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and resilience:

African, African-Caribbean and South Asian womens


narratives of recovering from mental distress

1
2
Report by:
Jayasree Kalathil

With:
Beth Collier

And:
Renuka Bhakta
Odete Daniel
Doreen Joseph
Premila Trivedi 3
Contents 06 Foreword
07 Recovery and Resilience project team
08 Executive summary
12 Organisation of this report

14 1. Introduction
14 Aims of the project
14 Exploring the concept of recovery
15 Exploring the concept of resilience
16 Recovery and minority ethnic communities
17 Focus on black women
18 Recovery narratives and black women

21 2. Methodology
21 Ethics and data protection
21 Recruitment
22 Research process
22 Conceptual framework: reflexivity
23 Data Analysis
23 The participants
24 Limitations of the methodology and research

27 3. Re-locating recovery within subjective meanings and


contexts of mental distress
28 Socio-cultural contexts
29 Personal and familial contexts
29 Bio-medical contexts
31 Interconnectedness of contexts

32 4. Making sense of mental distress and recovery in


socio-cultural contexts
32 Socio-cultural causes and contexts of mental distress
32 Experience and effect of racism
33 Cultural clashes, crises and confusions
34 Gendered norms of behaviours
37 Attitudes about sexuality and sexual identity
38 Placing recovery within socio-cultural contexts
38 Acceptance of socio-cultural meanings in mental
health services
38 Building a positive sense of self and cultural identity
39 Attaining a shared sense of identity through
collective action
40 Summary

42 5. Making sense of mental distress and recovery in personal


and familial contexts
42 Personal and familial causes and contexts of mental distress
42 Experience of violence and abuse
44 Bereavement, loss and other traumas
4
44 Family dynamics and tensions
45 Anxieties about responsibilities and fulfilling expectations
46 Distress as spiritual or religious experience
46 Community attitudes towards mental distress
47 Placing recovery in personal/familial contexts
47 Addressing personal/familial contexts within mental
health services
50 Finding closure to abuse experience
51 Healing with talk
52 Rebuilding self, regaining control
53 Spirituality and faith
53 A sense of community and participation
55 Summary

57 6. Making sense of mental distress and recovery in


bio-medical terms
57 Bio-medical contexts of mental distress
57 Finding meaning in bio-medical explanations
58 Putting up with bio-medical explanations
58 Rejecting bio-medical explanations
60 Placing recovery in bio-medical contexts
60 Resonance between medical and personal meanings
of distress
60 Views on medication
61 Stability through medication vs. real recovery
63 Summary

65 7. Views about definitions and practice of recovery and


resilience in mental health services
66 Views about recovery and recovery approaches
66 Critiques of the term recovery
67 Recovery approaches and models
69 Views about the term resilience
69 Resilience as an enabling concept
70 Resilience as a disabling concept
71 Summary

73 8. Supporting black womens mental and emotional health


73 Placing the report in current policy and political context
74 Meaning making in recovery
74 Recovery approaches
75 Development of a transcultural approach
75 Role of medication
75 Talking and recovery
76 Focusing on what helps
76 Telling our stories

78 References
80 Appendix 1: Participant information sheet
83 Appendix 2: Interview schedule

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Foreword by
Veronica Dewan

Oh baby, Im just human.


Dont you know I have faults like anyone?
Nina Simone, whose voice soars and This is something I relate to. My
breaks, fills my heart. I am thankful for experience, one of transracial
her life, her music and her politics. I adoption and reunion, highlighted the
dance then focus on the words I need difficulties of sustaining a relationship
to write. with my birth mother. Its painful to
live with the constant push and pull,
Words are so powerful. Lyrics, poems, of acceptance and rejection. It follows
novels, memoir. The words of black me through my life and affects all
women like bell hooks, India Arie, my relationships in my search for
Audre Lorde and Maya Angelou shed community, for a sense of belonging.
light on our lives, give voice to our
struggles. I remember as an in-patient being
told by a nurse that she and her
We can write our own words, but colleagues would not speak to me as
as service users/survivors we are I was too complicated. I remember
written about. Our lives are recorded, an old friend telling me that I wouldnt
reinterpreted, they stagnate in official have any problems on a psychiatric
documents. Major decisions are made ward because I was compliant. I
that may have coercive elements became more alert to the gravity of
couched in seemingly benign the situation I found myself in.
language. When we feel unsafe, we
dont show ourselves easily, and are In subjecting to scrutiny the terms
often misunderstood. recovery and resilience, this report
provides a penetrating critique of the
In this report black women service motivation of psychiatry in claiming
users/survivors share their wisdom, these models and approaches. I
tell their unique stories, and consider am mindful of the words Truth and
how they relate to the concepts Reconciliation; these words were not
of recovery and resilience. These chosen lightly. In the words of one
women have put their trust in interviewee: Be watchful.
the research team to share their
struggles, confusions, successes and This report is a guide towards
perspectives. In acknowledging the spreading understanding, among
depth and interconnectedness of black women service users/survivors,
their lives, the interviews have been and among people willing to resist
conducted by black women with injustice.
their own direct experience of mental
distress. It is an extraordinary relief to But Im just a soul whose intentions
read this report which is written in a are good;
language that resonates so powerfully Oh Lord, please dont let me be
with me. I read about women whose misunderstood.
lives intertwine with mine, of mixed
heritage, who have been homeless, Respect to Nina Simone and to all the
who have attempted suicide. brilliant women who have contributed
to this report.
These are resourceful, creative
women who have fought injustice,
have resisted coercion, and have
overcome internalised negative
stereotypes. They take many different
paths towards healing. Some see it as
a continuous journey.
6
Recovery and Project & research lead Jayasree Kalathil
Resilience Senior researcher Beth Collier
project team
Researchers Renuka Bhakta
Odete Daniel
Doreen Joseph
Premila Trivedi

Mental Health Foundation Dr Dan Robotham


project management

Admin support Kirsten Morgan

Steering group Patricia Chambers


Yvonne Christie
Onyemachi Imonioro
Vicky Nicholls
Millie Reid
Premila Trivedi
Jan Wallcraft

We would like to acknowledge:

All the women who took part in this study and shared their
stories with us. It has been inspiring to hear the stories and,
at times, it has had a personal impact on us. We hope that we
have done justice to their stories.

Beth Collier and Dr Dan Robotham for editorial input into


the report.

The Catch-A-Fiya working group members Dominic


Makuvachuma-Walker, Yvonne Christie, Marcia Rice and Liz
Abrahams for the initial thinking behind this project and help
with developing the project proposal.

The National Mental Health Development Unit, especially Jim


Symington, for commissioning this work.

Kathryn Hill and David Crepaz-Keay at the Mental Health


Foundation for their support and interest in the project.

Workers at various voluntary, community and user groups and


other organisations who disseminated information about this
study and helped us set up interviews.

Magie Relph, quilter and passionate fair trader of African textile


arts and fabrics, for donating the main image for this report.

7
Executive Recovery and Resilience: facing women from minority ethnic
communities have been less well
summary African, African-Caribbean
and South Asian womens researched, yet available data shows
that women from these communities
narratives of recovering are equally disadvantaged.
from mental distress is the
report of a research project This research project endeavoured
exploring the concept and to address this gap in the knowledge
settings of recovery from base around recovery by focusing
mental and emotional distress. on women from African, African
Caribbean and South Asian
The project sought to collect backgrounds.
positive stories of recovery
and resilience and highlight The main aims were to:
what helped women from
these communities in their 1. Explore distress and recovery
healing process. based on the experience and
understandings of African, African
Background and scope Caribbean and South Asian women.

Recovery is often defined as a 2. Formulate an approach to


process of curing or managing the recovery that will consider peoples
symptoms that are associated with identities as black people and/or
psychiatric diagnoses. It has been as members of black communities,
argued that medical definitions of and experiences that have been
recovery overlook the creation of new effective in their own recovery.
debilitating conditions as a result of
long-term medication, dependency 3. Contribute to knowledge on
on mental health services, and social recovery and resilience in order
exclusion. Some people who have to enable the development of
experienced mental distress argue programmes of work to support
that recovery is a process of moving people.
forward from symptoms, side effects,
negative attitudes, devaluing and 4. Rethink the term recovery itself and
disempowering services, prejudice in explore whether it resonates with
society and social exclusion. Others peoples experiences.
talk about recovery as a process
rather than a goal or end point and
that people need to have the chance How the study was conducted
to talk about their lives - the bad as
well as the good aspects - and to The study involved one-to-one
reflect on their life journey. interviews with 27 women. It used a
reflexive methodology in developing,
While people from black and minority conducting the research and
ethnic communities may share some analysing findings. Researchers
of these viewpoints, there have themselves also took part in the study
been few studies that focus on their as interviewees. A steering group of
specific experiences. Research over seven members, who brought in a
the years has shown that people range of experiences and knowledge
from many of these communities of working with women, gender, race
experience compulsory and coercive and culture issues, mental health
treatment within mental health and recovery and research, and/or
services. Evidence also shows that lived experience of mental distress,
many people had experienced racism provided direction and advice for the
and discrimination within and outside project team.
services. Much of this evidence
has focused on men from these
communities as they have faced
consistent disadvantages. The issues

8
The audience A major part of what women
described as recovery is regaining a
This report is aimed at all those positive sense of self. This process
who are involved in the planning, included overcoming the effect
development and delivery of mental of negative social experiences,
health and recovery services to developing mechanisms to cope
black women and minority ethnic with societal oppression, attaining a
communities in general. This includes shared sense of identity and social
central government, policy makers, justice through collective action, and
professional bodies, the NHS, social having access to recovery spaces
services, voluntary, community, where specific socio-cultural aspects
service user and carer organisations, of distress could be safely addressed.
and academicians. We hope that black
women and people who experience Personal and familial
mental and emotional distress will find contexts of recovery
the stories in this report inspirational.
Oppressive practices and traumatic
Main findings experiences, such as sexual and
physical abuse, domestic violence,
The most important message from bereavement and loss, and stress
this study is that interviewees from the obligations of fulfilling family
understandings of their recovery are roles were significant in how women
intrinsically linked to the ways in which in this study made sense of mental
they made sense of their mental distress. Meanings of recovery and
distress. Interviewees understood resilience, for these women, depended
the causes and nature of their mental on how they had managed to
distress in a variety of interconnected overcome these situations and regain
settings, including socio-cultural, a sense of control over their lives.
familial and personal, and bio-medical. Attitudes of the family and immediate
They identified important elements of social circles towards mental distress
their recovery within these contexts. had a key effect on recovery; negative
and stigmatising attitudes hindered
Socio-cultural contexts recovery whereas family support
of recovery enabled it.
Many of the participants in this study Spirituality and faith were important
made sense of their distress as to some participants identity. The
arising from the adverse effects of meaning given for mental distress
socio-cultural experiences, including was sometimes a part of a personal
racism, sexism and other forms of spiritual crisis or religious experience.
discrimination in society. Their racial/ Faith and/or personal spiritual
cultural, gender, sexual and spiritual grounding were important in their
identities, a sense of worth in self and recovery.
community, and a sense of belonging
had a direct relationship with their Bio-medical contexts
views on mental and emotional of recovery
wellness and recovery. This was
predicated on being able to find ways Making meaning of mental distress
and locations to rebuild a positive within bio-medical frameworks
sense of identity and belonging. Many involved some acceptance of
participants felt that mental health psychiatric diagnoses and treatments.
services and recovery frameworks However, this acceptance was
did not account for their experiences a complicated process based
of racism and other discrimination, on whether a given explanation
essentially failing to address a and/or diagnosis made sense of
significant part of their distress. their experiences and whether
the bio-medical explanation and
accompanying treatment involved
some kind of therapeutic alliance, i.e.
a shared decision making approach to
treatment and medication.
9
The requirement of compliance in Views about the concept
bio-medical settings created tensions of resilience
between the acceptance and the
level of satisfaction with the solutions People spoke of watching the
on offer. Medication emerges as resilience of parents as they adjusted
a key factor. The majority of the to lives as migrants in a new country,
participants who accepted a bio- bringing up children within racist and
medical explanation of their distress discriminatory environments. They
nevertheless made a clear distinction spoke of mothers and sisters who
between medication as a necessity for survived domestic violence or other
symptom control and real recovery. abusive relationships and of their
Their idea of recovery involved being own children growing up dealing
free of medication. with their mothers distress. They
also spoke of collective resilience
Views about definitions and in terms of their communities,
practice of recovery within surviving colonisation, slavery and the
mental health services continuing legacy of oppression and
the resilience of black women.
Only a minority of the interviewees
felt that recovery within mental The term had a positive connotation
health services resonated with their for many as they saw themselves
own definitions and meanings. Some as having demonstrated resilience.
wanted to distance themselves from These positive connotations were
the term because they saw it as based on the acknowledgement of
professional-led, pressurising and inner strength and purpose that they
meaningless. Part of the reservation had drawn on in their long journeys.
was that recovery approaches and
models did not start from a point Others found it to be a disabling
where a person was supported in concept and felt that it generated the
addressing the causes and contexts stereotype of a strong black woman
of distress, but from a point after the that worked against emotional and
distress was seen as an illness with mental development, allowing no
psychiatric diagnoses and treatment. space to feel vulnerable without
feeling guilty. Some felt that being
For some, there was a conceptual unable to demonstrate resilience in
inconsistency between the idea their life increased their sense of self-
of recovery and the way mental doubt and failure.
health services worked. They felt
that coercion as part of mental
health care, for example through the
Mental Health Act, contradicted with
recovery as something driven by
a persons specific needs. Overall,
recovery models and approaches
worked against the concept of
recovery itself and that the way in
which they are used in services
today continues to put professionals
in charge.

10
Lessons for the future Lessons for the future include:
Any approach to recovery should
This report should be read in the account for the context of an
current political climate. The focus individuals distress, acknowledging
on recovery in the new mental health that a person needs to recover not
strategy, No Health Without Mental only from mental distress but from
Health (Department of Health 2011), the underlying causes of it.
promotes recovery as a measure of a The focus on the individual in
persons overall quality of life. There is recovery approaches needs to
also a focus on personalised services be broadened to include ways
and improving peoples access to of overcoming socio-political
psychological therapies. oppression, acknowledging the
limits that these factors may pose
However, there is a dilution of focus on peoples quality of life.
on the needs of specific groups Transcultural approaches to
of people, especially in terms of recovery should be developed to
race equality and an increase in understand distress as a legitimate
compulsion within mental health response to life events, spiritual
services. The substantial changes in crises, trauma and stress.
the way health, social care and welfare Further work should be done to
services are to be delivered, combined explore the actual effect of the
with the effect of spending cuts, are continued use of medication and its
being felt more keenly by minority role within recovery.
ethnic groups. The study findings A need for increased access to
should be considered within this talking therapies, counselling and
context; how these issues affect black forms of therapeutic alliances
women and people from minority in order to explore the causes
ethnic communities in general. of distress and the contexts for
recovery.
A need for more investment to
create further opportunities for
black women to tell their stories
about distress and recovery, which
have important personal and
political functions.

11
Organisation This report is based on twenty The main image
of this report seven rich and complex
The main image used for this report
narratives. The sense of a is an image of a wall hanging, The
complete narrative can be lost Frog, The Lizard and The Turtle,
in a report like this. We have machine pieced and quilted by Magie
made every effort to capture Relph. The quilt uses a traditional
the richness and complexity of pattern called the log cabin.
the narratives in this report.
Log cabin was a favourite of African
Part 1 of this report sets out the slave quilters and often referred
context and background of our work. to as house tops. I wanted to
In the first chapter, we present the create a piece that reflected the
aims of this work, briefly discuss improvisational style of these quilters
the current conceptualisations of using whatever fabrics came to hand,
recovery and resilience and explain mostly African wax prints from my
the rationale for this work, including stash, and old fashioned techniques.
why we chose to focus on women The frog, the lizard and the turtle just
from African, African Caribbean and made themselves at home! (Magie
South Asian communities. The second Relph, www.africanfabric.co.uk)
chapter discusses the methodology
in detail.

Part 2 re-locates recovery within


the contexts of mental distress.
The chapters in this section explore
how people made meaning of their
mental/emotional distress in different
settings: the socio-cultural, personal
and familial, and bio-medical contexts.
Each chapter then goes on to discuss
how people saw their recovery and
what worked and did not work in
each situation.

The final chapter in this part takes


a closer look at the concepts of
recovery and resilience. We turn to
whether or how these terms resonate
with peoples own definitions and
meaning of recovery, healing or
keeping well. We also look at peoples
opinions about the recovery approach
and recovery models currently
used within mental health services
and the alternative terms that people
find useful.

Part 3 brings the main learning from


this work together and highlights
areas for future work on enabling
black women to come to terms with
their distress, work towards and
maintain wellbeing, and to move on
with their lives.

12
Setting the
scene

13
Introduction
This report presents the findings from a research project
that aimed to explore the concept of recovery from mental
or emotional distress1 from the perspectives of African,
Caribbean and South Asian women. The study aimed to
collect positive stories of recovery and resilience using in-
depth interviews, focusing on the context of recovery and
what helped people in their healing process.

Aims of the project Exploring the concept


The main aims of the project were: of recovery
Although recovery gained prominence
1. To explore formulations of mental
in debates around mental health
distress and recovery based on the
care in the latter part of the 20th
experiential understandings
century, the concept has a much
of African, Caribbean and South
longer history. Some scholars date it
Asian women.
back to the late 18th century, to the
collaborative work between Jean-
2. To formulate approaches to
Baptiste Pussin, a former patient
recovery that will take into
of the asylum of Bictre in Paris
consideration peoples identities as
who later became its governor, and
black2 people and/or as members
Philippe Pinel, the man who is credited
of black communities and
with developing traitement moral, a
experiences that have been
humanistic approach that removed
effective in their own recovery.
compulsion and coercion in the
treatment of the people in asylums
3. To contribute to the knowledge
(Davidson, Rakfeldt and Strauss
base on recovery and resilience
2010).
in order to enable the development
of programmes of work to
1. The term mental distress or Since then, the term has come to
emotional distress is used in this support people.
report to refer to a range of mental mean many things to many people: a
health and emotional crises including
medical concept that defines illness
conditions that are normally defined 4. To rethink the term recovery itself
as mild, moderate or acute. In our and wellness; a personal journey of
view, the term mental distress, and explore whether it resonates
one of the widely used terms within wellbeing; an aspiration; a state of
with peoples experiences.
service user/survivor communities,
straddles diagnostic, managerial and
being; a quantifiable and measurable
social categorisations of mental and entity with models and outcome
emotional crises, and allows people
to define them according to their measures; an ideology that defines
specific contexts and experiences.
In quotations from the narratives,
a social movement; a meaningless
we have retained the terms the and overused term; a political agenda
narrators have used to describe their
experiences. to cut public spending in care and
push people back to work; even an
2. The term black is used in this
document to refer to people of impossibility. Its usage in medical
African, Caribbean and Asian origin.
It acknowledges the political use
understandings of mental distress or
of the term to refer to people who psychiatric illnesses has depended on
have been historically discriminated
against on the basis of their skin accepting psychiatric diagnoses and
colour. However, this usage does
not deny the vast diversity and
descriptions of illness and the role of
difference within and between these the patient.
communities, and the fact that there
are people who do not sign up to
the identity position of being black.
While the term is used in the general
discussions in the report, it will retain
the terms used by interviewees in
referring to their identities while
quoting directly from their narratives.
14
The Department of Health, in its 2001
publication The Journey to Recovery,
Exploring the concept
acknowledged the potential of all of resilience
people to recover and proposed
that the mental health system must Despite its centrality in developmental
support people in settings of their psychology, the term resilience is not
own choosing and enable access to one that is commonly used in mental
community resources or whatever health contexts. It has a much more
they think is critical to their own extensive history in critical thinking
recovery. Recovery is a key focus in around womens experiences in the
the recently launched mental health context of violence, rape, abuse and
strategy, No Health without Mental adversity, in understanding health
Health (Department of Health 2011a). contexts like cancer and HIV/AIDS, and
This policy focus, some would argue, in individual and community contexts
has not always been a blessing, as of poverty, racism, disadvantage,
the recovery approach has become disaster and so on. In popular media
more standardised, quantified and articulations of recent times, resilience
professional-led, and puts too much has featured heavily in talking about
pressure on people experiencing communities after the 9/11 and
mental distress (Social Perspectives 7/7 bombings in the US and the UK
Network 2007b, Trivedi 2010). respectively, the Asian Tsunami of
2004, and more recently in the context
In the last few decades, the concept of economic recession. In everyday
of recovery has been recovered and terms, resilience is often understood
re-articulated from a service user/ as the innate ability of people and
survivor3 point of view to give it communities to overcome adversities,
new meanings beyond definitions move on with life, recover.
of illness and cure, including a
journey of resilience, discovery and In the mental health context, the term
hope, self-determination, agency gained credibility following the work of
and empowerment (Deegan Norman Garmezy (1973) who studied
1988, Coleman 1999, Repper and adults living with schizophrenia
Perkins 2003, May 2005). These are and children at risk of developing
remarkable in the diversity of their the condition. The development
positions and understandings of psychologist Emmy Werners work
recovery. However, the perspectives moved on from a focus on risk to a
of those from minority ethnic focus on positive factors that enabled
communities are not well represented resilience self-righting capacities
within this work, with the exception (Werner and Smith 1982). However,
of a few studies like those by the within psychology, resiliency became
Scottish Recovery Network (Outside a character or personality trait, one
the Box 2008, SRN 2008), the that could be trained, developed
Southside Partnership (2008), and the and measured. It was not long
Mental Health Foundation (Wright & before research went after empirical
Hutnik, 2003). evidence and guidelines for resilience
the American Psychological
Association has, for example, a ten-
step map to develop resilience4.

