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Their Sisters' Keepers: Prostitution in New York City, 1830-1870 University of California Press Marilynn Wood Hill Year: 1993 Language: english File: PDF, 2.10 MB Your tags: 0 / 0

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شاهد بازي در ادبيات فارسي سيروس شميسا Year: 1381 Language: persian File: PDF, 4.86 MB Your tags: 0 / 0

Voices of Experience: narratives
of mental health survivors
Edited by

Thurstine Basset
Basset Consultancy Ltd, UK
and

Theo Stickley
University of Nottingham, UK

A John Wiley & Sons, Ltd., Publication

Voices of Experience

Voices of Experience: narratives
of mental health survivors
Edited by

Thurstine Basset
Basset Consultancy Ltd, UK
and

Theo Stickley
University of Nottingham, UK

A John Wiley & Sons, Ltd., Publication

This edition first published 2010
© 2010 John Wiley & Sons Ltd.
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see our website at www.wiley.com/wiley-blackwell.
The right of Thurstine Basset and Theo Stickley to be identified as the authors of the
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Library of Congress Cataloging-in-Publication Data
Voices of experience : narratives of mental health survivors / edited by Thurstine Basset
and Theo Stickley.
p. ; cm.
Includes bibliographical references and index.
ISBN 978-0-470-68363-7 (cloth) – ISBN 978-0-470-68362-0 (pbk.) 1. Mentally ill–
Biography. I. Basset, Thurstine. II. Stickley, Theo.
[DNLM: 1. Mentally Ill Persons–Personal Narratives. 2. Adaptation,
Psychological–Personal Narratives. 3. Mental Disorders–Personal Narratives.
4. Survivors–psychology–Personal Narratives. WM 40 V8895 2010]
RC464.A1V653 2010
362.196′8900922–dc22
2010016190
A catalogue record for this book is available from the British Library.
Set in 11 on 13 pt Dante by Toppan Best-set Premedia Limited
Printed and bound in Singapore by Ho Printing Singapore Pte Ltd.
01

2010

Contents

About the Editors
Contributors
1. Introduction
Thurstine Basset and Theo Stickley
Poem: Recovery – Libby Jackson
2. The Antidote to Madness: Crystallising out the Real Self
Peter Chadwick
Poem: But What is the Cause? – Libby Jackson
3. Surviving the System
Peter Campbell
Poem: They Come and Go – Dave St. Clair
Poem: Fixing Dinner – Dave St. Clair

vii
viii
1
12
13
20
21
31
32

4. Measuring the Marigolds
Alison Faulkner
Poem: The Tears I Cry – Mariyam Maule

33

5. Coping Strategies and Fighting Stigma
Joy Pope
Poem: Day by Day – Libby Jackson

46

6. Living with the Dragon: The Long Road to Self-Management
of Bipolar II
Peter Amsel
Poem: In Exile – Mariyam Maule
7. Coping Strategies
Ruth Dee
Poem: Puppeteer – Esta Smith

45

57
58
75
76
84

vi

Contents

8. What’s it Like Having a Nervous Breakdown? Can You Recover?
Laura Lea
Poem: A Journey beyond Silence – Mariyam Maule
9. The Bridge of Sighs and the Bridge of Love: a Personal Pilgrimage
Peter Gilbert
Poem: Have You Ever Felt Lonely? – Dave St. Clair,
Poem: He Saved My Bacon – Dave St. Clair
10. The Holy Spirit – Healer, Advocate, Guide and Friend
Richard Lilly
Poem: Mist of Tears – Brice Jones
11. CAPITAL Writings
Thomas France, Timothy Bird, Richard Love, Kay Phillpot,
Howard Pearce, Clare Ockwell and Jude Smith
Poem: Nicely Nicely Nought – Martin Snape
Poem: Feel Easy-Fit – Martin Snape
12. The Value of Self-Help/Peer Support
Caroline Bell, Sarah Collis and Joan Cook
Poem: The Clear Sky – Dave St. Clair
13. A Recovery Approach in Mental Health Services: Transformation,
Tokenism or Tyranny?
Premila Trivedi
Poem: To What Could Have Been – Mariyam Maule
14. Stand to Reason
Jonathan Naess
Poem: I Am – Libby Jackson

