pleasure to pain, and describing social success in terms
of intellectual achievement, bodily adaptability, and active political par-
ticipation’ (740). Following Siebers’ (2001) lead, I argue that mediations
of trauma, while requiring advances in medicine for practical, material
reasons, also require advances in social justice, as well as representation,
perception and identity politics.
Turning to the data, it was apparent that there was a deep ambiva-
lence that ran through the #btsm community when it came to the sub-
ject of Maynard’s death. When asked by Salmi, the leader of the group,
if the community felt Maynard was exploited, others responded trying
to ascertain the felt reality of navigating their own journeys through
her narrative. Charlie Blotner, co-creator of the group, in response to
Salmi’s question tweeted, ‘@TheLizArmy @BTSMchat How does that
make you feel? Or still undecided on the feels? #btsm’ (CBlotner_ 2014).
Salmi, after noting that she had the same original diagnosis as Maynard,
replied that she was ‘still undecided on the feels. #getsmeinthefeels’
(TheLizArmy 2014). Other Tweeters noted their ambivalence differently,
adding a layer of complication to the narrative that forced the conversa-
tion into a discussion of health coverage: ‘@TheLizArmy I understand
Brittany’s decision, not sure I agree. Financially smart, if you don’t have
insurance. #LifeIsAlwaysBetter #BTSM’ (Barr 2015).
Many tweets, featured in the ‘tweet chat’ that asked about Maynard,
articulated the uncertainty inherent in a decision to die from the per-
spectives of medical certainty in diagnosis, of religion and ability to go
to Heaven, and ethical perspectives that entered meta conversations of
the ethics of discussing and judging Maynard’s choice. In these tweets
Maynard is no longer the subject in question; she is peripheral to both
brain tumours and larger discussions of what it means to be sick in the
current cultural, social, medical moment where mediation of illness and
experience of illness often collapse into each other. Though much of
 Losing Someone Like Us 63
the tweets do not focus on Maynard herself, throughout this chapter
I will demonstrate that her narrative is essential to the memetic re-
mediation and meaning making in that it is her collective resonance that
enables these communities to connect. In other words, when Maynard
became a flashpoint for the #btsm community, her story was layered
into the other stories that were shared. Thus, as each user went on to
share their own stories in the tweets, Maynard’s story was blurred, cov-
ered over, reframed, even erased from view at times, through its entry
into the multiplicity of meanings the memetic logics enable. Maynard’s
story exists alongside and within the stories that came after it, its reso-
nance built into the intertextual weaving of collectively created content
(Milner 2016, 26).
The tweets in question are a form of re-mediation of the Maynard’s
narrative. The original media artefact that caused Maynard’s story to
spread was a video produced by Compassion & Choices, an organiza-
tion that advocates for end of life rights. These tweets, while not directly
referencing that media artefact specifically, function to play with the
original messaging and meaning of the video and thus of Maynard’s
story. These tweets do not simply reproduce Maynard’s narrative; they
reproduce and shift it, distancing Maynard and bringing forth a deep
seeded ambivalence about death, cancer and the constant pressures to
conform to various received narratives of illness. In adding their per-
spectives these Twitter users produce new meaning around Maynard’s
narration of her brain tumour. This works in part because these users
are located in a particular media space at a particular media time. Just as
trauma dislocates the suffering body from its place and time, so too do
these tweets dislocate Maynard’s narrative, complicating it, nuancing it,
adding to its circulation and shifting the discourse around it.
Aside from the tweets that were part of the tweet chat held by #btsm on
the evening of Maynard’s death, the larger data set found that the brain
tumour community online shared several posts during this time that
vacillated from patient testimonies, caregiver testimonies, expressions
of compassion towards all those with brain tumours, as well as frank
medical discussions with experts. The range of breadth of these tweets
highlights that while users come together to discuss brain tumours, their
discussions are varied, nuanced and constantly evolving as the hashtags
are replicated and proliferated. Milner (2016), for example, argues that
hashtags, even while they don’t make memes, are memetic in the way
logics such as resonance and reappropriation enable them to be used
by a variety of people for a variety of end goals, while still remaining a
cultural touchstone for the sub-culture in question (1). From posts that
share blogs about their family members’ illnesses to others that argue
for and against various treatment options, the brain tumour community
online is diverse and varied, yet it comes together without a sense that
there is a right answer. The hashtags #btsm, #braintumorthursday and
64 Samira Rajabi
even #BrittanyMaynard circulate in ways that give users licence to use
those hashtags to ping a community while revealing or making meaning
about something about themselves. For example, when one user uses
#braintumorthursday to share a blog post about her mom’s ‘fight’ with
cancer and nuance it from Brittany Maynard’s journey, she re-mediates
Brittany’s story through her own lens. In so doing she makes it so the
hashtags #braintumorthursday and #BrittanyMaynard stand for not just
Maynard, but enable them to serve her narratives around what kind of
suffering and engagement with cancer should be understandable in this
digital community space (Rachel 2014). This reappropriation is still res-
onant to other users of the hashtags in question because it re-mediates
Maynard’s story and uses it as a vessel through which to make @Kick-
BrainTumors mothers’ suffering legible.
Users show care with each other in the ways they offer support and
there is an overarching veneer of positivity in the posts, such as this
one that reads, ‘Differentiation #BrainTumorThursday,’ and is accom-
panied by a meme that reads, ‘We are all different and that’s beauti-
ful’ over multi-coloured finger prints (Now 2017). Another post, for
example, shares a hand-drawn image of a dragon wearing a grey rib-
bon for brain cancer awareness and breathing fire onto ‘brain cancer’
in order to end it (Fdn 2017). These tweets highlight the way digi-
tal space is a third space where users attempt to make room for the
meaning, narratives and advocacy that they need to make sense of their
traumatic experience. Building from Bhabha’s (1994) theory of third
spaces, media scholars Hoover and Echchaibi (2012) examine what
they term ‘digital third space,’ paying attention to how this space al-
lows for rapid, simple and easy-to-access platforms through which to
displace old ideas with new mediations. These re-mediations can be
as simple as re- captioning an image or sharing it to a different net-
work. In this space, people have access to a host of political and social
communication across physical boundaries. The playfulness of the dig-
ital space encourages negotiative mediation that transcends time and
is ever changeable, never fixed. The liminality of digital spaces and
platforms allows for playful social interactions and negotiations of dis-
courses and identities (Hoover and Echchaibi 2012; Willett, Robinson,
and Marsh 2009). Important and resistive meanings made for and by
contingent bodies are created and perpetuated because of the playful-
ness of the space. Brittany Maynard is just one flashpoint in the conver-
sations that brain tumour sufferers engage in on digital platforms. For
many, every day is an opportunity for mundane resistance and to carve
out space for unruly, dysfunctional bodies with brain tumours to exist.
@Hope4GreyMatter, for example, celebrated International Women’s
Day and #BrainTumorThursday with a cartoon image that depicted
many women of various shapes, sizes, races and abilities (as evidenced
by the woman on the end flexing her muscles from a wheelchair) and
 Losing Someone Like Us 65
read, ‘We are all Wonder Women!’ (Hope4GreyMatter(s) 2018). By
tweeting this post, this user carves out space for Othered bodies to
exist and enters into the discourse around illness, a new meaning, one
that escapes the strict confines of sick and well and allows a range of
bodies and abilities to exist and thrive.

Beyond Maynard: One Story as a Way to See the Possibility

for Resistive Action from a Community
During the time after Maynard’s death digital users from bloggers to
brain tumour sufferers weighed in on the politics and ethics of the death
with dignity debate. While those posts are important, this chapter looks
more towards meaning making as a form of dealing with a trauma.
When I interviewed Salmi, Blotner and Hayden, I was struck by the
rather matter-of-fact way they each discussed their diagnoses. I attribute
this move to the personalized but community-based meanings they have
made around their various diagnoses. While they are each in different
moments of their brain tumour journeys, they all work towards patient
quality of life and advocacy rights, arguably using advocacy for those
suffering from traumas like theirs as a way through their disabilities.
In other words, they made a new meaning making schema to build the
routines and representations of their lives around, centring on patient
advocacy and the needs of subjects with disabilities.
Hayden, for example, discusses how natural it felt to him to be post-
ing his life on social media and he articulated that his illness was just
like any other part of his life, but he was looking for a digital space
that fit what he was experiencing, not the image of cancer that is often
perpetuated (Blotner, Salmi, and Hayworth 2018). Blotner also came
to the community on accident. Blotner described posting questions as
“second nature” to him, and Salmi and Blotner found one another when
she responded to a nervous presurgical tweet where Blotner wanted to
know the difference between a PET scan and an MRI (Blotner, Salmi,
and Hayworth 2018). Salmi, Hayden and Blotner moderate the monthly
#BTSM chats and each of them spoke about the monthly chats as a space
through which people can democratically share their patient experiences.
Hayden even refers to a philosopher working on the phenomenology of
illness to make his point; he says,

her thesis is that in western medicine especially, we tend toward

reductionism and I think that is how it is in a lot of the sciences…
What Carel says is that a lot of the problem with illness is that it
is framed through a reductionism. That we put a medical lens on
everything and takes away the experience of the illness, which is the
phenomenology of illness.
(Blotner, Salmi, and Hayworth 2018)
66 Samira Rajabi
Hayden urges medicine to have a patient-centred approach, with pa-
tient voices being a central component of understanding of illness. As
the conversation continued and we discussed the trauma of illness and
medical erasures of experience, Salmi recalled one Twitter user suggest-
ing the #btsm community read a book about ‘post-traumatic growth’
and she wondered to herself if she was experiencing anything akin to
post-traumatic stress disorder (PTSD), but noted she instead felt she was
experiencing acceptance and curiosity more than anything. She also
noted that this curiosity is what enabled her to face outward towards
her community.
While Hayden sees his tumour as separate from the case of Maynard,
specifically because he was pre-diagnosis at the time, Salmi and Blotner
discuss what was striking about Maynard and the mediations about her.
Beyond all three of the interviewees noting that they support people’s
right to choose whether they live or die, particularly in this case because
of the severity of death a brain tumour can cause, they discussed their re-
actions in the context of the community. In the following excerpt, Blot-
ner talks about how Maynard’s foresight about the difficulty of death
caused by a glioblastoma catalyzed public support for her cause but also
impacted the digital community.

Blotner: I was surprised to see that she had any foresight because
I do not think a lot of GBM patients have foresight or realize how
shitty of a death it can be with the seizures and all of that. I was
surprised how very articulately she was able to discuss all of those
things in the videos that were created. I think that really strength-
ened the public support around her because she could talk about
how shitty of a death it was going to be. I had never really seen or
heard anyone talk about dying from GBM in that detail before, like
they were really prepared for it. That made me think of who is on
her care team that prepped her for that in terms of “Hey, this is what
it is going to be like.”
(Blotner, Salmi, and Hayworth 2018)

Blotner goes on to discuss the way Maynard’s case gave social workers
and brain tumour patients a reference point through which to discuss
issues such as palliative care, thus shifting representation of brain
tumours from a normative notion of curing to a more realistic evaluation
of possibilities given a difficult diagnosis.
Salmi also engaged with Maynard’s story deeply on a personal level,
both online and in her day to day life as a brain tumour patient. At the
time Salmi worked as an advocate for ‘advanced caring, palliative care
and on end-of-life care’ (Blotner, Salmi, and Hayworth 2018). She said,
‘It was with me every single day, as patients, we have our professional life
and then we have our health care lives and maybe an online life version
 Losing Someone Like Us 67
of that’ (Blotner, Salmi, and Hayworth 2018). She notes however that in
her job, she had to shed her patient title, she wasn’t ‘out in that commu-
nity,’ so she experienced that people would talk very freely around her.
Salmi’s engagement with her traumatic experience highlights why it was
so important for her to claim digital space through which to articulate
meaning around her illness while having to pass as well in her offline
community. While she seemed grateful that she got people’s unvarnished
opinions on Maynard’s choice in the spaces where she performed well-
ness, she expressed that she needed the online space to craft a response
to the messages she was receiving offline. Salmi says,

…the part of it that irked me a bit and why I decided to blog about
it was because my friends who knew I had a brain tumor would ask
me “What do you think?” I think a lot of people were like, “Brain
cancer! The worst of them all.” And it is, it is not good. As some-
body who responds to things with a lot of resilience maybe, I was
like: I know many people that have brain cancer who do amazing
things and are involved in a lot of stuff and have so much life to live
before they eventually die.
(Blotner, Salmi, and Hayworth 2018)

Salmi found it problematic that while Maynard’s narrative was at the

heart of the community’s discussions around life, death, palliative care
and living with brain tumours, Maynard herself was not present for
these discussions beyond her initial YouTube videos that were produced
through Compassion & Choices. Salmi goes on:

I never once heard anything about Brittany hanging out or befriend-

ing some of her brain tumor buddies and finding out about what
that experience is like. Maybe she met other people with brain can-
cers, but as somebody who is part of BTSM community and the
young adult stupid cancer community, she was 29 when she was di-
agnosed, and her initial diagnosis was a grade 2 astrocytoma. I was
the same the same stage and same diagnosis. Ten months later, it
[her tumor] grew and became glioblastoma. Six months later, mine
grew back and I had to have another surgery, but the pathology did
not change. I identified so much with her story…There were just so
many similarities. What if she’d met other people and got to see life
after glioblastoma? I believe that she eventually decided to take these
life-ending medications before things got too wild and crazy but all
of us are dealing with deficiencies one way or the other depending
on where our tumors are located. I think it is important for people
to meet others like them and make that part of the decision-making
process.
(Blotner, Salmi, and Hayworth 2018)
68 Samira Rajabi
This exchange highlights the importance of the community in nuanc-
ing the way patients see themselves and their diagnosis. Throughout my
conversation with Blotner, Salmi and Hayworth they each identified the
way the community allowed them to be in a space of shared experience,
making the experience less something that needed to be fixed and in-
stead recognizing it as another facet to life. Hayworth articulated his
engagement with the #BTSM community, for example, as ‘lifting up the
experience’ of suffering from a brain tumour from a phenomenologi-
cal perspective. He noted that this digital space was one of ‘empathetic
witnessing,’ referring to his engagement with the work of American
psychiatrist and professor of medical anthropology Arthur Kleinman,
and the notion that doctors ought to sit with patients to make meaning
from the chaos (Blotner, Salmi, and Hayworth 2018). Rather than just
doctors and patients going through illness together, all three #BTSM
participants identified their online engagement as a space through which
caregivers, patients and medical professionals could navigate the chasm
of senselessness thrust upon them by their newfound change in abilities.
Trauma dismantles the social contract that bodies have with the world;
for Salmi, Blotner and Hayworth this space was remade through their
engagement with one another online and with the broader community of
suffering subjects. In part, this remaking also remakes Maynard’s story
for the community as well. Maynard becomes a symbol for this commu-
nity; the #btsm community can evoke her as a symbol to signify their
own experiences and the legibility granted to them through engagement
with her decision to die.
As Maynard’s story is re-tweeted it is re-mediated. In the remaking of
Maynard’s story with every sharing of it, digital users are inflecting her
story with their own and in so doing changing what she stands for. The
same happens each time social media users impacted by brain tumours
inflect the community hashtags #braintumorthursday and #btsm with
narratives of their own suffering bodies. Each re-mediation, through
memetic logics of spread, replication, resonance and collectivism, shifts
the meaning of what Maynard’s original narrative of her situation stands
for (Milner 2016), just as each tweet that uses #btsm or #braintumor-
thursday pushes the boundaries of who is a part of the collectivity that
this hashtag and its accordant meaning making strategies are resonant
with. Though we have YouTube videos of Maynard speaking, it is hard
to know what she was intending, aside from the very overt advocacy
for death with dignity laws. The re-mediations of her, however, stake a
political claim in the way they allow or disallow certain attitudes about
bodies to exist. For example, one tweet that was shared on Twitter
linked to a blog post titled ‘Dear Brittany: Why we don’t have to be so
afraid of dying and suffering that we choose suicide’ (Voskamp 2014).
The blog, situated in a self-described Christian sensibility, disparages
Maynard’s decision. Regardless of the problematic nature of this post,
 Losing Someone Like Us 69
it is still evidence of the multitude of ways hashtags are used memeti-
cally to enable foreclosures and possibilities around discursive mean-
ing for disabled bodies. Others re-mediated Maynard’s story in order
to make meaning around their own illness, like one user whose tweet
read ‘I want to die like Brittany Maynard,’ and yet another who noted
that Maynard’s choice allowed others to ‘choose dignity’ (Jennifer 2018;
USAMedImaging 2015).
Each variation on her story, linked through hashtags and layered
into hybrid texts through memetic logics, creates a resonant, collection
of ideas that circulate and spread online – and these circulations push
discursive boundaries differently in various communities. The posts
that circulated around Maynard fulfilled Milner’s (2016) five catego-
ries of memes in that they were reappropriative, resonant, collective,
multimodal and spreadable (Milner 2016, 26). Through creating new
meanings for suffering bodies, these moments serve as micro-political
gestures in the everyday life and can be ways for marginalized, sick
bodies that are so often relegated to the outside of society and forced
into medicalized discourses, to make meaning that allows for the legi-
bility of their experiences. That meaning is often progressive, but often,
like the example from Voskamp, reinforces a culture of fixing in which
illness without cure is an unacceptable outcome. The majority of the
social media artefacts collected, regardless of the stance they take in re-
lation to Maynard, highlight the way the digital space enables a discur-
sive negotiation around the boundaries of disabled, sick bodies. Most
users, especially those in the brain tumour community, invoke Maynard
to discuss their own narrative of health as they situate their identity as
a patient or caregiver in the broader community. One #btsm commu-
nity member tweeted, ‘Brittany’s decision was hers. Everyone judging
should direct their energies 2 stopping brain cancer so no one else has
to make it. #btsm’ (Novemberdawn 2014b). She then replies to her own
tweet noting, ‘I should’ve said “stop brain tumors.” “I have an incur-
able benign brain tumor & attempted what Brittany did and failed.
#btsm”’ (Novemberdawn 2014a). Smith uses Maynard to articulate her
own suffering, in so doing she re-creates Maynard’s story in the context
of her own, forcing it to signify something bigger than the legislative
battle for choice in death, instead making Maynard’s name also stand
for a negotiation of life in a suffering body and imbuing it with her own
testimony.

Conclusions
I will never forget the feeling I got in the pit of my stomach when
I watched Brittany Maynard tell me why she was choosing to die. She
was clear, she didn’t want to die, but she wasn’t going to die the death of
what had always been represented to her as a cancer patient. I will also
70 Samira Rajabi
never forget what I did next: go online, log into Twitter and type ‘#btsm’
into the search bar. My own illness had already rattled my world and
in my head I was already painting Maynard’s story onto my own. With
every stroke of the brush of my story and Maynard’s story on the same
canvas they began to meld into each other. When I saw the results of my
search I saw that I wasn’t alone. It is in the stories that were told along-
side mine that my story became a collective one. It both belonged to me
and belonged to the #btsm community. Moreover, my story became situ-
ated in a broader discourse, one in which I railed against the diagnosis of
a brain tumour and one in which I watched others make similar political
gestures to be seen in their disabled, suffering bodies.
What is at stake in calling these tweets and other digital gestures
meaning making as a direct response to trauma? Further, do these tweets
and gestures resist the discourses of medicalized illness that relegate the
suffering body to the outskirts of social space? Though many of these
users may not articulate trauma as a reason they came together, with
the unifying factor of the community being some degree of interaction
and engagement with brain tumours, the trauma of chronic illness, can-
cer or brain tumours is always present. In this way, disability, as a way
of knowing the body and setting boundaries on the body, is also ever
present. The videos produced by Compassion & Choices about Brittany
Maynard, while attempting to perpetuate a non-normative way of look-
ing at disease, do so by enforcing notions of overcoming. In arguing
that Maynard should be able to end her life because it is no longer of
value to her, the short films enforce the notion that if a disease cannot
be overcome in a way that restores some semblance of normalcy, that
body is no longer of value. Alternatively, these videos can be seen as re-
sistive media artefacts, particularly when positioned against mainstream
medical discourse that focuses more on life than death. For Maynard,
perhaps overcoming was a process found in death. While this still fits
into a narrative of disability needing to be triumphed over, this notion
of overcoming shifts what we understand as the means through which
this is done. She overcomes in death, in deciding her fate as opposed to
letting her disabling illness decide it. In advocating for a change in the
culture of fixing that narratives of illness and disability are so frequently
steeped in, Maynard pushed the boundary of what it means to over-
come. Her name, as a memetic process through the way it was deployed
as a hashtag, further enabled a renegotiation of the ambivalent engage-
ment with life and death when faced with terminal illness.
Other tweets such as the widely shared article about a young wom-
an’s mother who had the same condition as Maynard perform a dif-
ferent type of overcoming. The tweets that shared this article were
like this example ‘My Mom Has the Same Brain Cancer Diagnosis
as Brittany Maynard, She’sFighting2Live http://shar.es/10N1H3 via @
sharethis #BrainTumorThursday’ (Rachel 2014). Tweets like this one
 Losing Someone Like Us 71
also perpetuate ideas of overcoming but ones that articulate overcoming
as defeating of a disease, vanquishing it or winning a fight against it.
Messages that position cancer sufferers in the midst of a battle compli-
cate the relationship between life and death, offering new space to recog-
nize what it is to live, what it is to live a life of value, but also positioning
the suffering body as one that requires fixing. Maynard’s story was one
of many that stood out as a flashpoint, bringing the suffering of one
woman forward, as the marker of many suffering bodies.
Ultimately these communities that diffusely form around the shared
experiences of suffering from brain tumours enable a sort of performa-
tive meaning making that is not always available to people in their of fline
worlds. Brain tumour patients and caregivers are thrust into spaces of
meaninglessness and these communities allow them spaces through
which to use hashtags to feel a sense of connection, while also being
able to be loosely connected enough to allow for the ambivalence of a
broken meaning making schema to play out. Users like Salmi, who must
perform wellness offline, while mediating illness online, find important
connections through digital affordances. What for some is overtly felt
and categorized as trauma, for others can be characterized as resilience;
thus the normative discourses around illness become slippery and open
to change. This change is made possible by agentic users placing their
important lived experiences in conversation through memetic processes
afforded to them by hashtags. This chapter has examined the way a
loosely formed, digital community responded to the cultural flashpoint
Brittany Maynard’s suffering provided, in order to begin a discussion
about what resistive media use looks like for disabled, traumatized bod-
ies. While many of the mediations of illness found online perpetuate
narratives of illness, many of them do serve to at least create the possi-
bility for new meanings. As this chapter has demonstrated, the digital
community, in putting patients in contact with one another, enables pa-
tients to decide how to position themselves, their bodies and their stories
in their broader world.

Notes
1 Brittany Maynard is not the only person to have had a terminal illness to be
mediated in digital media but her case was an interesting flashpoint for the
patient-led #BTSM (Brain Tumor Social Media) community. As a partici-
pant observer in this community I had the unique positioning to explore this
case and determine what it offers to scholars interested in examining repre-
sentations and interactions around bodies with a disability on social media.
Accordingly, the hashtags selected for this research focus on the hashtags
used by members of the #BTSM community, most notably, #BTSM, the
hashtag that organizes the group and forms the group identity.
2 All of the participants in the interview were aware that their real names
would be used in this chapter. As their advocacy is in the public sphere
and publicly available, they were not concerned with privacy in this regard.
72 Samira Rajabi
I opted to conduct the interviews at once in order that my contact in the
BTSM community, Charlie Blotner, could facilitate introductions between
me and my interlocutors. In performing the interviews at once, I was able
to build a rapport with all three interview subjects to get at the goals of the
community as they were expressed by its founding members.

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5 Inscribing Comedy in the
Breast Cancer Narrative.
Disease, Autoethnography
and Black Humour
Rachel Velody

Introduction: Personal Mess and Abject Mirth

Throughout intensive medical interventions for breast cancer between
2011 and 2016 I didn’t write about my encounter. I was, nonetheless, a per-
meable membrane, absorbing, archiving, reflecting. In this chapter, I use
autoethnography to shape a sensory performance-experience concerning
my corrupted left breast, the impacts of diagnosis and treatment, in-
cluding mastectomy and chemical treatment, together with the effects of
reconstructive surgery. This personal voyage, itself a memento mori, chal-
lenges societal rejections of ‘dis-ease,’ illness and finitude, ‘exorcising’ the
disease whilst paying homage. For illness is part of who I am.
Carolyn Ellis (2004) advocates for academics to produce intimate eth-
nographies, ‘stories with raw and naked emotion that investigate life’s
messiness, including twists of fate and chance’ (Bochner and Ellis 2016,
10). This reflexive, instinctual approach to literary exposition overlaps
with Cixous’ philosophy of feminist linguistics (Cixous et al. 1976). Her
‘ecriture feminine’ privileges ‘non-linear’ (Jacobus and Barreca 1999,
23), ‘cyclical’ (Humm 1991, 21) narrative, a location in which female
identity becomes ‘Alien’ (ibid.), permitting a process of separation from,
and rapprochement with, the self.
I filter Ellis’ expressive ‘chaos’ and Cixous’ dynamic of estrangement-
reconciliation, through an aesthetics of black comedy memoir. The
horror of diagnosis, prognosis and medical intervention is fashioned as
primal experience, and whilst the abject is sometimes expressed som-
brely, it is also crafted through absurdity, comedy and ‘gags’: via dialect,
abbreviations, acronyms, exclamations and obscenities, together with
the idiosyncratic tonality of rhythm and timbre. Academic referencing
and medical terminology is kept to a minimum, to encourage a visceral
reader experience. And, as sickness is uniquely traumatic, reflecting,
typing, speaking, shouting, laughing, crying, cursing, approving and
discarding my scribbles, seeking feedback, exemplify therapeutic acts of
experiencing-whilst-chronicling ‘abject mirth.’
I begin.
76 Rachel Velody
A Brown Envelope
Buried within the porch detritus of garden pots, walking boots, card-
board recycling, and mud:
A brown envelope.
I peel it off the floor. South West National Health Service (NHS) is
extending mammograms to women of ‘a certain age.’ A shade over 47 I
can be a beneficiary of this thrilling prize. Tempting. But I’d miss an ‘ed-
ucation learning and teaching event,’ a throng of presentations verifying
our Uni’s pole-position in Higher Education, and thereby incur a hefty X
next to my name. And yet. The left breast is behaving curiously, spilling
out over my balcony bra. I view this ill-disciplined flesh as a temporary
irritant, a continuation of my bloody menstrual her-story and anticipate,
with pleasure, the IUD coil, an intrauterine device being fitted shortly.
Snug in the womb it should eradicate a host of medical conditions I’ve
had since first I fought a tampon. Soaking bedsheets and clothing with
blood, agonizing stomach cramps, obnoxious mood swings, epilepsy,
depression, consigned to the past. ‘It’s dangerous’ mother pleads. ‘Mum,
I no longer care. It’s quality of life, not quantity.’
Oh, will that comment come back to bite me in the arse.
I forego the school ‘drill’ and nip down to Chesham’s council car park
where the NHS mammogram mobile unit is unceremoniously plonked.
There, I let them crush my breast tissue between two plates, which hurts
like hell. But:
Good decision.
A fortnight passes, another communiqué: I’ve been ‘recalled.’ Unac-
countably nervous, I ring Aunty Jan whilst scurrying through central
London to college. ‘Ninety-nine out of a hundred recalls are fine’ she
declares, a point confirmed in the letter. Another fortnight drifts by,
I saunter into Wycombe Hospital’s shiny Breast clinic to collect those
negative results on my way to work, on my own.
Bad decision.
The radiographer wants to do further mammograms ‘Now’ as my
piccies taken in the nomadic knocker truck have ‘little white specks of
calcium, can you see there on the negatives what we’re a bit concerned
about Rachel?’
First name terms, that’s suspicious.
I peer at talcum powder scattered liberally through the obscenely en-
larged breast tissue in the mammogram. Why haven’t they invented co-
lour yet? And which one are we looking at? ‘That’s calcium.’ she states.
So?
In the corridor a female nurse is chatting with a consultant, sporad-
ically turning to smile at me. Do we know each other? Lovely warm
countenance, impressive uniform, is that shade cerulean blue? An ador-
able nametag. The kind that, when bored-yet-anxious, makes you ru-
minate: ‘How do they etch the lettering? Attention to detail, I like that’.
 Inscribing Comedy in the Breast Cancer Narrative 77
I squint at the badge. ‘M.A.C. Nope can’t quite make out that second bit.
Ends with an N? Hmmmmm.
Got it. MACMILLAN!’ I lean back with a self-satisfied glow. Then
the penny drops. OH.
It’s not her name, it’s a logo. She’s a Macmillan Nurse, part of the
‘special’ cadre supporting cancer patients, a spectral portent
of death.
My respiration rapidly increases, fortunately, a delicious drug known
as ‘denial’ is on standby and ingested post-haste my b.p.m. slows. Grati-
fied I’m not about to expire on the white glossy tiling I beam triumphantly
at Macmillan, for she is nothing more than an erroneous apparition who
will shortly vanish into the ether.
The speed between the tests increases, the consultant opting for an
ultrasound. She slathers my left chest in ice cold gel and pushes a tiny
contraption back and forth across my flesh. As I turn to a block of ice,
we gaze together at a monitor where my breast appears, an animated line
drawing across a black screen.
‘Could you take a seat?’
The 20-minute ‘results collection’ morphs into an hour, as the consul-
tant decodes the X-rated cartoon. I focus on the important stuff, making
it to ‘Pret’ for a coffee and a buttery croissant before arriving late to
work, I’m starving.
‘Rachel.’ First name terms again, ominous. Oh God, it’s M. (Macmil-
lan), smiling saccharine-sweet: ‘We’re going to do an aspiration. That
way we can get a biopsy and see things that the mammogram and the
ultrasound can’t necessarily find.’ Find? Find what? I have a train to
catch, I’m going to be exceedingly late. I’m hungry. Yet, illustrating trust
and folly in equal measure, I comply – eagerly. Lying on my back, knees
raised, toes touching, I smile, joke and giggle with M., who admires my
red brogues, as the consultant takes an obscenely long, wide needle, and
plunges it deep into the tissue of my left breast. The shock, the pain,
cause me to yell: ‘Ahhhh!!!!’ ‘Fuck that hurts. Shit. Fuck!’ This is all
wrong I have to get the train. She rams the needle in again, all 15 inches:

“FUCKKKKKKKK-CCCC”
Shaking, disorientated, unable to buckle my shoes, M.is suddenly
transformed from her previous status as the Angel of Death into my New
Best Friend, helping me to regain my balance, to do up my footwear and
the final indignity, to provide a shoulder to lean on as I shuffle and sway
out of the diagnostic space.
The tempo speeds up again: suddenly I’m in the consultant’s con-
fined office. Without considering the consequences, I’m effecting my
‘academic interrogation’ technique, demanding clarification – although
78 Rachel Velody
it doesn’t quite come across that way: ‘D-Do Ah-I – I- have- cancer-I
c-can- cope-I’m- not- going- to- break- down-I just need to know?’ She
tells me, ‘informally,’ it’s almost certainly Breast Cancer, it’s aggressive,
(is any tumour polite?), and I should see the consultants (note plural), at
Wycombe asap. Following the ‘be careful what you ask for’ one-to-one,
I stumble down the corridor with M. jovially comforting me with the
news that she will be present every step of the way, ‘whatever happens’
and so we hug before I begin to process that ‘whatever happens’ is a
reference to my funeral.
Still, she doesn’t need to worry about my state of mind:
I’m ecstatic!
This is fantastic news!
I don’t have to go to work today.
Or perhaps for the rest of my life.
(I might even lose some weight).
Oscillating, or rather careering, between shock, denial and detachment,
I lock myself in the loo, which, unluckily, faces directly onto the waiting
room. Suddenly I’m weeping, albeit discreetly, aware of my proximity to
the ashen-faced women in the corridor, doubtless hopeful they aren’t an-
other of the one in 100 lotto winners. Compartmentalization next kicks
in, essential for NHS staff who must hand out this rubbish news, and for
the patient. Which may explain why, adrenalin surging, I jump on the
Wycombe to London train. I’m off to college. Half-way to Marylebone
station I ring my twin sister who answers, though it’s only 3 a.m. in the
States, interrupting my incoherent sketch of the clinic’s tests and diagno-
sis: ‘Rachel. Get off the Train Now and Go Home.’ But my brother and
his partner are already haring, by motorbike, to rendezvous with me at
the British Museum. So, I head into its vast atrium.
And on a stone bench, fall fast asleep, slap bang in front of The Elgin
Marbles.
Work signs me off for a few days.
Then weeks
And months.
Here’s why.