Critics have pointed out that studies


3. Throughout this paper, we use
the term service user/survivor
on resilience in black communities
to refer to people who have lived have tended to focus more on risks
experience of mental distress and
of using psychiatric services. We than personal, social and cultural
acknowledge that there are many
terms that people use to self-define,
factors that enable resilience,
directly reflecting their personal particularly their ability to seek and
experiences. It also needs to be
highlighted that not all participants receive both formal and informal
in this study subscribed to a service assistance (Miller 2003). Work by
user/survivor identity.
black feminists and educationists
4. See the American Psychological
Associations 2002 campaign, the
have sought to address this problem
road to resilience. http://www.apa. by focusing on the roles of critical
org/helpcenter/road-resilience.aspx
15
social theory, communities, families, Evidence shows that many people
spirituality, and shared resources have experienced racism and
rather than only on the individual discrimination within mental health
(Evans-Winters 2005, Hill Collins services and that these incidents
2000). We wanted to explore this need to be addressed before
larger context of coping power within productive and healing relationships
personal perspectives to see whether between services and service users
the concept of resilience provided can be formed (Keating et. al. 2002,
a broader, social counterpoint to Blakey 2005, Kalathil 2009). Moreover,
recovery, which in recent times has discussions within black and minority
come to mean something more ethnic (BME) user/survivor groups
individualised. showed that the ideas of recovery that
mental health services worked with,
and those held by service users and
Recovery and minority survivors from these communities,
were often in conflict. There needed
ethnic communities to be more space for discussing or
working with the service users or
Research over the years has shown survivors own sense of what recovery
that people from many minority ethnic meant and what might be helpful in
communities are likely to experience his/her recovery.
compulsory and coercive treatment
within mental health services. The To explore this further, a working
latest Mental Health Bulletin (NHS group was set up with members of
Information Centre 2011) shows Catch-A-Fiya, a national BME mental
that, while there has been a fall in the health service user network hosted
overall number of inpatients in mental by the Afiya Trust, and independent
health services, the number of people researchers and activists. The
detained in hospitals has risen, for group produced a study paper on
a consecutive third time, for people recovery (Kalathil, 2007) and the
from Mixed, Asian or Asian British and ensuing discussions resulted in
Black or Black British groups, with conceptualising the current project.
proportions of people from Black or
Black British groups rising from 53.9%
in 2008-09 to 66.3% in 2009-105.
Both the Mental Health Bulletin and
the Care Quality Commission (CQC
2010) agree that a larger proportion
of people from some minority ethnic
communities, than might be expected
from the detained population, are
liable to be issued a community
treatment order, a fact confirmed by
the study carried out by the Mental
Health Alliance (Lawton-Smith 2010).

5. The demographic categories used


here and later in the report while
referring to research literature are
those used in the reports referred to.
16
Focus on black women A recent study that looked at ethnic
variations in pathways to acute care
found that 42.3% of Black Caribbean,
The decision to focus on black
48.8% of Black African and 44.8%
women in this project was influenced
of Black Other8 women were under
by practical as well as conceptual
compulsory admission (detained
factors. The funding available for this
under the Mental Health Act)
project restricted the study to London
compared to 13.2% of white British
and required us to define our target
women (Lawlor 2010). The study
group more clearly. Conceptually,
also found that rates of schizophrenia
we believed in the need to resist a
related diagnosis were lowest among
one-size-fits-all cultural awareness
women from white groups and highest
approach that bundles all minority
among those from Black African
ethnic groups into a homogenous
backgrounds, and that Black Other
category, thus denying social contexts
and Black African women were also
and self-definitions of identities in
more likely to reach services via the
recovery (Trivedi 2004, Kalathil 2006).
police or the criminal justice system.
There is a growing body of literature
Another study (Howard et al 2008)
on how some minority ethnic
found that, compared to white women,
communities are disadvantaged in
non-white women were significantly
the mental health system. Much of
less likely to have been admitted to a
the research in this area is focused
womens crisis house and more likely
on men from these communities,
to be admitted to a hospital ward.
especially from African and Caribbean
This was significant because crisis
communities, because they have
houses do not admit those who are
faced consistent disadvantage within
under compulsory detention under
the system. Specific disadvantages
the Mental Health Act. Of those under
have been identified in terms of
detention in this study, 61% were from
over-representation within the
non-white communities compared to
mental health system, diagnosis and
39% from white backgrounds.
medication, side effects of medication,
issues with compliance and control,
Women from Asian and black
support for moving on, addressing
backgrounds were less likely to
family and socio-cultural needs.
be referred to Improving Access
(CQC 2009; Sainsbury Centre for
to Psychological Therapies (IAPT)
Mental Health (SCMH) 2006; National
services. Emerging evidence also
Institute of Mental Health in England
shows that women from Indian,
(NIMHE) 2003; Keating et. al. 2002;
Pakistani, Bangladeshi and Black
Bhui 2002; Warner 2000).
African backgrounds are less likely
to enter treatment once referred,
The issues facing women from
although the reasons for this are not
minority ethnic communities have
yet known (Glover and Evison 2009).
not figured highly in research
agendas in recent times. But the
The inequalities faced by women from
available data shows that women
these communities within mental
from these communities are equally
health services are compounded by
at a disadvantage. The 2008 Count
other socio-cultural and political factors
Me In census showed that rates of
including their asylum/immigration
admission for women from African,
status, family circumstances,
Caribbean and South Asian groups
employment, education, social inclusion
(except Indian) were three to six times
and so on. Gender and race/culture
6. This data was not available in higher than average6. Experimental
Count Me In 2009. based discrimination, both within
statistics from the Mental Health
communities and outside in the society
7. For Mental Health Bulletins and Bulletin showed that the proportion
Mental Health Minimum Data Set at large, form a significant part of their
annual reports, go to www.ic.nhs.uk. of women spending time in hospitals
experience of mental distress. Hearing
was higher for Black/Black British
8. Black Other or Other Black is a the stories of women belonging to
census category used by the Office and Asian/Asian British groups when
of National Statistics. Just under three specific groups (while being fully
compared to White groups7.
100,000 people used this category
to describe their ethnicity in the 2001
aware of the diversities within these
census. http://www.statistics.gov.uk/ groups) would give us an opportunity to
cci/nugget.asp?id=455.
examine these factors more closely.
17
my belief that I can change my story has
taken me to so many places. I have met so many
amazing people and done a lot of strange things
like dance in the middle of Trafalgar Square in
front of thousands of people and stand at the top
of the Grand Canyon looking down on the most
beautiful scene I have ever seen.

Recovery narratives defining what exactly recovery


is proved to be one of the major
and black women talking points in the discussion, with
several women saying the concept
Recovery within a medical model of recovery was not one they would
is often defined as a process of use for their own journey, as recovery
curing or managing the symptoms relied on the idea of having an illness
that are associated with psychiatric one needed to recover from, or as a
diagnoses. Service users/survivors linear process towards a single goal
have argued that the medical (SPN 2007a).
definition often overlooks the creation
of new debilitating conditions as This view was echoed in a study
a result of long-term medication, day on diversity issues in recovery
dependency on mental health (SPN 2007b). Current recovery
services, and social exclusion. Some models, used within mental health
service users/survivors have argued services claiming to work within a
that recovery is a process of moving recovery approach and originating
forward from symptoms, side effects, within mainstream understandings
negative attitudes, devaluing and of mental distress and getting well,
disempowering services, prejudice in had universal elements that made
society and social exclusion (Repper, sense to everyone; hope, sense of
2005). Others talk about recovery as meaning in self, control over ones
a process rather than a goal or end destiny and so forth. But they did not
point, and that, in this journey, people consider some of the key issues that
need to have the chance to talk about service users from minority ethnic
their lives the bad as well as the communities have identified as
good aspects and to reflect on their barriers to their recovery specific
life journey (Wallcraft, 2002). oppressions in the form of racism
or sexism, and denial of cultural and
As discussed above, while people spiritual needs.
from black communities may share
some of these views about recovery, Personal writings by some service users
there have been few studies that have have found that an approach that takes
focused on their specific experiences their sense of identity and experience
and understandings. The various as black people into consideration has
discussions among the Catch-A- been effective in recovery.
Fiya membership and other service
user/survivor forums showed that, I now have a psychotherapist who is a
for a considerable number of black Black woman of African Caribbean and
people, the language of recovery English heritage. She works in a way
is a problematic one as they saw it that takes account of the whole of me.
as a term that posits an illness as a She understands the damage caused
pre-given category. A focus group by racism, and how the process of
with women from minority ethnic assimilation has profoundly and
communities, conducted by the painfully distorted my identity and truth.
Social Perspectives Network (SPN), She gives me hope that my identity can
found that: have its own meaning (Dewan, 2001).
18
Trivedi (2010) argues that it is not The argument is that for many people
always clear if or how difficult issues from minority ethnic backgrounds
like racism, internalised oppression whose experiences of both the society
and questions of identity are raised and the mental health system are
when using recovery models defined by racism, sexism and other
with people from minority ethnic forms of oppression, recovery, while
communities: being a personal journey, would also
entail a social and political journey
In my experience, black users often (Fernando 2010a).
discuss recovery in broad contexts
which invariably include a lifetime of Discussions within black service user/
personal and institutionalised racism survivor forums showed that this
and the limitations and disadvantage perspective was a common one. We
that this has imposed on them in wanted to explore this in some detail:
terms of education, work, access to how do we focus on the personal
economic and other resources and within a context of communality
forced them to spirals of oppression rather than that of individuality?
from which it can be almost
impossible to escape. Recovery for There already exists, within black
BME service users often therefore communities, several definitions
involves finding a way of overcoming and models of recovery. From the
social and political factors as well perspective of providing inspiration
as personal mental health related and hope to others, it is important
issues to systematically collate and
disseminate stories of recovery.
There is also discomfort among More significantly, it is important to
some black service users/survivors analyse these various viewpoints in
and writers about the focus on the order to develop an understanding
personal in recovery approaches. of recovery that is based on peoples
Fernando (2008) warns that the lived experiences and realities of
danger of seeing recovery as a very survival, resilience and moving on. It
personal journey is that: is against this background that the
project was conceived.
it mimics the psychiatric model of
recovering from a (personal) illness,
usually through some intervention or
therapy, rather than as a social model
of finding a way through complicated
and difficult life situations that involve
social systems, relationships and so
on. A limited personal recovery is wide
open for a takeover by the psychiatric
system as being equal to getting
better from illness.

19
Telling our stories
at the early stages of my recovery when I
was at home, I said, one day I hope I get the
opportunity to share what I know.

I wont get Jeffrey Archer or Mills and Boone


to write my story. Or an overworked nurse or an
alcoholic parent Write it myself

sometimes you cant make sense of what


has happened in your life unless you are actually
telling somebody the story, you know, so re-living
the story for me is always a healing experience
for me. Even though I might feel that I am
completely healed, you heal a bit more every
time you tell the story. So yes, amen to that.
20
Methodology
One of the abiding messages from Although the focus of the study was
service user/survivor perspectives on the positive aspects of healing
of recovery from mental/emotional and moving on, it was acknowledged
distress is the fact that it is a journey that the telling of ones story would
that is in a constant state of flux. potentially bring up distressing
Providing a context for a person to memories. The interviewers were
tell her own story is the best way primed to ask the participant how
to capture the complexities of that they felt after the interview and how
journey. As Brown and Kandirikirira they felt about the interview. All
say, the use of narrative is compatible participants were given the contact
with the ideas of recovery (2007: 11), details of the interviewer, the project
allowing for recollections, choosing lead and the Head of Research at
and emphasising experiences and the Mental Health Foundation. A
sliding back and forth through time. document containing information
about support organisations and
helplines was also given in case they
Ethics and did not want to contact the research
team post-interview.
data protection
The project underwent ethical scrutiny
by the Social Care Research Ethics
Recruitment
Committee. After gaining ethics
The research focused on women from
approval, a seven-member steering
African, Caribbean and South Asian
group was set up to provide direction
backgrounds who defined themselves
and advice to the project team. Five
as recovering or having recovered
of the seven members had lived
from mental distress or mental health
experience of using mental health
problems. Both mental distress and
services. The steering group members
recovery were left undefined as these
brought in a range of experiences
were subjective and open to personal
and knowledge of working with
and cultural interpretations.
women, gender, race and culture
issues, mental health and recovery
The recruitment leaflet was
and research. Additional project
distributed and information given
supervision was available from the
out through user/survivor networks,
Mental Health Foundations research
statutory, voluntary and community
department.
mental health organisations,
organisations working with women
An information sheet explaining the
and minority ethnic groups, faith
purpose of the research and the ways
groups, newsletters and message
in which it will be conducted was
boards of various groups, online
prepared and sent to each participant.
forums and through word of mouth.
This document also explained how the
stories collected will be transcribed,
The initial aim was to recruit
stored and analysed. Participants
24 women, 8 from each of the
were asked to give signed consent
communities under study. Over 60
before the interviews. The processes
expressions of interest were received
of ensuring anonymity were explained.
either by mail or by telephone. Those
In addition, each participant had the
from outside London were ineligible
option to choose a pseudonym if they
as the study was London-based.
so wished (see Appendix 1 for the
The lead researcher had telephone
information sheet).
and/or email conversations with the
remaining people, explaining in detail
the purpose of the study and what it
would entail.
21
The final selection was made collect positive stories of recovery and
purposively to reflect a range of learn what worked in helping people
experiences, settings, cultural get better, it was imperative that
backgrounds, and practical the questions enabled the telling
considerations, such as availability to of this part of the story. The revised
be interviewed. Each final participant interview schedule was finalised with
had an opportunity to clarify any input from the researchers and the
questions they had about the steering group.
research. The participants were
then put in touch with the interviewers
to select date, time and venue for
the interview. Conceptual
framework: reflexivity
Research process This study used a reflexive narrative
methodology. To summarise a large
and nuanced body of literature
The narratives were facilitated using
and theory, feminist research
a semi-structured interview schedule
methodologies pay attention to how
(see Appendix 2). The questions in
knowledge is constructed by the
the schedule provided focus for the
active interpretation of everyday
participant to tell her story, allowed
experiences by both the researched
the interviewer to support that
and the researchers. They pay
process, and provided a framework
analytical attention to the role of the
for later analysis.
researcher in the process of research
(Lentin 1994). Drawing on the work of
In line with the conceptual framework
feminist sociologists like Anne Oakley
for this project (see section following),
(1981) and Caroline Ramazanoglu
the questions were developed
(1992), a reflexive methodology
in a half-day workshop with the
challenges the assumption of a
researchers, in which they explored
knowledge-based hierarchy and
their thoughts about recovery and
objectivity in research. The principle
getting well and what would help
of reflexivity first of all accepts that
someone tell their story, drawing
the very act of doing research shapes
on their own experiences as black
its outcomes, and that the presence
women, of mental distress and
and subjectivity of the researcher
of doing research. The workshop
shapes the stories collected and its
explored methodological questions,
interpretation. It is especially relevant
and set up support structures for both
in situations where the provider of
the researchers and the participants,
data is acknowledged to be a peer of
including de-briefing protocols and
the collector of data.
signposts to support organisations.
All the interviewers were women
After obtaining feedback on
belonging to the communities
the interview schedule from the
explored, who self-defined as having
steering group, a pilot interview
recovered or being on the road to
was conducted. The schedule went
recovery. The methodology allowed
through considerable re-write and re-
them to break away from the rigid,
arrangement after the pilot interview
and often artificial, constraints of
because it failed to capture aspects
interviewer/interviewee relationship
of the persons recovery journey,
and make contextual judgements
focusing instead on the experiences
about sharing their own experiences
of distress itself. Given that one of
with the interviewees. As researchers,
the main aims of this project was to
they drew on their intellectual,
conceptual, personal and collective
experiences of being women,
belonging to the communities under
study and having experienced
mental/emotional distress. It is
important to specify that, like the
22
women interviewed for this study,
the researchers brought different
The participants
interpretations of community, The initial aim was to recruit 24
gender identity, mental/emotional interviewees, eight from each
distress and the idea of being well or community. Twenty two of these 24
of recovery. interviews were conducted. With
the addition of the five researcher
As the research questions explored interviews, a total of 27 interviews
aspects of the researchers own life, were conducted for this study.
and as befitting a reflexive process
of enquiry, five of the six researchers We did not collect specific
chose to be interviewed for the study demographic data beyond the
and narrated their own stories. These broad identification of backgrounds
are analysed along with the rest of for recruitment purposes, as there
the stories. was no intention to compare and
quantify experiences according
From the beginning, the research to demographic groupings. The
team was interested in both the participants revealed information as
formal and subjective processes of and when relevant in their stories.
the research itself. Reflections on the This gives a broad descriptive picture
research process were facilitated in of the diversity of participants who
the following ways: ultimately took part in the study.
De-briefing sessions were set up National/cultural identities were
with the lead researcher after each expressed as Black, Black British,
interview to reflect on the process African (Liberian, Nigerian,
and its effect, think about emerging Ethiopian, Angolan, South African),
themes from each interview and African Caribbean, Asian (Pakistani,
how that contributes to the overall Bangladeshi, Indian, South Indian,
research. Gujarati, East African Indian),
The last section of the interview mixed heritage and migrant. Most
schedule provided an opportunity people identified as members of
for the interviewee to reflect on black communities, but for some
how the process went, including the accent was on being black
the perceived differences and rather than belonging to a black
commonalities between the community.
interviewer and the interviewee. Eight of the 27 women were born
The interviewers had the option to outside the UK and came here
keep field diaries in which to reflect as children of migrant parents,
their thoughts about the interview refugees or migrant adults. Migrant
process and their participation in or refugee status was part of the
this study as researchers. identity of some women.
Participants age ranged from mid-
20s to mid-60s.
Data analysis Three participants spoke about
their identities as lesbian or bisexual
After the interviews were completed, women.
another workshop brought the Religious/faith identities expressed
researchers together, where they included Hindu, Christian, Muslim,
identified and discussed the key Buddhist and atheist. Some people
themes emerging from the interviews. spoke of a personal spirituality that
These themes formed the framework was not linked to religion or faith.
for analysis. The framework and Family and relationship
emerging themes were presented configurations included married,
to the steering group, which helped divorced, single and in partnerships;
to finalise the structure for thematic some had children and
analysis of the data. grandchildren; some were single
mothers.
Three women lived in supported
housing; some lived alone and
23
others with families. One person
was homeless and living with
Limitations of the
relatives at the time of the interview. methodology and
Two others had experienced
homelessness in the past.
research
Most women had been in touch
One of the criticisms about qualitative
with mental health services over a
methodologies using narrative
long period of time, had accessed
analysis is that it is difficult to validate
in-patient services, and had been
the findings. Traditional notions of
given a range of diagnoses and
validation may be pertinent when
medication. A few had additional
projecting or generalising research
physical ailments.
findings across a population
Many women expressed a service
or specific group. We have not
user or survivor identity and
attempted to do this; instead we have
considered themselves part of
focused on the uniqueness of each
a larger community of service
story and pulled together common or
users/survivors. For others, it was
comparable elements to showcase
important that they avoided being
what works in getting well and moving
seen as service users and actively
on after experiencing mental distress.
resisted these identities.
Some had no contact with mental
While the interviews focused on
health services any more while
supporting people to tell their stories
others continued accessing
of recovery, the stories they told in the
services as and when required.
space of an interview lasting between
At least one person spoke of
40 and 90 minutes provide only a very
consciously avoiding mental health
limited view of their life. In some cases,
services.
it was apparent that this process left
Women were engaged in paid or
some people a little dissatisfied as
voluntary work; some claimed
they felt that there was much more
benefits and some were in the
they wanted to share as part of their
process of accessing benefits.
recovery narrative. We would have
liked to explore these further but were
restricted by time and resources.

Resource restrictions also prevented


us from going through a process
of the interviewees reading and
amending the transcripts. However,
the participants were asked whether
they would like to have a copy of
their transcripts. We thought this
was important because, for many
people, this was the first opportunity
they had to tell their stories. Also,
the transcripts would give them a
framework from which to develop
their life stories if they so wished. 18
participants said they would like to
have a copy of the transcript.

24
[Taking part in the interview]
has been very comfortable
for me. I have been allowed to
be where I am I think this is
part of my healing process as
well for me, a part of sharing
who I am because I dont often
get the opportunity to say
what makes me tick, what is
important to me.