85
94
95
114
115
116
120
121

141
141
142
151
152
164
165
173

15. Walking with Dinosaurs
John Stuart Clark
Poem: Negatives and Positives – Libby Jackson

174

16. Conclusions, Discussion and Ways Ahead
Thurstine Basset, Joan Cook and Theo Stickley
Poem: The Heart of Humankind – Mariyam Maule

183
192

Index

193

182

About the Editors

Thurstine Basset
Thurstine Basset trained as social worker and worked as a community worker and
social work practitioner, mostly in the mental health field. He is now an independent training and development consultant and runs his own company, which is
based in Brighton. He works for national voluntary agencies, such as MIND,
Together, Rethink, the Richmond Fellowship and the Mental Health Foundation.
He is the Chair of the Mental Health Training Forum, Middlesex University. He
is a Visiting Fellow at the University of Brighton. He has written mental health
learning materials, many of which are published by Pavilion Publishing, with
whom he works in an advisory role. He works as an educational writer for the
Royal College of Psychiatrists. He likes to walk and watch cricket.

Theo Stickley
Theo Stickley trained in counselling and mental health nursing and practised in
both professions for many years. He now teaches mental health at the University
of Nottingham, where he is Associate Professor in Mental Health. He has published widely in the nursing and mental health press. The focus of his research is
mental health and the arts, and he has led on a number of research projects in
collaboration with people who use mental health services. Theo is a keen gardener, motorcyclist and artist (but has not yet found a way to combine all three
simultaneously).

Contributors

Peter Amsel
Composer, writer and healthcare activist
Thurstine Basset
Independent training and development consultant
Chair, Mental Health Training Forum, Middlesex University
Caroline Bell
Groups Training and Development Manager, Self Help Nottingham and the
University of Nottingham
Timothy Bird
Member, CAPITAL Project Trust
Peter Campbell
Mental health system survivor and freelance trainer
Peter Chadwick
Psychologist, Author
Lecturer, Birkbeck College and the Open University
John Stuart Clark (aka ‘Brick’)
Political cartoonist, travel writer and member of Making Waves Ltd.
Sarah Collis
Director, Self Help Nottingham and the University of Nottingham
Joan Cook
User Involvement Development Worker, Self Help Nottingham and the
University of Nottingham
Ruth Dee
Trainer, Researcher and Author

Contributors

ix

Alison Faulkner
Freelance researcher and trainer
Thomas France
Member, CAPITAL Project Trust
Peter Gilbert
Professor of Social Work and Spirituality, Staffordshire University
National Project Lead on Spirituality and Mental Health for the National
Spirituality and Mental Health Forum
Visiting Professor, Birmingham and Solihull Mental Health Foundation Trust
and the University of Worcester
Chair, National Development Team for Inclusion
Libby Jackson
Member, CAPITAL Project Trust
Brice Jones
Chair and member, CAPITAL Project Trust
Laura Lea
Co-ordinator of Service User and Carer Involvement for the Psychology
Doctorate Programme, Department of Applied Psychology, Canterbury Christ
Church University
Richard Lilly
Member, CAPITAL Project Trust
Richard Love
Member, CAPITAL Project Trust
Mariyam Maule
Survivor poet
Jonathan Naess
Director, Stand to Reason
Clare Ockwell
Chief Executive and member, CAPITAL Project Trust
Howard Pearce
Member, CAPITAL Project Trust
Kay Phillpot
Member, CAPITAL Project Trust
Joy Pope
General practitioner, Bolton
Dave St. Clair
Member, CAPITAL Project Trust

x

Contributors

Esta Smith
Survivor poet
Jude Smith
Member, CAPITAL Project Trust
Martin Snape
Member, CAPITAL Project Trust
Theo Stickley
Associate Professor in Mental Health, University of Nottingham
Premila Trivedi
Freelance Mental Health Service User Trainer

1

Introduction
Thurstine Basset and Theo Stickley

In this book people with experience of living with mental health problems
talk about how they cope, survive, manage, recover, discover, struggle, combat
discrimination, thrive, become liberated and grow – in essence, how they live
their lives.
Their stories are about finding meaning and explanations. They are about their
beliefs and their strategies for life – strategies that are rooted in deep personal
experience. This experience is their expertise and offers a guide to others who may
be struggling with living and surviving in the twenty-first century. If anybody can
teach us about how to live in our modern, or postmodern, world, it is people who
have struggled with the complexities of existence and found their own unique
ways of surviving, learning and moving on.