In Limbo: Diagnosis Continues

My partner Martin and I sit in the consultant’s room in Wycombe
Hospital. M. materialises. I shrug my shoulders, accepting her presence
as evidence of paranormal forces. The oncologist and surgeon confirm
that the cancer is Grade three DCIS (Ductal carcinoma In Situ) HER-2
positive, aka human epidermal growth factor receptor 2. HER-positive?
As in ‘woman friendly’? If DCIS is supposed to be non-invasive, if ‘in situ’
 Inscribing Comedy in the Breast Cancer Narrative 79
means in one place, why are there carcinomas everywhere? How can the
disease have spread from the left breast to the lymph nodes under the arm-
pit? And anyway, what the heck is a lymph node? Metastasis? My brain
slowly deconstructs the term, slotting it into the rest of the surgeon’s sen-
tence: ‘dispersal to other parts of the body.’ Instantaneously I envisage the
through line: Cancer ⟶ Spread ⟶ Incurable ⟶ Hospice Death (presum-
ably down the road at Stoke Mandeville hospital’s Florence Nightingale
‘chapel of rest’). But I’m well. The best chance? I interject ‘Hang on!’ and,
to the assembled room of consultants, Martin and M., I make a desperate
bid to curtail this fast-developing melodrama:
‘I mean – this isn’t going to kill me.’
Amid the reverberating silence a half-asphyxiated, incredulous squeak
emerges from my larynx:
‘Is it?’

FUUUUUUUCCKKKKKKKKK
KKKKKKKKKKKKKKKKKKK
AGHHHHHH!!!
The glasshouse of ‘morbidity happens to other people’ is in smithereens
as I am transported into the passenger seat of a Mercedes SLK, (con-
vertible), driven by the Grim Reaper. Shrieking maniacally, careering full
throttle down the Autobahn, ignoring the federal speed limit and acceler-
ating into ‘sport mode’ we are being catapulted towards the precipice of a
mountain peak, where a towering billboard is alternately flashing deepest
crimson and darkest noir, a calligraphy dripping with, entrails?

! ‘Achtung!
!!Terminal Velocity!!
100,000-foot drop
& then some’.
Before I lose all inhibition and scream the place down this phantasma-
goria evaporates, for I am etching diagnosis, treatment and termination
as events happening to someone else. Fashioning what I believe is an op-
timistic countenance, unaware I’m wearing the contorted grimace of the
‘Joker,’ I nod like a puppet, while the team discusses the fine features of
disease and ‘best options.’ The squad will utilize a targeted intravenous
(IV) chemotherapy, one that seeks out and destroys oestrogen, (cross
80 Rachel Velody
fingers). ‘Therapy,’ with its connotations of a health spa, strikes me as
a wildly inappropriate phrase but I must focus. There follows further
discussion about my form of breast cancer, apparently, ‘calcification’ or
excessive oestrogen, essentially an exploding Catherine wheel of carci-
nomas in my breast. The surgeon elucidates another key aspect of my
judicial sentence, ‘radical mastectomy.’ The expression passes through
his lips, a lethal vapour subtly infecting the room. I’m still smiling, per-
haps too widely, and nodding, certainly too quickly, for it’s a fascinating
monologue concerning a medical procedure that I might otherwise be
watching on catch-up TV. Then there’s a spot of deep heat treatment
via radiotherapy to vaporize remaining cancer cells. Assuming my body
is amenable, I win a bonus prize, biological therapy, in the form of an
HER-2 specific monoclonal antibody drug called Herceptin, also to be
given via IV, in a bid to encourage my immune system to actively attack
potential cancer cells. I then finish my Champneys’s retreat by taking
Tamoxifen for five years to prevent oestrogen developing in my body.
Have I got all that?
The single connection I make from the torrent of information is that
had the IUD been fitted, as it was due to be, 14 days ago, I would actu-
ally be sitting here with a silent but deadly IED in my uterus, dispersing
oestrogen along a pelvic highway sign-posted ‘cancer next exit’. Other-
wise I digest little, including the links between breast, malignancy and
surgery. Until the close of the tête-à-tête, at which point the surgeon
returns to the minutiae of mastectomy and I am faced with the stark,
incontrovertible fact that my Left Breast will be removed, completely.
In about 15 working days.
My best pal Paula and I are driving around Whipsnade Zoo admiring
the Grevy’s Zebras when a call comes through from M. to let me know
that the operation is being halted. I grab P’s arm and holler ‘No Mastec-
tomy!’ I’m euphoric. For about five seconds. Which is the time it takes
her to scribble a note with one hand whilst smoking a fag with the other:
‘They’re Staging You.’ ‘Are you Staging me?’ ‘That’s right Rachel, we
are.’ I ask P. what staging means, as I often do whenever there is some-
thing important about which I haven’t a clue. It transpires that it is futile
to remove the breast from a woman whose tumours have metastasized.
With cancer multiplying and mutating in the lymph nodes, my ranking
in the Premier League Championship is already impressively high. And
if the disease has migrated into the bloodstream and onwards to ‘other
places’?
It’s Championship Finals, it’s Penalty Shootout, it’s Scoring the

Winner, cue Mexican Wave, iiiiiiiiit’ss…

DEATH.
 Inscribing Comedy in the Breast Cancer Narrative 81
So, the good news is I get to keep my ‘rack,’ the bad news is I need to
start planning my funeral. Note: ‘no flowers, diseased carcass to be dis-
sected and distributed for the benefit of low-flying Kites’ (local birds of
prey). It’s a comfort that the remnants of my cadaver scattered over the
Chiltern hills will, coining Mary Poppins, ‘feeeeeeddd the birrrrrrrrds’
and contribute to the vicinity’s rural tag line: ‘area of outstanding
natural beauty.’ P. continues puffing away, so I filch a fag and from then,
for several years, intermittently sin with a ciggy, a health ‘no-no’ about
which I persistently fib to the medical squad. It’s all in the past Mum,
honest.
The staging conundrum necessitates a retinue of tests and I teeter on
the cusp of institutionalization, negotiating grim tedium and mounting
anxiety. And from this point my battered Freelander becomes protective
shell and private bio-hazard, as I adopt the guise of urban D.J., tracks
blasted at a mercilessly high volume, wearing the necessary sartorial
accessory, dark shades. In this alternate universe I cruise in my black
hearse between different sites and diagnostics. To the phlebotomist for
blood tests, for x-rays and ultrasounds, all to identify indicators of me-
tastasis in the liver, lungs and bones. And a biopsy to see if they can
definitively locate the variant, the mutation of cancer germinating in
the breast tissue which they think is HER-2. There continues a niggle
about my liver, ‘probably a benign cyst.’ Despite all tests, including a
‘hold-my-bladder-in-agony-UH-OH!!-I-think-I’ve-wet-myself’ ultra-
sounds are ‘inconclusive.’ An MRI, magnetic resonance imaging, will
M. remarks soothingly, be definitive. This doesn’t comfort me. At. All. I
stomp through the Hospital car park, slam shut the door of my Humvee,
MAX the volume on Elvis Costello’s ‘Pump it Up,’ and REV the engine,
HARD. The car reverberating to the booming bass, I stick two fingers
up at M., wherever she is.
It’s Good to be Gobby.
But that attitude doesn’t always work. Days later, apprehensively
waiting to enter the MRI suite, I find myself, as one does, mysteriously
seated at a roulette table. A familiarly cackling skeletal figure, dressed
as a croupier, tosses gambling chips at me: goodness those fingernails
are filthy. With grimy digit and thumb, s/he spins the wheel. I Gasp.
For numbers are replaced with letters, which, as the table whirls ever
faster, merge…on-the-Black-Stage-Threeeee-Survivallllmayyy-beeeee-
on-the-Red-Stage-Four-Allllbetttssarrreofff!
Which may explain the uncontrolled sobbing as a ‘contrast medium’
is injected and weaves through my body like a cold coil. The tell-tale dye
will allow the radiographers to scrutinize whether and to what extent the
cancer is in the liver, in the liver, in the liver, they think it’s in the liver.
I am next incarcerated inside a glossy white tubular casket with the
nameplate ‘claustrophobia,’ an intercom for company on my trip into
Hades. ‘Rachel. If you feel uncomfortable or want us to stop. Just press
82 Rachel Velody
this button.’ I feel uncomfortable and I’d like you to stop. ‘We’re going
to start, you need to stay absolutely still, ok?’ It’s not ok, there’s zero
wiggle room and you’re seeking evidence of my untimely demise. Lights
flash, a noise not unlike HAL, bellows in my ears, then through my en-
tire body: WAH! -WAH! -WAH! ‘Good Rachel. Next scan starting
in a few seconds, ok?’ It would be. Except for those fast-flickering fairy
lights and HAL ratcheting out a series of military commands:
A-A-A-A-A-A-A-A-A! / A-A-A-A-A-A-A-A-A! / A-A-A-A-A-A-A-A-A!
Can’t any of you hear this?
‘Anddd the next scan is startinggggg… nowwww. Breeeeeathe in.
Aaaa-ndddd Holddd…’.
Encased inside a psychotic A.I., I feel precursors to an epileptic
attack. Hands clammy, heart-beat increasing, I ‘miss’ fragments of the
temporal, it’s the flickers of electricity in my faulty brain. This is the state
of petit-mal.
Present-absent, present-absent
I depress the remote. Nothing
Click-click. No response. They are engrossed in images of my
(diseased?) liver
Heart racing, hands sweating, I press again. Zero
I’m heading towards a condition impervious to ‘Immersive Mind-
fulness,’ Grand-mal seizure:
There my body will repeatedly twitch and jerk, and I will lose con-
sciousness, convulsing. Complemented by foaming at the mouth,
chewing off a taster of tongue, gnawing away a lump of lip, potential
incontinence, head and limbs thrashing against this – this tomb.
Hellllllllllp meeeeee
A lifetime, or rather ninety seconds later, I’m brought out intact, if
mute.
‘Well done’ says the radiographer brightly.
As the medical team is confident about a ‘negative’ outcome, how-
ever, my fears gradually dissipate. Consequently, I strut into the consul-
tation the following month, with just a wide smile for company, which
promptly falls away.
They are discussing the contents of a folder, visibly upset.
Liver.
It is in the liver.
Winded.
Can’t breathe.
A disembodied howl erupts. Then stops.
Dead.
Despite these ‘exit’ signs, the team sends me to the John Radcliffe
Hospital in Oxford where an expensive PET machine (Positron Emission
Tomography), scans the organ via a radioactive tracer. Another trip to
the Underworld.
 Inscribing Comedy in the Breast Cancer Narrative 83
Time speeds up and slows down when you’re waiting to find out if you
get to live or die.
Tickckcccccccccccccc
Tockckccccccccccc
Tickckccccccccccc
Tockckcccccccccc
TickkcccTockkccTickkccTockkccTickkccTockkcc
Tick-Tock-Tick-Tock-Tick-Tock-Tick----Tock-Tick-Tock-Tick-Tock-
T I I I I I C C K C C C -T O O O C C C C C C K -
K-K-CCCCCCCCCCCC

-The Clock Stops.

DEAD?
We’re back at Wycombe…
It’s Negative.

Positively-Great-Negative!
As Cathi, another friend who smokes like a chimney, says: ‘It’s All
Good.’
It is Good.
It also means that Treatment starts.

In Hell: Chemotherapy and More

The essential factors ensuring that the barista embellishes my semi-
skimmed cappuccino with sprinkles of life are as follows: submissively
imbibing all treatments; accessing the superb skill-set of the oncologists,
surgeons and nurses – including the fantastic Macmillan team; being
receptive to everything I’m given; and complete passivity.
So, IV chemotherapy. It’s a doddle isn’t it? I turn up, they pop a needle
in, I lose my hair temporarily, and receive a frothy coffee, replete with
fairy dustings smacked through a stencil spelling out ♥ Life Expectancy
Radically Extended ♥. Not exactly. I must tolerate a toxic drug regime
over six months, composed of cycles beginning with a combination
drug, FUCK-T, I mean FEC-T. At 47 FEC-T rapidly leaves me hairless:
no hair on my toes, legs, pubis, stomach, underarms, face. Some women
pay for this. The joke wears thin, literally, as strands, and then locks
come away whenever I carelessly run my fingers through or brush what
used to be a mane. Showering one day, viscous black seaweed is suddenly
84 Rachel Velody
in my hands, and I am semi-bald. Following cycle two Martin shaves
the remnants. The final humiliation? My gorgeous, fat, black eyebrows
wither. Permanently. So treatment is erasing the visual tropes of my
Russian-Polish, Ashkenazy Jewish ancestry, the intergenerational signi-
fiers of her-story. Instead, with the visage of a pale egg, my new fashion
statement, curated and FedExed by Sis, is a furry aviator hat, com-
plete with ear flaps. My metamorphosis from woman to housebound,
fractured femme is complete?
How naïve.
Because FEC-T also hurtles me into the menopause. On cycle one
I have a period, by cycle two there is not a single drop of blood and
I am divested of the ability to reproduce. No one suggests harvesting
eggs prior to treatment. Chemically deleting the capacity to conceive
creates a relentless wave of shock and grief, intensified by a subsequent,
panic-stricken, google search which confirms that, in the UK adoption
guidebook, I am now officially a pariah, a locus of contamination, on a
par with Chernobyl. Any potential offers I make of unconditional love
for a child trapped in a state institution will necessarily be cauterised
by social services. So, I’m left with another life-long ‘disability’, no chil-
dren. Instead I smile when I see kids, (but not too much, I wouldn’t want
to look desperate), my stomach contracts, a physical yearning for a life I
will never have. Sometimes I cry.
Still. There’s SEX: erotic, carnal, unfettered by the sound of tiny
feet, yes?
Guess what?
My libido, losing altitude in the early stages of chemo, now plunges
into the Atlantic, a biological manifestation of the drugs, together with
more than a modicum of self-loathing as my body and my future inexo-
rably shifts into the liminal.
And FEC-T neatly illustrates the risks of an ever-weakening immune
system. Following each cycle of therapy in the chemo ward, the fittingly
named ‘Sunrise Unit’ (smile, there’s free tea, sarnies and choccy biscuits,
just look away while the woman in the next cubicle is puking up her
guts), my white blood cells will lower. With my immune system open to
acute infection, I’ll be jettisoned into a galaxy of illness far, far away,
to the planet Neutropenia, located in the star system ‘It’s not looking
good.’ Touching down I will, to limit the chance of infection from mere
mortals, be whisked away by M. to either (a) gradually get better or (b)
undergo a blood transfusion. Failing that?
R.I.P.
So, having been stabbed by the nurses in the chemo clinic with FUCK-
IT-ALL, to (hopefully) terminate cancer, I go home and shoot-up an
ampoule of heavyweight steroid, to protect the precious white cells sur-
viving F-I-A aka Fear.
 Inscribing Comedy in the Breast Cancer Narrative 85
That’s poison (to kill cancer) plus poison (to protect me from the
‘treatment’ that’s killing cancer): P1 × P 2 = P 3 + v0μ1T.
I crawl into bed, waiting for the vicelike grip of P3 + v0μ1T, a pattern
that becomes blandly familiar as I take on the character of a Dicken-
sian consumptive who’s caught the flu: shaking, sweating, itching,
retching, coughing, joints and muscles groaning, concluding with me
rising, phoenix-like, from my clammy sickbed. This Victorian novella is
replayed every 21 days, each time I have chemo.
What I fail to comprehend, as my hair vanishes, as I am robbed –
within 42 days – of my procreative capacity, as the ‘change of life’ takes
me oh so gently by the throat: daily flushing, night sweats, the heart gal-
loping furiously fast, insomnia the new normal, is that I have a virtually
obliterated immune system. Swallowing all those medical prophylactics
helps me to believe, following cycle two, that I am not only shielded from
Neutropenia but that I’m ok. This ‘high’ is aided by the spectrum of pre-
scription drugs I’m taking, and which run the gamut from A (antibiotics)
to T (Tramadol). Tramadol is prescribed for the aches of chemo. But I
am guzzling it to ‘relax.’ One? Three? Why not a nice round number, say
four? More? Ooo, go on then. This medicinal excess allows me to ‘float’
in the night, an inviting alternative to staring fixedly at the ceiling, inter-
minably alert, desperate for sleep, for peace. Later, in the cancer ‘trip of
a lifetime,’ the Macmillan counsellor informs me Tramadol is addictive.
Rubbish I snort, I don’t have an addictive personality. Then I consider
reducing the dosage, a thought I quickly reject. It’s necessary pain med-
ication, given that all other conventional and alternative remedies for
menopausal misery (including ‘Black Cohosh Herbal Tea’) are bloody
oestrogen-based, and oestrogen production is the whole reason I’m in
Tramadol gets a gold star for damp-
this mess. Plus,
ening the electric firecrackers in my worn-out
head the epileptic attacks

Right? Ok? They give me PEACE OF

!!!FUCKING MIND!!!
I reluctantly surrender hoarded blister packs of opioids only when
my doctor, speaking slowly and gently, as to a truculent child, points
out that Tramadol is ‘contra-indicative’ with Epilim (a.k.a. sodium val-
proate), which explains the continuing insomnia and the deterioration
of the epilepsy. At night, a blissed-out zombie, drifting on the edges of
86 Rachel Velody
REM sleep, I am oblivious to the drug-induced nocturnal stimulation of
my cerebral cortex.
The cumulative effect of chemo carelessly extinguishing my white
blood cells, as it locates and terminates carcinomas, together with the
toxic range of drugs designed to combat FUCK-IT-FUCK-IT-FUCK-IT,
is that my ability to fight infection nosedives. I am now susceptible to
every known pathogen, a medicalized body simultaneously expelling
cancer and a woman increasingly ill. A clue is my thinning veins. In the
Sunrise Unit in December, for cycle three, the nurse must viciously pierce
me all over my hands and wrists before eventually locating an artery
that, begrudgingly, absorbs the c-killer. Full of assorted drugs and delu-
sion, a few days later I make my way excitedly to the airport to collect
Sis, who has taken unpaid leave, crossed continents and time zones, all
to spend time with me. A day later I feel lethargic, then disoriented, then
disinterested. I simply can’t be bothered. To help her and Martin put up
the Christmas tree, to wrap Christmas presents, to talk.
Then I soil myself. Correction: I crap myself.
Cleaned up I collapse into bed and Sis, worried, sits on the mattress.
‘Please! Don’t!’ I beg, for even her small frame transfers unbearable
weight, and my tissue, parodying fibromyalgia, screams. The worst
thing about this sensory overload is that ‘I’ separate out from the ones I
love. I turn my face to the wall.
Having orbited Neutropenia throughout Christmas, I finally escape
the death star, my capsule crash-landing back onto Earth and into what
is now
The New Year.
We celebrate with a proper meal, before Sis leaves for the States.
As Winter turns to Spring however, much of what I eat has a metallic
aftertaste and sticks to the roof of my mouth, I gradually have problems
swallowing. Despite being plied with pills and gels to seduce the palate
into accepting food, and to suppress infections such as ulcers, dry throat
and thrush, towards the latter stages of cycle four food appears rather
like a dish of seafood left out in a warm kitchen, covered with a gelati-
nous glaze in which there surely floats contagion. Such mouth-watering
images are frequent throughout the final cycles of chemo and this move-
ment of the opera ends with a spectacularly abject aria in which I projec-
tile vomit up the walls and over the kitchen floor a cordon-bleu meal of
fried eggs and fruit salad.
On FUCKITY-FUCK? Then Never Ever Drop Acid. Of the citrus variety.

In Purgatory: Herceptin and Back to (Relative) Health

Finishing chemo heralds the onslaught of further countermeasures.
Tests confirm I am amenable to Herceptin, and I compliantly trundle
back to the Sunrise Unit for afternoon tea plus drip line, pumping in
 Inscribing Comedy in the Breast Cancer Narrative 87
the cunning biological agent inhibiting oestrogen-based pre- cancerous
cells. In tandem, I mechanically attend regular echocardiogram appoint-
ments which check my heart tolerance to the drug, ensuring I don’t keel
over outside ‘Sainsbury’s’ clutching the mid-week shop, which would
be a pisser after surviving six months and counting of IV toxicity.
Finally, I start Tamoxifen, a capsule to slay potential cancer cells, which
I’m taking for five years, yes? The oncologist calmly leaf’s through a
comfortingly enormous medical file, from which she withdraws a piece
of paper, scratches out ‘five’ and scrawls ‘ten,’ at a stroke doubling the
timeframe of this jagged little pill.
As repository-orifice for every single drug within the Breast cancer
handbook, my endurance to ‘therapy’ does, however, offer one uplifting
proof for a spiritual sceptic, I must now be indestructible if not immortal.
Duly energized, I make the long drive up to Leeds to see Aunty Jan and,
from a collection of her strays, I adopt an obese, antisocial cat. Back
home, I demand a puppy. Life-affirming and pragmatic decisions? Tick.
Or simply, If I don’t get up, get out and interact I’ll shortly be dead any-
way. I am moving on.
Until, that is, the mastectomy.

Back in Hell: The Mastectomy

I surface from sedation to a ward nurse ordering me out of bed, deep
vein thrombosis is a risk to the comatose. Sitting up, my medical gown
touches the left chest and I sense an almost-void where my breast used to
be. This and the armpit are attached by short tubes to two plastic con-
tainers slowly, continuously, filling with a yellowish-red liquid. Utilizing
the hi-tech gizmo proffered by the nurse, i.e. a plastic bag, I lift these
and drag myself to the bathroom, and, as the leads aren’t long enough
to dump them on the floor, decant my Hermes tote, avec chic ‘flask des
body fluids,’ into le sink. I open the gown, then gingerly peel away a
section of stained plaster and gauze staring, fascinated and repulsed,
at the bloodied, puckered, scarred layer of skin that formerly held my
breast tissue. No nipple. Not the material of nightmares then, just un-
speakably sad. Chemo, secondary drugs, this amputation, are silently
eroding the core of my ‘self.’
Who, what, am I?
It’s also hard to lift my left arm and yet, assuaged by sedatives, I leer
at the maimed reflection: S’fine…constrictedfleshaxillaryclearanceexcav
ationcancerouslymphnodesdecimated.
Hugging said bottles of Lucozade I pitter-patter tipsily back to the
beckoning ward bed. Once horizontal that woozy satisfaction dis-
sipates, replaced by piercing surgical pains along the chest wall: to-
gether with the worst case of cystitis I have had for 20 years. I beg for
drugs, but they can’t get another IV drip in, as my post-chemo veins are
88 Rachel Velody
close-to-knackered. No morphine. ‘How about some more ibuprofen?’
suggests the nurse. I mewl plaintively, I don’t want sweeties, I want
relief, my brother and niece are due to visit. ‘You know,’ says the nurse,
‘you don’t have to see them’ and despite feeling guilty I cannot face a
conversation about my deathly body and force a rictus grin to create the
illusion of post-op recovery, not with the increasing pain in my vagina,
my chest, my arm. And the fact that I no longer recognize myself. So,
I ‘cancel’ in favour of ‘selfish time,’ in the well-appointed women-only
ward, where the food is surprisingly tasty.
February moves into March, and Martin and I return to Wycombe,
where the surgeon shares good news. Pathology reports confirm calcifi-
cation and tumours within the severed breast tissue, and infected cells in
the lymph nodes of flesh detached from the armpit. I’d have been dead
within a few months had I opted to keep my hair, breast and repro-
ductive capacity. But, treatment doesn’t yet guarantee survival, perhaps
explaining why, instead of elation, I feel battered, emptied out and
Alone. So very alone.
And
A little Afraid.
Especially as there’s more to follow. Cancer genomes are devious
recidivists, so the oncologist sends me to the John Radcliffe Hospital
again, to meet LINAC a.k.a. Linear Accelerator. LINAC uses radiother-
apy, targeting and exterminating free-floating ‘risqué’ cells. As I’m being
called in my mobile vibrates, it’s the husband of a terminally ill friend I
made at the Sunrise Unit, with the worst news:
Gill has just died from breast cancer
<>
Yet the LINAC team must prep me. Now.
This requires lying completely still as the nurse marks my skin with
felt tip.
Which is difficult,
spread-eagled,
stark-naked,
except for a glum pair of black cotton high legs,
single-breasted,
hairless,
face and neck covered in tears and snot.
‘Shall we stop?’ asks the nurse gently.
I think of Gill, the surreal conjunction of her death with my prepara-
tion for LINAC’s ‘high-energy’ radiation, a process purloining the syn-
tax of 24-hour clubbing.
‘No!’ Sob-Gulp. ‘Do it!’
So that I can truly wail I select a track from their (impressive) playlist.
We proceed with the markings as Editor’s ‘Spiders’ vibrates, then surges,
through the cavernous room. I am parting from my friend in the only
 Inscribing Comedy in the Breast Cancer Narrative 89
way possible, for the truth is that the death of someone I love, scarcely a
few minutes ago, takes second place to the act of self-survival.
There follow daily long, tedious and courtesy of a chronic attack of
sciatica brought on by driving to multiple appointments but also through
being otherwise sedentary for six months, excruciating journeys between
Chesham and Oxford for radiotherapy.
Trips that take the entire day.
For 180 seconds of ‘hi-NRG’ zapping.
Following the first week of cancer-cell execution I am myself
annihilated.
Grazing on my fist for a month to cope with compressed-nerve-agony
does result in one fantastic reward, however: spinal anaesthetic, knock-
ing the sciatica out of the proverbial ‘ball park.’ God, I love drugs.
Then I wait to see if the side-effects of chemotherapy, mastectomy,
radiotherapy, Herceptin plus Tamoxifen, not forgetting the glut of A to
Zee of medicants, have destroyed cancer – or just me.
The left arm swells with fluid, the embryonic stage of lymphoedema,
for I no longer have nodes in the armpit necessary to filter bacteria. I
schlep regularly to a clinic where they measure and contrast the circum-
ference of my jellylike tissue against the right limb, massage away the
liquid plus potential infection, and re-measure. Back home I rhythmi-
cally knead the flesh, reciting as I do the celebrated ode ‘mind-numbing
,
boredom beats further disfigurement and disability.’
Some weeks after the mastectomy, removing the chest plasters, I dis-
cern tissue, a protrusion to covet, a partial reprieve. But a consultant
confirms this to be a lacuna, another invasion of lymphoedema, and this
too requires the fluid to be carefully drained from the pocket of skin
formerly known and loved as breast. I miss it.