Im really passionate about


BME issues and as far as I
can, whatever platform I get,
I would like to promote to
practitioners, to professionals,
the importance of working in a
holistic way for our people. 25
Re-locating
recovery

26
Re-locating recovery
within subjective
meanings and contexts
of mental distress
Narrative explorations of recovery in the UK context
have to some extent emphasised the personal nature
of recovery and the link between identity and recovery.
The Scottish Recovery Networks work, for example,
reported: Re-finding and re-defining a sense of identity
and self-confidence that has potentially been eroded by
institutionalisation or ill-health was often the first step
on a recovery journey (Brown and Kandirikirira 2007).

Other recent studies have also made of a racialised group, cultural and
this connection between identity and community identification and sense
recovery, pointing to the importance of belonging, and comfort in their
of understanding the illness and own sense of self, if they featured
developing social roles in supporting in their framing of their experience
personal growth (Ajayi et al 2009). (see Appendix 2 for the interview
But the exploration of this connection schedule).
between identity and recovery
remains limited by the fact that the The process of making meaning of
focus is on an illness identity rather mental distress is, we believe, central
than on questions and configurations to the idea of recovery a belief that
of identity in a broader socio-cultural was borne out by the findings of this
context in which an illness identity isstudy. Making sense of ones mental
one of the factors. health crisis has an important impact
on how they understand and define
The reason for this limitation, perhaps, recovery and helps individuals to
is that the effort has been to focus place it in a larger social context
specifically on the post-illness (Davidson et al 2005, Mueser et al
narrative in order to capture elements 2002, Schon 2009). For example, a
of recovery. This was a key focus of our Swedish study that explored how men
work as well. However, we also wanted and women in recovery gave meaning
to ask a crucial question: What to severe mental illness (Schon 2009)
would you say you were recovering found that the subjective reasons
from? This question gave people a
9
that people attributed to their illness
chance to frame their understanding influenced how they coped with it as
of mental distress and the follow-up well as the process of their recovery.
questions explored how they made
sense of their experience in relation to Our questions about how people
9. The only other narrative the official or medical narrative. The understood what they were
exploration of recovery that asks this
crucial question and poses it as part
section that followed was designed to recovering from and how they defined
of the recovery narrative, as far as pick up specific socio-cultural aspects their distress unearthed a range of
we can tell, is the New Zealand study
that explores the recovery narratives including experiences and identities ways in which people made sense of
of Maori people (Lapsley, Nikora and
Black 2002).
of being women, being members their experiences.
27
The most important message from For many participants in this study,
this study is that the interviewees their racial/cultural, gender, sexual and
understandings and definitions of spiritual identities, a sense of worth
their recovery are intrinsically linked in self and community, and a sense
to the ways in which they made sense of belonging had a direct relationship
of their mental distress. Women who with their views on mental/emotional
took part in this study understood wellness and recovery. Many of
the causes and nature of their mental them attributed their mental health
distress in a variety of settings, difficulties to their experiences as
including socio-cultural, bio-medical, black women in the broader society.
familial and personal, and in the inter- Mental wellness, in these narratives,
connectedness of these situations. was linked to a sense of belonging
What they identified as the important and personal pride in who you are.
elements of their recovery were also Resolving or at least making sense
placed within these contexts. of these issues had a major part to
play in what people saw as recovery.

Socio-cultural The causes and nature of mental


distress in the socio-cultural context
contexts included discussions of:

As far back as 1981, in her seminal Personal experiences of racism


book Aint I a Woman, bell hooks wrote: and discrimination; perceptions of
how communities and families were
Widespread efforts to continue treated in the larger society, including
devaluation of black womanhood the continuing legacy of the historical
make it extremely difficult and oppression of black people through
oftentimes impossible for the black slavery and colonialism.
female to develop a positive self- Cultural clashes, crises and
concept. For we are daily bombarded confusions arising from contexts of
by negative images. Indeed, one mixed heritage, migration and/or
strong oppressive force has been growing up as children of migrant
this negative stereotype and our parents, or trans-racial adoption.
acceptance of it as a viable role model Experiences of gendered
upon which we can pattern our lives. oppression and sexism in society
and within communities.
Exploring the psychological impact of Social and cultural norms of
this devaluation on black women and gendered behaviour, assumptions
offering ways of coping with it, hooks about womens roles and their
argues that life-threatening stress impact on emotional growth.
has become the normal psychological Socio-cultural attitudes towards
state for many black women and that sexuality and sexual identity.
this stress is directly linked to the Experiences within mental health
way in which systems of domination services.
racism, sexism, and capitalism, in
particular disrupt our capacities For those who made sense of their
to fully exercise self-determination mental distress in these socio-cultural
(2005: 40). contexts, a significant part of recovery
involved overcoming or at least
Writers like Trivedi (2010) and coming to terms with oppressive
Fernando (2008, 2010a) have experiences through re-gaining a
made references to black peoples positive sense of self and belonging,
experiences of oppression, born at a sense of pride in ones communal/
the intersections of marginalised cultural identity, having control over
positions, and its links to recovery. their lives, participating in political
However, research based on service activism and community activities,
user/survivor narratives has not and gaining a sense of social justice.
explored this issue in any detail. Personal healing was predicated
on achieving or moving towards a
renewed and empowered sense of
self and identity.
28
Personal and Attitudes of the family and immediate
social circles towards mental distress
familial contexts had a key effect on recovery
negative and stigmatising attitudes
Highlighting how psychiatric practices hindered recovery and family support
medicalised womens experiences enabled it.
and reactions to negative personal,
familial and social situations has been The following key themes emerged
a major part of feminist readings and in discussions of mental distress in
critique of psychiatry and mental personal and familial contexts:
distress. Elaine Showalter, for example,
has demonstrated how assumptions Oppressive experiences like sexual
about proper feminine behaviour and physical abuse, domestic
influenced the classification and violence, bullying and the trauma
treatment of female insanity from arising from these experiences.
the Victorian times to the present Bereavement and loss.
day (1987). Phyllis Cheslers seminal Tensions between the individuals
book on women and madness and their familys expectations and
analysed the role of stigmatising aspirations.
diagnostic labels in creating whole Accumulated stress in relationships,
careers as psychiatric patients for bringing up children and fulfilling
women (2005). Analyses of womens other familial roles.
writing unearthed how patriarchal Stress from the workplace and
attitudes towards womens roles and other personal circumstances.
behaviours affected definitions of Mental distress as a personal,
madness and confinement of women, spiritual or religious experience.
and how women used their writing as
protest (Kalathil 2001, Hubert 2002). Recovery in these contexts was
intrinsically tied to moving away from
Attention has also been paid to or overcoming oppressive and stressful
the need to address gender based situations, making sense of the abuse/
inequalities within communities and trauma experienced, learning ways of
families and the effect of personal coping with stress and loss, making
trauma in working with womens peace with the family and significant
mental health (Williams and Miller others through communication
2008, Kohen 2010). A WHO enquiry and re-evaluating relationships, and
pointed out that there has been an acknowledging the role of spirituality,
over-emphasis of the impact faith and religion in recovery.
of biological factors on womens
mental health and an under-emphasis
of their social and emotional lives
(Astbury 2001).
Bio-medical contexts
Personal experiences of these The treatment of the mentally ill has
broader inequalities and oppressive historically centred on the individual
practices, within the contexts of the and, as histories of psychiatry have
family and relationships, emerged as shown, there has been an element
extremely significant in how women of blame attached to the individual
in this study made sense of their seen as insane or mad, including a
mental distress. Meanings of recovery lack of will or self-control or a sense of
and resilience and the perception of morality (Foucault 1965, Mack 1975,
having recovered, for these women, Wirth-Cauchon 2001). A bio-medical
depended on how they had managed explanation, based on genetics or
to overcome these situations or make chemical imbalance, externalises the
peace with them and move on. responsibility for distress and to a
certain extent allows people to free
themselves of the blame. Groups as
10. See, for example, the user/ diverse as the National Alliance of
carer group Schizophrenia
Awareness Association the Mentally Ill (NAMI) in the US to
(www.schizophrenia.org.in) and the
non-governmental organisation
NGOs and user/carer groups in India10
SCARF (www.scarfindia.org). have used the bio-medical model
29
as a weapon to fight against stigma A bio-medical model also requires
and discrimination of mental health compliance and an abdication of
issues in society, for example, through control to professionals which, as we
arguing that it was an illness like any shall see, creates a tension between
other (Sayce 2000). the acceptance of the model and the
level of satisfaction with the solutions
However, it has been suggested that are on offer within this framework.
that bio-medical models create their Medication emerges as a key factor
own stigmas based on assumptions in this. Majority of the participants
about difference, disorder and in this study who accepted a bio-
dangerousness, both within their own medical explanation of their distress
communities and families and in the nevertheless made a clear distinction
wider society (Prins, et al. 1993, Taha between medication as a necessity
and Cherti 2005, Fitzgibbon 2007, for symptom control and stability and
Corrigan 2007). Psychiatry has a their idea and definition of recovery
history of pathologising both black and getting on with normal life.
communities and women (along with
other non-normative groups like The discussions of mental distress in
homosexuals) based on definitions of bio-medical contexts included:
deviance and disorder in opposition
to the definitions of normalcy and An understanding of mental distress
reason of Europeans (Metzl 2010, as an illness, attributing the causes
Wirth-Cauchon 2001, Showalter 1987). to genetics, chemical imbalances,
For example, Dr Samuel Cartwright, damage to brain and other medical
a Louisiana physician, diagnosed explanations.
African slaves with drapetomania Acceptance of an illness model,
(illness of repeated running away) sometimes in conjunction with
and dysaesthesia aethiopis other explanations.
(work-refusal and insensitivity to Discussions of physical illnesses,
punishment), and claimed that both side effects and the bodily
could be cured with care, kindness experience of mental/emotional
and hard work (Cartwright 1851). distress.
More recently, Metzl has examined The impact of bio-medical
how blackness and schizophrenia interventions, including medication
came to be connected in parallel to and its efficacy.
the national political events in the
1960s and 1970s, especially the civil Recovery in these contexts was
rights movement, in the US (2010). predicated on accepting psychiatric
The legacy of this history, some have diagnoses and the role of medication
argued, is evident in practice today and other interventions. This, however,
(Fernando 2010b, Sashidharan 2001). did not mean that people were always
satisfied with these explanations and
Making meaning of mental distress interventions. Some people made a
within a bio-medical framework clear distinction between medication-
involved some acceptance of based recovery symptom control
psychiatric diagnoses, treatments, and management and real recovery,
and, in some cases, a doctor which they saw as a life free from
knows best attitude. However, this medication and its effect on the body
acceptance was a complicated and self. In all narratives where a bio-
process based on whether a given medical understanding of distress
explanation and/or diagnosis made experience and recovery was central,
sense of their experiences, the there was a tension between self-
level of self-blame, isolation and perceptions of life as a patient and
other stigmatising factors that a normal life.
person experienced, and whether
the bio-medical explanation and the
accompanying treatment involved
some kind of therapeutic alliance - a
shared decision making approach to
treatment and medication
(Brown and Kandirikirira 2007).
30
Interconnectedness
of contexts
It is important to note that, for
many people, the reality was one of
interconnectedness between these
contexts and meanings. People gave
different amounts of significance
to different contexts. For example,
in some cases, while the person
identified the causes of distress in
her interactions in social and familial
contexts, the meaning she gave to her
experience of distress was medical.
In other cases, an acceptance of
a medical reason is accompanied
by a spiritual understanding of the
experience. It is this subjective
meaning-making process of the
contexts of mental distress that
defines the personal element in
recovery. It is important that any effort
to understand and work with recovery
should focus on these processes.

In the next chapters, we explore each


of the above contexts in detail.

If I narrowed it down it would be one thing


God. I felt powerful, I felt protected, I felt loved.
I felt important, whole, I didnt feel like I was
alone Ive met a lot of people as well and Ive
had family support Ive met other service
users with this diagnosis Some people are
really positive, which just makes you feel ten
times younger, it makes you feel good inside, so
mental illness is not just the negative side, its
the positive side as well. 31
Making sense of mental
distress and recovery in
socio-cultural contexts
Socio-cultural Well, basically when I was a child we
lived on an all-white road. Nobody
causes and contexts was friendly to us and, as luck would
of mental distress have it, our next door neighbour was a
member of the National Front and he
kept throwing abuse over the garden
Through the narratives, it is evident wall at us It was really horrible,
that several socio-cultural factors horrible stuff. And when you were
contributed to causing mental and growing up as a child, you think thats
emotional distress. These included how the outside world sees you. You
experiences of racism, attitudes are not going to have pride in yourself
towards women and their sexuality, and you actually fear the world around
issues arising from contexts of you. I can see where that has had a
migration and mixed heritage, knock-on effect on my experience or
tensions with negotiating cultures, paranoia
and attitudes towards race and
culture within mental health services.
Internalising racism
Experience and Loss of self-worth and sense of
effect of racism pride in oneself as a direct result of
experiencing racism while growing
Asked what she thought she was up was a key theme that ran
recovering from, one participant through other narratives as well. The
answered: experience of not being valued had
resulted in internalising negative
Basically what I think I was recovering self-images, as shown in the following
from was self-hate, feeling of self- excerpt from a participant who was
hate, feeling of being alien but I born in the UK to migrant parents.
can understand why I felt that way
from what had gone before and its being brought up in [a South
not seeing it as actually me being London community] that really didnt
demonically possessed or me being want you around, having that made
mentally ill its an appropriate human very clear to you They dont know
response to a situation; its an extreme anything about me and my family
response, yeah apart from our appearance and if its
that that they hate so much that theyll
This narrator attributes this sense kick you in the street or theyll be really
of self-hate that led to her mental nasty to you or kids will chase you down
distress to negative social situations the road If thats what I know about
in which racism had a significant part me then there must me something
to play: inherently wrong with the colour of my
skin. So I think I did a bit of, well more
than a bit, of internalising that so I
think that had quite a big impact. Its
probably only in the last 10 years that
Ive felt comfortable in my skin.

32
Internalising a negative image over the years. So I can see why I had
of oneself and ones community a breakdown in the end.
results in being silenced, creating a
sense of not belonging and in losing These narratives show the cumulative
confidence in ones own abilities, effect of negative messages about
as the following narrative, also from race and community on a persons
someone born in the UK to migrant mental wellbeing. The impact of
parents, shows: racism in society also has a continuing
effect on some peoples wellness and
I think racism has had a big part has the potential to undermine the
to play in not feeling like I belong, not sense of self and identity that people
feeling accepted, not feeling like a have built up over the years. One
valued person and that then contributed participant, who migrated to the UK in
to having very low [self] esteem, little her 30s, said that the racialisation of
confidence, devalued, disempowered people seen as Asian and/or Muslims
and if you have not got any of those as potential terrorists had made her
then you are not going to get on in life own identity your motivations, your
and I suppose I did not get on in life capabilities, the who you are thing.
one job after the next, I just did not
get on with them. I had lot of negative In terms of causing distress, racism
experiences from trying to go out and has been a huge issue especially post
trying so, so hard, thinking why cant July 7th 2005. I had some experiences
I get anywhere. It is because of those of being racially abused on the street
messages I was given when I was little, for being a Taliban *****, being asked to
and growing up with those messages. go home and all that kind of stuff Im
Racism, you know, it is I find in our also quite politically minded so when
society in the UK covertly oppressive watching something on TV which is,
and it is a very subtle message that you you know, the programmes that are
get that you cannot talk to anybody relentlessly islamophobic or whatever,
about it keeps you silenced. that has a very strong impact on my
mental state. So what I do now is I
Damage to self and identity dont watch them any more than is
absolutely necessary to keep track of
Societal attitudes and prejudice
what is going on in the world.
based on race, and skin colour and
the resulting confusion, isolation and a
damaged sense of self were key causal Cultural clashes, crises
factors for those participants who were and confusions
from a mixed heritage background.
One participant, a daughter of an
Caught between cultures
English mother and Jamaican father, One participant, the daughter of an
described herself as having no sense African father and English mother,
of home because all through her and adopted and brought up by white
childhood and growing up years she English parents, spoke of her specific
and her family had to keep moving experience of being brought up by
houses because of racial prejudice. trans-racial adoptive parents in an
all-white community in rural England.
In those days, it was no Irish, no Isolation was two-fold for her. On the
blacks, no dogs. So what my mum one hand, the immediate all-white
used to do was go along and find a society saw her as the other:
flat and then sneak her children in and
then sneak her husband in and when Id take myself on [bike rides] and I
they found out that she has got black would get racial abuse hurled at me
children and a black husband, she by people passing by in a car, which is
would get kicked out we lived in lot really intimidating when you are in the
of different homes. And although my middle of nowhere. You cant hide and
parents stuck together they were theres a real feeling of not being able
also fighting among themselves and to hide. Or older women who sort of
had to fight the world as well so that class themselves on their manners
had an impact on us children so it was but with you they dont display those
very hard All that took its toll on me manners, sort of making you feel very
33
much second best Youre isolated, Another participant who grew up
youre the only one thats experiencing in Africa as the daughter of Indian
it, theres no one to share that parents talks about moving from a
experience with and if you do, youre multicultural city in Africa to a cultural
told youre ridiculous or youre making desert in the east of England.
it up or youre being over-sensitive.
I came here at the age of fourteen,
Yet on the other hand, the idea of so I think in some way that did not
being black did not sit well with her help me really, changing and moving
own sense of self: countries. I think also it is to do with
growing up in one culture and coming
I mean, when I went to school I was to another all that stuff that goes
the only black child. But then the word with that. I had to negotiate and
black not feeling like it fitted me I find my way through these cultural
didnt know any other people of colour. agendas
I didnt know the idea of being mixed-
race. Im not sure when the concept She feels that her identity and sense
of being mixed race first came to me of self is very much based on these
but I must have been at least 15 or various cultural trajectories and how
16. Even then I still felt the pressure she negotiated them. But this identity
to wear this badge of black which just is constantly under question from
didnt work for me. the outside.

This sense of the world being divided I think it was brought to me recently
into two and not belonging on either when I was talking about Black
side is one of the defining factors History Month and someone made a
of what she terms her emotional comment that Black History Month
distress. She saw a very clear is about black African and Caribbean
distinction between her race as the people I really felt as if I was being
biological daughter of a black father excluded. Because part of me is
and white mother and her culture African by birth and I always will be
which she saw as the white middle even though I dont look African, I feel
class background of her adoptive it and that is my heritage and that is
parents. my identity and I will be the first one to
jump up when I see the flag of Kenya
Negotiating cultures perhaps not so much for the flag of
India When people here refer to me
For some of the second generation
as Indian, I refer to myself as Kenyan.
migrant women in the study,
So it is all about identity
negotiating cultures had a significant
impact on their sense of self and
belonging, and they see this as one Gendered norms
of the causes of mental distress. For of behaviour
one participant, the last and only Many women in this study felt that
British child of migrant parents, the being perceived as not fulfilling
communitys perceptions of whether social, cultural and familial norms of
or not she fulfilled their cultural being women had a direct impact
expectations had an impact on her on their mental health. Every culture
sense of self. prescribed certain gendered norms of
behaviour, and sometimes there was
In the first year of university, there not much difference between cultures
was a group of Asian men who were in what these norms were. For some,
students and they really hated me going against these norms created
because I was quite anglicised in the conflicts which resulted in mental and
way I behaved and that caused me emotional distress.
a lot of confusion and distress and I
think things like that contributed to my
feeling of who the hell am I.