Stories and Narratives
This book can be read on different levels. Certainly, it contains stories that
may inspire hope and encouragement. Also, the book may be read as a
textbook and the contents may be treated as research that can stimulate
inquiry. Either way, what is central is the importance of true stories of people’s lives. In textbook language, stories are often referred to as narratives.
Some say that narratives have been fundamental to the development of human
history, culture and individual identity (Brockmeier, 2001; Benwell & Stokoe,
2006). Thus storytelling provides meaning to events and enables people to
make sense of their world:
Voices of Experience: Narratives of Mental Health Survivors Edited by Thurstine Basset and
Theo Stickley ©2010 John Wiley & Sons, Ltd.

2

Thurstine Basset and Theo Stickley
People dream in narrative, daydream in narrative, remember, anticipate, hope,
despair, believe, doubt, plan, revise, criticize, construct, learn, hate and love in
narrative. (Shkedi, 2005: 12)

The study of narrative is the study of the ways in which human beings experience
the world, that is, through the recounting and retelling of experience. Narratives
are present in every society. All communities have their local stories, mainly focusing on events that have occurred involving local people. Each civilisation has its
own history of mankind. Wherever there are people, there are narratives. People
from all walks of life, all human groups, have their narratives. Such is our
unquenchable thirst for other people’s stories that we become addicted to fiction
and soap operas on television. In recent times, the study and practice of narrative
inquiry has gained momentum in qualitative research and is illustrated with
numerous journals, books and conferences focusing on the method.
In the psychological arena, psychoanalysis has championed the centrality of
the person’s story. The expertise, however, remained firmly with the analyst
and the patient remained a case to study. It was much later, with the development of narrative research, that the storyteller became the narrator in terms
of research processes. What is fundamental to narrative approaches in research
is the notion that it is through the act of storytelling that people make sense
of their lives.
It has been said that narrative has become essential for people to have an
identity and that identity can be understood in two ways. Identity can be understood as something that is fixed (from the Latin root word for identical: ‘idem’)
or something that is permanent but changing. It is this latter meaning from
which we create our narrative identity (Ricoeur, 1988). Thus, the River Thames
may have an historical identity, but is in a constant state of change. Narrative
is therefore a way of balancing both the self that is constant and the self that
is changing as we are able to make sense of ourselves through the stories that
we tell ourselves (and others) about ourselves. The narrative, therefore, is a
product of our constructing, deconstructing and reconstructing ourselves and
our identities. It is fine that our stories change over time, and so they should,
as we change and grow as people.

Narrative Research
Narrative research came to the fore with the work of sociolinguists in the early
1960s (particularly Labov & Waletsky, 1967; Labov, 1972). By the end of the 1970s
narrative approaches in various disciplines had become established. Notably,
Fisher (1984) observed the central role of narrative in politics and of narrative
analysis in political sciences. Polkinghorne (1987) did something similar for psychology; Richardson (1990) for sociology and, by the 1990s, narrative inquiry had
had also become common in various science studies (Silvers, 1995) and provided