In Transit: Reconstruction and Recovery

Prized throughout Buckinghamshire, my artificial mammary is com-
plimented by nurses as reconstruction exemplifying ‘best practice,’ and
followed frequently, in hushed tones, by tales of disastrous case-studies,
ranging from tissue rejection to disfiguring microsurgery.
My breast is re-built through a process known as DIEP-FLAP, which
transfers muscle, tissue, blood vessels and skin from the lower abdomen
to form a breast. The first and major stage of ‘renovation’ is performed in
one 11-hour marathon-race-against-time, beginning with a Tummy Tuck
and finishing with a Brand-New Breast being attached to the chest wall.
‘Tummy tuck,’ a fragrant expression, culled from a cosmetics industry
seducing (mainly) women into processes of evisceration. Lying on a gur-
ney, in the anteroom adjoining the operating theatre, images of mutila-
tion sucker-punch, but serendipitously, the line between comprehension
and inebriation blurs: general anaesthetic is hurtling through my veins.
90 Rachel Velody
T.K.O.
I lie inanimate, awaiting rebirth. As the operating team slice into my
abdomen; cutting a swathe near vital organs such as bladder, uterus,
liver, kidneys; heaving out blood, guts, muscle and fat; and carving from
this matter my new breast. Not forgetting the navel which must be exca-
vated and repositioned. My surgically levelled stomach is sutured before
I bleed to death.
I dream on, as the team rapidly yet deftly style an a la mode breast from
my stomach viscera, pause to debate and dispute its aesthetic qualities,
concur, ‘high-five,’ calibrate and finesse. They finish by transplanting
this cultivated alien to my chest and, as living flesh requires continuous
blood circulation, use microsurgery to painstakingly attach the slab to
the torso, ensuring Every. Single. Blood Vessel. Is. Connected.
All before tea-time.
No wonder women, on being offered this plastic surgery, back out of
the consultant’s room post-haste with a: ‘Thanks but no thanks, I’ll stay
with a nice silicon prosthetic or failing that a piece of cotton wool I can
insert in my M&S choice of two, no-silk, lace-free, black or beige, poly-
ester “post-op” bra.’ Or maybe ‘nothing at all, ta.’ I, on the other hand,
am determined to get my pound of flesh. Literally.
I wake in the ICU in a state of confusion, in pain, and very hot.
This is because it’s essential to keep the tissue heated for the first week,
or it can be rejected by the ‘host(ess).’ When not ‘off my head’ on pain
relief I’m desperate to escape the torment of my boiling, itching flesh.
I am ‘crawl-along-the-corridor-walls-of-the-hospital-on-the-edge-of-
hallucination-to-escape-pain’ ill, frantic to scratch at the wounds. Fur-
ther, through bodily shock brought on by the op. ‘the menopause’ is
belligerently climaxing:
Heat + Flushing + Night Sweats = an experience I assume close to
being spit roasted.
Eventually, I escape the set of 12 Monkeys and return home to
relax and recuperate. Or I would if I could turn on my front – that’s
banned with my new breast – or on my side – ‘a-a, not with the risk of
lymphoedema’ – my back? Out! Remember your L5S1 disc removal?
Transcendental levitation? Giving up on respite I stagger to the bath-
room mirror to admire my hard-won ‘reality make-over’ physique. An
anatomy not only tumour-free, (for now), but as per ‘ye olde worlde
fairy-tale,’ rejuvenated with the physical attributes of someone consider-
ably younger and fitter: my stomach flat-ish; my torso symmetrical; my
breasts shapely, pert, and likely to stay that way apparently. All’s well
that ends well then…
OH…MY…GAAAARRRDDDDD
I’m confronted by a hideous life form, one verifying my plasticsurgeon
is Frankenstein. Head erratically pasted with hair clumps, face bereft of
 Inscribing Comedy in the Breast Cancer Narrative 91

eyelashes and eyebrows, countenance deathly pale. Stomach - Huh?

Where is
my Stomach?
That ‘post-feminist-enemy-of-woman’ – fat, has been expunged,

bulldozed. Yet, this location, previously known as ‘abdomen,’

isn’t polished or planed, for it carries, along its entirety, an

IMMENSE red tear, with massive, blood-

ied, serrated stitches.
My belly button appears to be off-piste.

And the beauteously ‘buff’ breast?

A ghastly malformed mound of flaps and
scars , its three-tone palette of yellow, red and white, complemented
by – I don’t believe this – a

clear error.
Somewhere during that restoration project, the blade slipped, resulting
in a slash from cleavage to midpoint.
11 hours in surgery…
Post-operative PTSD…
To get the appearance of an Erect Corpse?
Too fatigued to shriek I pop another Tramadol. Or four.
As time passes however, a mutual respect emerges between plastic sur-
geon and patient, forged through a shared obsessive compulsive disorder
relating to the artistry of lift, proportion, cleavage. The new breast-
shape, plus erroneous laceration, is refined through: corrective augmen-
tation; liposuction; more liposuction; a reduction on my right breast;
finishing with sculpting the figurative cherry on the cake, a nipple.
And, the period for refurbishment and refit? This includes (a) waiting to
find out if I’m to ‘pop my clogs,’ nine-ish months, give or take a carcinoma,
plus recovery from tissue damage, cheers LINAC; (b) inching through the
surgical waiting list, nine-ish months; (c) ‘recuperation’ from the major op-
eration, add six months; (d) ‘surgical refinements,’ factor in another seven;
and (e) multiply by rabid determination to get the best NHS plastic surgeon.
Add it all up, spoiler alert, it’s a Longggg Timmme.
Now enhance: scars diminishing at an imperceptibly slow rate, intense,
chronic pain in the breast, arm, stomach, agonizing exertion bending to
retrieve interminable memos from Bucks NHS and their contents:
‘Time for your 6-monthly mammogram! No. not your falsie silly,
your “vintage,” right breast………..Oh-Bad-luck-we’ve- seen-calcium-
92 Rachel Velody
deposits-weknowit’s-excruciating-but-can-we-repeat-the-breast-compacting-
exercise-because-we-think the tumours are back?’
Yes, three years of treatment and reconstruction. And after all that?
Dead. Again.
That’s A (Agony) + (D) discomfort F + (Fear) × (M10) monotony = A.
Alienation.
Alienation from the aesthetics of my innovative, extra-terrestrial
object, and detachment from – well – me.

And The Here and Now?

‘Scars’ says Paula. ‘are beautiful, they are the signs you’ve lived’ and
I negotiate and reconcile with those wounds, the bodily symbols of med-
ical incursion and restoration. Dressed, I am a voyeur of my body, ad-
miring my breast as a moulding which contributes to symmetry. I enjoy
the weight, warmth, the liquid movement of flesh, my flesh. Naked, a
disjuncture-acceptance narrative repeats, for this surgical creation remains
distinct from my aesthetically pure, malignant, former breast. I gaze at the
reflection in the bathroom mirror and touch my wounds, scars which echo
my bodily narration of treatment, disfigurement, survival, rehabilitation.
I scratch suddenly, urgently, close to the cleavage, six years on the scar tis-
sue still itches. I consider the contrasting tones of the breast, then confront
the discoloured line that runs the length of the abdomen. Upwards now.
My hair, once upon a myth ago, long, poker straight, and dark brown,
has finally stopped growing back like a discarded fishing net. Irrevocably
altered - patchy, frizzy, thin - and increasing at an infinitesimally slow
pace, it has finally reached my shoulders. I now can boast tight curls, the
provenance of which appears to be an antebellum Southern Belle.
I intermittently consider a buzz cut.
The thick dark eyebrows which once framed my eyes? Virtually zero, but
here I do have a less drastic solution. A thick eyebrow pencil works a treat.
Estrangement, for me then, is frequent, yet fleeting. I blink and
disease and treatment are re-absorbed into my body, a body to which
I return reconciled, recognising the truth that we are all in the process of
‘becoming,’ continuously re-inscribing the ‘self.’

Conclusion
Comedic autoethnography enables me to shed a layer of protective skin
and thereby mourn, corporeal mutilation, potential children lost, time
vanished, debilitating physical and mental illness. But also, to acknowl-
edge the processes of rehabilitation and renewal, for my alien body,
broken and re-built, informs my present and future narratives. More-
over, abject laughter reveals that cancer is not singular to my disability
narrative. Does ‘cancer’ outrank epilepsy? The deformity of degenera-
tive arthritis? Hearing impairment? Depression and anxiety? Ageing?
 Inscribing Comedy in the Breast Cancer Narrative 93
Through writing a comedy-fable about my mutating ‘self’, I recognise
that disease is embedded within my DNA. A cycle to be repeated until
I die. That disability is a part of all of us. Ecriture also helps me appreci-
ate how very lucky I am. My journey through treatment reflects, irrever-
ently, immense gratitude to the NHS. For what saved my life was access
to brilliant medical interventions, but also to the expertise, kindness and
compassion of staff. All free at the point of use.
I calculate the amount of my life spent in treatment, to date, to be
somewhere roughly between 12 and 15 percent. Would I do it again? I
would. Life is Luminous.
And just a little funny.
For my dear family and friends, and for the remarkable women I met
on my journey through, and lost to, cancer: Gill, Helen, Tina.
Rachel Velody, 15 February 2019

References
12 Monkeys. 1995. Film. Directed by Terry Gilliam. USA: Universal Pictures
Bochner, A. and Ellis, C. 2016. Evocative Autoethnography: Writing Lives and
Telling Stories. London: Routledge.
Cixous, H., Cohen, K. and Cohen, P. 1976. The laugh of the Medusa. Signs:
Journal of Women in Culture and Society, 1(4), pp. 875–893.
Ellis, C. 2004. The Ethnographic I: A Methodological Novel about Autoeth-
nography. Walnut Creek, CA: Altamira Press.
HAL, an acronym for Heuristically programmed ALgorithmic computer, is the
sentient antagonist and serial killer from 2001: A Space Odyssey, 1968. Film.
Directed by Stanley Kubrick. UK: Kubrick Productions.
Humm, M. 1991. Border Traffic: Strategies of Contemporary Women Writers.
Manchester University Press.
Jacobus, L.A. and Barreca, R. eds. 1999. Hélène Cixous: Critical Impressions
(Vol. 1). London: Taylor & Francis.
6 Knowing North Korea
through Photographs of
Abled/Disabled Bodies in
Western News
Micky Lee

In an increasingly globalized world, North Korea remains one of the few

countries where little information flows out of the borders. That infor-
mation is mostly disseminated from the Korean Central News Agency,
the nation’s official news agency, which uniformly glorifies the leaders’
achievements and the country’s well-being. The Internet is only available
to a few hundred government officials (Baek 2016; Ko, Lee, and Jang
2009). Foreign visitors’ movement is restricted and heavily monitored.
In addition, they are not allowed to talk to the locals and their cameras
are examined upon leaving the country. Accordingly, the everyday life
of North Koreans remains a mystery to the outside world (S. Kim 2013).
In the absence of reliable sources, non-North Korean journalists who
wish to know more about the country have to rely on personal accounts
of North Korean defectors and photos taken in North Korea by for-
eign photojournalists. These accounts and photographs are often said
to be the most reliable evidence to show the uncensored truth about
North Korea (Shim and Nabers 2013). However, I argue in this chapter
that journalistic images of North Koreans need to be critiqued because
of three reasons: first, North Korean defectors who were willing to be
photographed for the Western press do not represent all defectors who,
in turn, do not represent all North Koreans. Those who were willing
to be photographed are more likely to be activists who wish to unify
the two Koreas or overthrow the North Korean regime. Second, photo-
journalists played an active role in constructing the portrayals of North
Koreans. Even though the government restricts the photojournalists’
whereabouts, photojournalists could choose to frame the subjects and
curate the images for publication or exhibition outside North Korea
(Choi 2015). Photojournalists could also use framing and lighting to
portray North Korean defectors in a way that elicits desired responses
from the viewers. Third, the North Korean government fully under-
stands the power of images, so it carefully chooses sites for visitors to
sightsee and photograph. What foreign photojournalists are allowed to
see and photograph in North Korea are already images approved by the
government.
 Knowing North Korea 95
To effect a critique of how photojournalistic images of North Koreans
construct knowledge of North Korea for an English-speaking audience,
this book chapter examines some abled and disabled North Korean
bodies published in photography books and mainstream publications
in English. The body is a contesting site from which the meanings of
North Korea and its people are made. While the North Korean gov-
ernment selected only abled bodies to display in public events, Western
journalists highlighted the disabilities – physical and mental – of the
defectors. Disability entails medical, social and embodied dimensions.
From a medical perspective, disability is a physical or mental impair-
ment that prevents individuals from full engagement in social lives. From
a social perspective, disability results from social institutions’ exclusion
of certain types of bodies. From an embodiment perspective, disability
is an experience shaped by an individual’s body, psyche as well as the
environment (Haegele and Hodge 2016).
In addition, the meanings of the North Korean bodies are never
neutral in the Western press because their bodies are supposed to be
owned by the government (Baek 2018). As such, their bodies are public
property that testifies the leaders’ brutal treatment of the citizens (Choi
2015). President George W. Bush has called the country part of the axis
of evil (Bush 2002) and President Trump has called the North Korean
leader Kim Jong-un a madman (Phillip 2017). To prove that the North
Korean government channels all the resources to build up nuclear weap-
onry at the expense of providing for the citizens, North Korean bodies
are used in the Western press to prove the dire living conditions in the
country; the body – its physique, wounds, scars and blemishes – is, then,
emblematic of the country’s political economic relations. In this sense,
the body of a North Korean is argued to be a synecdoche of the coun-
try’s well-being.
In light of the above, the first set of questions asked in this book chapter
concerns how some abled/disabled bodies of North Koreans serve as sites
of contesting meanings of the political economy of North Korea: first,
how are North Korean bodies believed to reveal the uncensored truth of
North Korea? How are viewers supposed to gain knowledge about the
country through looking at the bodies of North Koreans? Because both
the North Korean government and Western journalists compete to attri-
bute meanings to the North Korean bodies, how does the North Korean
government use uniform, abled bodies of military members to show the
country’s strengths? To contrast the perfect images curated by the North
Korean government, how does the Western press use disabled bodies to
dispel those images and what is the purpose of doing so?
At another level, the North Korean bodies are not only seen as evi-
dence of the brutal deeds of the North Korean government but are also
embodiments of North Korea itself. In other words, the bodies not only
96 Micky Lee
document the hard lives experienced by North Koreans, but they are
also reflect uncensored knowledge about North Korea. In this sense,
looking at the North Korean bodies is less about an interest in the in-
dividuals, but the country where the bodies used to locate. The act of
looking at the bodies exerts control not only at the individuals but also
the country. This act of looking is also gendered because a disabled body
is often seen as less masculine than an abled one (Loeser, Crowley, and
Pini 2017). This act of looking has implications on international polit-
ical economy such as deciding on sanctions or reducing humanitarian
aids (Choi 2015).
Given the earlier point, the second set of questions asked are: how
are the bodies said to embody the country? What are the gender impli-
cations of understanding North Korea when the bodies shown are dis-
abled? How can North Korea be controlled through the act of looking
at North Koreans with disabled bodies?
In the following, I will first provide background information about de-
fectors and the disabled population in North Korea. Then I will review
relevant literature on gender and disability, as well as gender expressions
in North Korea.

Who Are North Korean Defectors?

North Koreans are forbidden to leave the country. The only exceptions
are senior government officials, business people and workers sent abroad
to make foreign money. For those who are permitted to leave the coun-
try, they have to leave a family member behind to guarantee their return.
Defecting is seen as a treason; if caught, defectors may be sent to labour
camps; repeating offences may lead to execution. During the famine in
the 1990s, North Koreans could leave for China to find food and re-
turn to the country because the border was more porous. At that time,
defectors could apply for a travel permit or illegally cross the border on
foot after paying a bribe to border patrol soldiers. When the economy
recovered, the Supreme Leader and the Chairman of the Workers’ Party
of Korea Kim Jong-un tightened up border crossings. Defectors needed
to pay brokers (who were mostly North Korean defectors) a large sum in
advance to be transported to Mongolia or South Asia where they would
contact the South Korean Embassy who will fly them to South Korea.
After the South Korea government verified that the defectors were not
spies, they were given housing and education. However, defectors are
not allowed to return to North Korea once they are in South Korea.
There are currently 25,000 North Korean defectors living in South
Korea (Epstein and Green 2013), but a small number went to United
States or Canada as political refugees.
Since 2002, more women than men defected (M. Kim 2013) and most
defectors came from a lower class background. Women defect more
 Knowing North Korea 97
likely due to economic reason than political motivation (S. Kim 2013).
Despite the fact that women are more likely to defect than men, news
sources of the stories collected for the analysis mostly came from male
defectors. The disproportionate number of male North Korean defectors
shows the gendered nature of the defectors’ discourse. In addition, in the
collected news stories, male defectors are more likely to talk about their
disabilities and appear in news photographs. As will be explained later,
a male body with disabilities may elicit more desired response from the
viewers than a female one with disabilities.

How Is It to Be Disabled in North Korea?

The body is a contesting site where meanings of North Koreans are
made. It is impossible to know how many North Koreans have disabil-
ities and the experiences of those with disabilities because the North
Korean government does not provide any statistics about it. Informa-
tion about disabilities usually comes from North Korean defectors who
construct the meaning of disability based on their experience in North
Korea; this experience, in turn, is mediated by the Western press.
Traditional Korean culture that is influenced by neo-Confucianism
believes that a person with a disability reflects bad character (Kim 2017).
During Japanese colonization, Koreans resisted the foreign rulers by
using the ‘disabled body’ metaphor to describe its subordinate status
because direct resistance was condemned. After the Korean War, the
disabled body continued to be a metaphor to describe its colonial past
while ‘cure’ reflects the country’s independence. South Korean politi-
cians and scientists strove to ‘cure’ all disabilities because they believed a
recovered body means independence. The bodies of South Koreans were
then moulded to achieve capitalist growth and economic development.
Further, the trust in medical cure reflects the country’s wish to conform
the body to ethnic superiority, gender conformity and heteronormativity
(Kim 2017).
Cho (2018) stated that the North Korean government explicitly ex-
cluded the disabled populations from class hierarchy that determines
allocations of housing, food and jobs. A large number of North Ko-
reans may experience physical and mental disabilities because the eco-
nomic crisis from 1994 to 1998 has stunted physical growth and brain
development among children and adolescents who grew up during the
great famine (Greenberg 2015). In addition, defectors shared that North
Korea operates a large number of prison camps in which prisoners are
physically and mentally tortured (Wee 2018).
Defectors also revealed that there is an enormous stigma of being dis-
abled in North Korea. For example, a defector with a physical disability
once fled to China to beg for food but was caught by the Chinese police
who returned him to North Korea. He was subsequently punished by the
98 Micky Lee
North Korean police for showing his disabled body in China, which was
deemed to embarrass the country (Choe 2018). Parents chose to commit
infanticide when the babies were born with visible deformation such as
lacking genitals (Harrison 2017). The little evidence shows that social
stigma and the state’s exclusion rendered the disabled bodies invisible in
the country.

Current Literature on Masculinity and Disability,

Gender Expression in North Korea
I will review three categories of literature in this section: (1) masculinity,
disability and the body; (2) images of North Korean defectors in South
Korean media; and (3) gender expressions in North Korea. Current lit-
erature has not discussed how North Koreans with a disability are por-
trayed in the media.

Masculinity, Disability and the Body

Scholars agreed that the body is a contesting site to make meanings of
disability and masculinity. Gerschick (2000) suggested that the abled
bodied population assigns an appropriate femininity and masculinity to
a person with a disabled body. For example, an older male amputee is
considered to be more feminine than a younger one. However, the dis-
abled body destabilizes gender meanings because the bodies, both abled
and disabled, are unstable; they are ‘unfinished materialities that gain
meaning through various forms of symbolic representation and mate-
rial practice’ (Loeser, Crowley, and Pini 2017, xliii). The disabled body
refuses to be symbolically neutral: as a trope of physicality, the abled
population sees a disabled body as a body too much, too real and too
corporeal (Samuels 2014).
To Gerschick (2000), the body enacts gender. In some historical and
religious contexts, gender norms were associated with bodily norms, and
disability was associated with femininity (Samuels 2014; Serlin 2017).
Medicine, laws, traditional expectations and social conventions use the
disabled male body as a physical object and a psychic space to project
bodily norms (Serlin 2017). Adding to these, Loeser, Crowley and Pini
(2017, xxvi) believe that both disability and masculinity are expressions
of embodied subjectivities. They rejected a medical perspective from
which the body is essentialized into active or passive, male or female,
abled or disabled. Instead they advocated for a post-essentialist perspec-
tive that allows ‘the disabled masculine subject to be heard as a material-
ity that is (re)constructed in and through changing historical, social and
discursive condition’ (ibid.). This post-essentialist perspective acknowl-
edges that the bodies and selves are unfinished; they evolve amid ‘com-
peting truths that are productions over time, place, space, geography,
and culture’ (xlvi).
 Knowing North Korea 99
Some scholars pointed out that technologies are not external to the
body; instead the body is an assemblage of the technological and the or-
ganic. For example, Parlati (2015) asserted that technologies extend the
body’s surface and produce masculinity across surfaces of bodies. For
example, prosthesis of athletes is not only a medical aid but also part of
the body to show the resilience of the masculine athletes. Adding to this,
Moser (2006) believed that medicine and technologies were involved in
the interactive and interfering processes of making and unmaking dif-
ferences such as disability, gender and class. She further showed that
specific material practices and locations shape the realities of being dis-
abled, and these realities are neither given nor fixed.
Garland-Thomson (2002) related the history of photography with that
of people with disabilities. Staring at the disabled body creates discom-
fort among the middle-class viewers, so photography permitted a so-
cially acceptable form of staring. She suggested that different narrative
rhetorics all mark the disabled bodies as being different. Sahn (2017)
looked at another way through which staring at the disabled bodies be-
comes more socially acceptable. She noticed how wounded soldiers were
portrayed in mainstream films and argued that a disabled body made
the soldiers more vulnerable and less masculine; therefore friendship
between male soldiers with physical disabilities can have a homoerotic
undertone which is more readily accepted by the audience.

Images of North Korean Defectors in the Media

Scholars examined how North Korean defectors were portrayed in South
Korean television, in particular how they can gain full citizenship through
forming small families (Cho 2018). Talk shows that invited North Korean
defectors as guests encouraged the audience to see North and South
Koreans as ethnically identical, yet their backgrounds in different socio-
political systems are marked as being different (Epstein and Green 2013).
The bodies of women defectors have become objects of desire; they are
believed to be purer than South Korean women’s (Epstein and Green
2013) but ones that have experienced hunger and poverty (Park 2016).
To gain full citizenship, North Koreans have to mould their bodies to
conform to gender expressions such as adopting the South Korean accent
to show their ability to adapt and to exercise self-control (Park 2016).
Just as the South Korean media see North Korean women as exotic
objects, Western media also see Korean women in the same way. Novels
about the Korean War portrayed Korean women as hypersexual pros-
titutes who are childlike and primitive (Piao 2017). They were seen to
pose threats to Western society by endangering the domestic household
and robbing the sexual propriety of Western females.
Few studies looked at how North Korea was visually represented in
international politics. Shim (2014) examined how photojournalistic im-
ages of poverty and satellite images of the country are detrimental to
100 Micky Lee
foreign policies exerted from the West on North Korea. Along with Shim
(2014), Shim and Nabers (2013) suggested that North Korean imageries
are full of contradictions: on the one hand, pictures of military parades
implied that the country is dangerous; on the other hand, pictures of
poverty elicited sympathy from the Western viewers.

Gender Expressions in North Korea

Scholars agreed that gender expressions in North Korea follow social-
ist tenets, yet they deviate from the former Soviet Union and China by
highlighting the importance of family in revolution. North Korean lead-
ers were argued to have adopted the mother figure for nation-building
(S. Kim 2010, 2014). The mother, who was seen to be selfless, became
a revolutionary model because she tirelessly sacrifices for her children.
This mother figure became a generic term for parents, which encom-
passes both male and female genders (Kim 2014; Ryang 2000). How-
ever, North Korea did not have a term for women (Ryang 2000): females
are called youths, mothers or workers, but not women.
North Korea’s state-designed feminism is patriarchal in nature. For
example, Kim (2011) argued that the government centrally designed and
monitored women’s fashion in the post-Korean War era. Women’s cloth-
ing was used to uphold ethnically marked national femininity. However,
women’s fashion marked women as a difference because they had not
entered the public sphere before liberalization. In contrast, men had al-
ways been in the public sphere, so they did not need to gain legitimacy
through fashion. Lee (2009) suggested that women boxers were not de-
scribed in a stereotypical or sexual way in the North Korean media.
However, women athletes were said to be daughters of the leaders. Kang
(2008) added that despite the guarantee of gender equality, women were
expected to submit to their husbands. Their economic production out-
side the home was out of necessity rather than empowerment.
Current literature will help understand how the bodies of North
Koreans with disabilities may be seen as feminine, how North Koreans
are portrayed in the media and how North Koreans understand the
female gender. Current literature however has not analysed how the
bodies of North Koreans are portrayed in the media and how the bodies
serve as sites of contesting knowledge of North Korea.

Methods
To examine the images of abled/disabled bodies of North Koreans taken
by non-North Korean photojournalists for the Western audience, pic-
tures of military parades and defectors were chosen. North Korean
government permitted foreign journalists to photograph some public
events such as military parades; hence the marching participants were
 Knowing North Korea 101
considered to represent the nation to the outside world. In contrast,
North Korean defectors are supposed to be free from the control of the
North Korean government, so they are assumed to provide real evidence
of the everyday lives in North Korea.
Thirty-four parades pictures were collected. They came from photog-
raphy books published in Germany, South Korea, the United States and
the United Kingdom. The pictures were taken from the Korean War to
2018. The photographers’ nationalities are Belgian (Carl De Keyzer),
German (Julia Leeb and Eva Munz) and Romanian (Adelin Petrisor).
The five titles are: D.P.R. Grand Tour (De Keyzer 2018), The Ministry of
Truth: Kim Jong-Il’s North Korea (Munz and Nikol 2007), North Korea:
Anonymous Country (Leeb and Karasek 2014), North Korea Caught in
Time: Images of War and Reconstruction (Springer 2010), and A Week-
end in Pyongyang, North Korea (Petrisor 2016). Other than North Korea
Caught in Time that collected historical pictures of the Korean War, the
other four titles collected pictures of the ‘everyday lives’ in contemporary
North Korea. Some of the pictures collected in the books are sold to news
agencies that licence the pictures to news outlets. In this case, journalists
re-inscribe meanings of the pictures because they may have little idea of
the circumstance under which the pictures were taken.
Other than D.P.R. Grand Tour, all photography books begin with an
essay that discusses why the subject matter North Korea is important to
be photographed. Leeb and Karasek (2014) aimed to put a face on the
unknown people in North Korea; Kracht (2007) captured events staged
by the government; Petrisor (2016) documented the 100th Anniversary
of Kim Il-sung’s birth; Szalontai (2010) used declassified materials to
understand the role of North Korean leaders in the Korean War. All es-
says collected in the books are critical of the North Korean government.
Pictures of North Korean defectors came from publications aimed for
an English-speaking audience. I used the key words ‘North Korea de-
fectors’ to generate news articles by using Google Search (Google.com).
A commercial search engine was used instead of a specialized database
because I am more interested in knowing what articles will be generated
for a general reader. It has to be acknowledged that my geographical
location (United States) and preferred language (English) affected the
search results. If I were to conduct the searches in another country with
another preferred language, the search results would be different.
After removing articles that have little context and irrelevant topics,
29 news articles from US outlets (ABC News, NBC News, New York
Times, USA Today, Newsweek) were collected among which nine had
pictures of defectors. The interviewed defectors talked about their daily
lives in North Korea, how they left and settled in South Korea. No arti-
cle was critical of the defectors. The pictures were taken by photojour-
nalists working for newspapers and news agencies; some were supplied
by activist groups. The pictures consisted of profile shots, snapshots of
102 Micky Lee
the everyday life in South Korea and spot news photos. Not all defectors
were said to have a disability; defectors who were said to have a disabil-
ity may not visibly show it in the photographs. Twenty-five photos were
collected and analysed from an aesthetic perspective; attention was paid
to the use of framing, lighting, composition and mise-en-scène (setting,
clothing, objects). The images were also analysed in the context of writ-
ten texts (caption, article title and the body text).