34
The submissive woman The difficult woman
As with racial discrimination, gender- For many women in their 40s and
based discrimination had a negative above, not adhering to norms of
impact on peoples sense of identity, behaviours within their societies and
confidence and self-worth, to the cultures meant that they were seen as
extent that it became internalised. difficult. This idea of difficult women
One participant, for example, spoke was not specific to any culture, but
of being depressed as a suitable a reflection of a patriarchal attitude
and accepted state to be in as that is that is part of many cultures. The
what was expected of women in her following excerpt is an example of the
situation young, Asian, divorced and perception of a difficult woman:
pregnant.
For a really long time, it was all
I thought that being sad and not about me just being difficult. There
having confidence is feminine... I were reasons why I would have been
thought it was a good thing to be to thought of as difficult because as a
be submissive I should just be very child, I was naughty and not that nice
submissive and feeling depressed for a girl... I grew up and became a
inside is actually good. I mean I feminist, I was going on campaigns
wanted to be happy but if I feel happy and demonstrations, I married the
after my divorce and after leaving your wrong person without my familys
husband that is really bad. A woman consent and I was not doing anything
in Asian [culture] when husband has that a normal good girl was supposed
left you or you have left him because to be doing
of domestic violence or whatever,
divorce, you have to be sad and thats The impact of this perception had
it, you know? So sometimes we act direct consequences to this narrators
because women should act like this mental status. Asked what this
and its right. narrator thought she was recovering
from, she said that she was recovering
Sometimes these feelings of from the distress caused by societys
inadequacy were not as a direct attitudes towards a certain kind of
result of personal experience of woman, one that did not fit well within
discrimination, but of internalising the prescribed norms.
the perceived devaluing of women
and girls in the environment around, The strong woman
as this narrator from an Asian
The image of women as strong
background and brought up in three
emotional beings cuts across cultures.
different cultures testifies:
In some cultures, this image seems to
sit, seemingly with no contradiction,
I must have been six when my four
alongside the requirement for women
year old brother died and I think I took
to be submissive as we discussed
it upon myself to replace him mentally.
earlier. While this could be interpreted
I did not make a big announcement of
positively as resilience (see discussion
it but the little girl at that time decided
in chapter 7), many narrators in this
she was going to fill that gap for her
study felt that the image of strength
parents because that is what society
in the face of mental and emotional
wanted boys I did wish it had been
distress has stopped many women
me that had died As I was growing
from seeking or receiving help at
up I saw that girls werent wanted
the time of their need. The following
and boys were.
excerpts from two participants,
both women of Caribbean heritage,
show how the stereotype of strength
in the face of all adversities affects
black women:

35
I was unwell after the first three Attitudes towards black women
months of university and I actually in mental health services
didnt end up in hospital until two
years later I think one of the things These attitudes about black women
I learnt from my mother was that we, are reflected within mental health
as black women, you keep going and services as well. One participant felt
you are strong, and no matter how that the professionals who worked
difficult, you know, you keep going and with her after she was sectioned
I think that had an impact. I think that seemed reluctant to believe that she
had I not had this ideal in my head of was highly educated and held down a
the strong black woman, I would have senior level job, as this conflicted with
perhaps, I dont know, I would have their pre-conceived notions of black
sought help earlier or they would have women as under-achievers.
taken me more seriously or whatever,
but I went on, I kept going for a lot being an educated black woman
longer than could have really. means being judged by mental health
practitioners, which resulted, in my
Oh yeah, women of colour, African case, in over-medication. And I was
Caribbean, African, whoever they are, given this medication without even
there is a stigma attached. They are being asked about allergies or told
not supposed to have breakdowns. about any potential side-effects. They
We are supposed to be strong black didnt check my records, key history or
women. Put up an appearance and background.
take care of the house and so on. How
are you going to do those things? Another participant spoke eloquently
about experiencing sexual abuse as
One participant felt that the image a child, which generated extreme
of the strong yet subservient black feelings of anxiety when she herself
woman in society is a legacy of the became a mother. She started feeling
historical oppression they have had that her child might be in danger
to face both due to their gender and from (imagined) abusers and that
race. This legacy, combined with she would not be able to protect him.
contemporary attitudes towards She did not feel that anyone took her
women in society today, results in anxiety seriously, telling her to get on
a negative self-image which a lot of with the task of being a mother.
black women are fighting against.
I had all this stuff from my past
Well what I see is that a lot of black catching up with me and I need to
women go through a hell of a lot deal with it, but they still expect you to
of mental distress I am talking deal with it and it is wrong. It is wrong
about our extended family, what our to leave a young child with someone
mothers have gone through and who is feeling like I was at the time;
the whole thing about even slavery, maybe I was not the best person to
the impact that slavery has had on be with a child on its own because I
black women How we must dress was getting so paranoid that nobody
and how we must talk and how we could touch my child. So I think that
must be submissive and dominated it is wrong in society to give so much
and subservient and be abused responsibility to women especially
and not love ourselves and all those the parenting part and the emotional
different things. All of that has an loading I think it is wrong to have
impact on how we betray ourselves this image of women like theyre
as women I think the whole slave mothers, they are meant to be strong.
mentality, it has taken us, we are still
living it. I strongly believe that there is
a whole correlation between the slave
mentality and how black women were
treated then to how black women
are ignored in regards to their mental
health issues that are going on within
the community today, you know.
36
Attitudes about sexuality and Homophobia within
sexual identities psychiatric services
Socio-cultural attitudes about Homophobia and other fixed views
sexuality and sexual behaviours are on correct sexual behaviours were
as significant as attitudes about not restricted to the wider community
race and gender in gaining and outside. One participant believed
retaining a positive sense of self and that one of the diagnoses she was
belonging. The impact of negative given, borderline personality disorder,
attitudes towards non-heterosexual was based on how the psychiatrist
identities within communities and perceived her behaviour within the
within the mental health services on framework of accepted cultural norms
continuing to maintain a wholesome of gendered behaviour and sexuality.11
self are not considered within recovery
approaches, as some participants in I think some of my diagnoses were
this study pointed out. definitely given to me because I was
a woman and it would not have been
Homophobia within given to me if I was a man. I was
openly bisexual and promiscuous.
communities I think both these were factors in
Talking about feeling part of a being given a diagnosis of borderline
community, one participant said: personality disorder.

My colours not the problem at Her sexuality was seen by some


the moment, its my sexuality. For psychiatrists as wrong and as a part
example, Im looking to move, to of her mental illness and resulted in
find somewhere to rent and if I want them trying to cure her of it as part of
somewhere to live I cant disclose her mental illness.
my mental health issues and I cant
disclose unless I purposely go into a huge issue for my psychiatrists
the gay parts of town I cant disclose as well, the fact that I went with both
that because I dont know what the men and women and a lot of them
response will be. So it does actually tried to, kind of cure me of it, you know
affect me on a day to day level. sort of make me normal, so sexuality
has always been a very big issue.
Social participation through normal
community networks was sometimes In terms of preserving a positive sense
made difficult by negative attitudes of self that accepts ones sexuality and
towards gay people, or a perception of sexual behaviours, these narrators
negative attitudes. Participants talked had no solutions to offer, apart from
about avoiding community groupings learning to be selective about how
like church or black projects because and who they disclose their identities
of fear of homophobia. to. There was, however, an ideal
recovery space in mind.
Im still wary of black projects in
terms of homophobia Just even there would be a space that I could
being at work here, sharing an office go to where I felt safe, if I became
with a black project One of the staff unwell, definitely. Knowing I had
was saying that as black men we that would also help me keep well,
are naturally homophobic and stuff knowing there was somewhere for me
like that. I am not out, and so I am to go if I wasnt coping, somewhere
privy to peoples personal opinions appropriate, female only, you know,
and I find that there is quite a lot of for black women and accepting of my
homophobia. sexuality, I would like that.

11. The link between diagnoses


of personality disorder, especially
borderline personality disorder,
and perceived notions of gendered
behaviours across cultures, is well-
evidenced. See, for example, Wirth-
Cauchon 2001 and Becker 1997.
37
Placing recovery I think it would have been good if I
had someone to talk to, maybe like
within socio-cultural a counsellor but also a counsellor
contexts who kind of understood my culture.
I think it might have prevented me
from becoming ill The reason
The social and cultural contexts people have been nasty towards me
and causes of mental distress, was because of my race So I think I
including experiences of inequality, would have needed a counsellor who
discrimination and expectations of would have understood that. Even if
behaviour, are not always taken into that person was white, if they would
account in recovery approaches. have understood that
Often, the effects of these
experiences are pathologised as When people did meet services and
symptoms of mental illness. However, staff who were able to understand
for many people, as the narratives the locations of distress, there was
above have shown, these have to be a positive effect. In some cases, it
taken on board and made sense of in helped that the staff understood the
a socio-cultural rather than medical/ specific cultural locations of distress
pathological context in order to start and anxieties.
the journey of recovery.
My care co-ordinator was an African
Acceptance of socio-cultural woman. [This] made a big difference
meanings in mental health because suddenly my job of trying to
services explain where I was coming from, I did
not have to explain that part of it to
Addressing the damaging effects her, you know about being a black
of inequality and discrimination, woman, about being a black mother,
including racism, sexism, cultural about black culture... And because she
oppressions, or a combination of was a black woman, she recognised
these, was a key element in their certain things as well, about what I
sense of recovery for many women. need, you know, what my anxieties
Clearly, these inequalities have might be as well. I did not have to spell
not been eradicated; they have a them out.
continued impact, and developing
a positive sense of self and identity Building a positive sense of
meant that these experiences needed
to be addressed, first and foremost,
self and cultural identity
within mental health services. Many of A major part of what women
them felt that mental health services described as recovery is regaining a
did not take on board experiences of positive sense of self, re-negotiating
racism and other discrimination, and personal and cultural expectations
indeed were not capable of doing and having a sense of control over
this, essentially failing to address a who you are.
significant part of their distress.
I can say in one sentence what
I think I understand now actually I [recovery] means to me Its to be
have had years and years of being who I am meant to be actually and
suppressed and oppressed and not not what family or society or culture or
being valued and not being nurtured mental health services say I should be.
in the way that I needed nurturing. Its me being me. Thats as simple as
And being told that, actually there that really.
is racism here, and you are battling
against that, so no wonder you feel
like this. Even that would have helped.
Even to say you have not been
listened to very well. I think those key
messages would have helped just to
make sense of the world.

38
We saw earlier how the experience For some, recovery involved a political
of being from a mixed heritage process, exploring rights, questioning
background and being brought up in power structures and becoming
a trans-racial situation had generated part of movements like the survivor
conflicts in identity and sense of movement, anti-racism campaigns or
self for one of the narrators. A key womens rights movements. Trying
aspect of it was the perceived conflict to get psychiatry and mental health
between what she saw as her race services to take on board the effects
and what she saw as her culture. of racism was a political process.
Being able to work towards attaining
a balance in her sense of self and Its funny, isnt it, for probably 25
gaining a positive perception of the years, yes, probably for that long,
black part of her identity that she had [experiences of racism] wasnt an
denied while growing up was a key issue either for them [mental health
moment in her journey to recovery. services] or for me because it was
ignored but that in itself made it a
Gaining a sense of pride in the black problem really and I didnt realise that
part and realising how much Id until I had my awareness raised a bit
distanced myself from it growing up more really, again coming into contact
because black people were criticised, with people who were into the whole
they were second best. So I wanted to social black rights philosophy.
disassociate from that side. But then
actually reclaiming it as a positive Access to recovery spaces where
thing but doing it in a way where I there was an opportunity to discuss
didnt have to be fully black, I could still and share experiences of distress
keep my white side, finding a balance from specific socio-cultural locations
for both of them. And having a very was a significant element in some
brief reunion with my birth father peoples recovery.
and actually really acknowledging
that, wow, I do have an African aspect If I had not gone to the womens
to me And thats made a huge recovery group I would have been
difference to me in my identity, I feel back in hospital by now Maybe
much more integrated whereas before before [being a black woman] was
I was very split. not taken into account, lots of things
werent. I dont know if it was a gender
Attaining a shared identity thing or a race thing. I dont even think
through collective action it was deliberate. People just did not
take it into account; they did not think
Another key factor in moving towards it mattered you see But race and
recovery included addressing these gender really matter when it comes
conflicts within a collective setting in to recovery, you know, you have got
the context of shared understanding to take them into account, you know,
with other women in similar situations. you cant cut them out So yes, it was
basically starting from the womens
In my early 20s, I left home and recovery group and working outwards
moved to another part [of the country] from there. It covered all sorts of
and what was there for me was a very areas in your life, relationships and
active, vibrant feminist community. spirituality, sexuality, gender, covered
There was a lot of questioning everything from being a woman
of psychiatrists and the psych- anyway and being a black woman with
disciplines, seeing what this is doing all these different issues. So a lot of
to women, those kinds of things. So I things need to be addressed before
think that was the route that helped you can even move on and kind of
me, looking at psychiatry, or more look outwards
broadly what medicine was doing to
women.

39
Summary

Many people make sense of distress as arising


from the adverse effects of socio-cultural
experiences, including racism, sexism and other
forms of discrimination in society.

Negative societal experiences can lead to an


erosion of the sense of identity and self.

Recovery is predicated on being able to find ways


and locations to regain and rebuild a positive
sense of socio-cultural identity and belonging.

Recovery approaches based within mental health


services will need to take into account the impact
of socio-cultural contexts and causes of distress
and offer ways to cope with them.

Elements of recovery in socio-cultural


contexts include:
Addressing and overcoming the impact of
negative social experiences.
Rebuilding a positive sense of self and
communal identity.
Developing mechanisms to cope with societal
oppression.
Attaining a shared sense of identity and social
justice through collective action.
Access to recovery spaces where the specific
socio-cultural aspects of distress can be
addressed.

40
A story of spiritual connection with
the legacy of black oppression
The following narrative brings together several
elements discussed in this section mental distress Still suffering. Because some of us
and recovery as a spiritual journey, the continuing have got too close or our ancestors
impact of the historical legacy of oppression of are very close to us. And it is because
black people on the sense of self and identity, and we are now touching, because we
the inability of a western system of psychiatry in are now linked up with our ancestors,
addressing these key elements in some peoples we are being traumatized by this
experience. Now you see, I talk about
mental wellbeing. The narrator is an African
the slave trade and tears come. Do
Caribbean mother of two children, a campaigner of you understand me?
black peoples right to mental health and a scholar
of African Studies. My sister and I went to Ghana.
We went to Elmina Castle, we went
to Cape Coast Castle and we had
these experiences and I brought my
Yes, I think the spiritual aspects of ancestors back with me. We went
[our experience] are never taken in 2005 and because I brought my
into account in terms of western ancestors back with me it all added to
psychiatry. I dont think they have what was happening in 2006 [when
got there yet. They understand that she had a breakdown]. So now I have
spirituality is important in terms of this open channel another element
recovery but they dont take it into of our spirituality opened, it opened
account in terms of diagnosis and I up another dimension inside us. It was
think that is really difficult. like there was a door in the mind all
the time I could hear people knocking
Because I worked in African and and screaming, it was like I was
Caribbean culture, the transatlantic haunted because coming from this
slave trade was a big part of my remit closed door it was warped and I was
in my cultural teaching and also in not hearing properly, I could not get it, I
terms of what I was studying as well felt constantly tearful, angry and upset
and I went into it a little bit too deeply... and rage When we went to Ghana
And then all of sudden something and we went to the Castle, suddenly in
unlocked in me I started hearing my mind, that door opened.
my ancestors I could hear them
crying and I could feel their pain. All It felt like I had left Africa, gone to the
my female ancestors, I could feel them Caribbean, gone down to Europe and
and I could feel all their children and gone back to Africa and ended up
I could hear them on their voyage and back at the gate, that doorway again.
I could feel all these people coming So my ancestor had gone through a
to me through all my reading and it door like this, I could feel her, when
started to affect me and that was I stood at the door I could feel my
a problem. That was one half of the ancestor when she was at that door. I
experience that I could not even felt her.
talk about to my psychiatrist or to
anybody. You know this spirituality aspect
the fact that in terms of diagnosis that
And even to my care co-ordinator I has never been addressed. I never
cannot speak about it too much to disclosed it because for me, in terms
her because she is an African woman of what I know already and what I
you see [M]ainland Africans know from my training, it is not taken
they do not understand about into account and they cant take it into
the transatlantic slave trade It is account, they just dont know how
only now that they have started to to deal with it I think now there are
understand it, the pain aspect of it a few things that have been written
and the trauma that their African and about it and I think I need to read a
Caribbean brothers and sisters are little bit more about Post Traumatic
suffering still... Slave Syndrome.
41
Making sense of mental
distress and recovery in
personal and familial terms
Personal and familial [My husband] really made me
feel that women are no good that
causes and contexts women, if they dont listen to their
of mental distress husbands, they have no life My
family will think bad of me and all
the society will think bad of me and
Experiences of violence and abuse, of course nobody is going to marry
bereavement, loss and other me and all those things and he kept
traumas, tensions within families saying all that, all that. And I thought
and relationships, all contributed to if he hadnt said all those things, I
mental and emotional distress for the may not have felt this bad you know.
participants of this study. For some, So I think men sometimes in their
distress was a spiritual or religious selfishness and insecurities, they
experience. really make women feel much lower
than they have to. But when you
Experience of are already feeling sad and you are
violence and abuse pregnant and you are going through
abuse and you think that the person
Four participants in this study you trusted to know the best for you
connected their distress to having is saying all these things to you, then
experienced domestic violence in the you tend to believe all that and that is
form of physical and mental abuse when things make you I had no self-
over an extended period of time. respect, and also courage
Five other participants had
experienced sexual abuse. A total Erosion of self due to abuse
of 15 people spoke of first-hand
experience of physical, mental and/ Two of the participants had been living
or sexual abuse or of having grown in a situation of daily violence when,
up witnessing or being caught up in in the outside world, they were seen
abusive and violent situations. as socially and politically active and
productive. This situation created
In addition to the pain and trauma significant crises in their sense of self
of physical and mental abuse, the and self-worth. One woman spoke of
experience of domestic violence being in a relationship with steadily
eroded any sense of positive identity escalating violence which eventually
and self-confidence. saw her admitted in a hospital.
She was also a political activist, a
councillor who worked with women
experiencing domestic violence,
campaigning for better policies for

just that twitch inside says I need to recover What


made me want to recover was when I was in hospital
my two children were 7 and 9 and they brought me a
painting of a mother platypus and a baby platypus and
42
that is what made me say my children need me.
protecting women and counselling Creating negative self-images
women trying to escape situations of
violence. It would be easy to think that Another participant who had started
a woman in her position politically accessing mental health services in
aware and with access to outside help her twenties talked about growing up
would be able to walk away from that witnessing violence as a result of her
situation quite easily. But overcoming fathers alcoholism:
family and cultural pressures and
leaving such a situation is not as easy My childhood was quite marked
as it seems. She spoke of the effect of with a lot of violence. My dad had an
the conflicting roles of being a political alcohol problem. On the one hand
activist and of being in a situation at he was this wonderful, loving, giving
home where she was caught up in the person and he was always finding
daily violence of her own marriage. new things for us to do, educating us
in the best way possible. But it was
sometimes you dont realise you almost a complete turnover come
were socialised in a particular way weekend and he started drinking and
until when you are in a bad place there was lots of violence. He used
and then you seek help and then to beat my mother really, really badly.
your cultural norms suddenly act Everybody My grandmother used
as a barrier As a councillor for a to live with us. He used to beat her as
very long time I did a lot of domestic well. My sister, too. I used to hide in a
violence case work and it used to room and not get involved So I think
be traumatic for me I was doing all for me personally my issues were
this sensitive counselling, when I was quite connected to the violence that I
also submerging is that the word was witnessing and my inability to do
suppressing the pain I was in and anything about it. Why I would have
I was being strong for other people felt the need to do something about it
but I was thinking who is going to be at that young age, I dont know.
strong for me? Because in my culture
this is the African and western She makes a clear connection
world colliding and both cultures, between this perceived need to
strangely enough, believe that if address the violence in the family
your husband beats you it must be and developing self-harm as a coping
something you did. So the fault is all in mechanism she started to self-harm
the woman and just no responsibility in her teens and continues to do so
on the man. Behave as you want, its even today.
her fault, totally its a no win situation.
And then were Catholic! I think in society women are brought
up to be non-violent, to not do
Some women made clear connections anything that is harmful to yourself
between abuse and trauma and their or to others. In some ways, initially
mental distress experience, while I think that the fact that I cant be
others talked more about the indirect aggressive towards the world is what
effects of abuse in terms of creating turned aggression inside of me. Thats
patterns of behaviours and self- how I used to think about it in those
images that were detrimental to their days that, you know, I cant beat you
wellbeing. up so I will just cut myself to my dad
mainly it helps me really in dealing
I would say I was recovering from with my distress, you know? Every
abuse and trauma and I had quite a time when I have reached a point so
lot of abuse through childhood and low in my life, cutting myself sort of
through my teens until I was 19, thats brings me back up and makes me
physical and sexual abuse. I think normal.
thats the basis of my mental distress
or mental illness. For another participant, the abuse
and trauma in childhood had created
extreme levels of anxiety and anger
which became, as she puts it, a
pattern of emotional behaviour, that
she replicated in later life.
43
lots of different thingsit was like
peeling back an onion, so if it wasnt
this, it was this, you know?

In other cases, a specific traumatic


event became the proverbial straw
that broke the camels back.

