Beruflich Dokumente
Kultur Dokumente
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
78 References
80 Appendix 1: Participant information sheet
83 Appendix 2: Interview schedule
5
Foreword by
Veronica Dewan
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.
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.
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.
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.
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.
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.
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.
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.
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
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
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.
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.
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
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.
62
Summary
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?
...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
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
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?
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.
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.
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.
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.
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.
Contact information
If you have any questions about the study, please contact Jayasree Kalathil at
jayasree@survivor-research.com.
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.
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
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?]
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?
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?
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?
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?
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.]
85
86
87
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