Photos of the Soldiers

In this section, the abled bodies of military members marching in pa-
rades are compared to the disabled bodies of defectors in order to show
how the bodies serve as sites of contesting meanings of the political econ-
omy of North Korea. Photography authorizes looking which creates the
disability as an absolute difference (Garland-Thomson 2002). This way
of looking is also gendered because it is an act of domination: men take
up the active role of looking while women accept to be looked at (Berger
1972). The body with a disability – regardless of the gender identified by
the person – is made passive by being looked at.
The abled bodies are staged by the North Korean government who
is highly aware that these bodies are photographed for the Western au-
dience. Accordingly, pictures of military parades are some rare images
that the government distributes to the rest of the world via the state
news agency. The government may be motivated by the desire to show
the world a strong image of North Korea by displaying soldiers with not
only abled but also identical bodies in synchronous movements. How-
ever, the staging of bodies is met with suspicion from photojournalists.
For example, the essay in Kracht (2007) reads that North Korea is a
gigantic installation, a staged show for both visitors and residents. An-
other one wrote: ‘the country has deluded itself with what can some-
times be a rather absurd self-image, so that the nearly infinite amount
of deceptions and fables have ultimately become an accepted reality for
the nation’s twenty-four million inhabitants’ (Karasek 2014, ii). These
essays contextualize mass parades pictures which were captured to show
the façade that the North Korean government put up for the world.
Military parades and mass games that, respectively, took place in the
Kim Il-sung Square and Rungrado May Day Stadium were two events
to which foreign photojournalists were invited. Kim Il-sung Square con-
structed after the Korean War was designed for mass gatherings. Run-
grado May Day Stadium, built in the mid-1980s, was branded as the
largest stadium in the world. The massive sizes of both public places
are meant to illustrate the country’s strength. Among all photography
books, Petrisor (2016) devoted his book to documenting the parade
preparation by showing the marches of different military branches. The
use of very long shots and long shots as well as the wide depth of field
 Knowing North Korea 103
emphasizes the mass of soldiers rather than the individuals. Even though
some soldiers were framed in a medium shot and others had standalone
roles, the posture of their body – rather than the facial feature or the
expression – was the point of interest. For example, Petrisor (2016)
framed a lone soldier – the parade opener – in a long shot in which
he was positioned in the centre of the frame. The picture captured the
posture of his body from the side: the arched right arm that holds the
flag pole, the straight back and the lifted right leg were all highlighted
against a blurry background. The face has little details because of low
contrast lighting. Set against an overexposed background, the soldier
was almost like a silhouette with little details that shaped him as an
individual. He was portrayed as the prototype of a North Korean soldier
instead of a North Korean who happens to be a soldier.
The legs of the marching soldiers were the focus of many pictures. In
Petrisor (2016), the uniformly raised legs of soldiers form a horizontal
line that divides up the picture into halves. In some cases, only the hips
and legs of the soldiers were shown. The spectacle of the parade derived
from the lack of difference among the bodies; all soldiers look identical
due to the height, body shape and the lack of facial expression. Contrary
to the state’s desire to show the nation’s strength, visual fragmentation
of the body may symbolize the government’s violence against the citi-
zens’ bodies (Choi 2015).
Leeb and Karasek (2014) stated that it was forbidden to take pic-
tures of soldiers when they were not marching; yet they captured a mo-
ment when the soldiers were waiting for the parade to commence. The
two dozen soldiers adopted different postures – some crouched, others
stood with their arms folded in the back – and showed different bodily
expressions – some yawned, some laughed and some listened to others
talking. This ‘backstage’ picture de-emphasized the bodies and high-
lighted the individual differences; the showing of individuality is proba-
bly the reason why the North Korean government forbids photographers
from taking ‘off stage’ pictures of soldiers.
Gender, marked by uniform, is the only difference among the bodies
in the military marching: some women soldiers wear skirts and their
jackets highlight the bust. In Leeb and Karasek (2014, 120), the bare
legs that extended to part of the thighs attracted the viewers’ attention.
While socialism in China erases gender difference (Zhang 2016), the
North Korean branch allows for gender difference. Women are expected
to uphold ethnically marked national femininity (Kim 2011). In the case
of China, the identical bodies in military parade implied the govern-
ment’s demands for citizens fashioning and refashioning their bodies in
order to meet the country’s goal (Zhang 2016). In the case of North
Korea, the government sculpted and selected identical bodies to show
uniformity among citizens while highlighting fixed gender difference
through military uniform and body shape.
104 Micky Lee
I have so far explained how the North Korean government curates
uniform, abled bodies of military members for the Western press to pho-
tograph. While the North Korean government may want to show the
country’s strength, the essays that introduced the photography books
asked the readers to see the abled, identical bodies as guises that conceal
the truth of North Korea. By focusing on the mass and sometimes frag-
mented bodies, photographers refuse individuality among North Kore-
ans and objectify them (Shim 2014).

Photos of the Defectors

Another way to reveal the supposedly concealed truth is to photograph
North Koreans who are not staged by the state. Defectors who live in
South Korea and the United States were photographed to show bodies
of the ‘real’ North Koreans who are no longer controlled by the govern-
ment. However, photographs of defectors are not neutral presentation of
the bodies because they were staged by the photographers who selected
particular lighting, setting and framing. All these techniques ask the
Western readers to understand the bodies as evidence of defectors’ his-
tory and life experience. The photographed bodies are also accompanied
by captions and written texts in the news stories.
As mentioned previously, not all defectors were said to have a dis-
ability and not all physical disabilities were shown in news photos. One
defector with a visible disability is Ji Sung-ho whose left leg was ampu-
tated after an accident in North Korea. In a picture appeared in the US
news network ABC (Reuters 2018), Ji was shown standing with a pair of
wooden crutches. High contrast and hard lighting casted a pronounced
shadow of the crutches on the floor while highlighting the texture of
the unpolished wood on the crutches and the equally harsh texture of
his face. Because the light was shone from Ji’s right hand side, the edge
of the pant that covered the amputated leg blended into the shadow on
the dark blue screen in the background. The use of lighting first drew
viewers’ attention to the crutches, then his bare arms and weathered
face, next his shoeless right leg, and finally the black t-shirt. The missing
left leg was obvious, but the use of lighting did not give a clue where his
left leg ends. Shadow was used to draw attention from the absence to the
presence (i.e. from the missing leg to the rest of the body) even though its
absence made Ji the news subject.
Ji’s physical disability was not apparent in three other news photos.
In a New York Times picture (Choe 2018) taken at President Trump’s
State of the Union address, Ji was honoured by attendees. Wearing a
pair of glasses and dressed in suit, Ji’s disability was only implied by
him holding up the same pair of wooden crutches. He was probably
wearing a prosthesis because of the balanced posture. The formal suit
and the soft lighting on his face made him almost unidentifiable as the
 Knowing North Korea 105
shoeless defector with a disability in the Reuters picture. The Reuters
picture transported him back to North Korea where he was disabled
and poor (as reflected from the bare feet and the harsh texture on the
face), a victim under the North Korean government. In contrast, the
New York Times picture cast him as a victor who defected the North
Korean government. The same pair of wooden crutches symbolizes his
triumph because he was almost rid of his disability and has regained his
mobile independence. His freedom from the country was reflected from
his freedom from disability; the prosthesis is therefore not a bodily aid,
but part of his new independent self.
A case of picturing an invisible disability was that of a defected sol-
dier who was shot when crossing the demilitarized zone between North
Korea and South Korea in November 2017. The highly dramatic event
captured international attention, but what sparked fascination were the
parasite worms inside the body, not the wounds on his body. A photo
released by the United Nations Command through Reuters (Persio 2018)
showed a motionless body on the ground slumping against a wall. The
image from the surveillance camera was grainy, making it impossible
to see the wounds and the bleeding. The wounded soldier was sent to
surgery and the worms inside his body became the objects of curiosity
for first the South Korean doctors, then the press. In a picture issued by
Yonhap (a South Korean news agency that mainly supplies news domes-
tically but also contracts with non-Korean news agencies and publishes
in multiple languages), a doctor stood next to a headless mannequin
pointed at a low-contrast, black and white picture on a screen on which
an image of four parasite worms were enlarged. The news story said that
the doctor found an ‘enormous number of parasites’ (Chandran 2017,
para. 2), ‘some as long as 11 inches’ (Choe 2017, para. 2) inside the body.
The mannequin was used to represent the soldier’s body on which two
big red dots were pierced at the left shoulder and the right arm signifying
the gun wounds. The North Korean body was not only made passive,
but indeed became an object that could be manipulated for medical pur-
pose and displayed for the public in the name of science. The disability
was implied to be temporary because medical treatment in South Korea
was advanced enough to undo the damages done by the North Korean
government to the citizens. At the next level of interpretation, woes of
North Korea (i.e. poverty, backwardness, hunger) could be eliminated
through medical knowledge and technological means in the capitalistic
south (Kim 2017).
The foreign objects (i.e. the worms) that had caused the disability pro-
vided a case of curiosity to South Korean doctors who were quoted to
have said they have only seen examples like these in school textbooks.
Even though parasites could be found in any human body, they are be-
lieved to be indigenous to bodies of the Other. But the worms may also
be seen as North Korea – an unknown, unseen foreign object to the
106 Micky Lee
South Korean public. Yet, like Ji’s missing leg, the worms are not clearly
shown; they are only grainy images. The worms are seen as concrete
evidence of North Korean government’s brutality; yet the evidence is
never clear enough.
Because the abled bodies in military marching are seen as bodies con-
trolled by the North Korean government, Western journalists challenge the
meanings that the North Korean government wishes the viewers to make.
Photojournalists point out the guise by presenting the ‘real’ bodies of North
Koreans. Because the country cannot be seen or known without the North
Korean government’s interference, defectors’ bodies serve as sites where
the brutality of the government can be known. While the missing leg and
the parasites testify the brutality, they are also obscured from views. This
contradiction will be explored after an analysis of news discourse.

Contextualizing Photojournalistic Images in

News Discourse
The meanings viewers make of the images of defectors’ bodies have to
be contextualized in the belief that the North Korean government owns
the bodies of the citizens. A news story reported that North Korean cit-
izens are indoctrinated to believe their bodies and labour belong to the
state so ‘dying for the Kims was the most honourable sacrifice one could
make’ (Park 2017, para. 2); ‘[prisoners] are told [that they] had been
offered redemption through labor for their country. Instead, they chose
to reject the generosity of the country’s government. After this they are
simply executed’ (Ferson 2012, para. 9). Academic studies have also sug-
gested that loyal citizens see themselves as mothers who selflessly sacri-
fice for fellow citizens and the country (Kim 2010, 2014; Ryang 2000).
State ownership of the bodies implies it can control and manipulate the
bodies. For the women soldiers, their bare legs are highlighted in pho-
tographs to show how the state can mould women’s bodies to reinforce
national ethnicity for nation-building.
In the Western press, the inability of the state to take care of its citi-
zens is illustrated by the illnesses, diseases and deformation experienced
by the defectors. The story of Ji Sung-ho, the defector with a prosthesis,
was told to many journalists who spared no details of the grotesque
circumstance under which he lost a leg. In order to search for food, Ji
jumped between freight trains to steal coal to sell in the black market,
he fainted and

when he awoke, he was lying on the tracks, his left leg dangling by
a tendon. He recalls trying to stanch [sic.] the gushing blood, before
realizing that three of his fingers had also been sheared off when a
train ran him over
Fishman (2018, para. 26)
 Knowing North Korea 107
Later he received no painkillers or blood transfusion during the surgery
while ‘the surgeon sawed off bones’ (para. 27). Ji described the same
scene in equally chilling details for the New York Times: ‘“I could feel
my spine rattling as [the doctor] sawed off my bones” […] “I could hear
blood dripping into a basin underneath. The doctor kept talking to me
to keep me from passing out”’ (Choe 2018, para. 10). Ji was not the
only defector who fully experienced the amputation procedure; another
defector who later became a South Korean paralympian had his leg ‘am-
putated the area below his left knee without anaesthesia. [The defector]
fainted because of the excruciating pain and lapsed in and out of con-
sciousness for about a week’ (Kim 2018, para. 13). The lengthy descrip-
tion of how a body became disabled showed the harsh living condition
and rudimentary medical care in North Korea.
The graphic description of how a body became disabled sharply con-
trasts the sterile photos of defectors with physical disabilities. While
news stories favour a grotesque description of the process of becoming
disabled, the photos only gave hints at the disability. The news pictures
lured the viewers to look at the defectors but the pictures refused to
reveal the disabled bodies. This contradiction may need to be situated
in a yet broader international political economic context by asking why
North Korea needs to be known.

Contextualizing the News Discourse in International

Political Economy
So far I have shown in a visual analysis that the abled bodies in military
parades are received with scepticisms from journalists who suggested
that the parades are façade staged by the government. Another visual
analysis of the disabled bodies of defectors in the Western press shows
that disabilities are concealed in pictures even though the written texts
vividly describe the process of becoming disabilities. To understand why
such contradictions exist, the Western news discourse needs to be con-
textualized in US-North Korea international relations.
North Korean leaders understand the power of images in estab-
lishing its international standing. Therefore, state-released pictures
overwhelmingly show nuclear facilities and military parades that are
deemed to show the nation’s strength. However, these hypermasculine
militant images were ridiculed by Western leaders who questioned the
rationality, sanity and even sexual potency of North Korean leaders. For
example, George W. Bush categorized North Korea as part of the ‘axis
of evil,’ announcing ‘North Korea is a regime arming with missiles and
weapons of mass destruction, while starving its citizens’ (Bush 2002,
para. 18). Further, Donald Trump called Kim Jong-un a ‘madman who
doesn’t mind starving or killing his people’ (Phillip 2017, para. 3) as well
as a ‘little rocket man.’
108 Micky Lee
The earlier quotes further dismiss North Korean leaders’ political
competency by implying they are not able to nourish the body of the
citizens because they channelled resources to develop nuclear weapons.
The ‘true’ North Korean bodies are then not believed to be the ones seen
in parades, but ones that are hungry and starving. Shim (2014, 29) wrote
that media images created an expectation for visitors to see starving peo-
ple in the streets: ‘it is only when starving people in North Korea can be
observed that life in the country can be said to be and feel real.’
In the news discourse, the starving body has also become the nation.
For example, North Korea was described as a ‘hungry nation’ (Wee
2018, para. 38) and a ‘starving country’ (Greenberg 2015, para. 33). If
the nation is starving because the citizens are believed to be hungry, then
the nation is also disabled because some defectors are shown to have
disabilities. North Korea is disabled because of its political economic
system: South Korea sees a communist nation, as much as a colonized
one, as disabled. If this is the case, the viewers are not only invited to
search from the defectors’ bodies evidence that shows the brutality of the
government but also asked to witness a starving and disabled country
embodied by the North Korean bodies.
When a body embodies a country, and when the body invites West-
ern viewers to look, this acting of looking is gendered. First, essentialist
thought sets up the binary oppositions between masculinity and femi-
ninity as well as the abled and disabled body while associating masculin-
ity with an abled body (Loeser, Crowley, and Pini 2017). An abled body
is seen to be the basis of autonomy and bodily agency, qualities that have
traditionally been associated with adult males. This is the image that
North Korea wishes to project to the world through the bodies of mili-
tary members. A person with a disabled body – regardless of the gender
identified by this person – is seen as less masculine and less an adult.
This is the image the Western press wishes to show through the military
members’ fragmented bodies and the defectors’ disabled bodies. When
the news discourse likens North Korea to be a person with a disability,
it denies the country’s full autonomy in making political economic de-
cisions. As a result, the international community often condemns the
government’s irrational decisions and tries to contain its madness by
extending measures such as trade embargoes. For example, after North
Korea’s first nuclear test in 2006, various UN sanctions banned the im-
ports and exports of military supplies, crude oil and minerals hoping to
starve off North Korea’s nuclear ambitions. However, Hastings (2016)
argued that North Korea’s testing of nuclear power is nothing but a
very rational political economic decision because it believes that nuclear
testing and economic development could go hand in hand. He reasoned
it by arguing that economic sanctions force North Koreans of all social
classes to engage in licit and illicit trades, which result in vibrant infor-
mal economies that rescue the populations from starvation.
 Knowing North Korea 109
The second way in which North Korea is gendered is through looking
at defectors with a disabled body. This act of looking exerts domination
on the person as well as the country that it embodies. As Sahn (2017)
suggested, disability of adult males renders the body as an object of the
gaze, effectively controlling the body through looking. Looking at fe-
males with a disabled body has less an effect of domination because as
Berger (1972) argued, women are socialized to expect their bodies to be
looked at and dominated. As suggested, women defectors are already
objects of desire in South Korean media. Their bodies are already as-
sumed to be more feminine because they are weaker and thinner (Epstein
and Green 2013). Popular fictions about the Korean War also labelled
Korean women bodies as primitive and childlike (Piao 2017). Disability
on the female bodies does not make them more an object of gaze because
being (North) Korean already made the body one.

Conclusion
The little information flowing out from North Korea made the every-
day life in this country a mystery. Photojournalistic images of military
parades and defectors are assumed to be some of the most reliable ac-
counts that tell the ‘truth’ of the country because of the common belief
that photographs don’t lie. This book chapter rejects this assumption by
looking at some abled/disabled bodies of North Koreans. It is argued
that North Korean bodies serve as sites of contesting meanings between
the North Korean government and Western journalists. The North
Korean government is well aware of the power of images, so it staged
military members of not only abled, but also identical, bodies to show
strength of the country. However, Western journalists see those images
as façade that conceals the truth of North Korea. Western journalists
inscribe a different meaning of the bodies intended by the North Korean
government by presenting the mass and highlighting certain body parts.
By doing so, they deny individuality and fragment the bodies.
Another way to reveal the truth concealed by the government is show-
ing the disabled bodies of defectors. Because defectors are seen to be free
from state control, their bodies are testimonials of the history and life
experiences in the country. However, the use of lighting, framing, and
camera angle create meanings of the disabled bodies: photojournalists
can present a defector as a victim in one photo but a victor in another.
Interestingly, even though disability made the defectors a subject of news
value, their bodily defects are hidden from the viewers. The pictures lure
the viewers to look but deny them a clear view at the same time.
The images of the defectors’ bodies, when contextualized in the news
discourse, further show that North Korean bodies became an embodi-
ment of the country. Because the country is believed to be an unknown
and unseen object, so the North Korean body offers an access to the
110 Micky Lee
country. In the news discourse, North Korea is often said to be a ‘hungry’
country because of its starving population. In the same way, the country
is also a ‘disabled’ country because of the number of defectors with dis-
abilities shown in the Western media. If North Korea is indeed seen as a
disabled nation, then the international community can deny political eco-
nomic autonomy to it, making the country a body/entity to be controlled.
The paradox of photographing the North Korean bodies with a disabil-
ity is that while the process of becoming disabled was vividly described
in words, the bodily defects were seldom clearly shown. If the body is
believed to be a reliable, if not the only, access to understand North
Korea, then why do the photographs conceal the bodies? This contra-
diction may be explained by taking the ontology and the epistemology
of North Korea into account. What if the ontology of North Korea is
secondary to the epistemology between the viewers and the object of the
gaze? In other words, it is possible that the more important question is
not what North Korea is, but how North Korea can be known. In this
book chapter, I have shown that photographing and looking at the bod-
ies are two methods of knowing, and both methods exert domination
from the photographer and the viewers on the subjects. In this vein, the
bodies with disabilities may not be too different from other images that
embody North Korea (such as young women, natural scenery) because
the objects to be looked at are less important than the power gained
through looking at them.

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7 Disabled Heroines
Representations of Female
Disability in Japanese
Television Dramas
Anne-Lise Mithout

Television dramas have been an important part of Japanese popular cul-

ture since the 1960s. During the High-Growth Period (1955–1973), they
were enjoyed primarily by a female audience, as the family model ‘male
breadwinner / housewife’ was becoming the norm and men had no time
to watch television (Sata and Hirahara 1991). Even though society has
significantly evolved since then, today television dramas appeal more
to women than men (NHK yoron chôsa bu 2018). This fact is clearly
understood by producers who consciously design programs primarily
intended for a female audience. Therefore, many dramas are centred
on female characters and deal with issues that are supposed to appeal
to women, such as romance, motherhood or the difficulties of work-
life balance. They pertain to a sub-genre called ‘home dramas’ (hômu
dorama), that is, dramas revolving around family issues.
Since the 1990s, television dramas have been less centred on the ide-
alized figure of the devoted housewife/mother (Gössmann 2000) and
feature heroines facing diverse kinds of situations. For example, the
heroines of NHK (Japan’s national broadcasting organization) morning
dramas

are able, through their own efforts, to transform a hostile environ-

ment. […] [The] burden which the heroine carries is that she has a
dream, and the dream involves contributing to society not simply as
a wife or mother, but in an ‘untraditional way’. The pursuit of the
dream takes various forms, but essentially it involves a consideration
of what it means for a female to enter a male world; and this involves
reflecting on the meaning of marriage and family for a woman who
has such a dream. The interest of the drama lies in whether and how
she will manage to achieve her dream and, at the same time, [start]
her own family: a family on her own terms, since it must accommo-
date her dream (Harvey 1998, 136).

In spite of the high standardization of the genre regarding formal as-

pects, Japanese television dramas deal with a large variety of social
issues, such as single-motherhood, teenage pregnancy or transgender
 Disabled Heroines 115
identities, in addition to more traditional themes like family, work and
love. Disability has long been one of these issues. However, until the
2000s, the representation of disability in Japanese popular culture (be
it television or cinema) was either a tragic one, especially involving im-
possible love stories, or one based on the supercrip stereotype (the most
famous being the blind swordsman Zatôichi1).
In a paper on the gendered representations of disability in Japanese
television dramas, Arran Stibbe (2004) noted that there were signifi-
cantly more dramas portraying disabled women, highlighting a ten-
dency to associate disability, powerlessness and femininity. Moreover,
he found that disabled characters were strongly differentiated based on
their gender. Disabled men were pictured as resolute and hard-working
(gambaru) while disabled women appeared as passive and resigned
(gaman suru): on both sides, disability was a factor reinforcing gender
stereotypes. In the case of female characters, disability, added to the tra-
ditional depiction of women as self-sacrificing and enduring, was used
to create an archetype: the persevering disabled women biting the bullet
while facing various hurdles.
Yet, during the past 15 years, the issue of disability has been brought
to the fore in Japan. Along with the signature of the Convention on the
Rights of Persons with Disabilities in 2007, disability policies have been
substantially reformed in fields such as education, welfare or employ-
ment. ‘Inclusion’ (inkurûjon) and ‘social participation’ (shakai sanka)
have become keywords of political action and have progressively be-
come more familiar to public opinion. Social participation has been
all the more emphasized that, in Japan, there was a historical tradition
of home confinement for people with disabilities. Indeed, until 1945,
special institutions taking care of disabled children were very rare and
families had no alternative but to take care of them in the family home.
Moreover, the social stigma associated to disability fuelled families’
reluctance to let disabled family members go outdoor, out of fear that
they would be seen. After 1945, movements of families emerged to re-
quest support from the State and the creation of special institutions.
Therefore, life in special institutions was socially perceived as a prog-
ress, as compared to home confinement, and independent living, even
though promoted by disabled people’s associations, remained very rare
in practice. Therefore, when the State started to promote ‘social partic-
ipation’ in the 1980s (but more visibly in the 2000s), it especially meant
more independent living (as opposed to life in special institutions),
more access to employment and more access to public space in general.
The Japanese Disability Rights Movement, formed by disabled people
themselves and sometimes strongly conflicting with parents’ associa-
tions, has been defending disabled people’s rights to social participation
since the 1970s, especially by promoting disabled people’s visibility and
self-assertion.
116 Anne-Lise Mithout
In the media, Paralympic sports has been raising more and more atten-
tion (especially in preparation for the 2020 Tokyo Olympic and Paralym-
pic Games) and the TV show ‘Baribara’ (standing for ‘Barrier-free variety
(show)’), broadcast on NHK since 2012, is aimed at promoting a more
positive vision of disability and the move towards a barrier-free society.
This chapter aims to investigate the representations of disabled women
in recent Japanese television dramas and to assess the extent to which
the ideas of inclusion and social participation have pervaded television
fiction. What is the image of disabled women constructed by Japanese
television dramas? Are they still anchored to the ‘biting-the-bullet’ ar-
chetype, or do they reflect a larger diversity of situations and characters
participating to society in different ways?
Television drama being an important part of Japanese contemporary
popular culture, widely consumed in Japan and abroad, academic liter-
ature on Japanese (or Asian) television dramas is abundant. It has ex-
plored in depth gendered representations (Matsubara 1979), especially
representations of women’s happiness and difficulties regarding love,
family and work-life balance (Harvey 1998; Gössmann 2000; Freedman
and Iwata-Weickgenannt 2011; Kim 2013; Poerwandari, De Thouars,
and Hirano 2014). It has also tackled less mainstream issues such as
the representation of non-normative sexualities (Min 2011) or postcolo-
nial perspectives on gender and ethnicity in Asian dramas (Yang 2013).
Yet the representation of people with disabilities has been overlooked
by this literature, except for Stibbe’s (2004) paper, mentioned earlier.
Conversely, research on the representations of people with disabilities
in Japan has dealt with literature (Hanada 2002), movies (Ban 2015),
media reporting on Paralympic games (Yamada and Ôno 2018) or the
TV show ‘Baribara’ (Ban 2018), but not with television dramas. This
chapter thus aims to fill this gap.

Research Data
For this research, I have studied four television dramas, depicting a
total of six female disabled characters: Ichi rittoru no namida (2005),
Daisuki! (2008), Kokoro no ito (2010) and Dokuhime to watashi (2011).
I have chosen these four shows because they are centred on a female
disabled character and each of them represents a different category of
disability (neurodegenerative illness, intellectual disability, deafness and
motor impairment).
I selected Ichi rittoru no namida because it is the most popular
Japanese drama centred on a disabled female character: broadcast on
an evening slot, it earned an average audience rate of 15.4% (while the
average audience rate for television dramas in 2005 was 14.2%). 2 The
book it was based on (Kitô 1986) was already a commercial success and
has also been adapted into a manga (Kitô and KITA 2015). Its success
 Disabled Heroines 117
has not been limited to Japan and it has been broadcast in many Asian
countries and subtitled in other languages such as English, French and
Arabic. Drawing on the success of the drama, the book has been trans-
lated in several languages too.
I chose Daisuki! because it was written in collaboration with activist
associations and is meant to provide a realistic vision of the daily life
of people with intellectual disabilities. I included Kokoro no ito and
Dokuhime to watashi even though their audience rates were lower, be-
cause their stories present some original elements, including the fact that
they feature more than one important female character with a disability.
The four shows were broadcast on national television.

• Ichi rittoru no namida (One Liter of Tears) (2005) is a TV drama in

11 episodes, directed by Murakami Shôsuke and Kinoshita Takao.
It is based on the diary of a young girl diagnosed with a neurodegen-
erative disease at age 15. It was first broadcast on Fuji Television on
Tuesday evening, 9 pm. It obtained a 15% audience rate.
• Daisuki! (I Love It!) (2008) is a TV drama in ten episodes writ-
ten with the collaboration of activist associations, directed by
Takemura Kentarô, Hori Hideki and Tsukahara Ayuko. It narrates
the daily life of a young single mother with an intellectual disability.
It is based on a manga by Aimoto Mizuho (published from 2005 to
2012) and was first broadcast on TBS on Thursday evening, 10 pm.
Its average audience rate was 11%.
• Kokoro no ito (Thread of Our Hearts) (2010), directed by Higashi-
yama Mitsuhiro, is a 90-minute long telefilm depicting the relation-
ship between a deaf girl and a young pianist living with his deaf
single mother. It was first broadcast on NHK on a Friday evening,
9 pm. It obtained an 8% audience rate.
• Dokuhime to watashi (The Poison Princess and I) (2011) is a soap
opera in 39 episodes, directed by Shimazaki Toshiki, Kaneko Yoshii-
chi and Sasaki Masayuki. It narrates the adventures of a young
wheelchair-using writer and her female editor and includes another
wheelchair-using female character, the writer’s childhood friend.
It was first broadcast on Fuji Television on weekdays at 1:30 pm. It
obtained on average a 4% audience rate.