I feel [my mental health problems


are] due to the struggles of life,
struggles of my past lives and the
I think my condition was probably traumatic experiences that have
depression, anxiety and that happened in my life. I think that the
stemmed from child abuse. Other last straw was when my partner
family traumas that happened. My committed suicide because in three
parents were always having violent months I ended up in hospital but I
fights And I had an eye condition didnt know I wasnt very well.
and my mum covered my eye, the
only eye I could see properly from, Family dynamics and tensions
so I distorted my own childhood I
used to blame myself for things that I Family dynamics had a key part to play
thought were my fault because people in some peoples views on the causes
did not explain to me anything and of their distress. Perceptions of how
it became a pattern of emotional well one coped with that dynamics
behaviour. I chose relationships and feelings of being accepted and
with people and situations that valued within family relationships were
sort of kept this pattern going and important to peoples self-worth. In
then it becomes depression If you some cases, family traditions of ways
are anxious, you do not sleep, you of being and behaving, and embedded
become depressed, maybe become a power hierarchies were felt to be
bit of a misanthrope, because you are stressful and to cause conflict.
not really at peace with yourself, you
are a bag of nerves really and then you I think I have always had conflict with
become really angry. And my problem my father-in-law, that has always been
was just dealing with the anger with there and now since he is older he
what happened and not really coming has kind of calmed down a lot more
to a conclusion or closure. and I have learnt not to let it get to
me And then there was favouritism
Bereavement, loss and between the sons and the daughters-
other traumas in-law and that used to bother me
He will whisper in my mother-in-laws
An abiding message that comes out ear and my mother-in-law will whisper
of the narratives is the cumulative it to my husband and my husband will
effect of different traumas and whisper it to me and it is just never up
the stress that results from not in the air, not out in the air.
addressing these traumas properly.
It is difficult, in some cases, to For some participants, family cultures
pin-point the exact event that and notions of dignity and shame
precipitated distress, but it is clear perpetuated the distress that they
that unaddressed, and sometimes felt from being in traumatic situations.
unacknowledged, traumatic emotional The feeling of not being supported in
experiences had a great significance overcoming such situations, added to
for participants in the way they made the experience itself, caused a sense
sense of their distress. One woman of helplessness and loneliness. Having
spoke at length about the loss of suffered a long period of violence,
her father, being financially swindled one participant had left her husband.
by a partner she trusted, tensions Being told to be secretive about her
within the family and the combined marital situation and her distress was
effect of these factors in causing her an added pressure.
breakdown.
44
my mum would say, dont tell The problem I think was the high
anyone Dont tell anyone about your requirements I had with myself and
problem. Even if it is just to protect also trying to see certain things in
us, it does make me feel also this is certain ways Our family used to be
something bad, thats why we need to like this when we were in Ethiopia
hide it It does give the impression and now they are here as refugees
of shame and embarrassment and and there is all this disagreement and
next time if I ever feel low Im less discord going on in between because
likely to share it with my mum. Why we had not been living together for
Im bringing her pain and upsetting so many years. And I have to again
her and then you know she might feel learn to understand my mum or my
embarrassed as well dad or my brothers, you know?
And I had this, because that was the
Anxieties about responsibilities only thing that made me survive in
and fulfilling expectations Sweden, having that picture of where
I came from and that supported me
Things happen around me or with What kept me, you know, from losing
me. I dont know if the pain is from the myself or losing my identity was always
past or present If my son, if some remembering this is how I grew up, this
friend of his says some bad things is where I came from and my parents
to him and he cries at home, I feel and my family is like this. But when
that I have not been a good mother. they came to Sweden as refugees
I dont know, anything could trigger there were all these issues and
it I personally felt nothing is going suddenly I was confused, you know,
to happen, things would get worse. I and tried to make sense of it but
dont know, whats the word? Despair.
For others, the responsibilities
For women who had been in abusive involved in raising children and
situations, this sense of despair was parenting, especially as a single
a common one that they needed to mother and with no support
overcome as part of their wellness systems, added to the pressure and
process. Taking on the responsibilities accumulated stress. Speaking of a
of being a good mother or daughter range of issues including being a
or sister, while also feeling vulnerable single mother to seven children, two
themselves, took a toll on their of them with disabilities, trying to get
wellbeing. Part of it was a personal support from social services, dealing
sense of responsibility and part of it with difficulties in school, even as she
was familial and cultural expectations was dealing with her own experiences
imposed on them. Either way, the of abuse, one participant said that
feeling that they were not fulfilling having had the time for a breakdown
these roles properly seemed to would have been a privilege.
increase stress and decrease belief
in self. This is what caused the mental
distress. I literally didnt have the time
One participant, originally from to have a breakdown. I have never
Ethiopia, was sent to live with an had the time to have a breakdown. If
aunt in Sweden at the age of 12. I had the time that might have been
While growing up she also took on a privilege, do you understand? I had
the responsibility of looking after her no time to have a breakdown. I just
two siblings. Then when her parents kept going, kept going, and what was
came to join her as refugees, she had actually happening was that my health
to re-learn how to fit into the family, was deteriorating, my blood pressure
re-adjust the picture she had of her was going up, I had high cholesterol,
family while also taking care of them my ankles began to get weak, my
in a practical sense. She connects her hair started falling out that was the
breakdown to the various levels of result. Did I have a breakdown or did I
stress involved in fulfilling this role, not? All I know is that I kept going.
while also working and studying.

45
Distress as spiritual or I think it was stress, lack of
religious experience understanding, bottling up my
feelings, not knowing who to talk
In the earlier chapter, we saw a to Sometimes it is one of those
participant describe her mental situations where you have got to take
distress experience as a result mental illness as a blessing as well
of a spiritual connection with her And when I say its a blessing, I mean
ancestors and the legacy of slavery. maybe it could just be that its a gift
She was wary of describing this from God as well, you know, instead of
experience within the mental health a negative thing, because there was a
system as, quite often, spiritual crises time when I was in denial when I didnt
and/or experiences of a religious understand it but I turned it around
nature are misunderstood or not and started understanding it from a
taken into account within the mental positive point of view.
health system12.
One person firmly rooted within her
Spirituality and faith were important Christian faith (her entire narrative
parts of some participants identity focused on her faith in Christ and its
and sense of self. In some cases, role in her recovery) explained her
although the causes of mental experience as a trial of faith:
distress were identified in social,
personal or familial contexts, the Its just trial. I would say it is a trial of
understanding or meaning of my faith whether I will deny my God
distress was in a spiritual or religious whatever comes my way, even death,
context. For example, in the previous whether it will usurp me from the love
section, we examined the narrative of Christ.
of a participant who talked about
reconnecting with her family after Community attitudes
growing up away from them while towards mental distress
having to be responsible for them
when they joined her as refugees. The journey towards recovery and
While she located the causal factors of the ability to call upon sources of
her distress in these events, she made resilience becomes more difficult for
sense of the experience of distress in some people when they are faced
a spiritual way. with negative attitudes towards
mental distress within their families,
I only see myself as someone immediate social environments and
who had suffered a breakdown communities. For some, there was
and I recovered even though I had familial pressure not to talk about
relapsed I dont know, it is very mental health problems because
difficult to say I feel like a better of the prevalence of stigmatising
person now than I was before. A attitudes about it in the community.
process of, you know, insight and
some kind of spiritual insight even if There is a general belief in hereditary
it was difficult and it was frightening,madness So if there was madness
you know? I need to have some kind in a family, nobody married anybody
of reminder that there is something from that family, that kind of thing.
else and that I should not take myself So we did not speak about it I
too seriously and just be, you know, remember, in my 20s, once I went
humble. home after a really bad bout of cutting
myself the scars are still here and
Another participant, who defined even today the family myth is that I
herself as a religious person, had been was attacked by a monkey! That was
given a diagnosis of schizophrenia. the story that was made up to tell the
She accepted the diagnosis as a neighbours because they were quite
12 .See Cornah 2006 and Ndegwa,
medical condition and located the bad visible scars.
Kilshaw and Curran 2002. It is origins of her psychotic episode
important, however, to keep in
mind that there is often a confusion in issues related to stress, but the
between spirituality and religion
and explanations of spirituality differ
personal meaning she gave to her
widely between cultures (Fernando experience was within a spiritual
and Keating 2009).
context.
46
Other participants spoke of similar
beliefs and felt the need to adhere
Placing recovery
to this pressure and hide their in personal and
experiences from their community,
despite this having an adverse effect
familial contexts
on their recovery.
Three key things needed to happen
in order to recover from the distress
[My parents] try to find me a partner
caused by the situations discussed
and Im going to these marriage
above removal of/from stressful and
bureaus, matrimonial websites. So Im
abusive situations, learning to make
very conscious of the fact that I have
sense and cope with the effects of
to hide the fact that Ive had a mental
such situations, and receiving support
illness and it feels quite horrible
for coping. In all cases where abuse
actually, the fact that I have to keep
and violence were core factors, the
lying. Sometimes I think, is this what
narrators had managed to leave those
I want from my relationship, where I
situations behind, through divorce,
have to keep lying to the person who I
growing up or moving away. It was
expect to support me in my life.
more difficult to learn to live with the
effects of it and regain self-worth, self-
In my culture mental [distress]
confidence and a positive outlook. For
is seen as a sign of weakness
some, this was an on-going struggle.
Weakness and oh, shes not one of
Finding supportive contexts in which
us then, and to feel, to fit into that
to heal and grow had been especially
situation Ive learned to act I just
difficult for many narrators.
force myself to keep sitting and
acting as if I dont feel anything and
everything is normal. Addressing personal/familial
contexts within mental
health services
Well, my first meeting with mental
health services was when I was
14, with child psychiatry, and it was
absolutely horrible. I went to see a
child psychiatrist and she was just so
cold why arent you in school, that
kind of thing. If she had been more
open and more helpful maybe my life
would have gone down a different
route Social services were involved
at the time and they knew the family
situation I would have preferred
the abuse to have stopped at home,
I would have wanted reassurance, I
wanted a way for me to understand
my psychosis and just people actually
caring It seemed to me that the
reason I was involved with social
services and child psychiatry was to
get me back to school I refused to
go because I was just so paranoid of
people. Nothing about helping me or
supporting me. If they had done their
jobs I think my life would have been
much different.

47
The excerpt above captures a I have had counselling on a number
recurring theme in these narratives of occasions and to me that is like
that mental health services and my recovery, a guidance on my
social services did not offer support recovery because I might think that
in understanding and overcoming I am recovering but you know I dont
abusive situations but pathologised know everything so I have sought
the effects of abuse. The issue most counselling in order to sort of voice
often raised was that there was no what I am going through and to kind
one to talk to. of steer me and to re-cap, go back the
next time and re-cap whats happened
Somebody that can talk to you and and talk about whether I feel that
explain to you what is going on or thats worked for me or not so I have
what is happening with you and whats sought services because I couldnt
best what they know is best as well have done it alone.
as listening to what I have to say
Where it had not worked, two
Access to counselling issues were significant: first, that
and talking therapies the therapist or counsellor did not
understand or address socio-cultural
A large number of people (19 of the issues; and second, that they were
27 participants) who took part in not being offered help to cope with
the study had accessed some kind the personal and familial issues
of counselling and therapy. Some that people saw as the root cause of
were referred through the mental their distress.
health system and some found it on
their own via community groups and
womens groups. While people had
Feeling safe within services
mixed views about its usefulness in Another key issue that was raised was
recovery, overall, 13 of those who had the need to feel safe within services.
access to counselling had positive It was an issue for all women, but
views about it. Nine participants those who had experienced abuse or
had never been offered counselling, violence felt it more keenly. A major
therapy or any other non-medical issue here was the absence of single
intervention. sex wards and separate facilities for
women13, as this narrator who had
Being offered counselling or therapy experienced child abuse says:
was not as straight forward as it
seems from the previous paragraph my first two times as an in-patient
one person, whose main issues arose I was on a mixed ward and that was
from a history of child abuse and who horrible and I dont ever want to go
entered the mental health system at through that again. I almost was
the age of 14, had to wait 22 years assaulted and its only because Im
before being offered it. quite tall and a big woman and Im
not scared to use my fist it didnt
I had to wait 22 years before I got it. happen. But I shouldnt have been
After asking for it for 22 years! And it put in that position in the first place
was then I started to feel better about and when you are very distressed and
myself. So them thinking giving me depressed, having [men] come up to
the tablet was the cheaper option, you and say [abusive and intimidating
actually it wasnt. things] how is that supposed to help
my mental health!
13. The Count Me In 2009 report
says: 73% women were not in
Counselling and psychotherapy
a single sex ward; 24% women helped most people because they The need to make women feel safe
reported not having access to toilet
and bathing facilities designated for valued, as mentioned earlier, having was not taken seriously by some
single sex use; 51% of all patients
had no access to a lounge and day
someone to talk to, and work through professionals, according to two other
space designated for single sex their distress issues and find ways of participants who had specifically
use. Andrew Lansley, the Health
Minister, has said that he planned coping. For some, it was also a guide requested to work with female staff
to announce the end of mixed sex on keeping track of their journey. but were given male staff on home
wards across the NHS, except in A&E
and ICUs, by the end of 2010 (The treatment teams.
Daily Telegraph, 16 August 2010).
The result of this announcement is
still to come.
48
Supporting the The process of recovery was also
family as a whole affected by differences in a persons
and a mental health professionals
One other significant factor perception of family obligations and
mentioned by a number of the role of family members as carers.
participants is that mental health One participant had a brother who
services need to support people as travelled from some distance to visit
a family that recovery was not her in hospital and, after she was
possible unless the immediate family discharged, helped to support her in
was enabled to support the person the process of getting better. When
in distress. she wanted her care coordinator
to interact with him as her carer,
As a family, not just helping the care coordinator refused to see
me because my family are not him because, according to her, he
understanding whats going on. I feel was expected to do his duty as a
[they] are keeping me separated from brother and so was not entitled to be
them. It would have been nice if they classified a carer.
could bring in my family and explain to
my family whats going on so that they having your care coordinator
could come in from a different angle. argue with you saying that but he
is not your carer, he is your brother,
One participant felt that a Eurocentric he is supposed to care for you and
concept of psychiatry and mental Im telling her no, he is my carer, he
health care was focused on spends so much time She just
individualism rather than the collective accepts, you know, that your family
in her case, the immediate family. are supposed to care for you, but in
While her distress had origins within her role as a care coordinator/social
the family and community, she saw worker it is actually to provide people
her recovery as also rooted within with carers or you know help in the
these contexts. Thus, early encounters best way possible
with the mental health system proved
to be confusing because she felt the The narrator, who was from an
focus was placed on moving her away African background, understands and
from her family rather than helping shares the African-Caribbean care
her learn to overcome and deal with coordinators cultural views around
the tensions and stresses in her families supporting and looking after
relationship with her family. each other, but feels that, in her role
as a mental health professional, she
it felt like the focus was on being needed to work with what the person
very independent and also moving seeking help would find most useful.
away from my family because my
family were the cause of all my
problems Looking back, I think
Supportive professionals
actually that was the worst thing they When services aided recovery, it was
could have done because I have mainly through having professionals
been brought up in such a way that who cared about providing
actually not having my family around opportunities to build up self-
is worse than having them around. confidence and supporting in practical
And what I need to do actually is ways, and being given a range of
learn how I could get what I needed options to explore.
in terms of feeling part of them but not
get drawn into their reluctance I think [what helped me] was support.
to accept me and who I was A good care team. Good means
Looking back on it now, it was people who listen, who support you
interesting but it also made me realise and who, not complicate things, but
that that Eurocentric bias is quite like I said give information in a clear
challenging really. way and also who get results It is
people who get together a way of
supporting in what you need and it
is important to have a safe place, it is
important to have financial security
49
like with benefits or whatever it is, Finding closure to
and then health and wellbeing. And abuse experience
that your care team provides this in
a clear and simple way, not It was important, for most people
complicating things. whose distress was based on
experience of violence and abuse,
Finding a psychiatrist and other to find some kind of closure to that
mental health professionals who experience. For some, this involved
helped boost self-confidence was the family/society acknowledging the
another enabling factor. When a existence of abuse and its
person has been through several after-effects.
periods of distress, it is easy to lose
track of any sense of self-worth. It has taken many years to
One participant talked about the role understand what has happened to
of her psychiatrist in reminding her of me but also I think a big part of it
her worth: was to make others understand. I
think for me it was a big issue that
He said to me once: however bad other people had to understand. I
things get or however mad I am the would say I only really thought of
good parts of me dont disappear. And recovery as being part of who I am
it sounds really stupid but its really only when I could start speaking to
obvious now. Nobody in almost 20 my parents and family. So it has been
years had ever said that to me before. about making me understand what
is happening to myself but more
Supported housing (three of the importantly also making other people
participants lived in supported kind of They dont have to agree
housing), user-led groups and with it but they had to acknowledge it.
voluntary sector projects offering Acknowledgement is part of it, quite
services for mental health service a big thing. I would say that is the
users and for women who had main thing.
experienced traumatic life situations
were given as examples of recovery One participant whose experience
spaces where people could meet of child abuse, both of herself and
others with similar experiences, her sister, was the main cause of
explore educational and vocational her distress, explained how she had
options and participate in activities to come to terms with it in several
that created a sense of community. stages. Firstly, she went about piecing
For most people, the first step in together the history of abuse, a time
accessing these opportunities was line as she called it, by talking to her
the support from professionals siblings, figuring out what memories
working in health and social care and were real and what were not, trying
in the voluntary sector. to understand what really went on.
It is important for her to focus on
the trauma that caused what she
calls her psychosis rather than
treat its symptoms. Secondly, this
understanding brought her to a point
where she could forgive herself and
forgive her abusers, which she sees
as an act of giving the responsibility
back to them.

50
What happens is that before one The most direct things that have
gets into psychosis or develops helped me I would say have been my
anxiety, something happens, like a mum, my dad and my family, because
trauma, a situation and if we do they have been understanding and
not try and piece things together supportive. I mean there was a time
and understand what happens, we when they werent understanding
dont understand the nature of our and that caused a lot more mental
psychosis What I found important distress for me, but because they
was to understand the core issues started understanding and showing a
and to confront them. If I [were a] little empathy, it was really beneficial
victim, who was accountable for it? for me.
And even though I confronted all this,
I had all this anger about it because Finding a way to address the
those people were supposed to tensions and problems within
protect me and they did not. But I familial structures and relationships,
can forgive them, then it is giving the mainly through open and honest
responsibility back to them. I forgive conversation, was a key aspect of
them so they can acknowledge recovery.
I dont have to feel angry anymore
because I have stopped my Many years ago, at the height of my
connection, the role I was playing dads violence, my mum finally gave
in my own trauma, I am not part of up and tried to kill herself She was
it anymore. rushed to the hospital and eventually
got better. After that, we all sat down
What this narrator describes is with my dad and said to him that you
an enormous emotional task that have to get some help otherwise we
requires a huge amount of courage. In are all going to leave. So eventually
her case, she had to do this alone with he agreed and we found out that his
no support from any of the services alcoholism along with some injuries in
she accessed or from her family. his brain, blood clots in his brain, had
Confronting abusers seemed to be a created this extreme situation [We]
preferred element in finding closure took him to a hospital he underwent
for many of those who had been de-addiction and other treatments I
abused, but not many had been able think that whole period of dealing with
to do it. But a broader social/familial so much distress within the family in
acceptance of the existence of abuse a bizarre way it was good for all of us.
and its after-effects seems to give a A lot of things were talked about, not
sense of social justice that helps to in a blaming kind of way. It was more
rebuild the sense of self. about, there is something unwell
about this family which needs sorting.
Healing with talk I think all of us started our journeys of
recovery from there on in some ways.
While the family was the location I think a lot of trust was built then as
of distress for some people, it was well I think there was a lot of give
also the location for healing. Many and take and when the family healed
participants highlighted the support of in some ways, I think all of us started
family members and significant others getting better.
as a key factor in their recovery the
word empathy was often repeated. Sometimes the familys role is not in
addressing the causes of distress
but in understanding and being
able to support the person through
their journey of recovery. The stigma
attached to mental distress, common
across cultures, had become a barrier
for some people and the family and
close friends had a role in helping
them overcome this stigma and
propping up their sense of self.

51
What helped was being able to talk Rebuilding self,
openly and honestly with my family regaining control
about being in hospital Being able to
talk to my colleagues, my co-workers One of the after-effects of violence,
The biggest part of mental health trauma and accumulated stress is an
is the stigma attached to the crisis erosion of the sense of self and control
somehow like you might contaminate over ones own life. Recovery, for all
someone, you know, and just feeling the narrators quoted in this section,
that I was an emotional drain on involved rebuilding a positive sense of
people My family and friends didnt self and regaining some control over
make me feel [that way] and I think their lives. This process did not start
that was the biggest things. Being until they could remove themselves
able to talk to them about it enabled from the stressful and traumatic
me to think through things in a much situations sometimes a breakdown
clearer way. allowed them to start this process.