Introduction

3

the foundation for research from a variety of other disciplines (Bertaux, 1981;
Ricoeur, 1981; Mishler, 1986; Riessman, 1993; Elliot, 2005).
Whilst we do not locate this book in an illness narrative context, there is much
to be drawn from the illness narrative literature. As narrative approaches gained
momentum in the social sciences, some working in healthcare recognised the
limitations of rationalist frameworks and sought to introduce similar approaches
in healthcare. For example, Frank (1995) identifies three fundamental illness narratives: restitution, chaos and quest. Restitution narratives are those of the person
anticipating recovery; chaos narratives are enduring with no respite; quest narratives are those where people discover that they may be transformed by their
illness. What is common to all types of illness narratives is the focus on the centrality of the telling of the patient’s experience. By gaining knowledge of a disease
from firsthand experience and how people make sense of their illness, or how
people extract meaning from their experiences, the reader may become hopeful
in relation to their own experiences. These principles, based primarily on physical
illnesses, are directly paralleled by experiences of mental distress. Narratives have
become central to the recovery paradigm in mental health. Stories abound of
people’s recovery from mental distress. Naturally, these stories inspire hope in the
reader. Belief in recovery is contagious.
In the UK, there is a medical research project that utilises narrative approaches:
Health Talk (www.healthtalk.org). Researchers from the University of Oxford
have built a massive database of personal and patient experiences through indepth
qualitative research into more than 40 illnesses and health conditions. People’s
stories are communicated through text and mini-interviews. The idea is that
patients, their carers, family and friends, doctors, nurses and other health professionals can access the site, listen to people’s stories and learn from others’ experiences. Historically, in health research, people’s stories are considered to be the
weakest kind of evidence. In Health Talk, however, people’s stories are offered
as expert evidence:
These methods provide a high quality evidence-based approach to patient experience
and ensure that a full range of patients’ perspectives are analysed in terms of what
someone might expect to experience when diagnosed with a particular condition or
illness.
(www.healthtalk.org)

The Department of Health has provided strong support to the Health Talk
research. As far as we can tell, this is the biggest example of narrative health
research being put into practice. Recent NHS guidance has endorsed evidencebased methodology and its importance to informed patient choice.
In their examination of the narratives of people who are deaf, Jones and Bunton
(2004) have identified two camps: the ‘wounded’ and the ‘warrior’. These distinct
categories may also be interpreted as the deficit model or social model, respectively. The wounded are generally those who experience illness as a loss; the
warriors are generally those who see themselves as a marginalised and oppressed

4

Thurstine Basset and Theo Stickley

minority group who need to assert their human rights. The wounded or warrior
concept can illustrate people’s responses to different forms of adversity, including
mental health problems. There are those with serious mental health problems
who seek cures (e.g. SANE: www.sane.org.uk) and those who are proud to be
mad (e.g. Mad Pride: madpride.org.uk).
Illness narratives, however, tell us as much about society as they do about
the people themselves. People are social beings and are constantly influencing
and being influenced by the society in which they live. Often, sick people may
relate to a sick society. Maybe readers need the capacity to look beyond the
illness and examine the broader sociocultural contexts, which are inseparable
from the experiences of mental health problems.

Experts by Experience
Narrative research focuses on the story of the individual and therefore provides
opportunities for individual voices to be heard. As the previous example of the
Health Talk research illustrates, people become experts simply on account of their
lived experiences. Gabriel (2004) argues for the expert authority of the narrator
on the basis of experience. Whilst, for example, the doctor may be considered the
expert in terms of education and the experience of implementing that education
in practice, doctors can never be fully expert until they have experienced the
disease themselves. Thus, there are two experts – one by education and training,
the other by experience. In this book, we deliberately give voice to the expert by
experience in order to help inform those who may experience similar issues and
those who have a caring role. The notion of the patient as expert is enshrined in
recent DoH discourse (Department of Health, 2001).
If we are to acknowledge the expertise of patients, we must also accept the
importance of the service user/patient knowledge that underpins this expertise.
Very little work has been done to establish what service user knowledge is and
how it might be incorporated as a key element in the overall mental health practitioner knowledge base (Basset, 2008). We need to build on the work of people
like Branfield and Beresford (2006) in their support of service user networking and
knowledge.
According to Gabriel (2004), the expert by experience is more vulnerable in
terms of potential exploitation from the expert by education, for it is they that are
more likely to understand research, publish and receive the plaudits and benefits
of a research profile. Neither of us, as editors of this book, has experienced inpatient mental health care. We are therefore more in the experts by education camp.
However, we feel that our relationship with the various chapter writers is that of
colleagues with a strong desire to tell it how it is and publicise important narratives so that they can reach a wider readership. As regards the potential royalties