This set of data involves fictional characters with various types of

impairment (hearing, physical, intellectual). Yet, despite the appar-
ent differences between them, all these characters are confronted with
fairly similar social situations, as would suggest the social model of
disability (Shakespeare 2013). This theoretical model, indeed, de-
fines disability not as a medical issue, but as a social one: the cause
of disability does not lie in the person herself, but in the environment,
and especially in the barriers that prevent people living with certain
118 Anne-Lise Mithout
kinds of conditions to participate in social life. Therefore, rather than
focusing on the specific situations experienced by people living with
different categories of impairment, the social model aims to give a gen-
eral theoretical framework that can apply to all ‘disabled’ people. Even
though this model has been criticized (Shakespeare 2013), notably for
overlooking the diversity of physical experiences lived by people with
disabilities, it has laid the ground for new perspectives on disability.
Based on this model, the notion of social participation has become a
keyword of disability policies.
The purpose of this chapter is to analyse the representations of dis-
abled people’s social participation conveyed by these four shows. The
concept of social participation has been widely used in the social sci-
ences and policy making. In a literature review on definitions given in
a broad range of disciplinary fields related to ageing, Levasseur et al.
(2010) conclude that, in current literature, ‘social participation can be
defined as a person’s involvement in activities that provide interaction
with others in society or the community.’ Using the term ‘societal in-
volvement,’ rather than ‘social participation,’ Badley (2008) defines it
as the performance of socially or culturally recognized social roles such
as work, leisure, parenting or community life. Moreover, Martin Ginis
et al. (2017) highlight the fact that social participation does not amount
to the level of performance of pre-defined social role; it must be con-
ceptualized in terms of subjective experiences, taking into account the
meanings and satisfaction that a person derives from participating.
Based on these definitions, I have drawn a typology in order to com-
pare the six characters featured in the above-mentioned dramas, using
six criteria. Five of them concern social roles played by the characters,
namely the roles of resident (in a specific living environment), worker,
family member, lover and friend. In order to investigate each charac-
ter’s performance of these roles, I have analysed the interactions with
other characters involved in these activities: accommodation (where the
character lives and with whom), occupation (what the character does
for a living or in daily life), family relationships (what kind of relation-
ships does the character have with members of her family), romantic
relationships (to what extent and with whom is the character involved
in romance) and friendships (does the character have friends and who
are they). The sixth criterion, which aims to provide an overview of the
character’s subjective experience of these roles, concerns the personality
traits that the character displays throughout the drama. The results of
this typology are summarized in Table 7.1.
In the following sections, I will present the results of this comparison,
first by investigating the depictions of disabled heroine’s sociability visi-
ble in these dramas, then by focusing on one specific aspect of social par-
ticipation: involvement in romantic and sexual relationships (sometimes
leading to motherhood).
Table 7.1 Typolog y of characters

Show I Love It! Thread of Our Hear ts The Poison Pr incess and I One Liter of Tears

Character’s name Yuzu Reiko Izumi Miki Erika Aya

Personality Joyful and Lives only for Joyful and Strong personality, Self-effacing, then Optimistic,
hard-working her son’s optimistic assertive, loud voice, obnoxious, then quieter smiling, hard-
career prone to laughter and working, friendly
anger
Accommodation Parents’ house Own house Parents’ house - Own apartment Parents’ house (including Parents’ house
- Flat sharing with her with her husband)
editor
- Hawaii
- Flat sharing again
Occupation - At first in a At a fugu Student/part- - At first writer - At first takes care of sick Student
sheltered factory time job at a - Then politician children
workshop hair salon - Then writer
- Then at a bakery - Then a politician’s wife
Family Life in a three- None except Mother and - Abandoned at birth be- - Parents (mother overpro- - Parents (both
relationships generation her son younger cause of her disability tective at first, then loving and
household: Akihito brother (both - Her mother turns out breaking up with the protective)
hearing) to be Erika’s father’s family) - Younger sister
- Very protective mistress, a writer - Brother - Younger brother
parents depicted as career-
(sacrificial focused, selfish and
mother) obnoxious
- Brother - In the last part of the
- Partner’s sister show, 5-year-old son
- Daughter
(Continued)
Show I Love It! Thread of Our Hearts The Poison Princess and I One Liter of Tears

Character’s name Yuzu Reiko Izumi Miki Erika Aya

Romantic Daughter’s father None since Reiko’s son - At first in love with her- At first in love with the A mbiguous
relationships (deceased) her divorce Akihito editor’s fiancé man responsible for relationship with
(which was - Then Erika’s brother the accident that a male classmate
directly (father of her son) caused her disability from ordinar y
related to - Then engaged to the ed- high school
her deafness) itor’s ex-fiancé (who
happened to be the
brother of the man
she loved at first)
Friendships - Friends at the None (some - Music band - Erika Miki (then breakup, - Classmates from
sheltered friendly - Friends from - Her editor then lukewarm ordinary high
workshop interactions special - Then women at the asso- reconciliation) school
- Then another with her school ciation where Erika’s - T hen classmates
mother at boss) - Colleagues at mother works at special
daughter’s the hair school
school salon
 Disabled Heroines 121
Sociable or Isolated: Typified Portraits
The most striking feature that appears when comparing these four
shows is the fact that two of them portray more than one female disabled
character. This is hardly a coincidence since, in both of them, the whole
narration is based on the contrast drawn between two disabled women.
In The Poison Princess and I, the two wheelchair-using characters,
who are best friends at first, are strongly typified. Miki is a very assertive
(verging on rudeness) young woman presented in a positive light despite
her apparent lack of manners, while Erika is portrayed as self-effacing
at first, yet progressively becomes jealous and vengeful. Following the
same pattern, Thread of Our Hearts is based on the opposition between
Reiko, a deaf single mother whose only desire is to push her son Akihito
to become a professional pianist, and Izumi, a deaf young girl who falls
in love with Akihito. Both narrations rely on a strong polarization of
characters, on a bright-versus-dark opposition, positive representations
being associated with sociability, while negative representations are as-
sociated with isolation.
Miki and Izumi live a life full of interactions with other people. They
are extroverts and self-assertive. Comparing how these characters are
introduced in both dramas offers a glimpse of their personalities.
Miki makes her first appearance in the first episode of The Poison
Princess and I. The beginning of the episode has been focusing on her
yet-to-be editor, Komugi. Komugi has just been dumped by her boy-
friend in a restaurant and is taking refuge in a wheelchair-accessible
bathroom to cry. Miki is waiting to use the bathroom and, after some
time, starts yelling and asks whether the bathroom is occupied by a dis-
abled person. When Komugi finally goes out of the toilets, Miki says
angrily: ‘So you really are a disabled person. Your disabilities are your
face and your personality […] I have seen you earlier when that stupid
man dumped you. The reason he dumped you must have been your face.’
The scene reveals that Miki can easily get angry at unknown people and
is ready to speak up when she feels disrespected. This form of verbal as-
sault against an unknown woman in tears shows that Miki has no mercy
for people who infringe on disabled people’s rights (here, the right to use
a wheelchair-accessible bathroom).
In Thread of Our Hearts, Izumi is introduced in a somewhat similar
manner. The hero Akihito, who studies to become a professional pianist,
sees a music band playing on the street. He thinks that the keyboard
player (Izumi) sounds terrible and mumbles ‘you suck.’ The young girl
seems to perceive his comment and gives him a very angry look. A few
days later, Akihito is waiting in line at the city hall when Izumi suddenly
appears and puts her cellphone in front of his eyes. She has written on
it ‘It was rude of you to say “you suck”’ and gives him an angry look
before going away. Then he runs after her, understands that she is deaf
122 Anne-Lise Mithout
(as someone in the administrative staff is talking to her in sign language)
and tries to engage in a conversation with her in sign language. At some
point he asks: ‘How come you can play music even though you can’t
hear,’ she answers: ‘how come you think I can’t?’.
Both scenes are strikingly similar: both Miki and Izumi engage in a
conversation with an unknown person and want to make them apol-
ogize for having disrespected them because of their disability. They
both assert themselves as people with disabilities who defend their
rights, be it the right to use barrier-free toilets or to play music as they
please. Yet, after being introduced as self-assertive, even aggressive,
they are depicted as progressively softening: the following episodes of
The Poison Princess and I revolve around Miki progressively becoming
friends with Komugi, while Thread of Our Hearts shows Izumi and
Akihito falling in love. In both cases, Miki and Izumi are outgoing and
sociable characters: they do not hesitate to make the first move towards
unknown people (including through verbal assault or bursts of anger
when they feel disrespected). They have both disabled and non-disabled
friends.
Quite on the contrary, Erika and Reiko are depicted as shy, isolated
and ashamed of their disabilities. Erika lives with her family, overpro-
tected by her mother. As an occupation, she helps her mother who works
in a nursing home for sick children, but she hardly goes out or does any
activity of her own. She has no friend of her age, but Miki. Reiko is a
mature woman living in her own house; yet she has no friends either:
deafness means to her a complete inability to communicate with others,
except for her son who can speak sign language and acts as an inter-
preter between her and the outside world. It is quite remarkable that,
although she is said to have studied in a special school for the deaf, she
has no deaf friend with whom she could speak sign language. In her
case, deafness is depicted as a symbol of absolute loneliness. She is por-
trayed not only as the only deaf person in her surroundings, but also as
avoiding contacts with other deaf people, thus refusing to embrace her
own identity as a deaf person.
Therefore, in both dramas, pairs of disabled characters seem to be
constructed on a binary opposition: ‘positive character, extrovert and
sociable’ versus ‘negative character, introvert and isolated.’ In this
sense, the idea of social participation is present in the narratives: in
each drama, one character can be said to be participating to society
(as an individual involved in various types of relationships with dif-
ferent people), while the other is depicted as isolated (and suffering
from loneliness). Social participation, in the form of interactions and
relationships, is thus presented as the best form of life experience for
disabled people, leading to happiness while isolation leads to suffer-
ing. Showing representations of active, extrovert and socially involved
 Disabled Heroines 123
people with disabilities, as opposed to characters experiencing disabil-
ity as unhappiness and isolation, these two dramas seem to embody one
of the mottos of the Japanese Disability Rights Movement, that is, to
refute the widespread perception of disability as sorrow and loneliness
(Yokozuka 2007).
In the two dramas that feature only one disabled character (I Love
It! and One Liter of Tears), the same positive pattern can be found.
Heroines are sociable, liked by many and experience at the same time
relationships with disabled and non-disabled friends. With disabled
peers, they can share their experiences and difficulties. With non-
disabled friends, they are able to participate in a wider range of social
activities.
The message that is conveyed through these six characters is therefore
that isolation is the worse curse, while any difficulty can be overcome if
tackled collectively. This depiction is consistent with the fact that, since
the 1970s, the Japanese Disability Rights Movement has been criticizing
the social norm viewing disability as an individual tragedy (Yokozuka
2007; Mithout 2020a). Activists have been arguing for an increased con-
sideration of the social dimensions of disability (and so even before the
introduction of the Western social model of disability) (Sugino 2007,
219–23). More precisely, they have been campaigning in two directions:
first, in compliance with the Western social model, for an inclusive so-
ciety, especially based on universal design, that would eliminate barri-
ers to disabled people’s participation and second, for the recognition of
disability as an individual particularity (kosei), an identity that can be
proudly asserted,3 and for the need to promote a society based on mu-
tual understanding and support (rather than medical rehabilitation of
‘deviant’ individuals). Therefore, the representations of disability shown
in the four dramas appear to take this claim into account, through ide-
alized depictions of characters who are not ashamed of their disability,
lead fulfilling social lives and have happy interactions with both disabled
and non-disabled people. These depictions are reinforced in two dramas
by the contrast drawn between the heroine and another disabled charac-
ter depicted as isolated and sad.
Therefore, social participation, in the sense of involvement in various
social roles and relations with others, is pervasive in the four dramas.
The four heroines are presented as ideal disabled persons participating to
society in various ways, especially through work (all of them have jobs)
and friendships. The four shows depict at the same time the need for
non-disabled people’s understanding and support and the importance
of community links with disabled peers sharing the same difficulties.
Even though positive characters are fitting relatively well in mainstream
society (especially in ordinary workplaces), some narratives emphasize
the importance of places such as special schools or sheltered workshops,
124 Anne-Lise Mithout
to create a sense of belonging and identification to a community of peers.
In this sense, these dramas depart from the promotion of an all-inclusive
society where segregated spaces would disappear.

A New Social Role: Disabled Women as Lovers

As mentioned in the introduction, romance is a recurrent theme in
Japanese TV dramas; therefore, it should come as no surprise that dis-
abled heroines, too, are portrayed as being (or having been) involved in
romantic relationships.
However, the depiction of disabled women as lovers is in fact a new
theme on Japanese TV. Indeed, in Japan (as in many other countries), dis-
ability has long been associated with asexuality, be it for men (Yokosuka
1999) or for women (Asaka 1993; Mithout 2018). Women face a dou-
ble de-sexualization, as women and as disabled persons. Indeed, women
(disabled or not) are perceived as a mirror for male desire and not as
actively desiring beings. Contemporary Japanese erotic culture is filled
with representations of women as young, innocent, vulnerable, irrespon-
sible (Giard 2006, 12). Women in general tend to be considered as sexual
objects, not as sexual subjects. Yet, in the case of disabled women, even
passive sexualization hardly occurs. First, because women with disabil-
ities do not fit into the model of the ideal wife, that is, a woman that
would be able to carry out house chores, and are therefore not perceived
as potential partners for a heteronormative relationship (Asaka 1993,
180). Second, because women who do not meet mainstream beauty cri-
teria do not fit into the model of the ideal lover. Even though a fetishism
attached to disability can exist, and even though disabled girls, embody-
ing the ideal of the vulnerable woman, can be sexualized as super-passive
objects, the reality experienced by most disabled women is one where
sexuality is tabooed (Asaka 1993; Mithout 2018).
Therefore, until recently, TV shows featuring female disabled charac-
ters tended to portray them either as non-sexual beings or as experienc-
ing an impossible love for a handsome non-disabled young man. Love
stories involving a female character with a disability had every chance
of being tragic, as disability appeared as an unsurmountable obstacle to
romantic and sexual fulfilment.
In striking contrast to this image, the four TV shows studied here all
present characters who have romantic and sexual relationships, either
with disabled or non-disabled men. The only story that clearly pertains
to the tragic style is Reiko’s, in Thread of Our Hearts: 20 years before
the beginning of the plot, she was briefly married to a man (who became
her son’s father), but he eventually left her to marry a hearing woman
(with his family’s strong approbation). After the tragic end of this affair,
Reiko never had a relationship again. In her own words, she became
‘a coward’ regarding love. Yet, this story is said to have happened in a
 Disabled Heroines 125
distant past, and Izumi, the deaf young girl, strongly opposes this way
of thinking. In a confrontation scene, Reiko and Izumi fight over Izumi’s
ability to make Reiko’s son happy, Reiko revealing that she has fully
internalized the prejudice stating that a deaf woman is not able to make
a hearing young man happy. The scene takes place at a restaurant and
both characters talk in sign language.
(Reiko) – Now, the most important thing for him is piano. He’s trying
to make it in a world that neither you nor I can touch.
(Izumi) – A world that we cannot touch?
(Reiko) – We cannot hear the sound of his piano.
(Izumi) – I heard it! Only you can’t hear it. Only you coward can’t
hear it.4
Indeed, scenes involving Izumi and Reiko’s son Akihito show them
having fun, sharing thoughts and emotions, and even enjoying the
rhythm of music together. Their relationship, based on mutual under-
standing, is nothing like a tragedy. The confrontation between Izumi
and Reiko aims to show that Reiko’s story should not happen anymore,
in a world where disabled people are free to make their own choices,
even when not fitting with mainstream criteria. While Reiko has inter-
nalized prejudices against a disabled women’s ability to live fulfilling
romantic relationships, Izumi embodies a message of hope by champi-
oning the idea that disabled and non-disabled people can communicate,
connect with each other and share love and emotions.
Signs of a tragic pattern can be seen in One Liter of Tears too. As
Aya’s disease progresses, her relationship with a male classmate becomes
progressively hopeless. However, it is noteworthy that, in the book the
show is based on, there was no mention of any romantic feeling whatso-
ever. It was in fact highly paradoxical that the book’s postface, written
by one of Aya’s doctors, revealed that she had fallen in love with a young
intern working at her hospital, while the diary, which was supposed
to reveal her heart and secrets, completely omits this dimension. This
leads to the hypothesis that her manuscript text has been edited, possi-
bly to comply with the normative model of the asexual disabled young
girl (M ithout 2020b). Yet, in the drama adaptation, a male character
has been created so that the fictional Aya lives a form of love story,
even though they are never shown kissing or explicitly confessing their
feelings. Aya’s disease is an obstacle to their love, but only to the extent
that the perspective of her early death makes it impossible for them to
imagine a future together. Before they learn about its lethal character,
they flirt and go out on dates, so that her being in a wheelchair is not
presented per se as a problem for their relationship. Quite on the op-
posite, he is devoted to supporting her and demonstrates a persistent
commitment to her. But on episode 11, Aya’s father comes to him and
says ‘I am very grateful for what you have done for all this time. So, from
now on, live your own life, the best you can.’ He is therefore suggesting
126 Anne-Lise Mithout
that there is no future in the boy and Aya’s relationship, and that the boy
should think about himself first, instead of wasting his energy in caring
for a disabled girl with a lethal disease. Yet the boy chooses to continue
seeing Aya. This scene shows that, for him, neither Aya’s disease nor her
family’s opposition to their relationship is sufficient reason for breaking
up with her. Therefore, Aya is shown as inspiring him with absolute love
and devotion, thus as a suitable partner in his eyes, even though her
own parents disagree with this view. In this sense, the same pattern as
in Thread of Our Hearts can be found: the younger generation feels free
to love who they are attracted to, regardless of disability, whereas the
parent generation is opposed to such unions and argues that a disabled
girl cannot bring happiness to a disabled young man. Even though One
Liter of Tears ends tragically (due to Aya’s death), these two dramas aim
to send an optimistic message concerning the possibility for disabled
people to get involved in romantic relationships.
While Thread of Our Hearts and One Liter of Tears present teenag-
ers’ perspectives on romance and elide sexual issues, The Poison Prin-
cess and I and I Love It! deal with adult heroines and explicitly tackle
sexuality. In The Poison Princess and I, Miki receives overtures from
Erika’s brother, whom she eventually falls for. Their first sexual inter-
course is an important element of the plot: the scene takes place at the
end of episode 25. Erika’s brother Jun has confessed his love for her
several times, but she has always laughed at his declarations and acted
as if they were jokes. The scene takes place in Miki’s room, where they
talk about Erika. They alternatively discuss seriously and make jokes. At
some point, Jun says:
(Jun) – I will protect Erika. But I will look after you too. I could
make a living as a guitarist and provide for you, right? (laughter)
(Miki, laughing) – You idiot! Don’t say stupid things like this! […]
(Jun, in a serious voice) – I’m serious.
(Miki, embarrassed) – Is that so? Thank you. […] (Laughter) You’re
an idiot, really. (she slaps his head softly, they laugh)
(Jun) – Well, I should go now.
(Miki) – Are you in a hurry? […]
(Jun) – Not really, but…since we are alone here, it is embarrassing…
(Miki) – It is embarrassing?…It is ok if we do it… […] If you are
sincere, I’m ok to do it. I love you. Even before…But if I had more
self-confidence…With this body…But can you take me in your arms?
(Then they are shown in bed, kissing)
This scene reveals that Miki has, in fact, been in love with Jun for a
long time, but has refused to believe his declarations, out of fear that he
was not sincere. She is suddenly shown as vulnerable, in contrast with
her usual self-assertive personality. The reason why she was protecting
herself is that she was not sure that the man she loved could really love
her back in spite of her disabled body. Yet, Jun’s love is sincere, and he
 Disabled Heroines 127
loves her for who she is. This scene, though sounding rather cliché, is
original in the sense that it explicitly shows a disabled heroine as having
sexual desire for a non-disabled man and being desired back. Disabil-
ity is thus no obstacle to love nor to sexuality. Yet, it appears clearly
that, in this case, sex is strongly associated with love: Miki feels ready
to have sex with Jun only to the extent that he has feelings for her. In
that sense, she fits in the mainstream model of female sexuality, that is,
strongly connecting sex and love. The same pattern can be observed in
I Love It!, where Yuzu explains that she and her partner had sex be-
cause they wanted to ‘create a family.’ In both cases, disabled women’s
sexuality is shown as fitting in the heteronormative model that associ-
ates female sexual desire with the desire to be in a stable relationship and
to start a family.
Moreover, although these examples shed light on the increasing ap-
pearance of love stories involving disabled women in Japanese TV dra-
mas, it is striking that, in all cases, disabled female characters are played
by non-disabled actresses who fit into the Japanese ideal of ‘cuteness.’
Since the 1980s, ‘cute’ (kawaii) has become a major aspect of Japanese
popular culture in a broad range of fields, be it food, clothes, handwrit-
ing or idols, a boom that can be related to a desire to escape the harshness
of social realities (Madge 1998; Kinsella 2013). As shown by Riessland
(1998, 149) in the case of advertising, ‘the power of cuteness is not only
able to make the potentially dangerous appear less so, it also permits
its user to overstep the limitations of social convention and to speak or
write about that which is treated as taboo.’ In the case of the TV dramas
studied here, embodying disability through cute young girls appears as
a way to evacuate the uncanny dimension of disability (Stiker 2007) and
to deal with a taboo, disabled women’s sexuality, within the boundar-
ies of a highly codified cinematographic genre. Indeed, TV drama, as a
genre, is built around the popularity of young female actresses such as
Karina, the model and actress who plays Yuzu in I Love It!, or Sawajiri
Erika, the actress and singer who plays Aya in One Liter of Tears. These
actresses have played an essential role in the popularity of these dramas.
Therefore, it appears that these dramas use the cuteness (and popularity)
of actresses to introduce the issue of disability on TV, rather than try to
provide a realistic representation of ordinary disabled women’s bodies.

Disabled Women as (Single) Mothers

As a consequence of these love affairs, more than half of the characters
studied here become mothers. This is all the more surprising that ma-
ternity for disabled women remains a form of taboo. Under the eugenic
protection law (yûsei hogo hô) (1948), forced sterilizations of people
with certain types of disabilities have been carried out for several de-
cades. The law was gender-neutral, yet most victims turned out to be
128 Anne-Lise Mithout
women, especially women with mental disabilities (Toshimitsu 2016).
Even though most cases occurred in the 1960s and 1970s, the law was
abolished only in 1996, after the situation had been exposed by activ-
ists in international organizations (Iida 2004). As research is digging
further into this issue, it is revealed that, at the time when they had
sterilizations surgery, a number of victims were not even aware of their
reproductive capacity (Toshimitsu 2016). Indeed, education in special
school often avoids discussions of reproductive and sexual issues, under
the principle of ‘not waking up the sleeping child’ (Hattori 1989). Sex
education in Japan in general is limited and information conveyed to
children with disabilities remains scarce even today, which contributes
to a low level of knowledge about sexual and reproductive issues among
disabled people.
Considering the taboo on disabled people’s reproduction, it is striking
that three out of four TV shows studied here feature disabled heroines
who have children.
Reiko’s case, in Thread of Our Hearts, seems somehow specific to
the extent that her pregnancy dates back to 20 years before the begin-
ning of the plot. Therefore, the story revolves around her dealing with
a grown-up son, not with child-rearing itself. Yet, during her confron-
tation with Izumi (quoted earlier) she explains that, after her partner
broke up with her,

‘my husband and my stepmother tried many times to steal him from
me. They said I could not raise a child because I was deaf. There-
fore, I worked very hard. Because if I had shown any weakness, they
would have taken him away from me.

Her story is thus representative of the social stigma associated with dis-
abled women’s motherhood and the social perception of their (in)ability
to be good mothers.
At the beginning of I Love It!, Yuzu is in a relationship with a young
man from the sheltered workshop she works at. I Love It! is thus the
only drama in our sample that features a relationship involving a dis-
abled man. However, this relationship ends in the first episode, as he
passes away after getting hit by a truck. At the end of episode 1, as Yuzu
is brought to the hospital after fainting, her family discovers that she is
pregnant. Their reactions make explicit that they had not believed the
lovers capable of having sex (‘I never imagined they went this far’ says
even the director of the sheltered workshop). This appears as a message
directed to the viewer (who is supposed to share the same reaction),
asserting the existence of intellectually disabled people’s sexuality, in op-
position to widespread beliefs. Yuzu’s mother is very shocked and wants
her daughter to have an abortion (fearing that Yuzu will not be able to
take care of a child). The director of the sheltered workshop explains:
 Disabled Heroines 129
‘A lot of people like them marry and have children. […] Will you listen
to Yuzu’s feelings?’. As Yuzu says ‘I will give birth,’ her mother pro-
gressively changes her mind, thus acknowledging her daughter’s right
to make her own decision regarding motherhood. Then the whole story
revolves about the difficulties Yuzu faces in raising her daughter as a
single mother with an intellectual disability.
Miki’s case, in The Poison Princess and I, is different, to the extent
that her son’s father (Jun) is still alive and willing to see her, yet for an
unclear reason she does not want him around for some time. Her rea-
sons for shutting him out are unclear: it seems that she is not confident
in their relationship and prefers to rely only on herself. But after another
few twists, she finally decides to take him back as a partner and a father.
In these dramas, motherhood with a disability is thus strongly as-
sociated with single motherhood, be it chosen or not. The three shows
deal with the difficulties of raising a child as a disabled single mother.
In Reiko’s case, single motherhood is another dimension that reinforces
Reiko’s isolation. Yet, Yuzu’s and Miki’s cases present a more positive vi-
sion of single motherhood, to the extent that, no matter what difficulties
they go through, they are always supported by their close ones.
In fact, ‘close ones’ always means ‘other women,’ as male characters
are little developed and always presented as absent, busy with their
careers and inefficient regarding family matters. Yet, let us mention
that the absence of male characters is not specific to drama dealing
with disability. As mentioned in the introduction, TV drama is a genre
that has boomed during the High-Growth Period, essentially thanks
to an audience of housewives. The sub-genre of home drama, that is,
dramas dealing with family and daily life issues (as opposed to other
sub-genres such as detective stories or historical dramas), aims to reflect
the audience’s concerns and realities, including having a husband who
dedicates most of his time to his company. In that sense, dramas deal-
ing with disability are no different from other home dramas: they take
place in a prevailingly female world and emphasize women’s solidarity
in solving daily life problems. But they show disability as a situation
where the need for mutual support between women is even more crucial
than usual.
In I Love It!, Yuzu finds support especially from her mother, who
is a paradigmatic sacrificial mother as can often be seen in Japanese
home drama, which have often be said to be ‘mother-centered’ (Sata and
Hirahara 1991, 117–22). The heroic grandmother always manages to
solve whatever problem Yuzu falls into. Yuzu’s motherhood could have
been depicted as a symbol of adulthood and emancipation. Motherhood
in Japan being socially perceived as a key step in the transition to adult-
hood, the story could have shifted the focus from her being a daughter (a
child) to her being a mother (an adult). Yet, on the contrary, it actually
turns out that her pregnancy reinforces her dependency towards her own
130 Anne-Lise Mithout
family, since the show constantly depicts her as relying on her mother’s
support. In fact, the worse difficulty she faces throughout the story is
not about child-rearing itself, but about dealing with her mother getting
sick. The plot of the final two episodes revolves around this idea: Yuzu’s
mother is at the hospital and she discusses with other characters whether
they should let Yuzu know about her disease (which might be cancer). At
first, they try to simply hide from Yuzu the fact that her mother is sick,
so that she can go on with her daily life without worrying. But finally,
Yuzu finds out about her mother’s sickness and becomes very upset and
sad. Her mother makes her swear that, whatever happens, she will con-
tinue to go to work every day, because ‘for you (Yuzu), the most import-
ant thing is that you have become able to work.’ Several other female
characters promise that they will take care of Yuzu. But in the end, the
mother gets better and comes back home, to everyone’s relief. Yet, these
scenes show that, in any case, support from her mother or a substitute
mother is absolutely necessary for Yuzu.
In The Poison Princess and I, Miki’s case is different, to the extent
that she has no family (she is said to have been abandoned at birth be-
cause of her disability). She receives help mostly from another female
character who takes the role of a substitute mother, her editor. Yet, in
both dramas, the representation is the same: a disabled single mother
cannot raise a child without support from other (non-disabled) women.
Therefore, these three dramas tackle a subject little dealt with on
Japanese TV, motherhood for women with disability, breaking the taboo
surrounding disabled people’s sexuality and reproduction. However, in
spite of the originality of the subject, they follow very classical patterns
in home drama. They present family situations where male characters
are underdeveloped, and in two cases the family is run by a typical
‘sacrificial mother’ character (while in the third one the heroine lives in
fear of a distant mother-in-law). Disabled mothers are thus shown not as
autonomous and emancipated characters, but rather as daughters relying
on their own mothers (or mother substitutes)5 who are the true, though
discrete, heroines (following the classical pattern of mother-centred dra-
mas where the mother, whose efforts hardly receive any recognition, is
trying her best to hold the family together).
As discussed earlier, these dramas argue for the importance of mu-
tual support: one should add that they are an ode to female solidarity,
anchored in the perception of motherhood as an entirely female issue.
Moreover, one can say that they aim to touch viewers by making them
sympathize not only with the disabled character herself, but, maybe
even more, with her mother. This is in fact a very classical perspective
when discussing disability issues in Japan, since the voice of people with
disabilities in the public sphere has long been represented by parents’
associations.6
 Disabled Heroines 131
Conclusion
The representations of female disability in these dramas are ambivalent.
On the one hand, one can observe that female disabled characters are
represented as participating to society in various ways. They have an
occupation, a fulfilling social life and love affairs. Some of them even
become mothers, which remains, in Japan, a social symbol of successful
femininity. On the other hand, in spite of its apparent originality, the
topic of disability is in fact treated in these shows in a very traditional
way, meeting the classical codes of Japanese TV drama (absence of men,
female solidarity against daily life difficulties, cute young girls, sacrifi-
cial housewives…).
These dramas do show a positive image of disabled people’s social
participation. Some of them even provide a realistic depiction of disabled
women’s lives. In that sense, they can be said to inform the audience
about disability and to convey positive messages concerning disabled
people. However, as they fit perfectly into the strongly codified genre
of TV drama, their main purpose appears to be something else than
the normalization of disabled female characters. One can see in them a
tendency to use disabled women as metaphors of the female condition in
general, weighed by dilemmas and norms imposed by society. The depic-
tion of disability is not that of an exceptional or unprecedented situation.
Disability is rather presented as a factor accentuating other difficulties
shared by many (disabled and non-disabled) women: work, work-life
balance, relations with parents and in-laws, love, (single) motherhood…
Belonging to a genre that is meant to echo women’s concerns, these
dramas do not aim to promote a new vision of disability per se. They
are rather using disability as a fictional tool symbolizing, as an extreme
case, social constraints weighing on all women. Therefore, rather than
representing disabled people’s social participation, these dramas repre-
sent social barriers faced by Japanese women.

Notes
1 Zatôichi is a fictional character in a 26 movie series produced by Daiei Film
between 1962 and 1989, and a movie directed by Kitano Takeshi in 2003.
The movies take place in the Edo period and Zatôichi is a blind itinerant
masseur and a highly skilled swordsman.
2 All data on audience rates have been found on the database Audience Rating
TV: https://artv.info/.
3 Worthy of notice is the fact that not only the deaf movement but also
wheelchair-users have been using this argument. The association Aoi shiba
no Kai, pioneer of the Japanese Disability Rights Movement, consisted of
people with cerebral palsy and played a key role in advocating for the need
for disabled people’s self-assertion, in a context of eugenic policies.
4 All the dialogues quoted in this paper have been translated by the author.
132 Anne-Lise Mithout
5 Or, on the contrary, as daughter-in-law fearing for their mother-in-law’s
judgement, as in Reiko’s case.
6 This is the reason why a clash occurred in the 1970s when associations
of disabled people themselves started to make their own voices heard and
sometimes strongly opposed parents’ claims (Hori 2014).