Being able to develop a familial A key first step in this journey is


language to talk about mental distress acceptance of the trauma, of the
itself has helped some people, existence of distress, of who you
including laughing and joking about have become in the process. It also
a mother who is up with the fairies involves accepting ones emotions
or having a laugh with their mad and being able to overcome the sense
daughter. For people living in close of failure.
relationships, an important part of
recovery was the significant others Creativity
understanding, acceptance and
For two narrators, writing their
knowledge of experiences like voices
memoirs was the tool that helped this
and visions.
process, leading them to examine the
events of their life in more detail.
One participant described how she
has been able to live with her voices,
For the first time ever I had empathy
visions and sensory experiences
for myself I actually had proper tears
what doctors call hallucinations
for myself for the first time reading
with the help and support of her
my story. I didnt feel like an alien, it
husband over a period of ten years,
didnt feel like an illness or a sick thing
the last four without the aid of
or a broken thing. I could see myself
medication. Having her experiences
as a person who has gone through
legitimised and not dismissed had a
a lot and is reacting actually quite
positive impact on her recovery.
appropriately to the distress that has
been heaped on her It was a just
I have sensory hallucinations, so one
reaction to a horrible situation. So
of the things I had [recently] in the
that was actually the turning point in
house I start smelling fish and chips
my life.
I just couldnt stand it. I kept saying the
whole house is full of it, I cant breathe,
Engaging in creative activities also
I cant breathe, I cant stand it. My
helped build and maintain a sense
husbands reaction was interesting.
of calm for some people. Apart from
He cleaned the house, put flowers
writing, art, photography, making
everywhere, went out and got candles
quilts, gardening and cooking were
and joss sticks. But he didnt tell me
mentioned as creative activities that
that, no it is all fine, it doesnt smell,
gave fulfilment and a sense of calm.
there is no fish and chips smell in the
house. Instead he said ok, maybe we
will do something about it. Empathy for self
As expressed in the quotation in the
She said she also makes sure that, previous section, empathy for self
after every episode, she and her and the act of forgiving oneself is a
partner have a discussion about his recurring theme in these recovery
experience of coping and looking after narratives.
her, which helps to identify issues that
might be frustrating for him.
52
Forgiveness, I think to a large extent Part of the therapy or part of the kind
being able to forgive myself for things of journey was going back to work and
that I felt I didnt do as well as I could that made me feel better. It made me
was part of the recovery because I think, oh I am worth something. I can
did feel that I had let so many people do something.
down.
When I wasnt working I felt not being
There was a sense that, although part of society, I really felt that I was
women were seen as emotional in this kind of underground society
beings, accepting ones own emotion in a way and I have come out and
as legitimate and being able to seen people getting ready to go to
express them without censure was work and I felt left out. While I was
sometimes curtailed. An important out during the day, I met up with
part of recovery for some people women who have children or other
was learning to accept and express unemployed people or other people
emotions. who were unwell and I felt really that
wasnt the lifestyle I wanted. I wanted
Oh, I think its allowing myself to to participate in society, so I got myself
be emotional and to accept my a job Work is the focus for me, that
emotion I think being honest with keeps routine, it gives me something
myself about what I feel and then to do, it makes me feel part of society
allowing myself to accept those and also gives me freedom in terms of
emotions and to act on them rather money.
than suppress them.
It was also clear that for some
Control over ones body and life women regaining a sense of self-
worth and identity involved a physical
The sense of control over ones own
transformation as well. The trauma,
life a key element of recovery came
the distress and its treatment
through seeking out the required
(including medication and being
information about ones condition
institutionalised) had a bodily effect,
and support systems and being
and exercise, controlling weight,
able to be in a position where they
wearing good clothes and feeling
can make decisions about their own
attractive were all integral parts of
life. It is important to note that, for
recovering.
some people, having to continue
medication is seen as depleting the
You know, I have just gone back as
sense of control one has over ones
much as I can to do the things that I
life recovery, in this sense, gains
enjoyed doing in my old life. I am Miss
a different meaning, which will be
Pampered, I kid you not. I have my hair
explored further later in this report.
cut every six weeks, coloured every
five weeks, when the local college
I would say of course it is important
is open I have a weekly massage, a
to have support from friends and
facial every fortnight, a pedicure every
family but most of all, self-educating.
month and all this is part of me, an
I think without you having awareness
important part of me.
or your own knowledge of what has
happened, what your condition is, it
All of this ultimately meant an effort
is very difficult to understand what is
to reclaim control over ones life,
real and what is not from whatever
despite the continued restrictions
your psychosis at the time. So
to the extent of control some people
educating myself.
felt in terms of having to depend
on medication, social support and
For people whose self-confidence has
other means. Recovery, in the end,
been eroded because of traumatic
was firmly rooted in the sense of
events and their after-effects, the
control one had in living ones life and
idea of regaining self-worth is a key
determining its course.
component in recovery. For some, self-
worth came via having work, being
involved in activities and meeting
people.
53
My recovery was based on saying to Others found grounding in cultivating
myself this is not all the story, I have to spirituality as a way of being and
take control and manage all aspects finding spirituality in nature and
of my life, no one else could do it, but the environment. For some people,
also knowing when it was time to get however, a religion-based faith was the
help and how to get it. most important thing, finding meaning
in the word of God, communities,
Spirituality and faith rituals and prayer.

As we saw earlier, for some people, A sense of community


mental distress was a spiritual and participation
experience or a crisis of faith. They
understood healing and recovery Having a network of people around
also in that frame. And for some has really made a big difference. The
others, although they did not define cultural network, I have got the church
their distress experience in a spiritual there, I have got the key worker right
mode, spirituality and faith were key there, I have the care coordinator
factors in keeping them well. there, my sister is there to phone me,
so not being isolated, not allowing
For some, a personal spiritual yourself to be isolated and people not
foundation was part of their identity allowing you to be isolated as well
and one that they practiced according
to their own definitions. Accessing The above excerpt shows the
religion-based spaces can be difficult importance of a range of community
for some people; indeed one person and support systems that aid recovery
spoke of avoiding religious spaces and keeping well. The participants
because of fear of homophobia and spoke of a number of different things
another person spoke of an incident they did to ensure that they had a
of being rejected by a church because sense of place within their immediate
she was a divorcee. Nurturing a community, a sense of purpose and
personal spiritual foundation and participation. For some people, giving
finding ways to practice it was back to the community through
important for them, given such voluntary or paid work, campaigning,
scenarios. user involvement and raising
awareness, especially in the fields of
I would describe myself as a strong mental health and race equality, was
person who derives strength from my a key part of maintaining a sense of
spirituality which is very important community.
to me and which is where I get my
identity from and not from what Im getting a project together
people may see when they look at because other people on this estate
me or what they say about me or have mental health problems so
what they think about me. And I think that people on this estate will get
it is very important to have that self- some education on mental health
identity. awareness, you know, and not be
frightened of their neighbours. To
I practice what I call my own religion know what to do if they have not seen
really, what I have decided is right somebody for 2-3 days Weve got
for me At 15 I turned to my father to make it safe for the children For
when I was in great turmoil having just our bodies. Lets make it safe for our
arrived [in the UK as a migrant child] mental health
and asked him, what is God? My father
said to me all that you see around you My interests are more based around
and nature. And that was the most mental health issues and raising
powerful answer That really has awareness and my main aim is to
seen me through, you know. try and get more attention from
mental health professionals and
pharmaceutical companies to design
drugs with less side effects. This is my
main aim.
54
Summary

Many people attribute their distress to traumatic


experiences in personal life and within families,
including violence and abuse, bereavement,
loss and other traumas, and tensions in fulfilling
responsibilities. Some make sense of distress in
terms of a personal spiritual crisis or crisis of faith.

Key barriers to recovery were negative attitudes


about mental distress within families and
communities, and mental health services inability
to adequately address personal and familial
causes and contexts of distress as part of the
recovery approach.

Elements of recovery in personal/familial


contexts include:
Finding closure to abusive situations and
experiences and getting the support to come to
terms with its effects.
Regaining a sense of control over ones life.
Learning to accept oneself and ones experience
of distress; having others accept these as well.
Being able to talk openly and honestly about
issues with families and significant others.
Gaining a sense of self-worth through work,
community networks and participation.
Nurturing a personal spiritual grounding
and/or faith.
Finding support in addressing these issues,
both through empathetic professionals and a
safe space to recover.

55
Many lives, many ways of healing
part of the therapy or part of the kind of journey was going back to work and that made
me feel better. It made me think, oh I am worth something. I can do something.

Keeping in touch with reality. By going to day centres. I go to a place called X There are
people that care. They do not get on your case They answer questions, if you want to plan a
day trip you can do that, it makes you feel a part of it.

There are successes all the time in my life now If I can have that attitude then I know I am
getting somewhere Also as a matter of enjoying life as well... And it is not about life actually,
it is just having a different perspective on it.

Praying, it was really good because I felt less guilty, I felt empowered, I felt I had a
relationship with God and once you have a relationship with God you have no worries in the
world you feel safe

One of the most precious things [in my house] is my garden I think two years ago when
I had quite a major relapse, one of the things that helped me was seeing the butternut
squashes growing in a way that was a metaphor for my recovery.

learning for myself. First of all what is it, what is happening to me and even more
importantly, learning how to heal myself and how to help others help me heal. I think that is
the main thing.

responsibilities. If I dont do this who is going to look after my son? It is love and pressure,
it is happiness and sadness, it is all mixed.

Things like my relationship with my niece the children in my family have been crucial.
Things like the friends I have made Nowadays mostly my friends are people I have met
through mental health service stuff So those relationships have been really important.

Sometimes you get side effects on the medication which can be a lot of fidgeting or anxiety.
[Massages] help me calm down, they help my system and I find it can give me mental
strength to control my thinking, my moods.

being out in nature just absorbing, particularly the colour green, but absorbing all sort
of natural phenomena and thats still something that recharges my batteries.

meditation, yoga, those kind of practices Im trying to constantly be mindful of my


sensory experiences, how I feel emotionally why Im reacting to something the way I am.

I scribble a bit thats quite useful. Get things out of your head and just put them down on
paper. That helps me.

The only thing that has been constant is my creativity, thats kind of my lifeboat really
Creativity gives you control in a life where there isnt really any and its a form of expression,
its a form of catharsis

I regularly work out, my eating habits have changed. I dont comfort eat anymore thats
the main focus for me and thats whats keeping me alive I think. Its keeping me looking well
and loved.

figuring out what actually helps me having enough sleep, for example, even with the
help of sleeping pills, trying to be calm and sitting still. [My] interest in making quilts comes
from the idea of learning to do something that is calming.

I go to the temple as frequently as I want and I read the Gita and I find that really kind of
helps me touch my inner self and gives me some stability

56
Making sense of mental
distress and recovery in
bio-medical terms
Bio-medical contexts Even as she accepts the diagnosis
and the medical explanation that
of mental distress comes with it, she also sees her
experience as a blessing, a gift
Continuing from the question what from God. This participant regularly
would you say you were recovering attended service user groups and self-
from, we asked the participants of help groups and seemed comfortable
this study to tell us what they thought with taking on a service user identity.
of the diagnoses given to them and She feels that being in touch with
how that fitted with how they made mental health services and having a
sense of their distress. Six of the 27 diagnosis has helped her find new and
participants did not have a formal interesting things to do.
diagnosis, although two of them had
been hospitalised; five had positive its like theres other things that
views about their diagnoses; three ever since Ive had the diagnosis Ive
were ambivalent but ready to go along explored and Ive done so its not
with the medical explanation that they there to hold me back, its there for
had been given; and eight had clear me achieve Having the diagnosis is
views against diagnosis and the bio- not so much of a problem because its
medical model. opened up a lot of doors for me

Finding meaning in It might be that some people found


bio-medical explanations it useful to understand their mental
distress in bio-medical terms because
Asked what she was recovering it allows them to become part of a
from, one participant who had a community a community of people
diagnosis of schizophrenia described who have similar problems. Placing
her psychotic episode in terms of their distress experience within the
symptoms she was experiencing bio-medical framework helped them
delusions and, at the time, she escape the sense of isolation they felt.
thought she was being attacked by
spirits. Being given a diagnosis, she I dont feel so bad now because I am
said, helped her to understand her aware that 1 in 4 people suffer from
experience and how to deal with it. mental health problems I know there
are other people like me so I dont
I knew there was something not feel so bad. I am with similar minded
quite right about me, so when I got the people quite a lot of the time
diagnosis it was, it kind of explained
things for me Once you know For some people, a medical
something it gives you peace of mind. understanding helped them
First you might be nervous and slightly externalise the sense of responsibility
worried about the diagnosis, or the or blame that they felt within
14. An element of blame can be problem or situation it is, but once you themselves. In one case, for example,
found in some culturally specific
ways of interpreting madness and get used to it, it becomes part of life. the participant subscribed to a cultural
mental health problems. For example,
the idea that mental distress is the
belief that the problems you face in
result of karma (the cause-effect this life are the result of bad deeds in a
cycle of life actions) or the work of
the Devil places a significant level of previous one14.
responsibility on the individual and
her morality and faith (Bakshi et al.
1999, Wynaden 2005).
57
What did I do wrong? Was I a I guess to me its medical terminology
rapist in my last life? Seriously, thatsfor the symptoms I had, thats just
how I felt. what it is to me. It also becomes a
label as well. So I dont like answering
She currently made sense of her the question if someone asks me
mental distress as arising from whats your diagnosis. Basically, if
a long standing and debilitating I stop my medication then I start
physical condition. This bio-medical hearing voices I mean whether [the
explanation, despite the absence of a psychiatrist] gives me a diagnosis or
clear psychiatric diagnosis, helped her not its not going to change how Im
come to terms with her experience feeling, whats happening to me.
and move towards recovery. A similar
sentiment was expressed by another In both of the cases above, the
participant who was very severe participants experienced voices and
with herself for experiencing mental visions and found this part of their
distress. distress the most difficult to deal
with. In their view, a diagnosis is a
Well diagnosis is in some ways a little route to a practical solution in the
bit helpful because until I was given form of medication which controls the
a diagnosis I was blaming myself symptoms. Medication was the main
so much, that it was completely me, intervention offered in their cases,
so thats one thing that it did help. although one participant had a brief
They put a label on it and I began to period of psychotherapy which she felt
understand it. Once I had a name, Im didnt seem to be helping me in any
the sort of person who needs to look way
at it, understand it, digest it and then
live with it or put it away That really Rejecting
sort of, for me it was helpful. bio-medical explanations
Putting up with One participant who had accessed
bio-medical explanations mental health services for over 15
years talked about how she felt
Some participants were ambivalent hopeful when she was given her first
about a bio-medical explanation of diagnosis. But, over the years, she was
their mental distress, but accepted given several diagnoses and several
the professionals expertise. For types of medication, none of which
example, one participant felt that she felt helped her get better.
she had no choice but to go along
with the professionals views on her I think the first time I went to the
mental distress, even though it did not psychiatrist when they explained to
resonate with her own views. me that there is a chemical imbalance
in my brain which was causing my
It is the word professionals have visions that was a huge relief All I
given me. Its not how I feel. Its just have to do now is take this medication
to do the necessary things to get which will correct the imbalance and
me out of that kind of chaos. I have I will be fine. It did not quite work out
no choice, I havent got any choice. like that After every episode you go
I really dont know what I was doing to a different psychiatrist and they
then Im happy to go with what the give you a different diagnosis Ive
professional has to say. There must been given six of them, I cannot
be a reason why they say because even remember all of them and with
they are not daft; otherwise they could each, medication also changes.
have just done something.

For another participant, a medical


name for her condition was a
necessary step towards receiving
medication which she feels keeps
her stable. She was not interested in
discussing her diagnosis beyond that
specific use of such an explanation.
58
She felt that this was because the bio- There were fears attached to specific
medical explanation and interventions diagnoses like schizophrenia and
had not taken on board, or helped personality disorder. Being given these
her work out, the social and familial diagnoses had proved detrimental to
causes of her distress. This was one their process of recovery, due to the
of the key reasons cited by those who fear of real and anticipated stigma and
had very negative views about bio- discrimination attached to it.
medical explanations.
if you have a diagnosis of
Well, every time I see my psychiatrist schizophrenia, well, you can say
she assesses me on biological goodbye to having a job and you
symptoms of depression you know? could say goodbye to meeting with
Ok, she might say, are you hearing any hope as well Once you tell thats
voices, are you doing this or whatever what you have, the fear in people
but its all about medication and its is quite strong I know and I have
all about symptoms. Its very tunnel gone through it myself the fear of
visioned, its not about how I function that label is more painful than what is
day to day, its not about how I cope going on in our heads really.
with feelings that come up day to day,
how I function in my life. Its not about Two participants who spoke of
that at all, its simply about symptoms being given a personality disorder
and medication. diagnosis described it as harmful
and dangerous, and a barrier to their
Some other participants rejected journeys to recovery.
bio-medical explanations of mental
distress because they saw distress [Being given this diagnosis] has
as valid responses to lifes trying really, really thrown me much more
situations. Bio-medical models, they than I can say, because it puts the
felt, pathologised these responses responsibility totally on me, everything
instead of helping them to cope with is to do with my personality. So ever
them in a productive way. since then its been a real struggle to
allow myself to be me sometimes
I believe a lot of what is labelled
mental illness is just human For some people, the mere
experience being pathologised. So association with mental health
diagnosis is really meaningless to me. services and being seen as a mentally
ill person meant stigma and isolation
I thought it was shocking at first that within their communities and families.
somebody would say to me you are
actually depressed and you have got I was getting judged as well. I never
episodes of psychosis going on. I did attended any family functions if I
not actually understand what all that went Id be seen as this ill girl, so I
meant I call it life experiences and would try to avoid people because my
that I was not able to understand Dad said that if you expose yourself,
them and I was not able to embrace expose that you are not well, they
them and I was not able to kind of let could be, oh you are a mentally ill girl
go of them It really affected me, I was hard on
myself, I wasnt out there, I had to hide
myself

It is also interesting to see that some


participants defined their experiences
as different from those of mentally
ill people. They saw their distress as
transient moments of crises, while
mentally ill people were seen as
needing long term care within a bio-
medical framework.

59
Placing recovery in Another participant who has been on
anti-psychotic medication for over ten
bio-medical contexts years counts medication as one of
the main things that helps to keep her
Resonance between well. She went as far as to say that she
medical and personal would like to work within the sector
meanings of distress to help other women understand
the benefits of medication and the
The main issue here was whether importance of sticking with them,
the medical explanation of distress good or bad. Here again, a complete
and the diagnosis resonated with faith in the abilities and knowledge of
a persons own meaning of their the professionals was evident.
distress. For some, a medical
explanation was a start to the I would like to help to make [other
meaning making process, and for women] know that medication is
others it was a practical way of getting important, good or bad, just take
help from mental health services. it because the doctor gives you
The key issue here is whether the medication, there must be a reason
therapeutic alliance beyond the why he or she prescribe it and in the
diagnosis and explanations took long run it helps you get better and be
the persons views on the causes yourself again What I mean by good
and contexts of her distress into or bad is that because there are some
consideration. that make you drowsy, sleepy or
whatever. Thats why I said good
Views on medication or bad.
Eight participants were not on any Negative views
psychiatric medication at the time of
the interviews. 11 were on medication Some participants felt strongly about
and others still took medication as actively avoiding medication and
and when necessary. finding other ways to help them keep
well. One participant felt that how
Positive views she functioned on medication over a
period of time was very different from
For some participants, medication had her self-image, and that is what made
a central role in their recovery. They her want to find other ways of coping.
felt that it gave them stability and She described an incident where she
structure to their thoughts, which they could not come to the help of a friend
saw as key aspects of remaining well. in need as the turning point.
Participants whose understandings
of their mental distress were in The medication did horrendous
congruence with medical explanations things. Ive always thought of myself
had more positive views of medication as a person who reads and writes a lot
than those whose personal meanings and engages in political activism. The
differed from them. medication turned me into a zombie.
I couldnt do any of those things, and
Medication has been a great help that was not me. So it took me a few
If it wasnt for medication I dont know years to realise that if this was getting
where I would be right now. I still hear better means, this is not me And if
voices but they are not taking over. that is all medication can do, then I
Everything is stable. dont want to get better.
I am on medication and the She then found other ways of coping,
medication helps me a bit. I done seen including working out ways to help her
things before thats why I ended up partner support her through periods
in hospital [Medication] helps me to where she has voices and visions,
remember things and relax me a bit. creating a safe space at home and
pro-actively avoiding services.

60
Others felt that medication worked This narrator feels that professionals
as a barrier in working out the core and pharmaceutical companies
issues that caused distress. have an obligation to ensure that
medication is a short term solution
If you take a pill to numb your pain and that long term solutions should
and you dont know where it comes focus on accommodating other issues
from, it does not really resolve the like family life, work and whatever else
problem because it will manifest itself that person needs.
into something else
One participant called medication
I did not believe that [medication] an electrical cow prod, herding her
could support me. I was feeling into a place that she does not really
tired. It was actually causing me a lot want to be in, but feels that she has
more anxiety so I did not believe no option but to take it. Help to come
in those forms. But I would take it in off medication, she feels, is not easily
desperation and just feel worse I available within the system.
never really had the belief that they
would work deep down Medication as necessary
for stability
In these cases, the narrators talked
about finding other ways to cope Some participants saw medication
using such methods as alternative as a necessary step to remain stable
healing, co-counselling, and building enough to work on their recovery,
a personal spiritual grounding, while carving out their own paths to
working out ways to deal with the recovery, as evident in the following
socio-cultural and familial origins of narrative:
their distress.
the doctors think that I will be on
medication for the rest of my life but I
Stability through medication dont necessarily see it that way. But
vs. real recovery I dont see medication as something
As shown in the section above, that says I am unwell; it is something
there are some clear positive and that keeps me stable or keeps me at a
negative outlooks on medication. A place where I can function.
further factor that emerged from the
narratives of those participants who Another participant who had a long
were on medication and had some history of contact with mental health
positive views was that many of them services explained:
made a clear distinction between
the sense of stability that medication I am not against medication
allowed and recovery as a much because I have worked out now what
broader, holistic ideal. medication helps me And if it helps
me to stay well enough to do things
Medication as unavoidable that I enjoy doing, so I take mine and
if it helps me to keep in a position
The following narrator has been where I can do things that I actually
on medication for bipolar disorder love then that is a small price for me
and said that it helped her maintain to pay really.
stability. However, she felt trapped
within it. In these and other narratives, real
recovery enablers were a range of
I have a feeling that if I dont take my things, including non-medical healing
medication I am going to go back. So I and therapies (for example, yoga
feel there is no recovery. So now I feel and massages), exercise, social
trapped with my medication. It is not involvement including volunteering,
really recovery because you know you employment, and being able to
will fall ill if you dont take medication. find resilience within themselves.
Medication gave some stability to
explore these.