Introduction

5

from sales of this book, we have arranged to share these equally with two service
user-led mental health organisations: Making Waves in Nottingham and CAPITAL
in Sussex.
It has been our intention to create a platform for people’s voices to be heard.
When people have a voice, they have power. Reality and daytime television
have created a platform for a confessional discourse that empowers victims to
become survivors through acknowledgement of their suffering (Goldie, 2004).
This is also illustrated by the growth of web logs (blogs) where people can tell
their story to a global audience. It is estimated that blogs now exceed 60 million.
In turn, it is now not unusual for authors of blog confessionals to secure book
contracts. Thus a combination of narrative and twenty-first-century technology
has the power to emancipate and liberate as well as provide a vast audience.
Narrative research should empower participants and is one method that gives
voice to the researched; this is especially powerful for those who have been
oppressed.

A Platform for Stories
We would argue, therefore, that stories of people’s experiences of mental health
problems, survival, discovery and recovery are imperative to mental health
research and practice. We hope that people from all walks of life will read this
book and may understand more about what it is like to experience mental health
problems. Many mental health problems are rooted within the society in which
we live. A book such as this may do very little to bring about positive change in
society, but if we can bring about some positive change in even a few readers, we
will have achieved something important.
We thank all the contributors to this book. We shall refrain from commenting directly on their stories, as we believe that we should allow their stories
to speak for themselves. We shall, however, attempt to draw out some themes
that emerge from the narratives in the final chapter. There are only a few narratives within this book and we do not suggest that they are representative of
the many. In this respect, it is important to state that everybody’s story is
uniquely different. We acknowledge that, throughout history, people have paid
a great price for being considered ‘mad’, ‘insane’ or simply an outsider to mainstream society. The price may have been incarceration, loss of relationships,
role and personhood, indignity and in some situations even death. By providing
a platform for people’s stories, we believe we are performing one small act of
restoration. This book may shock, challenge or inspire; whatever it does for
you, the reader, we hope it imparts greater understanding and harmony for
the future.

6

Thurstine Basset and Theo Stickley

The Policy Context
It is not our intention here to write a long piece about policy changes in mental
health. Suffice it to say that the Conservative government in the 1980s and 1990s
oversaw the running down and closure of the majority of the large Victorian
hospitals with the subsequent media frenzy (often front-page news) about the
perceived failures of community care. In their final days they came up with ‘The
Spectrum of Care’ (Department of Health 1997), which, at 12 pages in length, was
perhaps a little bief given the size of the task!
The ‘New Labour’ government, elected in mid-1997, could not be accused of
producing mental health policy documents that were on the laconic side – quite
the reverse. Placing mental health at the top of their agenda, in particular by
publishing, and subsequently following up, ‘A National Service Framework for
Mental Health (NSF)’ (Department of Health, 1999), a steady stream of policy
documents poured forth in subsequent years.
The NSF was a 10-year programme running from November 1999 to November
2009. It would be churlish to be too critical of a government that has made an
enormous effort to improve mental health services. Their focus on mental health
was unprecedented in the UK. However, they always ran the risk of not knowing
quite how much should be changed. They wanted to modernise services, but
they also wanted to use existing structures on which to build this more modern
approach. Hence the decade 1999–2009 can be seen as one which sent very mixed
messages – with messages of social inclusion in the policy and messages of exclusion inherent in additional compulsory measures in the Mental Health Act 2007.
These mixed messages, perhaps a product of applying modernisation in a distinctly
postmodern age, were at times confusing, particularly to service users and grassroots mental health workers.
A hopeful atmosphere was nevertheless created, based on an overall policy
direction that championed social inclusion, fighting discrimination, mental health
promotion, self-management and self-help, holistic approaches and recovery.
These approaches see service users and their families working alongside mental
health workers in partnership. The role of the worker is to enable and facilitate
in assisting service users to live their lives to their potential, using their strengths
and abilities. Finding ways of living with mental distress is a part of the picture.
Fighting discrimination is everyone’s task.
However, it is not always easy to graft new approaches onto old systems. These
new philosophies of support and enablement could not be easily placed within an
existing care, treatment and illness model. The idea that service users are experts
in their own right does not always sit well with professional mental health workers,
who have their own expertise. Nowhere is the difference more pronounced than
when mental health professionals talk of their patients not having insight, when
what they are really saying is that the patient has a different understanding of their