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8 The Education of Children
with Disabilities in South
African Online News
Reports
Elizabeth Walton and Judith McKenzie

Introduction
As we start to write this chapter, a group of South African people with
disabilities and disability rights activists is making a submission to the
United Nations (UN) Committee on the Rights of Persons with Disabili-
ties in Geneva. The group is arguing that the South African Department
of Basic Education (DBE) is not doing enough to secure the realization
of the right to an inclusive education, as envisaged by the UN Conven-
tion on the Rights of People with Disabilities. South Africa signed this
Convention and the Optional Protocol in 2007 and in so doing com-
mitted the country to recognizing the rights of persons with disabili-
ties to education and ensuring ‘… an inclusive education system at all
levels’ (UN 2006, 24 (1)). The group submission to the UN committee
echoes the findings of a Human Rights Watch report that was published
in 2015. Titled ‘Complicit in exclusion,’ the report presented evidence
that 500,000 children with disabilities are not in school in South Af-
rica. These children experience discrimination in attempts to enrol in
schools and in accessing ‘reasonable accommodations’ within schools
(Human Rights Watch 2015). This is despite South Africa’s commitment
to an inclusive education system, envisaged in the 2001 White Paper Six
on Special Needs Education (Department of Education (DoE) 2001).
The press has been quick to report on the failure of the government
to provide education for children with disabilities, and our concern in
this chapter is to explore how online newspaper articles portray this
issue. Drawing on analytical tools derived from a broad critical theory,
we advance a resistant reading of articles published between 2013 and
2018. We argue that these articles rehearse negative stereotypes about
children and young people with disabilities, co-opting them into the
journalistic expose of individual tragedy neglected within an uncaring
system, but without framing the issues in wider systemic failure and
the socio-historical context of apartheid. This sets up a vicious cycle
where children who have impairments are disabled by an environment
of systemic neglect. To provide some context of the conditions that have
created such a mix, we first discuss the history of educational provision
for children with disabilities in South Africa.
136 Elizabeth Walton and Judith McKenzie
Education of Children with Disabilities in South Africa
The apartheid government which came to power in South Africa in 1948
inherited legislation which related to ‘The education of the handicapped
child’ (Republic of South Africa (RSA) 1948, section 1). This legislation
laid the groundwork for a medicalized approach to separate special ed-
ucation for children with disabilities. Section One of The Act of 1948
defined the ‘handicapped child’ as one who deviates from the majority,
making disability a deviant characteristic. The focus was on what the
child cannot do (i.e. benefit from ‘normal’ instruction) and should not do
(attend ‘ordinary’ classes because it would be harmful to ‘him’ or oth-
ers). In the light of this, the 1948 Act made provision for ‘special schools
and homes for the classes of handicapped children’ (RSA 1948, Section
2(1)), with the assumption that different types of ‘handicap’ demanded
different schools. The government built on this 1948 Act with subse-
quent policies that secured special education for white children under
the auspices of a separate special education department in conjunction
with the four provincial education departments. Special education for
children of other races was handled by the education departments set
up for each race group and was not administered apart from regular
education. Very few special schools were built by these departments, and
most special schools that existed for black children with disabilities were
established and maintained by charitable or missionary organizations.
Specializing in teaching children with disabilities was not offered in the
black universities (Skuy and Partington 1990) and remedial teaching
only began to be offered to a limited extent in black schools in the early
1990s (Nkabinde 1993).
The result of these apartheid era policies was that the democratically
elected government of 1994 inherited an education system that was
highly fragmented, and which carried the legacy of inequitable and rac-
ist policies. The results of these policies included a large percentage of
children with disabilities out of school (in 2001 only 20% of all children
with disabilities were in special schools (DoE 2001, 38)); inadequate spe-
cialist school and staff provision for the whole population; existing spe-
cial schools clustered in former whites-only areas; and negative attitudes
towards people with disabilities. To address these issues, the unified,
non-racial Department of Education set up a commission to investigate
and make recommendations about special needs and support in educa-
tion. A major move in understanding support was the adoption of the
concept of ‘barriers to learning’ which framed disability as one of the
many barriers that children face in accessing quality education. While
disability was represented as an element of diversity, the distinction be-
tween intrinsic barriers to learning (organic and within the child) and
extrinsic such as poverty or an inflexible curriculum was maintained.
The commission’s report recommended the integration of the special and
 Education of Children with Disabilities 137
ordinary education system in a seamless educational support system,
and in 2001, White Paper Six: Special Needs Education: Building an
Inclusive Education and Training System was published.
White Paper Six (DoE 2001) sets out a framework for South Africa’s
education system to become inclusive. Built on constitutional values like
the right to education and freedom from discrimination, the White Paper
envisages an education system where difference is valued, participation
is maximized and diverse learning needs are met through changed atti-
tudes, behaviours and teaching methodologies. The binary distinction
between psychosocial barriers on the one hand and organic barriers on
the other was retained in considering these learning needs. Various strat-
egies were to be implemented to achieve this vision of inclusive educa-
tion, including improving special schools; converting some schools to
become ‘full-service schools’ with the capacity to include children with
moderate support needs; teacher education; and the development of sup-
port structures at various levels in the system. The strategy is predicated
upon the two pillars of (a) screening, identification, assessment and sup-
port (DBE 2014) and (b) curriculum differentiation to enable an effective
response to diverse learning needs (DBE 2011). The research literature
shows that the years since 2001 have seen some progress towards more
inclusive schooling (Walton 2011) but also significant evidence of the
non-implementation of the policy. Reasons for this are given as inade-
quate expenditure and poor resourcing; negative attitudes towards dif-
ference; teachers’ sense of un(der)preparedness for inclusive classrooms;
and an inflexible curriculum (Donohue and Bornman 2014). The imple-
mentation of policy has also demonstrated a complex practice around
disability where it has become less visible as a distinct entity but rather
as but one form of diversity to be dealt with through inclusive classroom
practice. However, disability also becomes highly visible through elab-
orate assessment and placement practices that ultimately serve to place
children with disabilities in segregated settings on the pretext of having
high levels of support (McKenzie, Kelly and Shanda 2018). Despite these
legislative and policy initiatives, the exclusion of children with disabil-
ities from schooling has continued (Fleisch, Shindler and Perry 2012),
and has become an issue of public interest, as evidenced by various news-
paper articles. This is not unique to South Africa, and news articles on
matters to do with disability have captured the attention of scholars.

Disability in the News

Media both reflect and reproduce extant societal attitudes towards and
ideas about disability (Phillips 2012). Media shape attitudes through
topic selection, i.e. what the article is about, where the article is found,
i.e. news articles or features like letters and reviews, and what termi-
nology is used (Wilkinson and McGill 2009). It has been shown that
138 Elizabeth Walton and Judith McKenzie
media representations of people with disabilities are problematic (Zhang
and Haller 2013), either because people with disabilities are invisibilized
or because the media perpetuate stereotypes. Barnes (1992) notes com-
mon media stereotypes of disabled people as pitiable and pathetic, as a
burden, as incapable of participating in community life and as victims
of violence, amongst others. These stereotypes have been linked to a
medicalized view of disability, where the focus is on people’s needs for
medical support; to a social pathology model, which portrays people
with disabilities as socially disadvantaged and in need of social support;
and to a ‘supercrip’ model, which describes people with disabilities as
superhuman, overcoming impossible odds (Clogston 1990 in Zhang and
Haller 2013). Wood (2012) further notes that the media tend to focus on
either the over or under achievement of people with disabilities, thereby
obscuring their actual experience. This serves to distance people with
disabilities from the consumers of media who come to perceive disability
as a challenge to be overcome or succumbed to, rather than a complex
social process. In South Africa, the ‘Ag shame’ category of stereotype
has been identified (McDougall 2006). Named after a local idiom that
signifies tragedy and pity, this stereotype captures ‘that disability is al-
ways pathetic, that disability is dependent. It’s presented as disabled
people are very innocent, and very much deserving of one’s sympathy’
(McDougall 2006, 388). The ‘Ag shame’ stereotype has elements of the
social pathology model, in that people with disabilities are cast as need-
ing support because of their own helplessness.

A Critical Approach
Our approach to the news articles is informed by analytical traditions
that emanate from critical theory, which ‘insists on revealing power dy-
namics’ (Meekosha and Shuttleworth 2009, 59). These analytical tra-
ditions are critical disability studies and critical literacy. They have in
common a ‘critical distancing from, and then oppositional reengagement
with, the dominant culture’ (Brookfield 2005, 13). Critical disability
studies, says Goodley (2013, 2017), engages with the corporeality of dis-
ability and with inter/transsectionality, acknowledging the matrices of
power that dis/privilege various identity markers. It challenges ableism
and the hegemony of normative notions of what it means to be human
and resists the pathologization of difference. Critical disability studies
opposes binary thinking and is concerned with the complex ‘relational,
cultural and psychological implications of disability’ (Flynn 2017, 155).
In this sense it represents an evolution and increasing complexity of the
original formulation of the social model with its sharp divide between
impairment and disability and its strong historical materialist founda-
tion (Meekosha and Shuttleworth 2009).
The emphasis on cultural, psychological and discursive elements
of critical disability studies is not without its critics especially in its
 Education of Children with Disabilities 139
application in the Global South. Grech (2017, 18), for example, expresses
the view that:

Abstract projects [critical disability studies] …. may constitute a

gross offence to disabled people preoccupied with very material pov-
erty and oppression, for whom decolonisation is about freedom of
their land, labour, religion, knowledge and bodies, all of which are
historically referential.

We are acutely aware of this tension in our discursive analysis and keep
the material consequences of years of apartheid and continuing poverty
in our sights when engaging with the news articles.
Critical literacy refers to the ‘use of the technologies of print and other
media of communication to analyze, critique, and transform the norms,
rule systems, and practices governing the social fields of everyday life’
(Luke 2012, 5). The central tenets of critical literacy have been taken
up in analyses of verbal text, visual images and multimodal texts. These
approaches all work with the assumption that ‘… all texts are positioned
and positioning’ (Janks 2010, 61), and that this positioning has an effect
on readers. Exposing these effects is the task of the critical reader. There
is no ‘universal model’ (Luke 2012, 9) of critical literacy, or of the critical
analysis of texts, but many approaches reflect in some way Fairclough’s
(2001) Critical Discourse Analysis. This embeds texts within processes
and possibilities of production and interpretation, which, in turn, are em-
bedded in wider sociocultural practices (Fairclough 2001; Janks 2005).
These three layers offer ‘stages’ of analysis, first in terms of the descrip-
tion of the text in which its properties (linguistic and visual features) are
considered. The second stage is interpretation which refers to the inter-
action process between the participants (text producer and text analyst)
and the text. Third is the explanation stage. The objective of this stage is,

… to portray a discourse as part of a social process, as a social

practice, showing how it is determined by social structures, and
what reproductive effects discourses can cumulatively have on those
structures, sustaining them or changing them
Fairclough (2001, 135)

Critical disability studies informs the interpretation and explanation of

the texts we analyse, as we are particularly interested in how they work
to position disability within the wider South African discourses about
education and educational neglect. We are concerned to expose the ways
in which particular, taken-for-granted ways of viewing the world are
legitimated and habituated through the news articles. Some of these
taken-for-granted views include disability being regarded as ‘something
static, something beheld from afar, not complex, not shifting in mean-
ing’ (Biklen 2000, 339). Related to this unwillingness to engage with
140 Elizabeth Walton and Judith McKenzie
the complexity of disability is a simplistic notion that there are ‘two ed-
ucational systems – one for disabled students and one for everyone else’
(Erevelles 2000, 25).
In this chapter, we offer a resistant reading of selected news articles.
The idea of resistant reading is aligned to Freebody and Luke’s (1990,
13) fourth role of the reader, the ‘text analyst.’ The other roles are as
‘code breaker’ (8), ‘text participant’ (9) and ‘text user’ (10). The text
analyst is aware of how language and ideology work in the design of the
text to position both the topic and the reader, and understands how this
contributes to certain perspectives being built and reinforced. Resistant
reading of media also echoes Stuart Hall’s notion of ‘resistant specta-
torship’ (1973, in Tewell 2016). Resistant spectatorship understands but
opposes the intended messages of texts and challenges the dominant be-
liefs that the texts encode. The reader or viewer is strongly agentic in this
engagement with the text, and ‘reads a text against itself’ (Tewell 2016,
291). Janks (2010, 22) explains resistant reading as

The interrogation of texts …[that] implies that readers recognise

texts as selective versions of the world; they are not subjected to
them and they can imagine how texts can be transformed to repre-
sent a different set of interests.

Methodology
Our initial awareness of online news articles addressing the issue of the
education of children with disabilities in South Africa came from our
work in the field. Our concern about the ways in which the education
of children with disabilities was presented led to this more systematic
study. Based on the content of the articles we initially encountered, we
conducted a Google search with the search terms ‘news,’ ‘disability,’
‘special education needs,’ ‘education’ and ‘South Africa.’ We chose to
limit the date of publication to the five years prior to 31 January 2018 to
ensure that the analysis could be regarded as reasonably current and rep-
resents a time period in which inclusive education policy was well into
the implementation stage. This search yielded 28 articles from online
news sites. Due to the retrospective nature of the analysis, we limited
the work to online news articles, acknowledging that there may be other
articles in the print news which we could not easily access. We then fur-
ther restricted the search to free-to-read articles that were published in
English. We excluded items that were primarily multi-media, i.e. video
rather than text report, so the analysis was not done across genres. On
close reading of the content, further articles were excluded, based on
whether they were, in fact, about schooling for children with disabili-
ties. This process yielded 15 articles, which are presented in Table 8.1
together with available information on the publication. All links were
 Education of Children with Disabilities 141
Table 8.1 A nalysed articles from 31 January 2013 to 31 January 2018
News platform
Mail & Guardian Online
Describes itself as ‘A pan-African daily
online newspaper, published all day, all
week, aimed at serious and not-so-serious
readers’
The newspaper describes its readers
as ‘Broad-based readership of South
Africans and Africans who prefer their
daily news to be indepth and insightful.
Plus a large readership abroad of expats, Struggle continues for disabled children.
would-be tourists, foreigners with a
special interest in Africa and more.
A generally argumentative bunch’
Source: https://mg.co.za/page/about-us
HeraldLIVE is the online presence of The
Herald, self-described as ‘the voice of
Nelson Mandela Bay’ in the Eastern Cape www.heraldlive.co.za/news/2017/03/06/
of South Africa. HeraldLIVE publishes
‘fresh news, insights, opinions, sport and
entertainment reports all day long, seven
days a week on a fully mobile responsive
website’
Source: www.heraldlive.co.za/about-us/
SowetanLIVE says that it is, ‘SowetanLIVE, ‘I want to read, write,’ Bongekile Macupe
the website of the Sowetan, the English-
language South African daily newspaper
that started in 1981 as a liberation
struggle publication … The website
carries content from the print edition of
the Sowetan along with unique online-
only content … general and political
news; entertainment and celebrities;
soccer and other sport … It is one of
South Africa’s largest online news
publications, with more than 1.5-million
readers per month’
Source: www.sowetanlive.co.za/about-us/
Articles by URL
No place for disabled children in KZN’s
rural schools. Victoria John
https://mg.co.za/article/2014-10-17-no-
place-for-disabled-children-in-kzns-rural-
schools
Learners with disabilities need tech. Lloyd
Gedye
https://mg.co.za/article/2016-05-27-00-
learners-with-disabilities-need-tech
Victoria John
https://mg.co.za/article/2015-02-06-
struggle-continues-for-disabled-children
Disabled pupils’ hostel of horror. Victoria
John
https://mg.co.za/article/2013-08-30-
disabled-pupils-hostel-of-horror
Blind schooling in ‘shocking’ state. Tim Fish
Hodgson & Silomo Khumalo
https://mg.co.za/article/2015-06-11-blind-
schooling-in-shocking-state
Schools deaf, blind to pupils’ needs. Victoria
John
https://mg.co.za/article/2015-11-23-schools-
deaf-blind-to-pupils-needs
Thousands of EC special needs pupils ‘being
set up for failure’ Ntombesizwe Botha.
thousands-ec-special-needs-pupils-set-
failure/
www.sowetanlive.co.za/
news/2015-02-21-i-want-to-read-write/
(Continued)
 142 Elizabeth Walton and Judith McKenzie
News platform Articles by URL

IOL Special needs education learners achieved

Independent Media includes 20 of South
Africa’s ‘most prominent newspapers.’
IOL (Independent Online) is
‘Independent’s digital offering, and brings
millions of readers breaking news as
events happen in the country and around
the world. With a growing daily unique
online audience, iol.co.za is one of the
largest news and information websites in
South Africa.’
Source: www.iol.co.za/about-iol
906 bachelor passes. Noni Mokati
www.iol.co.za/news/south-africa/gauteng/
special-needs-education-learners-
achieved-906-bachelor-passes-12612143.
4 January 2018
Calls for more special needs schools in SA.
Marvin Charles
www.iol.co.za/capeargus/news/calls-
for-more-special-needs-schools-
in-sa-10285985. 14 July 2017
9 600 special needs children on school
waiting lists. ANA reporter
www.iol.co.za/news/south-africa/9-600-
special-needs-children-on-school-waiting-
lists-7662646. 8 February 2017
Special needs schools lack support staff.
Ishara Dhanook
www.iol.co.za/thepost/special-needs-
schoolslack-support-staff-12304086. 3
December 2017
‘My disabled child travels 70km to attend
school.’ Benida Phillips
www.iol.co.za/news/south-africa/northern-
cape/my-disabled-child-travels-70km-to-
attend-school-7510132. 26 January 2017
Special schools out of reach of poor. Jabulile
S. Ngwenya
www.iol.co.za/news/south-africa/western-
cape/special-schools-out-of-reach-of-
poor-1949731. 23 November 2015
No room in schools for disabled kids.
Charlotte Chipangura
www.iol.co.za/lifestyle/family/parenting/
no-room-in-schools-for-disabled-
kids-1549502. 19 July 2013

accessed and confirmed live on 5 February 2018, and a printable version

was downloaded for each article. This was done in acknowledgement
of the instability of online content, and knowing that some platforms
remove articles and archive them. The 15 articles formed the data set
for this study, and the set was deemed broad enough to provide a range
of media outlets across the years, while also allowing for an in-depth
analysis of each article.
The texts, as online news articles, are multimodal texts, which means
that they incorporate ‘visual images, hypertext, and graphic design ele-
ments along with written text’ (Serafini 2011, 342). Analysing the texts
required that attention was given to the constituent parts of the texts,
while also attending to the ways in which these work together. Visuals,
 Education of Children with Disabilities 143
for example, can support or subvert the message of the verbal text (Janks
2010). While acknowledging the significance of the visual components
of the texts, we have, in the interest of focus and brevity in this chapter,
excluded the visual image from our analysis.
The analysis sought to answer the questions of what the articles said
about children with disabilities and their education, and how this was
conveyed. To establish what the articles said, we conducted a thematic
analysis (McMillan and Schumacher 2010) on the articles. This involved
a first level of coding of the content of the texts, finding patterns of
repetition and then clustering the codes into categories. Through this
process, we identified four major concerns regarding the education of
children with disabilities which are repeated across the articles. These
are access to schooling, quality of schooling, government responses and
distinctions between the demands of different ‘types’ of disability. Then,
using Fairclough’s (2001) notions of description and interpretation, we
sought to identify the stylistic and other devices chosen by the article
writers to convey their message and what the possible intent and effect
of these choices are. We identified linguistic features of the texts and
also focused on the headlines. These linguistic features included lexical
choices, transitivity, voice, direct and indirect speech, mood, tense and
modality (Janks 2010, 74–75). Within the constraints of this chapter,
we present some of the ‘patterns of use’ (Janks 2010, 73) of linguistic
features that can be found in a range of the texts. The final aspect of
analysis is social analysis or explanation (Fairclough 2001). This reflects
a resistant reading of these texts, focusing on the sociocultural and po-
litical positioning of the topic, and the reader.
We are more than aware of the limitations of this study. It is small,
context-bound and conducted by two people. There may be more articles
online than those we used, and we recognize the role of search engine op-
timizers (SEOs) in determining what is found. We are also acutely aware
that a discussion of the important aspects of the ‘institutional and eco-
nomic’ structures of the newspapers and their ‘political relations’ (Fowler
2001, 90) is beyond the scope of this chapter. Despite this, we suggest
that the media serve as an indicator of societies’ progress (or lack thereof)
in realising the rights of people with disability and that there is continued
value in critically engaging with the media’s construction of disability. In
the section that follows, we outline what the online media reports about
schooling for children and young people with disabilities in South Africa.

Disability and Schooling: What the Online News

Media Reports

A Similar Story
The 15 newspaper articles analysed rehearse a similar story, with recur-
ring elements. The first issue concerns children with disabilities’ formal
144 Elizabeth Walton and Judith McKenzie
access to schooling, and special schooling in particular. Here, the fol-
lowing are highlighted:

• There are numbers of children with disabilities not in school (in nine
of the articles).
• There are inadequate special schools (in nine of the articles).
• There are various barriers to accessing the schools that exist, including
cost for parents, distance to be travelled, inadequate boarding facilities
and schools unable or unwilling to enrol children (in six of the articles).
• The second issue concerns the quality of schooling that children
with disabilities experience, either in mainstream or special schools.

On this issue, the articles report:

• Special schools lack adequate staff, with extant staff having insufficient
knowledge to teach children with disabilities (in ten of the articles).
• Special schools lack resources, including equipment, assistive de-
vices and infrastructure (in five of the articles).
• Education in the mainstream does not meet the learning needs of
children with disabilities (in four of the articles).

Third, the education department is seen as not fulfilling its mandate to

ensure that children with disabilities realize their constitutional right to
education (in nine of the articles) and has not adequately implemented
the policy on inclusive education (in four of the articles).
A fourth issue is the differentiation between disability that requires
specialized teaching skills and technology (visual or hearing) and dis-
ability that requires care and relief of the burden on the family (intellec-
tual and multiple). This is evident in varying degrees across the articles,
with two having a clear focus on the specific technology and learning
needs of blind learners. The message here is clear: children with dis-
abilities constitute a problem on the basis of their impairment (Wood
2012). A simple binary between disabled and non-disabled is assumed
(Goodley 2017) and disability corresponds with difficult-to-meet learn-
ing needs that are best addressed in segregated settings (Erevelles 2000).

Disability as Individual Tragedy

In delivering this content, the articles mostly reinforce the individual
tragedy stereotype (‘Ag shame,’ in the South African idiom) about dis-
ability. In many cases this pity is directed towards the burden that the
family faces rather than the needs of the child. This is achieved through
telling individual stories, the use of numbers and lists, and headlines.
These content and linguistic choices build patterns that convey three
key messages about children and young people with disabilities and
their schooling. These messages are that children and young people with
 Education of Children with Disabilities 145
disabilities are deficient, pitiable and helpless; that ensuring the right to
education for children with disabilities is an overwhelming problem; and
that education for children with disabilities requires specialist provision
in segregated settings. Before discussing these messages, we identify the
content and linguistic choices made in the articles and their effect.

Content and Linguistic Choices

TELLING AN INDIVIDUAL STORY

The details and circumstances of individuals’ lives are told, ostensibly to

make the story more personal, and to build readers’ empathy. Typically,
the stories name caregivers, the child with a disability and details about
their lives. In John (Mail & Guardian 2014), we read,

Boniswa lives with his 30-year-old unemployed mother, Nonhlanhla

Mthembu, and his retired grandmother in a house made of stones,
mud and wooden poles… There are no books, toys or a TV, so
Boniswa follows his mother around all day as she cooks and cleans.

Later in the same article, the journalist reports sitting in another home

… on the family’s brown suede lounge suite, but seven-year-old Nel-

iswe can’t keep still. She has epileptic seizures about twice a year,
despite being on medication. Her mother, Esther, says she is intellec-
tually disabled because of the seizures.

These accounts of people’s lives offer details that are peripheral to the
story, like the nature and colour of their clothes and their furniture. The
effect is to position the reader as a voyeur. The voyeur’s gaze remains
contiguous with disability. From the freak shows of the past, to televi-
sion documentaries about different bodies, to fiction that sensationalizes
different behaviours and ways of being, disability is put on parade for
audiences (Walton 2016). In the articles we examined, this voyeurism is
compounded with ‘poverty porn’ – a genre (usually on television) that
exhibits the hardships of people with limited incomes (Jensen 2014). The
audience, in our case the reader, invades the privacy of the home and
gazes at the subjects of the story. The gaze is unidirectional and consum-
ing, and the distance created by the medium suspends the ‘don’t stare’
rule of etiquette that would operate in personal encounters.
The quoted words of parents or caregivers add authenticity, and fur-
ther personalize the stories. The parent of Bongani Bongolam in Chipan-
gura (IOL 2015) is reported as saying,

All the teachers at the crèches that I have taken him to always tell
me not to bring him back saying he’s disruptive, hyperactive, doesn’t
146 Elizabeth Walton and Judith McKenzie
listen, doesn’t like to be helped or needs individual attention that
they cannot afford as they have many other children to take care of.

The tale of schools rejecting children is repeated by parent Esther in

John (Mail & Guardian 2014) who is quoted as saying,

The ordinary school she is at said she isn’t allowed back next year
because teachers complain that she is aggressive with the other chil-
dren … She breaks all the things, windows … (Ellipsis dots in the
original).

This stylistic device gives voice to parents, but the quoted words will
have been selected by the article writer. The critical reader must question
why these quotes were selected, as it seems like they constitute graphic
and forceful accounts of the deficits of the children. The intended effect
is sympathy for parents whose children are not in school, but at the same
time, builds the idea that children with disabilities are disruptive, and
not really suited for ordinary schooling. They are out of control, ‘unruly
bodies’ that will not be disciplined (Erevelles 2000, 33).
The emphasis in these individual stories is on what children with
disabilities cannot do. The individual story in John (Mail & Guardian
2013) is informed by the sister of a learner in a special school. The sister,
Mbiza, is reported as saying that, ‘her deaf brother’s language skills are
“very bad”. He can’t construct sentences. When he sends me text mes-
sages I can’t figure out what he’s saying.’ Another article by the same
journalist (John, Mail & Guardian 2014) describes Boniswa, who is out
of school, saying that, ‘He can’t read or write, and when I ask him to
draw himself in the sand, he can’t do that either.’ Bongani, described
by Chipangura (IOL 2015), is ‘still not potty-trained, can neither feed
himself nor speak.’ Deficit is compounded with deviance, and children
with disabilities are described as disruptive and even dangerous, almost
subhuman. The special school described by John (Mail & Guardian
2013) is ‘… quiet, except for the occasional incoherent shout from a deaf
pupil.’ The governing body chairperson of that school reports that ‘… a
pupil allegedly raped another pupil’ adding that ‘It would not be the first
time.’ This lack of sexual control reflects the stereotype of disabled peo-
ple as sexually abnormal (Barnes 1992) and is echoed in the notion of
people with disabilities being either promiscuous or asexual (McKenzie
and Swartz 2011).

NUMBERS AND LISTS

Charles (IOL 2017) and ANA reporter (IOL 2017) count the exact num-
bers of children who are on waiting lists for special schools, and report
these in terms of each province. This suggests accurate reporting and
 Education of Children with Disabilities 147
record keeping, and in the articles, it is designed to convey the scale and
extent of the problem of inadequate schooling provision. Charles (IOL
2017) notes that the numbers provided by the Department of Education
(in the region of 11,000 children) may be incorrect, as other sources give
the number at 300,000 or beyond. Macupe (Sowetan Live 2015) offers
a litany of the woes of children in a specific special school:

The learners here have various disabilities, including cerebral palsy,

spina bifida, muscular dystrophy, spinal muscular atrophy and in
addition many children are epileptic. There are many children on
medication including ARVs, epileptic medication and anti-psychotic
drugs among others. The conditions of many of the children require
special nursing care like care of pressure sores, bladder and bowel
programmes for incontinent kids, monitoring the frequency of the
epileptic fits and the routine treatment of the many minor ailments
like scabies, flu, impetigo, ear infections and diarrhoea.

This list constitutes over-lexicalization, which ‘… is the existence of an

excess of quasi-synonymous terms for entities and ideas that are a partic-
ular preoccupation or problem in the culture’s discourse’ (Fowler 1991,
85). Over-lexicalization is typically used in news articles that focus on
oppressed populations, and it gives a sense of excess or overabundance
(Lean 2008). The list combines the medical terminology of diagnoses,
with the colloquialisms of ‘kids’ and ‘fits,’ conveying disability in med-
ical terms, and revealing an underlying disrespect. The list of ‘minor
ailments’ is gratuitous, including ‘scabies’ and ‘diarrhoea’ which have
particularly negative connotations.

HEADLINES

Headlines in online news articles must attract readers and ‘lure’ (Kuiken
et al. 2017, 1300) them in. For print publications, the main purpose
of the headline is to offer some summary for the benefit of the reader
browsing through a whole newspaper. The digital headline, by contrast,
is ‘clickbait’ which is characterized by ‘Simplification, spectaculariza-
tion, negativity, and provoking content’ (1303). The lexical choices made
in devising the headlines for the analysed articles function as clickbait
and reinforce the individual tragedy stereotype. Two of the articles refer
to ‘special needs’ children, three refer to ‘special (needs) schools’ and
five refer to children with disabilities, or disabled children (both terms
would be acceptable in South Africa). Most headlines contain emotive
words with negative connotations (e.g. ‘struggle’ (John, Mail & Guard-
ian 2015), ‘hostel of horror’ (John, Mail & Guardian 2013), ‘shocking
state’ (Fish Hodgson and Khumalo, Mail & Guardian 2015) and ‘fail-
ure’ (Botha, Herald Live 2017)) and signal lack or absence in some way
148 Elizabeth Walton and Judith McKenzie
(e.g. ‘no place’ (John, Mail & Guardian 2014), ‘out of reach’ (Ngwenya,
IOL 2015) and ‘lack support staff’ (Dhanook, IOL 2017)). Few verbs
are used in the headlines, and those that do, use few material processes.
This means there is little action suggested in the headlines, a state of
being is presented. This is reinforced by the present tense, which gives a
sense of truth and certainty (Janks 2010). The notion of disability as a
static, intrinsic, organic state is presented rather than a dynamic state in
interaction within the environment (Biklen 2000).

The Message
The articles position people with disabilities in particular ways and po-
sition the reader in relation to the subject. Taking headlines and written
text into account, together the articles present the following messages.