61
Well, there was a time when I stopped Though I cant understand what kind
taking medication and I had a mini of woman would think its a good thing.
psychotic episode, so this sticks From my point of view it is not normal
out in my mind that I need a bit of Never had a choice of psychiatrist so I
medication to survive I look at the guess I havent really asked to change
positive benefits and do other things from him but I did meet the female
to manage the negative like exercise, psychiatrist once and I didnt find her
activities, etc. very sympathetic either.

Recovering the body This explanation that a female


psychiatrist should understand what it
Medication had a significant
means for women in their 30s and 40s
effect on some peoples body
to have a normal menstrual cycle is
image and identity as women. Two
reflected in the following narrative:
narrators talked about its effect on
their menstrual cycle, which they
my psychiatrist is male and when
experienced as making them not
my periods stopped I dont think
normal as women. They felt that
he understood what I was going
sufficient attention was not being
through It just doesnt feel right for
paid to the specific effects that some
a woman not to have a period. I think
medications have on women and how
that if I had a female psychiatrist may
it affects their sense of identity and
be she would understand me better
self-image which are crucial in moving
but I dont know whether she would
towards recovery.
have treated me different, I dont
know.
when I take my medication my
periods stop. This is something that
Both these women feel that unless
really bothers me. My psychiatrist
their bodies became normal, they will
is a man and sometimes I wonder
not be fully recovered.
if he really understands how much
it bothers me. He did tell me once
Side effects of medication had
I dont understand, most women
a big part to play in its negative
come and tell me that this is a good
effect on recovery. Apart from its
thing that their periods have stopped.
physical health implications, side
effects impacted the development
of a positive self and body image,
crucial in most peoples definitions of
recovery. Tremors and shakes, weight
gain, and hair loss all made women
feel less attractive and trapped in a
negative body image. For the following
participant, medication has a key
role in keeping her stable and her
symptoms under control. However,
she feels it is a barrier to recovery
because it has a direct impact on her
self-image.

I think [medication] affects me more


than I realise because my clothes
dont fit and I cant really afford to buy
new clothes because I dont have a
job. So it affects the way I feel I think
it makes me less attractive and
maybe that affects my trying to find a
partner. So I feel that in some ways my
medication is a barrier to recovery.

62
Summary

Some people understood their distress within


a bio-medical framework, taking on board
diagnostic categories and medical symptoms and
interventions aimed at controlling these symptoms.
This does not exclude other ways of making
meaning of the experience of distress.

Views and definitions of recovery in this


context included symptom control, accepting
the knowledge and views of mental health
professionals, and taking on, at least partially, an
identity of a patient.

A clear distinction emerged between the stability


brought about medication and the idea of real
recovery; medication and its side effects were seen
by many as barriers to real recovery.

Elements of recovery in bio-medical


contexts include:
Resonance between the medical and personal
meanings of distress.
Being able to develop a therapeutic alliance
with mental health professionals.
Accepting medications role in maintaining
stability.
Ability to have a positive self-image despite side
effects of medication and stigma about mental
health conditions.
Having other support systems and enablers of
recovery like complementary therapies, exercise,
work and social participation, and so forth.

63
Recovery: In our own words
That you survived the crisis and you are making your way back to normality.
That is my recovery.

I think it is a back and forth, back and forth thing. Nobody ever recovers from
anything. Something that you have experienced stays with you.

I left home with just the clothes I was wearing and no money and seven months
pregnant. And from there to where I am now working, I have a car, Im earning
money, I dont take benefits... People say, oh you have done well, but whats the
criteria? Whos grading? Whos the judge to say I have done well?

Being well, being able to do the simple things of everyday life...

...recognising the distress that you are going through, or have gone through and
finding solutions to combat that.

Recovery from what? Is it an end to a means, is it something that you guys are
wanting me to do rather than me telling you my story about what my journey is?

wellness is all about shutting the noise out, getting a quiet space to actually reflect

That word recovery means that I identify what is making me to go back to


hospital and I put my mind in the sense that I dont go back...

Im definitely 100% 1 million% more in control of my life and of what I do and


where I am at and who I am than I have ever been before. May be that is recovery.
But within that, I still have to have the freedom to know that I can dip and I can
lose it. I suppose thats what pure recovery is meant to be, isnt it?

it is a continuous process for me. I think like anything in life we are


constantly re-appraising and we are constantly doing certain things in a certain
way to be in a certain place. So to me that is recovery; it is continuous.

Recovery... is all about self-image and how successful you feel you are in living
up to your own self-image.

Recovery means getting into my own stride, feeling well... Also just accepting
myself and not having too much pressure on myself.

Recovery means living the life I want and having the support in place for me to
do that, having the information available so that everyone knows what choices
they can make.

Recovery is the state you are at, at any particular time. Whether or not you are in
hospital, you are in a state of recovery, as long as you are alive and you survive a
crisis, you are in a state of recovery.

Recovery means great to me, it means there is hope for me in life... It is the hope.

64
Views about definitions
and practice of Recovery
and Resilience in mental
health services
So far, we have seen that peoples While many service users will
understanding of recovery is very recognise in this definition important
much dependent on the way they elements in their own recovery,
make sense of their mental/emotional the discussion so far in this report
distress and the meanings they give shows that there are two limitations
to their experiences. In the course to this definition: one, the process of
of the interviews, different terms change is characterised primarily as
were used both by participants and an internal personal process, and two,
by researchers to talk about the the meaning given to distress is one
journey from points of distress that of illness. As we have discussed in
derailed lives and destroyed selves the introduction, service user/survivor
to points where lives were reclaimed positions and readings of recovery
and selves reconstituted. Resilience from a race equality perspective have
and resources that aided resilience argued that definitions of recovery
were invoked several times in these need to go beyond both these
narratives. essentially limiting perspectives, and
look at external factors that impact on
Many recent publications, including peoples personal selves and identities.
the new mental health strategy,
No Health without Mental Health An important development in mental
(Department of Health 2011), a health services in the last three
position paper on recovery from decades is the formulation and use of
consultant psychiatrists (South recovery models and approaches.
London and Maudsley NHS There are several universal, almost
Foundation Trust and South West self-evident, elements of what helps
London and St Georges Mental people (including the participants
Health NHS Trust 2010), and the of this research) get better and
background papers to the National remain well in all these models and
Mental Health Development Units approaches. However, reservations
(NMHDU) supporting recovery have been expressed by professionals,
project15 use the following definition service users and carers about
of recovery: the efficacy of using models and
15. A collaborative national
initiative between NMHDU, the outcome measures to work with what
Centre for Mental Health and A deeply personal, unique process is, essentially, a subjectively defined
the NHS Confederation. See
http://www.nmhdu.org.uk/news/ of changing ones attitudes, values, concept (Davidson et. al. 2006, Trivedi
mental-health-services-on-road-
to-recovery/?keywords=recovery
feelings, goals, skills and/or roles. It 2010). The evidence on how these
[Accessed Feb 2011]. is a way of living a satisfying, hopeful various models and approaches are
16. For evaluations of recovery and contributing life, even with helping people from minority ethnic
models with BME communities,
see the report of a project piloting
limitations caused by the illness. communities achieve their visions of
the Recovery Star with BME Recovery involves the development recovery is, at best, limited, although
service users (Imonioro 2010),
and the evaluation of Wellness of new meaning and purpose in ones existing evaluations have highlighted
Recovery Action Plan with life (Anthony 1993). the need for adapting these
six South Asian women in
Scotland (Gordon and Cassidy approaches to meet cultural/linguistic
2009) and Northamptonshire
(Northamptonshire BME
expressions and social experiences
Community Wellbeing Engagement of distress and recovery in these
Project 2007).
communities16.
65
In this chapter, we focus on how the I was very big on the term until I have
participants understood recovery as seen it just hijacked by mental health
it is used within services and recovery services into something it shouldnt
approaches, and explore whether they be really. Because it has been hijacked
felt these definitions and descriptions by psychiatry as another form of
resonated with their own definitions. social control its meaningless to me. I
We explore whether they found the understand that if you look at recovery
terms meaningful in describing their not as a model or a movement but
own experiences, and the alternative because its just been bastardised I
ways in which people described think by the system that I dont like to
their journeys. Given the centrality of use it now.
recovery approaches and models
of recovery in current mental health One participant talked about not
services and practice, we also wanted being convinced any more about
to find out whether the participants the agreed wisdom that recovery
had come across these formal ways of approaches have their origins in the
working with recovery and, if they did, user/survivor movement. She feels
whether they had found them useful. that the term has its origins in clinical
medicine and that its re-articulation in
the user/survivor movement had lost
Views about its punch now that it has gone back
into the hands of professionals. She
recovery and felt that current recovery approaches
had an underlying assumption that
recovery approaches its to do with clinical recovery and
did not resonate with the way in which
All participants had clear pre- she conceptualised her own recovery.
defined ideas about recovery and
what it meant within mental health Participants, especially those
services. 12 of the 27 participants not involved in the user/survivor
very clearly did not like to use the movement and not subscribing to
term recovery as they felt that it a user/survivor identity, felt that the
had specific connotations within main issue for them was that the
mental health services which did not idea of recovery posited an illness
fit in with their understandings. Nine as a pre-given. One participant, for
people did not have a problem with example, defines her distress in terms
using it, and felt that the term and its of an emotional response to life
connotations resonated well with their events and not as mental distress
own definitions and meanings. Others or illness:
were more ambivalent about what
the term generally meant and how it Its not a term I like or has any real
described their own journeys. resonance with me. For me, its much
more about how services manage
Critiques of the term recovery their clients and how a client would
experience getting well. It has
Some people wanted to distance
implications for me of being ill rather
themselves from the usage of the
than experiencing a normal response
term recovery because they saw it
to a life event.
as professional-led, pressurising, and
ultimately meaningless. This feeling
In the previous chapter we examined
was stronger among participants who
the emphasis that some people put
were involved in user/survivor groups
on the difference between recovery as
and campaigns and had a degree
symptom control through medication
of familiarity with questioning how
and real recovery. Their definition of
mental health services functioned.
recovery was based on a total lack of
symptoms, the need for medication
and its side effects a cure even
and as long as medication continued
to be part of their life, they did not see
themselves as fully recovered.
66
I mean at the moment I guess my Recovery approaches
psychiatrist, maybe some mental and models
health professionals, would say that
Ive recovered but then in some ways The interviewees were asked whether
I feel that Im not. For example, my they had come across any recovery
weight its too much. And I dont models while accessing services. 15
have a job although from their point of participants had not heard of recovery
view thats not because Im ill I just models or their usage in mental
feel, from my point of view I think thats health services or other services they
not being recovered. Also my periods accessed. Only three participants had
have stopped, I dont think thats what done work with a recovery model. Of
you call recovery. these, one person was not sure what
the model was called, but said that she
Another participant, who had grown found it useful.
up witnessing violence and then
experienced years of domestic Made me realise Im not doing too bad.
violence as an adult, said that Made me realise where I was. Helped
recovery made sense to her in terms others realise what to do for me.
of her own growth after being broken
by her experiences, regaining her The other two participants had
sense of self and worth. used the Recovery Star model17.
One person found it useful and was
I went through five years of physical enthusiastic about its use in mental
violence, mind games... In that health services:
sense, recovery means a lot to me,
recovering from abuse like that and It is very good. It really does help you
then learning to live again, learning to see where you need to work on and
get your self-confidence back, learning how you are developing and it gives a
to really trust someone elses love sense of accomplishment when you
again. But most importantly of all, see that, oh, I have actually gone past
learning to deal with the conflict inside this stage. It is really good.
me about who I was the feminist,
student activist, academic achiever The other person did not find it useful
type of person or the weeping, because some of the concepts and
depressed, doormat who got beaten the overall framework were too
on a daily basis. Recovery, in that complicated:
sense, is all about self-image and how
successful you feel you are in living up it was too much for what it was.
to your own self-image. There is too much to think about. To
try and remember to hold yourself
However, she said that the way the together, too much.
concept is currently used within
mental health services did not Nine others were familiar with
resonate with her because it started recovery models, having attended
from a point where the distress (in her presentations about models and
case, arising from continued violence) through their work in the mental
was pathologised and medicalised. health field as researchers, trainers
The focus was on controlling the and user involvement workers. The
symptoms (for example, self-harm) models mentioned included the
and not enough on equipping people Recovery Star, Wellness Recovery
to deal with the causes and effects of Action Plan (WRAP), and THRIVE18.
17. The Recovery Star is a model distress and making sure they had the Some of them agreed with the feeling
and approach to recovery developed
by the Mental Health Providers necessary resources to do so. above that a recovery model might
Forum. See http://www.mhpf.org.uk/ be a useful roadmap and give some
recoveryStar.asp
definitions and goals to peoples
18. WRAP and THRIVE are models recovery journeys. But largely, people
developed by people who had
experienced mental distress and were not convinced that recovery
accessed mental health services. See
http://www.mentalhealthrecovery. models will be useful in supporting
com/aboutus.php for information
about WRAP and http://www.
a person through her journey in a
hcc.uce.ac.uk/ccmh/THRIVE%20 way that suits her own definitions of
book%20promo.pdf for THRIVE.
wellness and needs.
67
Part of the reservation was that recovery industry seem to have that
recovery models did not start security but theres loads of people
from a point where a person was that dont know where they are even
supported in addressing some of the going to be from one day to the next
socio-cultural and personal/familial and they are doing recovery in their
contexts of distress, as discussed in own way probably.
the previous chapters. It started after
the distress was medicalised as an Some others felt that standardising
illness with psychiatric diagnoses recovery through models, setting up
and treatment. One participant, whose outcome measures and quantifying
journey to wellness was based on peoples journeys worked against the
finding closure to her experiences fundamental principle of recovery or
of abuse, through a long process of the process of a persons progress in
putting information together and their life.
allowing herself to forgive her abusers,
felt that recovery models did not I find them patronising, very rigid and
help confront the core issues that actually what helped me recover was
cause distress. finding my own way. Having someone
there as a support but theyre really
[A good recovery model] should help there in the background to sort of
someone to understand and come sit next to me while I make my own
to terms with certain parts of their discoveries rather than sort of to be in
life Without understanding the core front leading me.
issues, you are nowhere. It is not about
following the steps I think products Someone else is telling me how I
like that do not really work because should recover but only I know how I
they do not enable the person to take can recover When people tell you do
control of their situation. The only way this, do that, do some of the modules
I was able to heal was to take control on [a model], some of it is good, but
of the situation some of it, they are talking about
overall people, they are not talking
This is a sentiment that was echoed about me.
in other responses too. But for some
people, there was a more conceptual One participant felt that, regardless
incongruence between the idea of of her own personal views on recovery,
recovery and the way mental health the growing focus on recovery
services worked. As long as coercion within mental health services was a
is a part of mental health care, positive thing.
whether through the Mental Health
Act or through an individuals lack the positive thing about having
of control over medication and care something called recovery is that
plans, and as long as other social care there is now the chance that people
support systems are not in place, with mental health problems are
recovery as something that is driven not written off. There is something
by a persons specific needs and that says you can recover from this
understanding of their distress would whereas before you were labelled
not work well within services. for life and that was who you were for
life. Recovery kind of says that you can
I dont believe that you can do make changes.
recovery on the one hand and then
have mental health services so Overall, however, the sense was that
coercive on the other. Now with all recovery models and standardised
the pressure on people to get back outcome measures were against the
to work and having their benefits concept of recovery itself and that the
withdrawn if you look at the global way in which they are used in services
picture it doesnt make sense If today continues to put professionals
people have got the basics in place in charge, despite the rhetoric of
like finances and social situation and person-centredness.
havent got too much trauma, then I
think people can move up a recovery
[ladder]. All the big names in the
68
Views about the It reflects for me the experience I had
from being a very small child trying
term resilience to understand what was happening to
me, feeling constantly knocked down,
Unlike recovery, the participants in going through periods of finding
this study had no clear pre-defined my confidence and then seeing it
ideas of resilience as a concept used knocked away again. Um, going
within mental health and social care down lots of wrong roads and making
services, although they did have their mistakes but always coming back
own personal ideas about it. The again having this very strong inner
references that people drew on were sense of purpose I feel I have been
from everyday life and, by and large, resilient and for me, its a really useful
cultural and/or political. People spoke term.
of watching the resilience of parents
as they adjusted to lives as migrants Others looked on it as an active
in a new country and brought up process of building up resistance to
children within a context of racism and the adverse effects of lifes traumas
discrimination, of female relatives who a little like strengthening the body
survived domestic violence or other through exercise and good diet in
abusive relationships, and of their order to avoid being ill or having a
own children growing up and dealing vaccine against infections. Resilience,
with their mothers distress. They for them, was learning how to do
also spoke of collective resilience practical things that would keep
in terms of their communities, them well.
surviving colonisation, slavery and the
continuing legacy of oppression and Resilience means trying to build up,
the resilience of black women. a bit like having antibodies I suppose.
And you have to sort of do exercises,
Resilience as an mental health exercises like not
enabling concept isolating yourself not allowing
yourself to become overtired, getting
The term resilience had a positive the right amount of sleep You build
connotation for many people as up resilience by ensuring these things,
they saw themselves as having keying in factors that mean that you
demonstrated resilience. These have time for yourself. I know it sounds
positive connotations were based on lame, but how many people actually
the acknowledgement of an do these things on a regular basis?
inner strength and sense of purpose
that they have drawn from in their long For one participant, who believes that
journeys towards where they she has dealt with the trauma from
are today. her past, resilience now is a matter
of having enough self-awareness to
I dont know if you are aware of the identify what lifes pressure points are
song I get knocked down but I get and actively setting out to minimise
up again. Well, every time I do get them. Being watchful, as this
knocked down I sing that to myself participant puts it:
and I get up again. Im not sure why
I keep getting up, its just feeling the now I have to be aware, I have
word strength being tattooed on my to be watchful, what I eat, who I let
soul really. into my life, what things I relate to
and what people, so I dont let in
those things that make my pattern
of anxiety become strong. So maybe
too stressful jobs or having many
sleepless nights Living with people
who are completely insecure, they
dont make an anxious person healthy.
Thats me being resilient, thats me
being watchful

69
Resilience as a Bouncing back, staying power, true
disabling concept grit, doing battle, perseverance
these were other words and
In a previous chapter, we saw that expressions used to define what
there was an association between resilience meant to people. In all
black women and strength a of this, people saw resilience as
strong black woman stereotype something positive they had within
that disadvantaged women and them, and that being able to draw on
their emotional health. Some of the it helped them get through adversity.
participants felt that the idea of But there was an undercurrent of
resilience and its association with having no choice, having to keep
black women and their communities going endurance as well.
was partly responsible for this
stereotype and that it worked against Well, against all odds Im here. It is
womens emotional and mental what I have to do, it is the work I
development. Some participants felt have to put in to keep going. It is a full
that not being able to demonstrate time job.
resilience in their life by being
distressed, needing help and support One participant said that she had
increased their sense of self-doubt to demonstrate resilience in her life
and failure. on a daily basis; she had no choice.
However, she felt strongly that using
I understand it as like somebody who the word to talk about how women
keeps going and keeps going and it is coped would increase the expectation
a bit of a strength, a fighting spirit and of resilience which, added to the
a bit of stoicism and I dont really I expectations on women to perform
think that is actually what helped me their roles against all odds, would be
feel worse, that interpretation made further unhelpful to women.
me actually believe that I had to have
the strength and I was weak if I did not I dont think we should be using that
have the strength and that message because it seems like you are telling
was, it was too damaging, you know, me, be like concrete and bricks, keep
because I wanted to feel weak your trust and head high and let
everything hit you and dont complain,
The expectation of resilience is the dont say its pain, you are resilient,
issue here, that it allowed no space arent you?
to feel vulnerable and not feel guilty
about being vulnerable. What this participant highlights is
the dangers in seeing resilience as a
people say to you all the time, oh personality trait that all humans are
you are strong and you think I dont expected to have. All the excerpts
want to be strong! I want to let you above touch on the idea that the
know that Im actually vulnerable desire and ability to overcome
and sensitive [The expectation of adversities and bounce back is
resilience] does not allow for space for something that everyone has inside
somebody for me to feel crap on a them. However, the capacity to draw
day when you cannot get up, and be upon it or turn it into a resilient way of
un-resilient. life requires support systems outside
of oneself. As we have seen in the
first part of this report, people draw
on collectives, communities, families
and care services for support and
emotional sustenance that helps
them be resilient.