CHILDREN AND YOUNG PEOPLE WITH DISABILITIES ARE

DEFICIENT, PITIABLE AND HELPLESS

The articles emphasize disability as deficit by focusing on what it is that

children and young people with disabilities cannot do, and how their
intellectual, physical and sensory skills are deficient in comparison to
those of able children and young people. The articles reinforce ableist
conceptions of disability as a devalued and negative state that does not
conform to the compulsory norm of the perfect body that is fully human
and deserving.
A clear binary is created between those who are disabled or have
special needs, and other children, which buttresses the assumption of
the need for segregated educational provision. Critical disability studies
leads us to ask about the ways in which these supposed binaries actually
co-construct each other and far from being entirely separate entities,
disability comes to define ability and vice versa (Campbell 2009). The
existence of the children who do not belong in the regular school defines
the regular school.
The individual tragedy trope in the articles cast children with dis-
abilities and their families as the passive victims of an uncaring educa-
tion system and broader society. This is not to suggest that the system
is not brutal and dehumanizing, but that the various people reported
in the individual stories are seldom shown to be actors in their lives.
The children and young people with disabilities do not speak for them-
selves in the articles; they are spoken about, or spoken for. The world is
thus cast into two types of people: those who are weak, powerless and
need help (the children with disabilities and their families); and those
who (potentially) help them. As explained earlier, the vantage point of
the powerful (reader/reporter) allows an invasive, even voyeuristic gaze
on the details of people’s lives, including their impaired bodies, their
 Education of Children with Disabilities 149
impoverished living conditions and their family arrangements. This, in
turn, reinforces alterity as these poor children and people with disabili-
ties are cast as very different from the presumed reader (able, schooled,
literate and with internet access).

ENSURING THE RIGHT TO EDUCATION FOR CHILDREN WITH DISABILITIES

IS AN OVERWHELMING PROBLEM

The emphasis on the number of children with disabilities out of schools,

the accounts of the extent and severity of impairments among children
and young people, and the emphasis on barriers to access (transport,
cost, etc.), positions the education of children and young people with
disabilities as an insurmountable problem. While the reader may read
these details with sympathy for the people affected, there is a sense in
which the problem of a lack of educational access is so complex that it
is beyond resolution. In 1993, Coleridge expressed concern about the
effects of overestimating the incidence of disability. He commented,

…the size of the problem is likely to appear so daunting for hard-

pressed governments and those planning services with slim resources
that they may be reluctant even to embark on concerted action (108).

We are not suggesting here that the news reports overestimate the extent
of children and young people with disabilities who are out of school –
in fact, they are probably underestimated. But we do maintain that the
articles present the issue as such a ‘daunting’ problem that preserving the
status quo seems a more expedient and efficient option.
Furthermore, the wider context of poor educational outcomes of reg-
ular schools in South Africa ought to be considered. Spaull (2015, 34)
notes that: ‘The poor quality of education that learners receive helps
drive an intergenerational cycle of poverty where children inherit the
social standing of their parents or caregivers, irrespective of their own
abilities or effort.’ This context is not invoked in the discussion of edu-
cation of children with disabilities as their impairment overshadows all
other barriers that they might face and becomes the problem to address.
However, children with disabilities face the same socio-economic barri-
ers that children without disabilities face and would equally benefit from
systemic interventions designed to address these barriers.

EDUCATION FOR CHILDREN WITH DISABILITIES REQUIRES SPECIALIST

PROVISION IN SEGREGATED SETTINGS

Most of the articles do not question the assumption of the need for more
special school provision for children and young people with disabilities.
While mention is made of inclusive education, it is generally described
150 Elizabeth Walton and Judith McKenzie
as having failed. The solution to the compounded problem of children
with disabilities not in school, the lack of places in special schools, and
inadequate resourcing of special schools is not a call for the effective im-
plementation of inclusive schooling, but for the expansion and strength-
ening of segregated special schooling. This is in spite of the Salamanca
Statement’s assertion that developing and resourcing inclusive main-
stream schools are more cost effective than building more special
schools in a country’s endeavour to address educational provision for
children with disabilities (UNESCO 1994). Walton (2016) writes else-
where about how newspaper articles in South Africa position inclusive
education as a challenge, with overwhelming barriers to its implementa-
tion. These 15 articles contribute to this negative public discourse. John
(Mail & Guardian 2013) specifically includes a subheading ‘Integration
policy falls flat’ and indicates its distance from inclusive education by
putting the word ‘inclusive’ into scare quotes in the text. Taken together,
the articles present children with disabilities as very different, very de-
ficient and very deviant and so confirm in readers’ minds that separate
special schooling is required. These articles shore up the stereotype of
‘The Disabled Person as Incapable of Participating Fully in Community
Life’ (Barnes 1992, np). This stereotype is built around absence from
valued community activities, in this case schooling, and fuels the idea
that separate provision is the only option.

Government Failure
The analysed articles rehearse public frustration with inadequate gov-
ernment service delivery and contribute to the ‘extensive and volu-
minous’ media coverage of ‘maladministration or mismanagement of
public resources’ (Malila 2017, 2). They follow a ‘formulaic pattern’ of
reporting an event or situation (in this case, children or young people
with disabilities or special schools), and then asking a government offi-
cial to comment. Seven of the articles refer to actions that the govern-
ment, through the education department, is taking to address schooling
for children with disabilities. This includes information on mainstream
schools that enrol children with disabilities (Macupe, Sowetan Live
2015), gathering data on numbers of children with disabilities who are
out of school (John, Mail & Guardian 2015; Charles, IOL 2017) and
responses to situations raised in the articles (John, Mail & Guardian
2017; Botha, Herald Live 2017). Some of the articles mention legal and
Non-Government Organizations which have become involved in the
quest to secure children’s right to education (John, Mail & Guardian
2013–2015; Gedye, Mail & Guardian 2016; Phillips, IOL 2017) and
three articles (ANA reporter, IOL 2017; Charles, IOL 2017; Chipan-
gura, IOL 2013) note that the official opposition party in parliament
has taken up the issue.
 Education of Children with Disabilities 151
We see at least two problems with the pattern of reporting on govern-
ment failure exemplified by these articles. The first is that instances of
maladministration are reported like any other newsworthy event, and
so inability to deliver on policy becomes normalized (Malila 2017). The
events are individualized, and not linked with wider structural failure.
In this case the link to the general education systems is not made and
children with disabilities are seen as an anomaly, rather than a sizeable
proportion of children entitled to compulsory education. The problem
with this, says Malila (2018, np), is ‘There’s little or no investigation
of how this maladministration was allowed to occur and how it will be
prevented from happening again.’ The result, she maintains, is a citi-
zenry without the contextual knowledge needed to hold the government
to account.
The second problem is that the 15 analysed articles approach the is-
sue of the lack of access to education for children and young people
with disabilities as if it has no historical context, implying that the post-
apartheid government is solely responsible for the deplorable state of
affairs described. In so doing, we argue that these articles contribute to
the manufacture of amnesia, or what Steyn (2012) calls the ‘ignorance
contract.’ Apartheid’s legacy cannot be underestimated in any accounts
of the present failures of the post-apartheid government. This is no less
evident in the provision of education for children and young people with
disabilities. From education-specific legacies of special schools being
set up in whites-only areas and specialist training only being available
for white teachers, to the broader political challenges of ‘… balancing
elements of social justice, the desire to be internationally competitive
and the need for fiscal discipline’ (Spreen and Vally 2010, 140–141), the
post-apartheid government is faced with a herculean task in securing
both educational access and redress. By only describing the failures of
the current regime to address the right to education for children with
disabilities, the systemic injustices of apartheid are erased and blame is
placed squarely on the current political dispensation. Readers can ex-
perience the intended shock and pity as they read the articles, without
any inconvenient reminder of how apartheid engendered and shaped the
current ‘challenges.’
It is here that we need to take up the challenge to critical disability
studies made by Grech (2017) and Erevelles (2000) to move beyond the
realm of the discursive into the material and structural conditions that
maintain inequality across a range of marginalized identities.

A Resistant Reading
In our resistant reading we reject the binaries between disabled/non-
disabled, regular/special school, normal/abnormal and so on. The cat-
egories depend on each other for their existence and in the education
152 Elizabeth Walton and Judith McKenzie
context one must begin to ask what purpose special schools serve. The
articles show an ambivalent telling of this with special schools often be-
ing seen as the only option but also not being represented as good places
to go to. If we move away from the binaries and begin to understand
how these supposed opposites actually co-construct and define each
other (Campbell 2009), we might gain deeper insight into the problem of
poor educational outcomes in South Africa and explore the possibilities
of quality education for all children. The taken-for-granted adoption by
the media of an ableist perspective that devalues disability must also be
challenged (Wood 2012). Nuanced stories that move away from the un-
der or overachieving tropes of disability make room for seeing potential
as well as needs. Granting parents and their children with disabilities
agency in addressing their challenges can build a different perception of
families as resourceful and resilient. Foundational to this effort is mov-
ing away from an individual, medical, tragedy model that defines the
person by their disability in a negative, oppressive way. Importantly, this
is not about the denial of difference but the valuing and accommodation
for difference in meaningful ways that enable access and participation in
education (McKenzie et al. 2018).

Conclusion
Representation matters. Because of this, many scholars have researched
the ways in which disability is represented in the media. Our contri-
bution is to use the tools of critical literacy and concepts from criti-
cal disability studies to expose ways in which the news media in South
Africa represent the education of children with disabilities. This is im-
portant, because the news media both shape and reflect public opinion,
and UNESCO (2018, 7) reminds us that ‘Communities with discrimina-
tory beliefs and attitudes can prevent learners from accessing education
opportunities.’ It seems that not much has changed since 2006 when
McDougall reported on the representation of people with disabilities
in the South African media. The same stereotypes can still be found in
online news articles with individual tragedy (or ‘Ag shame’) prevailing as
the dominant trope in reports about education. In this chapter, we have
revealed the language and content choices in news articles that work
together to position children and young adults with disabilities in this
way, and have shown how readers are positioned in relation to these
subjects. Instead of promoting affirming disability awareness and ad-
vocacy, and locating the experiences of children and young people with
disabilities within a context of systemic discrimination and oppression,
the articles evoke shock and pity, but ultimately achieve little more than
an exercise in public handwringing. We would like to see news outlets
challenged to explore the issue of the education of children with disabil-
ities in ways that move away from understanding special and ordinary
 Education of Children with Disabilities 153
schools as binary opposites. Instead, they should consider how and in
what ways children with or without disabilities access a better quality
education through addressing all barriers to learning. There also needs
to be a concerted attempt to portray disability in a much more complex
and nuanced way which allows individual agency, without resorting to
stereotypes, to challenge ableist views of disability as deficit. Finally, we
argue that these analyses cannot be ahistorical, and the roots of depriva-
tion need to be understood from the country’s apartheid past.

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9 Mass Media Use by
Individuals with Disabilities
in Germany Compared to
the United Kingdom
Ingo Bosse and Annegret Haage

Introduction
The United Nations (UN) Convention on the Rights of Persons with
Disabilities (CRPD) states that every participating country has the po-
litical mandate to design public communication so that everyone can
participate in a free and unrestricted way. The mandate encourages ‘the
mass media, including providers of information through the Internet, to
make their services accessible to persons with disabilities’ (UN 2006,
15). Furthermore, the UN-CRPD clearly states that a database should
be maintained for recording the current participation rate of disabled
individuals and that efforts be undertaken to identify related limitations
and barriers to participation (UN 2006, 23). But so far when it comes
to debates about rights in the digital age and about digital and cultural
citizenship in general, the experiences and voices of individuals with dis-
abilities are minimally considered (Alper and Goggin 2017, 2).
This chapter presents the first national German study which surveyed
individuals with disabilities directly with the aim to answer the following
questions: what forms of mass media do disabled individuals use and
why? What media do they have access to and what barriers do they face
in this regard? The study ‘Mediennutzung von Menschen mit Behin-
derungen’ (MMB16) was published in 2016 (Bosse and Hasebrink 2016).
From an international perspective the United Kingdom has the most
developed and regulated market for audio description, subtitling and
sign language which appear on both free-to-air and subscription televi-
sion (Ellis and Kent 2015). This goes along with the development of a
differentiated knowledge base on the use of media by individuals with
disabilities relating to accessibility. In the United Kingdom, access ser-
vice obligations exist for both public and private television broadcasters
as well as for domestic and non-domestic channels. Under the Com-
munications Act 2003, the UK media and communications regulator,
the Office of Communications (Ofcom), has set specific targets for the
provision of access services since then. The British Study ‘Disabled con-
sumers’ use of communications services: A consumer experience report’
(Ofcom 2015) has been created on this basis. Individuals with hearing,
 Media Use by Individuals with Disabilities 157
visual, mobility or multiple impairments or learning disabilities were
part of this nationwide quantitative British study. The survey includes
questions on access to and use of communications services and devices,
and the levels of limitations felt due to disability. The methodology al-
lows for comparison between disabled and non-disabled individuals as
well as across the different groups of individuals with disabilities. As it is
in line with our own research, we use the 2015 Ofcom study as the main
reference for the German MMB16 Study. The media systems of both
countries are similar with a strong public broadcast, but the legislation
differs regarding the accessibility of the media. Regarding the division of
the target groups and the classification of media types, both studies are
comparable. At the same time, there are some differences in the method-
ology that we will discuss in the methodology section.

Political and Legal Framework

This section considers the political and legal framework for the acces-
sibility of media in Germany and the United Kingdom with a focus on
television and the internet.
Like most European countries, Germany has a dual broadcasting
system that consists of private and public broadcasters. In the federal
system, the regulation of broadcasters is a matter of the federal states
(‘Länder’). It is enshrined in the German ‘Rundfunkstaatsvertrag,’ an
interstate broadcasting treaty. In this treaty, public and private broad-
casters are called upon to increase their commitment to ensuring the
accessibility of their programmes ‘within the limits of their technical and
financial means’ (RStV, vom 20. Staatsvertrag 2017, 9). Since 2013, in-
dividuals with disabilities are fundamentally involved in the financing of
public service broadcasting, although an exemption is typically offered
to those on low incomes (Bosse 2016). At the time, the public service
broadcasters agreed to improve the accessibility of their services. These
agreements do not, however, apply in the same way for the private sector.
Indeed, private broadcasters’ development of accessible services lags
far behind that of the public service broadcasters and is essentially lim-
ited to subtitling a part of its programmes (Holsten and Hein 2017).
Within the concluding observations of the initial report about the imple-
mentation of the UN-CRPD in Germany, the Committee on the Rights
of Persons with Disabilities criticized the German government:

The Committee is concerned about the lack of binding obligations

for private entities, particularly private media and websites, to avoid
creating new barriers and to eliminate existing barriers relating to
accessibility and about the inadequate implementation of regula-
tions governing accessibility and universal design.
Committee on the Rights of Persons with Disabilities (2015, 4.)
158 Ingo Bosse and Annegret Haage
The Committee further requested ‘public and private broadcasting bod-
ies to evaluate their work comprehensively regarding the implementation
of the right to accessibility, especially with respect to the use of sign lan-
guage’ (Committee on the Rights of Persons with Disabilities 2015, 4).
In contrast, in the United Kingdom, the legal conditions for public
and private broadcasting companies are significantly consonant with
the guidelines of the UN-CRPD. There are quotas for subtitling, audio
description and sign language, which apply not only for public service
channels but also for cable and satellite broadcasting channels. In their
first year of operation, non-public service channels are required to meet
the following targets: 10% subtitling, 2% audio description and 1%
signing. Over time these targets increase to 80% subtitling, 10% audio
description and 5% signing. The BBC channels are obliged to meet an
annual target of 100% subtitles, 10% audio description and 5% signing
(Ofcom 2015a, 2).
Despite the greater attention paid to the accessibility of information in
the United Kingdom, in the year 2016, there was still a disproportion-
ately high proportion of individuals with disabilities that never use the
internet and those who do continue to face barriers. For example, the
websites of the public sector are still partly inaccessible (Equality and
Human Rights Commission et al. 2017, 21).
Besides the National States, the European Union (EU) sets the po-
litical framework. The 2010 EU Audiovisual Media Services Directive
stipulates that

[t]he right of persons with disabilities and of the elderly to partici-

pate and be integrated in the social and cultural life of the Union is
inextricably linked to the provision of accessible audiovisual media
services. The means to achieve accessibility should include, but need
not be limited to, sign language, subtitling, audio-description and
easily understandable menu navigation.
European Union (2010, 95/6)

In November 2018, the European Commission adopted the revised ver-

sion of the Audiovisual Media Services Directive that bounds the private
economy legally to more accessibility. The member states have to im-
plement these regulations into national law until the end of 2020. This
directive ought to be seen in the context of two other EU guidelines: the
EU Accessibility Act, which focuses on private companies, and the Euro-
pean guideline 2016/2102, which relates to the accessibility of websites
and mobile devices of public bodies. In Germany, these guidelines were
incorporated into national law by the year 2018, but websites of broad-
casters were explicitly excluded.
In Germany the Web Content Accessibility Guidelines 2.0 (WCAG
2.0) as international standard for web accessibility is implemented into
 Media Use by Individuals with Disabilities 159
national law via an annex of the ‘Equal Opportunities for People with
Disabilities Act’ (Behindertengleichstellungsgesetz 2006). But this law is
just binding for federal authorities. In the United Kingdom the WCAG
2.0 is the standard for public sector bodies (compliance level AA). By
the EU Directive on the accessibility of public sector websites and mo-
bile applications, all homepages and apps have to become accessible at
least by June 2021. Until yet there was no monitoring or sanctioning in
Germany; this changed with the EU Directive and may promote the pace
of the process to make more websites and mobile applications accessible.

Current International Research Findings

When considering the current state of research on media usage by indi-
viduals with disabilities, it is first noted that there are various research
interests and research approaches. It is necessary to consider if the focus
is set on the supply side or the demand side and who has funded the study
(e.g. the EU). While recognizing the other international research results
(e.g. Alper and Goggin 2017, Ellcessor 2016, Ellis and Kent 2015), the
focus shall be consciously set on Germany and the United Kingdom and
if relevant, on the EU.
The last European-wide study was carried out in 2013 with a focus on
e-accessibility in the World Wide Web, telecommunications (telecoms)
and television (Cederbom et al. 2013, 7). Regarding the accessibility of
television content, the authors stressed, on the one hand, the progress
made across the member states in the extent of accessibility due to the
EU’s audio-visual media services directive, and on the other, that there
remains much room for improvement of television accessibility across
Europe as a whole as well as significant variation across member states
(Kubitschke et al. 2013, 9). In 2016, the European Broadcasting Union
presented comparative data on accessible media offered by 36 channels
in 24 countries. The study reveals that broadcasters tend to focus on
providing subtitling, audio subtitling, audio description and signed pro-
grammes (European Broadcasting Union 2016).
In Germany, public broadcasters fund the most relevant representative
studies on media usage. None of these large scale studies about media
use amongst the German population contain any specific data about
media usage by individuals with disabilities.
To date, the largest survey on media usage by persons with disabilities
in Germany that directly asked about users’ perspectives (Berger et al.
2010) dates from the year 2010 and deals with the usage of Web 2.0 of-
ferings (n=671). The results show the heterogeneity of individuals with
disabilities. The type of impairment affects to some extent which infor-
mation and communication needs are satisfied through various internet
applications. The findings of Berger et al. reveal that usage intensity, the
way media are used and the motive for usage largely depend on the type
160 Ingo Bosse and Annegret Haage
of impairment and living conditions. The study by Berger et al. indicates
that individuals with intellectual disabilities are especially threatened
with or affected by digital exclusion (Berger et al. 2010). Data from a
smaller qualitative German study about internet use by individuals with
intellectual disabilities confirm these results: the risks of exclusion are
most prevalent when financial resources are lacking or the living envi-
ronment is characterized by social care (Freese and Mayerle 2015, 7).
The British study ‘Disabled consumers’ use of communications ser-
vices: A consumer experience report’ (Ofcom 2015) uses a methodologi-
cal approach that includes both individuals with and without disabilities.
Ofcom publishes a ‘quantitative analysis comparing household owner-
ship/access to and use of communications services among consumers
with different types of impairment or disability’ (Ofcom 2015, 4). The
study worked with data from the monthly British Population Survey
2014. The survey reached 4,004 adults over the age of 15 via face-to-face
interviews. Individuals with hearing, visual, mobility, learning or mul-
tiple impairments were part of the national sample. The methodology
allows for comparison between disabled and non-disabled individuals
as well as across the different groups of individuals with disabilities.
A main difference is that the British study is representative of individuals
who live in a private household. For the German MMB16 study, users
who live in residential facilities were asked as well.

Media Use by Individuals with Disabilities in Germany

The German MMB16 study is oriented on the basic criteria for a lifestyle
of good quality as designated by Article 3 of the UN-CRPD (Wacker
2016). These criteria refer to (1) the access of individuals with disabilities
to relevant infrastructures, communication and information; (2) self-
determined and autonomous design of media use; and (3) the freedom to
make decisions themselves.
The study, financed by the media authorities and the German welfare
organization ‘Aktion Mensch,’ concentrates on the mass media formats of
television, radio, daily newspapers and the internet, with special focus on
audio-visual media. In so doing, entry as well as accessibility barriers were
of special interest, along with an evaluation of the quality of already exist-
ing barrier-free television services such as subtitles and audio description.
Barriers may be located in the condition of media services themselves, such
as in missing subtitles or audio description, or as a result of factors relat-
ing to social context (e.g. the form of housing or the potentially limited
opportunities to make independent decisions about media use). Therefore,
contextual factors, which refer to the specific living conditions and to the
media available, have been considered in this study (Adrian et al. 2017).
Due to this background the international classification of functioning,
disability and health (ICF) of the World Health Organization (WHO
 Media Use by Individuals with Disabilities 161
2001) forms an essential point for the study. Here, the understanding
is that disability is dependent on situations involving the interaction of
bodily functions and structures within environmental and personal fac-
tors. Thus, possibilities for activities and participation are always situ-
ation dependent (WHO 2001). According to the WHO, a disability is
both relational and relative. An impairment has different effects depend-
ing on the situation. ‘Media cultures take for granted an able bodied
user position. (…) This can interfere in all kind of life activities, from
online shopping to social networking. (…) Technological barriers func-
tion to exclude certain bodies from full participation’ (Ellcessor 2016,
118, 130). Although the ICF is widely recognized, the definition is not
in use for official statistics about disabled individuals in Germany. The
most commonly used statistic of severely disabled individuals ‘Schwer-
behindertenstatistik’ includes just a part of the target group (2015: 7.6
million individuals, Statistisches Bundesamt, 2016). In Germany there is
no legal obligation for official recognition of a disability. It appears that
certain individuals are systematically discounted due to these regula-
tions (Institut für Höhere Studien 2012, Schröttle und Hornberg 2011).

Research Design
A mixed methods approach was chosen that utilizes the following qual-
itative and quantitative formats:

1 Expert interviews: Interviews were conducted when developing the

questionnaire, focusing on the different types of impairments and
the respective requirements for the design of survey methods and
the accessibility of media. Sixteen experts, with and without impair-
ments, were interviewed. We defined experts as persons with special
knowledge related to their professions (e.g. as scientists). Due to the
fact that the relation to profession might be problematic (e.g. NGOs)
if the disposability of knowledge has not been reflected we inter-
viewed 16 experts, with and without impairments, who have special
technical knowledge, process-related knowledge and interpretative-
evaluative knowledge (Littig 2011). The experts were scientists with
and without disabilities and activists of organizations of persons
with disabilities: expert interviews were conducted with 13 experts
for the four subgroups and three experts for the media usage of in-
dividuals with impairments in general.
2 Quantitative surveys: The disproportional quota sample (n=610)
consists of individuals from the age of 14 living across Germany
and use at least one medium occasionally. We differentiated between
four subgroups: physical-motor impairments, hearing impairments,
visual impairments and learning difficulties. Within each subgroup,
a sample was created showing a variance in the context factors
162 Ingo Bosse and Annegret Haage
relevant for media use (Haage and Bosse 2017, 421). For the quanti-
tative survey, a disproportionate representation within certain char-
acteristics including age, gender, formal education, region, kind of
impairment, occurrence of the impairment and living conditions,
employment situation was chosen to have a balanced sample.

Other factors differed depending on the subgroup:

• visual impairment (n=154): quota for blindness and partially

sighted, time of occurrence of the impairment (birth, childhood/
youth, adulthood)
• hearing impairment (n=161): quota for hard of hearing, deafened
and deaf
• physical and motor impairments (n=148): quota for time of occur-
rence of the impairment (see earlier point), type of residence (private
households or residential homes), variance regarding employment
(regular labour market, special labour market such as sheltered
workshops and economically inactive)
• learning difficulties (n=147): quota for reading skills, type of res-
idence (see earlier point) and variance regarding employment (see
earlier point)

The participants were recruited by the interviewers based on the agreed

quotas. The study aims to represent as realistic a regional distribution as
possible with regard to the German federal states with a varying media
landscape.
The variations within age, gender and formal education were met
for all four subgroups, as well as the specific quotas. The sample is not
representative of the population with disabilities in Germany. The dis-
proportional composition of the sample with quotas for subgroups and
certain characteristics within the groups ensure that all relevant groups
of impairment are represented in the sample to make conclusions about
their media usage and barriers and avoid a bias within the data collec-
tion right from the start.
Each computer-assisted personal interview was conducted face-to-face
by 101 previously specially trained interviewers of the research institute
IPSOS in June and July 2016 and if needed, with the use of additional
tools like videos in sign language or an easy-to-read format, according
to respective needs.
Topics covered by the questionnaire:

• Subjective perception of impairment

• Media use in general
• TV use in particular
• Specific TV-related barriers and support
 Media Use by Individuals with Disabilities 163
The majority of questions were derived from the study ‘Mass
Communication’ by the German public broadcasters ARD/ZDF (Engel
and Breunig 2015) to allow comparisons with the media usage of the
general population.

3 Group discussions: Four focus group discussions dealt with barri-

ers and accessibility related to German television. The group dis-
cussions focused aspects of accessibility that are difficult to grasp
with a standardized survey. In addition, the aim was to make sure
that all relevant aspects of accessibility in television were addressed.
Therefore the aspects of accessible content were discussed, not the
technical aspects of accessible TV. Because there are no special ac-
cessibility features for the other subgroups, the group discussions
were solely conducted with participants with sensual impairments:
• blind and visually impaired individuals
• hard of hearing, deaf or deafened individuals, who communicate
in spoken language (with speech-to-text interpretation)
• deaf or deafened individuals, who communicate in sign language.
The discussion was moderated by a deaf scientist.
• individuals with hearing and visual impairments, including deaf-
blind individuals. The discussion was conducted in spoken lan-
guage with speech-to-text interpretation.

Results
The following results offer a descriptive presentation of mass media use
by individuals with disabilities, their needs as well as their gained grat-
ifications, and the barriers they are confronted with. The numbers are
shown as breakdowns by the four subgroups.

Media Use in General

The results show that television is the most commonly used daily media.
In all subgroups the proportion of individuals who watch television at
least once per week is significantly larger in comparison with the general
population, with exception of younger individuals with visual and with
hearing impairments. Only 4% of the total sample indicated that they
never watch television and these participants were usually blind and/
or deaf. With regard to internet usage there are age-related differences.
That is, internet usage and the age of the interviewee tend to be closely
connected; however, usage is also linked to the type of impairment. A
greater number of individuals with visual, hearing or motor impair-
ments use the internet than do individuals with intellectual impairments.
The internet is mainly used to conduct online searches and to exchange
views and discussion with others in online communities. This pattern
Table 9.1 Personal use of media at least once a week (data in %)

MC 2015a Total Sample Subgroup Subgroup Subgroup Subgroup

‘Seeing’ ‘Hearing’ ‘Moving’ ‘Learning’

14+ 14–49 50+ 14–49 50+ 14–49 50+ 14–49 50+ 14–49 50+
(n = 4300) (n = 294) (n = 316) (n = 66) (n = 88) (n = 79) (n = 82) (n = 73) (n = 75) (n = 76) (n = 71)
164 Ingo Bosse and Annegret Haage

Radio 82 65 81 91 92 18 65 85 88 74 79
TV 88 90 94 82 88 86 94 99 97 93 99
Newspapers 60 45 57 42 52 71 90 40 67 24 15
Internet 71 77 52 80 48 95 61 81 52 51 45

a Data from the longitudinal study of mass communication (Engel and Breunig 2015, 319)
 Media Use by Individuals with Disabilities 165
of usage applies mostly to the age group 14–49 (69%). Notably, 53% of
respondents over 50 years of age also use online communities, instant
messaging or email for exchanging views and discussion with others.
Another remarkable result concerning media ownership is the low
number of smartphone owners. In Germany, 61% of respondents aged
14–49 and 30% of those over 50 have a smartphone in their household.
Individuals with learning difficulties are the least likely to have access to
a smartphone. Respondents aged 14–49 and who have an impairment
tend to own a smartphone for internet usage, whereas those aged 50
and older tend to use a stationary computer rather than a smartphone.
Striking is the significant lower share of individuals with visual impair-
ments and learning difficulties who read newspapers. The vast majority
of German newspapers don’t have accessible content in the internet for
blind people and no information in easy-to-read. In Germany newspa-
pers play an important role especially in providing information at local
level (Krupp 2016, 96).

Social Context of the Respondents

As previously stated, we assumed that the social context, especially the
employment status and living conditions, in addition to the impairment,
influence media use. The possibility to use devices differs between the
subgroups and depends on the living conditions. These findings are es-
pecially relevant for individuals with physical impairments and for indi-
viduals with learning difficulties. Within the other subgroups there are
hardly no respondents that live in residential homes. Radio, computer
and mobile devices are much more common in private households. The
biggest difference can be stated for smartphones and tablets.
The findings indicate that access to media and communication de-
vices is lower among people with impairments in residential homes than

Table 9.2 Media equipment of individuals with disabilities depending on living

conditions (in %)

SG ‘Physical impairments’ SG ‘Learning’

Private Institution Private Institution

household household

TV 97 100 95 98
Radio 89 86 80 74
Computer/laptop 68 67 51 46
Smartphone 49 37 41 30
Tablet 22 6 19 3

Question: Which kind of media are available in your household? Assessment by the inter-
viewer: Respondent lives in…
166 Ingo Bosse and Annegret Haage
among the general population in Germany. There are fewer devices with
access to the internet. The relationship between media ownership and
type of residence is most significant for individuals with learning diffi-
culties. Only half have a desktop computer in the household, while one
third own a smartphone and one in ten own a tablet. Individuals with
learning difficulties living in private households are slightly more likely
to have access to digital media (Haage and Bosse 2017, 427). Welfare
organizations should pay closer attention to digital participation.
The data show a third social factor that has a strong influence on the
media use: the age of the interviewees. Age correlates with access to mo-
bile devices. Almost double the number of respondents with impairments
who were younger than 50 have access to smartphones than respondents
aged 50+: 27% of the younger respondents own tablets in the household
and 9% of the older respondents. Age also influences media usage, and
this finding is supported by more general media usage studies.1 Due to
social context factors such as age, low income or unfavourable living
conditions users often have little or no access to the latest technology.

Comparing German and British Data: Media Use

in General
For the comparison of the German results with that of the British results
of the Ofcom study the abbreviation MMB16 is used for our German
study.
Ofcom found that in the United Kingdom, the usage of communica-
tion devices and services in the home was generally lower among con-
sumers with a disability than among those without (Ofcom 2015, 9).
Exceptions were landline telephones and free-to-air TV. The largest
gap between disabled and non-disabled consumers appears for internet
access (65%–88%, respectively) (Ofcom 2015, 9). The German survey
shows that television is the most commonly used daily media for indi-
viduals with disabilities. The proportion of individuals with disabilities
who watch TV at least once a week is significantly larger than the gen-
eral population. Only 4% of the total sample indicated that they never
watch TV. These people were usually blind and/or deaf. Internet usage
and the age of the interviewee tend to be closely connected; however,
usage is also linked to type of impairment. More individuals with visual,
hearing or motor impairments use the internet than do individuals with
intellectual impairments (Bosse and Hasebrink 2016, 45f.).
The Ofcom study states that, ‘Disabled consumers were more likely
than non-disabled consumers to have access to a free-to-air TV service,
and less likely to have pay TV in their homes’ (Ofcom 2015, 11). These
data are not easily comparable with the German results as the German
study does not distinguish between pay TV and free-to-air TV due to the
low relevance of pay TV in Germany.
 Media Use by Individuals with Disabilities 167
In the United Kingdom, Ofcom found that ‘The Internet was the only
service where levels of personal use across each disability group were
similar to access levels, suggesting that all those with access personally
used the Internet’ (Ofcom 2015, 45). Individuals with intellectual impair-
ments were the least likely to indicate use of the internet. In accordance
with the German results, the British results show that communication
and information are the most popular reasons why both disabled and
non-disabled consumers use the internet (Ofcom 2015, 10).
Remarkable for both countries is the low number of smartphone own-
ers. In the United Kingdom, the number of people who have access to a
smartphone in their home has increased since 2012, but disabled con-
sumers overall continued to have lower levels of access to these devices
than did non-disabled consumers (41% and 66%, respectively). Reflect-
ing their younger profile, consumers with a learning disability were the
most likely to have access to a smartphone (57%), albeit still signifi-
cantly lower than that of non-disabled consumers (Ofcom 2015, 10).
Both studies show that individuals with disabilities are still less equipped
for digital media relative to the overall population.

Comparison of Limitations in Access and Usage for

the Subgroups
The results show that there are additional specific accessibility and us-
ability restrictions in the use of mass media by impaired individuals.
Because the concrete requirements for accessibility and support are
related to the specific needs of the subgroups, they are presented by sub-
groups with a focus on television and the internet.

Seeing
When watching TV, an obstacle for the German ‘Seeing’ subgroup is
the absence of audio description and independent control of the devices.
Needs tend to differ depending on the severity of the eyesight damage.
Most individuals in this group would benefit from enhanced audio de-
scription and better speech intelligibility. A priority for this subgroup is
to increase the number of options that offer audio description. For 25%
of the group, independently controlling the TV is a problem. In compar-
ison with the other subgroups, this is the highest figure. There is a strong
desire for more time to enter multi-digit channel numbers as well as voice
output for the menu navigation (Bosse and Hasebrink 2016, 73f.). An in-
creasing problem is non-verbal information in videos, like stock prices
on belt conveyors. Other forms of media present challenges in terms of
access. For example, 88 participants of this subgroup stated that they
never read the newspaper. The experts surveyed think that one reason
for this might be that digital daily newspaper subscriptions are often not
168 Ingo Bosse and Annegret Haage
accessible and tape libraries mainly focus on monthly or weekly news.
The percentage of those who never use the internet is also high (30%).
This percentage is even higher amongst blind respondents (43%). Inter-
net usage is strongly correlated with the occurrence of an impairment.
Half of those with an acquired impairment remain offline. However,
only 10% of those who are blind or have a visual impairment since birth
are offline (Bosse and Hasebrink 2016). Due to the multi-modality of
the internet, the barriers vary widely, and in order to be able to cope, a
technical understanding is needed. Key barriers tend to be screen read-
ers, which are often not up-to-date with current technical development
and the growing importance of moving images (Bosse and Hasebrink
2016, 65).
The participants of the group discussion with visual impairments
appreciated the standards for audio description, developed by public
service broadcasters together with self-advocacy organizations. Speech
intelligibility was also major issue. It is said that protagonists who mum-
ble and speak unclearly are the main problem.
With regard to internet usage, the German and British results are quite
similar. In the United Kingdom, the older age profile of visually impaired
people (33% are 65 or older) explains some of the difference in levels of
access. This also partly explains the lower levels of access to computing
devices (PCs/laptops and tablets) among this subgroup and the stated
impact of their disability in limiting use of such devices (Ofcom 2015,
95). In Germany, people of a younger age (14–49) tend to use the inter-
net more often. The large majority (80%) of the German participants
in this age group go online several times a week, whereas just 48% of
those participants over the age of 50 do the same. For both Germany
and the United Kingdom, we can say that visually impaired individuals
are significantly less likely than non-disabled people to have smartphone
access. In contrast to the German results, the Ofcom study does not con-
tain splits by visual impairment type (Ofcom 2015, 95).
The British visual impaired respondents face less barriers than the
German respondents using TV: 14% of the British sample, but nearly
one third of the German sample said they feel their disability limits the
use of TV (Bosse and Hasebrink 2016, 73, Ofcom 2015, 51).

Hearing
The most extensively used media for the ‘hearing’ subgroup in Germany
is ranked as follows, from greatest to least use: TV; newspaper; inter-
net; radio. For this group, accessible TV includes speech intelligibility,
improved sound quality, subtitles and sign language, which is indispens-
able. Needs differ depending on the severity of the hearing impairment.
While those who are not able to hear sound whatsoever depend on
 Media Use by Individuals with Disabilities 169
subtitles and/or sign language, individuals who are hard of hearing use
a combination of different strategies. In the German study, the subgroup
‘hearing’ uses the internet most. Ninety-two per cent of deaf respondents
and 90% of deafened respondents stated that they use the internet daily/
several times a week. In comparison, only 59% of respondents who are
hard of hearing stated that they use the internet as often. The great im-
portance of the information and communication function of the internet
as well as the range of specialized offerings was stressed by experts as
the reason (Bosse and Hasebrink 2016).
During the group discussion in sign language, the impact of a lack of
freedom to choose was criticized: ‘If someone likes to watch TV while
ironing, one can choose. But I get what is just offered, and cannot choose.
This is bothering me and it is not accessible’ (group discussion in sign
language). Through the group discussion, it became obvious that criticism
regarding the quality of subtitles is common, especially for live shows.
Participation is not limited to information, education or science; the
participants of the group discussion demand equal access also to enter-
tainment programmes and advertising.

On television I‘m still missing subtitles of TV shows like “wife

swop”, “farmer wants a wife” and other crazy shows. We can‘t
watch this kind of shows. My parents for example are often asking:
Did you see that, she is absolutely nuts and I can‘t keep up, and can‘t
have a say
(Group discussion in sign language)

The results of the three group discussion with participants of differ-

ent kinds of hearing impairments show overall a strong desire for equal
participation in linear television, meaning it is insufficient to offer me-
dia that is accessible only through the internet. Poor sound quality and
difficulties related to speech comprehension and device operation are
problems experienced by all subgroups. It would be hugely beneficial if
background noise could be lowered or made more distinct from speech.
Of those individuals who have problems watching a television pro-
gramme, most want better speech intelligibility, followed by more easily
understandable language.
Overall, the possibility to easily discover accessible services is of ut-
most importance for the participants of all group discussions. It is not
easy for participants to obtain an overview of which services are acces-
sible and in which ways.
The German data on TV usage among hearing-impaired individuals
are not easily comparable with the UK data, as pay TV reaches far more
consumers in Great Britain. It is still interesting to have a brief look at
the British situation.
170 Ingo Bosse and Annegret Haage
Consumers with hearing impairments were more likely than non-
disabled consumers to have a free-to-air TV service, and less likely
to have pay TV. Around half (48%) had access to a pay TV service
in the home, lower than the proportion of non-disabled consumers
(55%). In contrast, access to a free-to-air TV service was higher for
this group (61%) than for non-disabled consumers (50%), with levels
decreasing for non-disabled consumers since 2012
(Ofcom 2015, 73)

Comparing the data on internet usage and within the Ofcom studies
2012 and 2015 shows that there has been no change in internet access
for hearing-impaired consumers since 2012. For the average British indi-
vidual, it rose by 5%. For hearing-impaired consumers, 69% had access
to the internet at home or elsewhere, which is lower than the proportion
of non-disabled consumers (88%) (Ofcom 2015, 73). The Ofcom study
and the MMB16 study both make no mention of any specific barriers for
this subgroup. However, the Ofcom study suggests that the growing im-
portance of moving images creates a barrier if they do not have subtitles.
Much more German respondents have problems watching TV because
of barriers compared with British ones (49% MMB16; 11% Ofcom
Study 2015).

Moving
The German research shows that in this subgroup, barriers that arise
while watching TV are often related to difficulties associated with op-
erating the device. Nearly two thirds of the interviewees do not usually
need help watching TV. Twenty-four per cent said that they need help
operating the TV or for the description of content. Of those respondents
who do have problems watching a TV programme, most want better
speech intelligibility, followed by more easily understandable language.
Every sixth individual within this subgroup experiences difficulties op-
erating a TV at least some of the time. The vast majority think that
tangible and enlarged keys on the remote control and more time to enter
a multi-digit channel number would be helpful. Roughly one half of the
participants find an application and voice output helpful for operating a
TV (Bosse and Hasebrink 2016, 96f).
The German data regarding TV usage of mobility impaired individu-
als are not easily comparable with the situation in the United Kingdom
because, as noted earlier, pay TV reaches far more consumers in Great
Britain. The British results show that:

Mobility impaired consumers were more likely than non-disabled

consumers to have a free-to-air TV service, and less likely to have
a pay TV service. Around two-fifths (43%) had access to a pay TV
 Media Use by Individuals with Disabilities 171
(satellite/cable) service in the home, lower than for non-disabled con-
sumers (55%). In contrast, access to a free-to-air (Freeview/ Freesat)
TV service was higher for this group (60%) than for non-disabled
consumers (50%), with levels decreasing for non-disabled consum-
ers since 2012
(Ofcom 2015, 53)

Sixty per cent of the British and 66% of the German interviewees with
mobility impairment regularly use the internet (Ofcom 2015, 52). When
compared with the general population of both countries, the internet
access rate is lower. While in Germany 71% of the average population
use the internet regularly (Engel and Breunig 2015, 319), in the United
Kingdom 88% use it regularly (Ofcom 2015, 52).

Learning
Nearly all German respondents from this subgroup regularly watch TV
(96% said they watch TV at least several times a week). All other media
are used less regularly than it is in the other subgroups and when com-
pared to the general population. Only a fifth regularly read the news-
paper (at least two to three times a week) and less than a half use the
internet on a regular basis. In no other subgroup is the freedom of choice
more limited. One third state that they cannot always choose what they
watch or when they watch TV. The data change depending on housing
type, literacy and age. Interviewees with intellectual impairments pri-
marily use easy speech/read for support (41%). In addition, they make
use of personal support for the description of contents or to operate
devices. Those who live in a facility use easy to read more often (29% in
private households and 49% in facilities). This may be because facilities
draw their attention to special offerings in easy to read. The German
experts surveyed argue that the target groups are not often aware of
offerings in easy to read and that there could be a lack of information
or self-motivation. Interviewees who can read stated that they use more
easy to read than others who lack reading literacy (8% point difference).
The Ofcom study highlights some of the similarities and differences
between German and British media consumers with intellectual impair-
ments. In the United Kingdom, individuals with intellectual impair-
ments access the internet 15% less than those without an impairment
(73% versus 88%). UK disabled consumer access to connected devices
in general is lower than in Germany, but there were similar levels of ac-
cess when the device is a tablet, which could be explained by the stated
impact of the disability. Three out of ten British consumers with intellec-
tual impairments said their disability limited their use of communication
services and devices, with the most difficulties being encountered when
using a tablet (Ofcom 2015, 135).
172 Ingo Bosse and Annegret Haage
The British and German data both show that respondents tend to
have more difficulty accessing mobile, web-enabled devices for various
reasons. However, what stands out is that British respondents of the
subgroup ‘learning’ have better access to mobile, web-enabled devices
than do the German respondents of the same subgroup. They are also
less concerned by exclusion, which may result from the method that
was used when determining their subgroup, as respondents were asked
whether they consider themselves to have learning difficulties. Another
explanation could be that, for the United Kingdom, only people living
in private households were interviewed. However, even if in the German
study only people living in private households with intellectual impair-
ments were considered (n=50), the data would still differ from the British
Data (Ofcom 2015).

Discussion and Conclusion

Due to the fact that we could present with the MMB16 study for the first
time, comprehensive data of the mass media usage and related accessi-
bility restriction for Germany, it is possible to compare and discuss these
results with similar studies such as the British Ofcom (2015) research.
Regarding the division of the target groups and the classification of me-
dia types, our German study is comparable to the British one. Since the
internet and the television domains are very complex and dynamic fields,
the national developments are not completely comparable.
Both studies reveal that barriers are not only located in the media
but also influenced by the social context: for individuals with disabili-
ties, access to media is often a barrier, especially if there is a connection
between impairment and the user’s economic situation. Several studies
referring to the digital disability divide confirm that socioeconomic bar-
riers prevent people with disabilities from purchasing, accessing and us-
ing (Dobransky and Hargittai 2016, Macdonald and Clayton 2013).
The main explanation for the differences in the accessibility and us-
ability of mass media in countries like Germany and the United King-
dom results from the different political frameworks and the different
level of awareness of the broadcasting stations about accessibility and
usability of mass media and diversity in mass media. It can be assumed
that the political framework and the level of awareness are closely linked
to each other.

The UK is committed to providing access to broadcasting services

for disabled people and to ensuring that the services offered are of
a consistently high standard. A disproportionate system currently
exists in the UK, so that the accessibility rate increases
Ellis and Kent (2015, 4)
 Media Use by Individuals with Disabilities 173
Whereas in countries like the United Kingdom or the United States there
are binding obligations for both public and private broadcasters to in-
crease the accessibility rate in a fixed staged model, in Germany there
are no such requirements. The German way is laborious: one counts
on voluntary engagement, inter alia, following pressure from self-
advocacy associations. Most progress is being made through the inclu-
sion of individuals with disabilities into the financing of public service
broadcasters – without setting fixed quotas. Since then, the percentage
of subtitling and audio description amongst public service broadcasters
has sharply increased. The subtitling quota of the public broadcaster
ARD increased from 34% in 2009 to 99% in 2018 per day, and the
quota of audio-description from 19% in 2012 to 54% during prime time
(ARD 2018). The second public broadcaster ZDF has a quota of 100%
for the prime time since 2013. Several live-programmes are offered with
German sign language since 2018. The quota for audio description was
11.9% for the whole programme in 2017 (ZDF 2017).
The news is broadcast once per day with sign language by both broad-
casters and there is one monthly signed magazine offered by the ARD.
Recently, the number of online television programmes with sign lan-
guage, especially for children, has increased, but there are currently less
than ten (Bosse 2016). Private broadcasting companies like the RTL
Group have extended their accessible services. Since 2018, the group
offers ten hours per day with captions, with at least four during prime
time (Mediengruppe RTL 2017). Programmes with audio description or
sign language, however, remain an exception.
Our German study MMB16 confirms the ‘hierarchy of content’
that prioritize information for people with disabilities, ‘while “enter-
tainment” is often framed as a luxury’ and ‘reserved for the already-
advantaged’ (Ellcessor 2016, 129, 132).
Even if the data concerning the use of media by disabled individuals
have made clear that linear television is still of great importance, we
can expect that television via the internet will gradually gain impor-
tance within this population group. The fact that the younger respon-
dents have a significantly more intensive use of the internet than older
respondents supports this conclusion. There is an urgent need to get
to know more about the media use of children with disabilities. Due
to financial and methodological reasons, respondents younger than
14 were not part of the German sample. Also from an international
perspective, there is little attention ‘when it comes to children with
disabilities and their use of media for digital and cultural citizenship’
(Alper and Goggin 2017, 2).
In countries such as the United Kingdom and Australia, television
content via the internet is already clearly more developed (Ellis and
Kent 2015). Thus, online versus broadcast television accessibility will be
174 Ingo Bosse and Annegret Haage
a future field of research because the respondents of the German MMB16
study stated a clear wish for accessibility features for linear TV not just
via media libraries. Therefore it is of interest how these offers will be ac-
cepted. The growing media convergence is mainly related to the internet
and television. Since the development of hybrid television, both media
cannot be clearly separated. Ongoing technical developments can lead to
more solutions that support accessibility, but technology can create new
disabilities as well, especially if they are developed from an able-bodied
position (Ellcessor 2016, 124). Solutions for individuals with learning
difficulties often offer contents that don’t stay at the original, e.g. via a
translation into easy to read. The decision for the content doesn’t remain
at the user. The project ‘easy reading’ by the EU develops a solution
for websites. With a browser plug-in the user can decide by him/herself
which kind of alteration is needed and will be possible to switch back to
the original content (www.easyreading.eu).
The question ‘Who is creating content?’ is one that is still less dis-
cussed so far. The digitalization extends the possibilities in a participa-
tory culture or ‘disability culture online’ as Dobransky/Hargittai put it
(Dobransky and Hargittai 2016, 20). Initiatives like the German ‘leid-
medien.de’ show the potential of the internet to foster engaged, active
digital citizens (Ellcessor 2016, 159) according to the motto ‘nothing
about us, without us.’ One demand in the current discussion about inclu-
sive media education in Germany is to foster the diversity in the editorial
offices (Bosse et al. 2018) to change relations of power and to create
content not just from an able-bodied position.
In accordance with the UN-CRPD (UN 2006), awareness should be
raised that promotes knowledge around the cross-sectoral issue of inclu-
sive media.
In 2018 awareness of the need to design inclusive and accessible media
increased in countries like the United Kingdom and Germany as the pre-
sented studies show here. But there is still a need to increase the amount
of empirical data about the different aspects that have an impact on par-
ticipation. Internationally comparative data are a promising future area.
A broader understanding can be achieved through an interdisciplinary
perspective, as is underlying the ‘Routledge research in disability and
media studies series’:

Disability upends universalism, requiring new, robust means of

studying a mediated world in which media’s access, use, and mean-
ing occur in diverse context and infinite variations.
(Ellcessor 2016, 155)

If the legal obligations for public broadcasters and especially for the
private media economy are not changed, Germany will most likely be
placed with countries that lack ‘binding obligations for private entities,
 Media Use by Individuals with Disabilities 175
particularly private media and websites’ (Committee on the Rights of
Persons with Disabilities 2015, 4). Hence, it can be expected that there
will remain barriers located in the condition of media services them-
selves as well as in social context factors, although there never existed so
many possibilities to overcome them.

Note
1 ARD/ZDF long-term study of mass communication (Engel 2015), ARD-
ZDF Online Study (Eimeren and Frees 2013), studies of children’s and
adolescents’ media usage (KIM and JIM studies) (Medienpädagogischer
Forschungsverbund Südwest 2016, 2017).

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ZDF. 2017. Barrierefreie Angebote im ZDF. www.zdf.de/barrierefreiheit-im-zdf/
barrierefreiheit-im-zdf-102.html [Accessed 18 December 2018].
Index

Note: Bold page numbers refer to tables and page numbers followed by “n”
denote endnotes

abject mirth 75–93 Braidotti, Rosi 9

ableism 8, 11, 20–2, 23; and Reddit
25–7, 29
abortion 26, 29, 41
access services 156–9
affective economies 36, 39–41, 47
‘Ag shame’ 138, 144–5
age 166, 168
agency 40
Ahmed, Sara 12, 36, 39–40, 41
amputation 87, 98, 104–5, 106–7
anonymity 24
Antebi, Susan 2
anxieties 20, 22
apartheid 136, 151
audio description 156, 158, 167,
168, 173
austerity 8–9, 12, 24
Australia 6
autoethnography 75–93
Barad, Karen 9
Barker, Clare: The Cambridge
Companion to Literature and
Disability 9
Barnes, Colin 4
Bennett, Jane 9
biopolitics 10
black comedy 75–93
Blackman, Lisa 10
Blotner, Charlie 59–60, 62, 65, 66, 68
bodies 1, 3, 6–7, 10–11; and
affective 39–40; and digital media
representation 7–8; and ideal image
12; and illness 55–6, 57; and North
Korea 13, 95–6, 97–9, 102–7,
108–10; see also weight loss
brain tumours 3, 12–13, 51–3, 54,
59–71
#braintumorthursday 53–4, 59–60,
63–4, 68
branding 12, 35–6, 44–6
breast cancer 3, 13, 75–93
Brewer, Jamie 35
Britain see United Kingdom
#BrittanyMaynard 53–4, 59–60, 63–4
broadcasting 156–8, 159, 165–75
#btsm community 51, 52, 53–4,
59–60, 62–4, 65–8, 69–70
Bush, George W. 95, 107
cancer see brain tumours; breast
cancer
celebrity 3, 36, 37–9, 47
chemotherapy 83–6
children 14, 26; and South Africa
135–7, 140, 141–2, 142–53
chromosomes 36, 39, 46, 48n1
colonialism 6–7
commodification 12, 35–6, 46–7
communications 5, 156–60, 166
Compassion & Choices 51, 54, 61–2,
63, 70
Convention on the Rights of Persons
with Disabilities (CRPD) 5, 115,
156, 157–8
critical disability studies 138–40
Crowley, Vicki 6
Cumberbatch, Guy 4
cuteness 127
Darke, Paul 8
Davies, Chris 5
180 Index
De Beauvoir, Simone: The Second Germany 3, 14–15, 156, 157–63,
Sex 6 164, 165–75
deafness 121–3, 124–5, 146 Goggin, Gerard 5
death 25–7, 41, 55; and right to 54, Goodley, Dan 4, 7, 11
61–2, 66, 68–9, 70
debility 10 ‘hard-working taxpayer’ 22, 27
defectors 94, 95, 96–8, 108, 109–10; hashtags 53–4, 57–9, 63–5, 68–9
and disability 104–5, 106–7; and hate 20, 23, 24, 29, 40–1
images 99–100, 101–2 Hayden, Adam 60, 65–6, 68
deficiency 146, 148–9 headlines 147–8
Deleuze, Gilles 1 hearing impairment 161–3, 168–70;
digital media see Internet; social see also deafness
media Hevey, David 20–2
Disability Discrimination Act (1995) 4 Hickey-Moody, Anna 6
disability studies 1–6, 9–11, 56, @Hope4GreyMatter 64–5
138–40 humour 20, 75–93
disablism 20–2
discrimination 20, 29 I Love It! (Daisuki!) (TV show)
Down syndrome 3, 12, 35–9, 40–7 116, 117, 119–20, 123–4,
‘dustbins for disavowal’ 20–2 126–7, 128–30
illness 55–6, 57; see also brain
easy reading 174 tumours; breast cancer
economics 12, 20, 27–9; and affective inequality 27–8
36, 39–41, 47; and North Korea Instafame 36, 38
96–7, 108 Instagram 3, 35, 38, 42
education 14; and South Africa intellectual disability see learning
135–7, 140, 141–2, 142–53 difficulties
Ellcessor, Elizabeth 9 international classification of
Ellis, Carolyn 75 functioning disability and health
Ellis, Katie 5–6, 37 (ICF) 160–1
emotions 39–40, 41; see also anxieties internet 7–8, 23, 163, 165–6; and
employment 5, 27–8 accessibility 158–60, 166–7, 168,
eradication 41 170, 171–2, 173–4
Erevelles, Nirmala: ‘Becoming interviews 161–3
Disabled’ 40
eugenics 12, 19, 127–8 Japan 3, 14, 114–18, 119–20, 121–31
European Union (EU) 158–9 Japanese Disability Rights
euthanasia 12, 27, 29 Movement 115, 123, 131n3
exploitation 46–7 Ji Sung-ho 104–5, 106–7
journalism see news coverage;
Facebook 35, 38 photojournalism
fatness 42–3
fear see anxieties Kent, Mike 5
femininity 98, 100 Kim Jong-un 96, 107
feminism 54–5, 56–7, 100 Kirkpatrick, Bill 9
financial crisis 8–9 Kitô (book) 116–17
fitness 42, 43, 44–6 Kleinman, Arthur 68
Fraser, Benjamin 2 Korean War 97, 99, 100, 101,
freak shows 19, 47 102, 109
free speech 24, 29
Latour, Bruno 9
Galton, Francis 19 learning difficulties 160, 161–2, 166,
gender 96–7, 98–9, 100, 102, 103, 171–2, 174
108–9; and Japanese dramas life 25–7
114–15, 116 love 124–7

Madeline’s Story (website) 36–7, 42
Marwick, Alice 38
masculinity 98–9
mass games 102
mass media 156–63, 164, 165–75
mastectomy 87–9
Maynard, Brittany 12–13, 51–3, 54,
60–5, 66–71
meaning making 53, 54–5, 56–7,
59–60, 62–3
media 1–3, 4–6, 23; and mass
14–15, 156–63, 164, 165–75; and
representation 7–9; and stereotypes
19–20; see also news coverage;
photojournalism; social media;
television
medicine 19, 65–6, 98–9
memetic logics 12–13, 51–4, 58–9, 69
men 96–7, 98–9, 100, 102–6
micro-celebrity 38–9
military parades 13, 100–1, 102–4,
106, 107
Mitchell, David T. 2, 8
mobility impairment 161–2, 170–1
modelling 35–7
monetization 46–7
motherhood 127–30
Murray, Stuart: The Cambridge
Companion to Literature and
Disability 9
Newell, Cristopher 5
news coverage 3, 14, 106–7; and
South Africa 137–8, 140, 141–2,
142–53
newspapers 165, 167–8, 171
North Korea 3, 13, 94–110
Office of Communications (Ofcom)
14, 156–7, 166–7, 171–2
One Liter of Tears (Ichi rittoru
no namida) (TV show) 116–17,
119–20, 123–4, 125–6
online communication see internet;
social media
othering 2, 3, 6–7, 54; and ableism 22;
and trauma 56
Paralympics 116
Perspectives of Disability in
Broadcasting 4
photojournalism 94–5, 99–107,
109–10
playfulness 13, 54, 57, 64
Pointon, Ann 5
Index 181
The Poison Princess and I (Dokuhime
to watashi) (TV show) 116, 117,
119–20, 121–4, 126–7, 129, 130
politics 96, 99–100, 107–8, 150–1,
172–3
prenatal testing 26, 29
Preston, Jeffrey 8
Puar, Jasbir K. 4; The Right to Maim
10, 11
Quetelet, Adolphe: l’homme moyen 19
race 10, 136
Ralph, Negrine 4
Raun, Tobias 39
Reddit 12, 20, 24–9
representation 7–12, 20–1, 152
resistant reading 140, 151–2
right to die 54, 61–2, 66, 68–9, 70
romance 124–7
Salmi, Liz 52, 60, 62, 65–8, 71
schemas 53
sexuality 124–5, 126–7, 128–9,
130, 146
sign language 158, 169, 173
signs 39–40, 41
smartphones 165, 166, 167
Snyder, Sharon L. 2, 8
social identity 40
social media 3, 5, 7–8, 55–7; see also
Reddit; Stuart, Madeline; Twitter
social participation 5, 14, 115,
117–18, 122–4, 131
soldiers 102–6
South Africa 3, 14, 135–8, 140,
141–2, 142–53
South Korea 96, 97, 99, 105, 108
Spinoza, Baruch 1
Spivak, Gayatri Chakravorty 7
starvation 108
stereotypes 4, 7, 19–20, 41; and
South Africa 138, 144–5,
146, 152
sterilization 26, 127–8
Stibbe, Arran 115, 116
stigma 43, 97–8, 115, 128
Stuart, Madeline 12, 35–9, 40–7
subtitles 158, 169, 173
supercrips 8, 41, 45, 115, 138
technology 5–6
television 4, 5, 6; and accessibility
156, 157–8, 159, 166–7, 168–71,
173–4; and Germany 163; and
182 Index
Japanese dramas 14, 114–18, 119–20, Varney, Eliza 6
121–31; and North Korea 99 visual impairment 161–3, 165,
thinness 43 167–8
Thread of Our Hearts (Kokoro no voyeurism 145
ito) (TV show) 116, 117, 119–20,
121–5, 126, 128 weight loss 12, 36, 41–6
tragedy 144–5, 148–9 welfare 8–9, 12, 20, 24, 27–8
trauma 52–7, 59, 65–6, 68, 70, 71 wheelchair-users 121–3,
Trump, Donald 95, 104, 107 125–6
Twitter 3, 5, 35, 38; and brain women 96–7, 99, 100, 103, 109;
tumours 12–13, 51–3, 62–3, 65–71; and Japanese dramas 114–15,
and hashtags 23, 53–4, 57–9, 63–5 116, 124–31
World Health Organization
United Kingdom (UK) 14–15, 156–7, (WHO) 160–1
160, 166–75
United Nations (UN) 135, 156 YouTube 51–2, 61
United States of America (USA) 26,
104–5, 107 Zatôichi 115, 131n1