70
Summary

Views about how recovery has been defined and


practised within mental health services varied, with
many people finding that the definitions did not
resonate with their own understandings.

Some people had an overall awareness of recovery


models, but only three had actually worked with
them. The overall view was that, while some models
were useful in providing a road map for people to
work out their recovery paths, they did not help in
confronting the core issues that cause distress.

Critiques of recovery approaches included:


That they were professional-led and pressurising.
That they took a limited view of mental distress
as illness.
That they did not help people in addressing the
causes and contexts of distress.
That they would not work within mental
health services as long as coercion remained
within services and treatment was mainly
medically oriented.

The concept of resilience was seen both as


enabling and disabling. Positive aspects included
the acknowledgement of inner strength and a
sense of purpose that many people recognised in
their own journeys. Negative aspects included the
expectance of endurance and a perceived lack of
space, and respect, for vulnerability.

71
Conclusions

72
Supporting black
womens mental and
emotional health
Placing the report in The supporting recovery project, a
collaboration between the National
current policy and Mental Health Development Unit, the
political context NHS Confederation and the Centre
for Mental Health, sets out to support
organisational development in
This report is being written at a time
recovery. In the last three years, there
when significant policy and political
has been a series of publications,
changes are occurring across society.
including professional position papers,
The publication of three key white
guidelines for professionals, recovery
papers Liberating the NHS (DH
models and top tips on recovery and
2011b), A vision for adult social care
how to develop a recovery orientation
(DH 2011c) and Healthy lives, healthy
within services. Clearly, the policy and
people (DH 2011d) and the mental
political scenes seem to be ready
health strategy, No health without
to shift mental health practice from
mental health (DH 2011a) together
treatment and cure to recovery.
spell out a very different context
for mental health service delivery.
The new mental health strategy also
A widely acknowledged positive
focuses quite clearly on personalised
aspect of the current policies is that
services and improving peoples
mental health is to be treated as an
access to psychological therapies.
integral part of the overall health and
Taken together, this could mean
wellbeing of communities.
the development of truly effective
services.
The Call to Action document,
accompanying the strategy and
However, there are some persistent
signed by a range of mental health
issues that need to be discussed
charities, professional bodies and
alongside these policy aspirations.
ministers (DH 2011e), includes a
The latest Mental Health Bulletin (NHS
commitment to ensure that more
Information Centre 2011) shows, as
people with mental health problems
we have seen, that there has been
will recover:
an increase in the number of people
using inpatient care for the first time
More people who develop mental
since 2003-04. But what is interesting
health problems will have a good
about this increase is that the number
quality of life greater ability to
of voluntary patients fell by 6.6%
manage their own lives, stronger
while there was a 30% increase in
social relationships, a greater sense
the number of people detained under
of purpose, the skills they need for
the Mental Health Act (MHA). This
living and working, improved chances
shows the extent of compulsion
in education, better employment
within mental health services, which
rates and a suitable and stable place
becomes even more substantial
to live.
when we look at women and black
communities. The number of women
detained under the MHA and coming
into hospital via the criminal justice
system rose by 85% since 2008-09;
the proportion of detention increased
across all minority ethnic groups while
73
there was a sharp fall in the number ofThe broader societal context
is pertinent Is it possible to
voluntary patients. The Bulletin states:
help people recover within
These figures suggest that NHS mental health services when the
mental hospitals are increasingly used inequalities and instabilities in
to care for and contain people who their broader social lives are not
pose a risk to themselves or others. addressed?

The discussion of compulsion is Against this background, we now


pertinent Is it possible to think present the key findings from
about and develop a recovery this study and its implications for
approach that is person-centred supporting black women on their
when there seems to be an journeys to recovery.
increasing focus on containment
and risk within mental health Meaning making in recovery
services?
The narratives of the women
Meanwhile, society as a whole is interviewed for this project show that
undergoing substantial changes there is a clear link between how
affecting both the public and private they understand and make sense
spheres. These changes are even of their mental/emotional distress
more keenly felt by vulnerable groups. and their ideas about recovery. What
For example, there is an indication helps each person in finding ways of
that cuts to public and voluntary coping with distress involves a series
sector services and spending of processes:
are already affecting groups and
organisations working with minority a. Being able to express personal
ethnic communities (which include views on the causes of distress and
organisations working to support the contexts from which they arise,
people with mental and emotional including racism, sexism, violence,
needs): by early 2010, 45% of all BME abuse and other traumas.
voluntary sector groups had faced
funding cuts from local authorities, b. Finding acknowledgement and
in addition to 61% who faced cuts acceptance of their views in formal
in government funding, other grant service delivery spaces.
making trusts and the Big Lottery. At
the same time, there is an increasing c. Getting support in addressing these
demand for services 77% of BME causes and being able to overcome
third sector organisations had or at least make peace with
experienced a sharp rise in requests distress generating experiences.
for services as communities and
individuals feel increasingly vulnerable d. Being able to find a therapeutic
(Council for Ethnic Minority Voluntary alliance with professionals in
Organisations CEMVO 2010). regaining a positive sense of self,
Widespread welfare reforms are identity and belonging.
having serious effects on people with
mental health needs across the board, Recovery approaches
and especially those who depend on
benefits and allowances due to ill- The effectiveness of recovery
health, disability or other vulnerability approaches that start from the
(Pollard 2011). Fears about the point of an identifiable distress
unequal impact of public sector job episode (often termed as illness
losses on women and minority ethnic and given a psychiatric diagnosis) is
communities have been expressed not able to meet the needs of black
and evidenced19. women, as shown in this study. Any
approach to recovery should take
on board the pre-story of distress,
19. See, for example, responses
to the Comprehensive Spending
acknowledging that a person needs
Review from the Fawcett Society to recover not only from mental
(http://www.fawcettsociety.org.
uk/index.asp?PageID=1198) and distress but from the core causes of
Voice4Change England (2010). that distress.
74
While recovery is a personal journey, Role of medication
the narratives of the women in this
study show that, for many people, Another major finding from this study
it is collective and not individual in is that there are widely varying views
process and socio-political in nature. on medication and its role in recovery.
A sense of worth in self is linked to a Some of the narrators had clear
sense of worth in the community and negative views about medication and
identity. The focus on the individual its side effects, especially its effect on
in recovery approaches will need their identities as women, and saw it
to be broadened out to include as a barrier to recovery. Others found
ways of overcoming socio-political some use in medication as helping
oppression and the limits these them develop some degree of stability.
pose on peoples quality of life. To However, there was a clear distinction
put simply, recovery approaches being made between medication
focusing on getting black women as stability and real recovery. More
back into employment and education work needs to be done to explore
are not going to be effective unless the actual effect of the continued
they are also equipped to deal with use of medication and its role within
systemic and structural oppressions recovery approaches.
that they face in society.
Talking and recovery
Developing a
transcultural approach Given the centrality of meaning
making in recovery, it is not surprising
The experiences of the women that the need to talk about their
interviewed for this study has shown experiences came up as a key aspect
that mental health service delivery of black womens recovery and healing
remains Eurocentric in nature, and process. There are two aspects to
focuses on distress as illness, this. The first was an expectation
treatment as primarily medication, and of a humane approach to healing,
care in terms of compulsion and risk where people had a chance to talk
management. Given the scarcity of and be listened to by professionals
recovery narratives from transcultural within mental health services and
positions in recovery literature, it is by significant others within their
reasonable to argue that the recovery communities and families. The
approaches being developed today second was a clearly highlighted
have had little engagement with need to have more access to talking
cultural perspectives of minority therapies, counselling and other
ethnic communities. The narratives forms of therapeutic alliances where
examined in this study show that there was a space for exploring the
understandings of distress as causes of distress and the contexts
legitimate responses to life events, of recovery.
spiritual crises, breakdown due
to trauma and stress and other It is not clear, from existing literature
cultural and personal explanations, and from this study, why talking
need to be developed as part of a therapies are not offered more often
transcultural approach to recovery. as a first option for black women given
the importance of meaning making
and understanding distress. There is
a clear need for more research into
the need, efficacy and availability of
talking therapies for black women.

75
Focusing on what helps Telling our stories
We have resisted an elements of This research arose from a conviction
recovery approach in presenting the that black womens narratives about
findings of this research, although mental/emotional distress, healing
many of the elements listed in many and recovery were underrepresented
recovery approaches have been in the knowledge base on mental
discussed within the contexts of the health and recovery. The narratives
narratives for example, hope, self- analysed in this report make an
determination, being listened to, and important contribution to this
developing a positive sense of self. knowledge base. It is significant that
At this point, however, it would be many women found the very act of
pertinent to list the various contexts narrating their stories enabling and
and processes that the narrators of considered it part of their recovery
this study have found enabling in process. Indeed, for some, this was
their journeys. the first time they were asked to tell
their stories and be given a forum and
Space for exploring and making framework within which to develop
sense of their distress. and tell their story. This in itself, we
Overcoming or coming to terms believe, is a significant achievement of
with experiences of oppression, this project.
stressful interactions and other
causes of distress. There needs to be greater
Gaining a sense of worth in self and investment in creating more such
community and a positive sense opportunities for black women as
of identity and belonging as black telling our stories have important
women. personal and political functions.
Religion, faith and/or a personal
spiritual foundation.
Access to healing systems
and therapies, including yoga,
meditation, massages and other
complementary therapies, and
peaceful environments.
Creative activities like writing, art,
photography, and gardening.
Enabling social interactions,
including paid and voluntary work,
relationships, friendships and
community activities.
A sense of social justice and
community participation through
campaigns for race, gender and
social equality, against violence,
user/survivor movements,
community development initiatives.

76
Terms and concepts used to describe
journeys through mental distress

77
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79
Appendix 1 Recovery and Resilience: African, African-Caribbean and
Participant South Asian Womens Narratives about Recovering from
Mental Distress
Information
Sheet The Mental Health Foundation is conducting a study of women from African,
African-Caribbean and South Asian backgrounds, exploring their experiences
of mental health, recovery and wellbeing. We would like to invite you to
participate in this study.

The purpose of the study is to collect your views on:


How you understand mental health and mental distress.
What recovery means to you.
What has been helpful to you in your recovery.
How you maintain your wellbeing.

Taking part will involve talking to one of our researchers about your
experiences. All researchers involved in this study are also people with direct
experiences of mental distress and recovery.

If you would like to take part in this study, please read the rest of this
document which tells you more about the study and what it involves. Then
please contact Jayasree Kalathil by phone or email.

Jayasree Kalathil
Research Consultant
Jayasree@survivor-research.com

80
Participant Information Sheet
This sheet gives you more information about the study and what it involves.
Please read this carefully before you decide whether or not to take part. If you
have any questions, please ask us.

What are the aims of the study?


The purpose of the study is to collect your views on:
Your story about your experience of mental distress and getting better.
How you understand mental distress/mental health problems.
Recovery and getting better.
What has helped you in getting better.
How you maintain your wellbeing.

Who is organising and funding this study?


The study is hosted by the Mental Health Foundation, a national charity
that provides information, carries out research, campaigns and works to
improve mental health services. It is funded by the National Mental Health
Development Unit.
The project team consists of chief investigator Dr Dan Robotham, Senior
Researcher at the Mental Health Foundation, Lead Researcher Jayasree Kalathil
and four researchers (all researchers have direct experience of mental distress).

Who is eligible to participate?


If you are a woman from African, African-Caribbean or South Asian background
living in London, and have lived experience of mental distress but consider
yourself to be recovered, you are eligible. We are looking to recruit 24
participants for this study.

What does participating in this study involve?


A member of the research team will conduct a face-to-face interview with you
which will last up to 1 hours. The interview will be conducted at a time and
place convenient to you. You will have the option of having someone with you
(for example, a friend) if you feel that is appropriate.

You have the right to withdraw from the study at any time without giving
any reasons. Even after the interview, if you feel you are no longer comfortable
with the study, you can withdraw and all the information collected from you will
be destroyed.

What will happen to the information I give you?


The interview will be recorded using a digital recorder. This is to make sure that
your views are represented correctly in the study. The information you give will
be used along with the information from other participants to write and publish
a report and guidance on working with African, African-Caribbean and South
Asian women on recovery.

How will you keep the information I give you confidential?


As soon as the interview recording is typed up, it will be erased. If you do not
want to use your own name in recording your story, you can choose a fictional
name to protect your identity. Any information that might identify you or
your social networks will be changed or made anonymous. The information
you give will be used only for this study and it will be stored at the Mental
Health Foundation on computers protected by user names and passwords
in accordance with the Data Protection Act 1998. Only the research team will
have access to this information. 81
The only exception where a breach of confidentiality might be required is
if there were issues around child protection, risk to yourself or others, or
malpractice. We would discuss this with you and explain our professional duty
of care before breaking confidentiality.

What are the benefits of taking part?


The benefits for taking part are that you will be sharing your experiences of
getting well and staying well and helping others learn from your experiences.

Will I be paid?
We believe that those who contribute to studies like this should be rewarded for
sharing their experiences. In accordance to government guidance on this, we
will pay a voucher for 20 for taking part in the interview. In addition, we will pay
travel and any other expenses you might have in coming to attend the interview.

What are the risks of taking part?


There are no major risks in taking part in this study. However, the interviews
will explore your experiences of mental distress and accessing mental health
services. For some people, this might bring up some unpleasant memories. If
this happens, we have set up procedures to help you access the support you
might need. Please also feel free to discuss the study with any support systems
that you might already have before you decide to participate.

What should I do if I decide to participate?


If you decide to participate, please contact Jayasree Kalathil. Jayasree will
ensure that you have understood the purposes of the study and what is
expected of you. Then you will be asked to sign a consent form, a copy of which
will be given to you to keep along with this information sheet.

What if I have a complaint about the study?


Despite all best intentions, sometimes things can go wrong. If this happens,
please inform us so that every effort can be made to put things right and to
prevent such errors in the future.

If there is a complaint about this study, you can discuss it with Dr Eva Cyhlarova,
Head of Research at the Mental Health Foundation (0207 803 1100). She will
then investigate the complaint and will try to resolve the problem. If problems
are not resolved within a reasonable time, the Mental Health Foundation will
automatically pass the complaint to the CEO, Dr Andrew McCulloch. If the
response from the relevant Foundation staff and CEO are not satisfactory,
complainants should write to the Trustees. Staff will advise and help people
through this process.

Who has reviewed this study?


The study has been reviewed and approved by the Social Care Research Ethics
Committee.

Contact information
If you have any questions about the study, please contact Jayasree Kalathil at
jayasree@survivor-research.com.

Alternatively, you can contact Dr Dan Robotham at drobotham@mhf.org.uk.

Thank you for reading this.


82
Appendix 2 Recovery and Resilience: African, African-
Interview Caribbean and South Asian Womens Narratives
Schedule about Recovering from Mental Distress
Interview Questions
Note to interviewer: Before you begin, make sure you have followed all the
steps in the guide for interviewers: that you have explained the study and the
interview process, the consent form is signed, the tape recorder is switched on.
Remind the interviewee that they do not have to answer questions that they
dont want to answer and that they can stop the interview at any time.

Please also remind the interviewee that there are no right or wrong answers
and to ask for clarifications if they dont understand what a specific question is
getting at.

If after about an hour into the interview, you feel that it might take longer than
the allotted one and a half hour, check with the interviewee whether they are
okay with going ahead. If they are not, make sure that you still keep at least 10
minutes for the post interview questions and summing up.

Remember to validate the interviewees experiences by acknowledging their


experiences. It sometimes helps to share some of your own thoughts if you feel
comfortable, but please make sure that these comments are kept brief and
does not disrupt the flow of the interview].

Introduction
[Note: The aim here is to get an idea of the person behind the story. Focus on
the now their current life. Ask prompting questions to suit the person.]

1. Could you tell me a little about yourself how would you describe
yourself based on your current life?
Prompts:
What do you do (as in work, keeping themselves occupied etc.)?
What are your interests and hobbies?
Family, marriage/relationships, children, their social networks

History and experience of mental distress and recovery


[Note: Again, be clear that you are asking them about their recent experiences
and what has helped them to get here. Focus on discussing the positive
aspects of their journey. Then use the prompts to draw more out]

2. You are participating in this study because you have had some
experience of mental distress or mental health problems and are on a
journey of recovery or getting well and moving on. Could you tell me what
has helped you to get where you are today?
Prompts:
What in your journey has contributed to you feeling better? What helped you
heal? [Note: Keep in mind that feeling better, healing etc. are subjective.
Encourage them to talk freely about the various aspects of what they think
have been important in their journey. These may include a person, an
incident, a series of things, medication, a process Use your discretion to
ask questions according to the context to go into details. Encourage them to
explain things]
Has this changed over time?
How would describe this journey?
What were some of the key moments in this journey? 83
3. What would you say you were recovering from?
[Note: Different people may give different answers here. For example, someone
might say they were recovering from trauma of abuse or violence. Others
might say from negative experiences of life generally, or a spiritual break-
down, or racist/sexist experiences in society or community, or schizophrenia,
depression. Use the prompts and be flexible in following up their stories.]

Prompts:
What do you think your mental health problem or mental distress has been
due to? [Note: Validate the interviewees experience by using the term they
use for mental health problem or mental distress.]
How did [the persons experience] affect your wellbeing?
Did you use mental health services? If yes, ask for details
Have you been given a diagnosis by a mental health professional? If yes, ask
for details
What is your opinion of this diagnosis? [Note: The purpose here is to find
out how they see their diagnosis do they agree or disagree with it? Do they
understand it? Does it make sense to them?]

Impact of race, gender and other socio-cultural aspects


on experience
4. This study is specifically looking at the experiences of women and what
helps them heal and get better. Has being a woman had an impact on your
experience?

Prompts:
Has discrimination based on the fact that you are a woman had an impact?
Has being a woman made a difference in the type of care and support you
received?

5. This study is also specifically looking at women from African, African-


Caribbean and South Asian groups. Has your race or culture had an impact
on your experience?

Prompts:
Have you experienced discrimination based on your race and culture?
[If yes] Do you think this has had an impact on your mental health and
recovery?
Has your race or culture had an impact on the care and support you
received?

6. Are there other social or cultural aspects that affected your experiences?

Interpretation of the concepts of recovery, resilience


7. Recovery is a term that is now commonly used within and outside
mental health services. What does this term mean to you?

Prompts:
Is this a term that you like to use?
Does this term explain your experience of getting better or feeling okay?
Have you come across any recovery models? [Note: Examples of recovery
models, if they ask you, are Wellness Recovery Action Planning (WRAP), the
Recovery Star, THRIVE, DREEM, etc. You dont have to go into details of these
and if the interviewee does not know what these or other models are, assure
them that the question was not a test but just to see how much people were
aware of these models since they are being used so widely in services.]
Did you find these useful? [Note: Ask this question only if they do know of
any of these or other models.]

84
8. Another term that is commonly used for moving on after experiencing
mental health problems is resilience. What does this term mean to you?

Prompts:
Is this a term that you like to use?
Does this term explain your experience of getting better or moving on with
your life?

9. Is there another term you find helpful in describing your experiences of


healing or getting better?

Views about what enables recovery and resilience


10. Looking back at your journey, what do you think was the most
important thing that helped you get better and move on with your life?

Prompt:
What keeps you well?
If it was an ideal world, if there were no limits and you could create what you
liked, what type of care/support would you have chosen?

[Note: You are coming to the end of the interview now. Describe some of the
positive things that came out of the interview and refer to positive aspects of
the interviewees current life before asking the next question so that you end
on a positive note.]

11. How do you see your future? What might be the next steps in your
journey?

Post Interview
12. I have come to the end of my questions. Thank you for your time and
sharing with me your experiences and views. Could I now ask you what you
thought of the interview?

13. [If you are from the same community as the interviewee] Could you tell
me how it felt to be interviewed by a person from your own community or
cultural background?

OR

[If you are not from the same community as the interviewee] Could you tell
me how it felt to be interviewed by a person not from your own community
or cultural background?

14. Do you have any questions for me?

15. Would you like to receive a copy of the transcript of your interview?

[Note: Thank the participant for their time and input and make sure that they
are alright. If they need to talk with someone about the interview, give them the
signposting information sheet and also the contact numbers of the research
team and encourage them to get in touch.]

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Report by:
Jayasree Kalathil

With:
Beth Collier

And:
Renuka Bhakta
Odete Daniel
Doreen Joseph
Premila Trivedi

Address:
Mental Health Foundation
Sea Containers House
20 Upper Ground
London SE1 9QB
United Kingdom

Telephone:
020 7803 1100
Email:
info@mhf.org.uk
Website:
www.mentalhealth.org.uk
Registered charity number
England 801130
Scotland SC039714
Mental Health Foundation 2011

ISBN 978-1-906162-64-1
88