Introduction

7

experience and situation. Clearly, one of the aims of this book is to deliver insight
from the service user’s perspective.
The mental health service system has recent knowledge of the complexity of
these attempts to change ways of working as a similar situation occurred when,
in closing the large hospitals, the institutional practices in these establishments
sometimes followed patients into the community.
Another reason for producing this book is to cast some light on the term ‘recovery’. A close inspection of the NSF for Mental Health (Department of Health,
1999) reveals no mention of recovery. However, it does emerge briefly (albeit
quite upfront in the title) in ‘The Journey to Recovery’ (Department of Health,
2001a) – this policy document was subtitled ‘the government’s vision for mental
health care’. There are four short paragraphs on recovery, stating that a more
optimistic approach is needed with ‘the vast majority of those using mental health
services having real prospects of recovery’ (p. 22).
Eventually, after some key people involved at the National Institute for Mental
Health in England (NIMHE) had pushed through a recovery agenda, NIMHE
produced their Guiding Statement on Recovery (NIMHE, 2005). It was not long
after that that many mental health services declared that they were moving
towards recovery-oriented services.
We feel that despite the central position that recovery attained from 2005
onwards, it came in slightly by the backdoor, and so had even less chance than
other approaches of being implemented properly. The NSF for Mental Health
(Department of Health, 1999) has an underpinning message that services will be
much improved with greater resources and a real effort to bring in evidence-based
practices: assertive outreach, early intervention and crisis resolution across the
whole service. As such, it is pretty much accepting that a properly resourced and
modern medical model of service provision is what is needed. Of course, there is
some emphasis on involving service users and their families as part of this.
Nevertheless, it is just about possible to do all that is necessary within the remits
of the NSF and for the power and expertise to still remain firmly with the
professions.
This is not the case with recovery, which is much more of a challenge to
the medical model and the status quo, with service users both taking the lead
and having their expertise acknowledged alongside that of the professionals. As
a result, we think recovery has struggled when put into practice because of the
culture of most of the services, which could handle the NSF as not too great
a challenge to the expertise of the professionals, but see recovery as a step too
far. Sometimes they do take the step and end up thinking they are following
a recovery approach when they are clearly not.
In essence this book contains accounts of recovery in that some contributors
use the word to describe their experience. Others, however, find the word unhelpful and still others prefer to use the words discovery or survival, often aided by
self-management and peer support. The word ‘recovery’ itself can mean many

8

Thurstine Basset and Theo Stickley

things and hence it is open to different interpretations. However, at root, recovery
starts with and belongs to the service user so one cannot escape the conclusion
that bolting it onto a mental health service which does not really celebrate and
value the expertise of its service users, as has happened in various NHS Trusts, is
simply not going to work. We shall revisit this discussion in chapter 16.
This book was written in the latter part of 2009 as the NSF for mental health
programme reached its final days. As such it is both partly a celebration of
what has been achieved during the era of the NSF and also partly a challenge
for the future.

The Chapters
In chapter 2, Peter Chadwick explores his journey as one of ‘total psychology’
from cognitive neurochemistry to the sociopolitical and spiritual. He recounts
the alienation he felt from within the culture in which he grew up. He sees his
recovery as a product of science, art and spirituality.
In chapter 3, Peter Campbell explains how his experience of mental distress has
been much more about ‘living with’ than ‘recovering from’. He has found that
coping with mental distress is partly about learning practical strategies to mitigate
the worst aspects and partly about making sense of it through frameworks of
understanding that can confer meaning and value. He explores how his involvement in survivor action has helped him progress in his life and combat the discrimination that is deep-rooted in society. He makes some important observations
about in-patient services.
In chapter 4, Alison Faulkner writes about her work as a researcher and her
belief in empowering service users and survivors through doing their own research.
This includes her work as the leader of the ‘Strategies for Living’ project at the
Mental Health Foundation. She also outlines her own strategies for living.
In chapter 5, Joy Pope explains and explores her own and other people’s coping
strategies, drawing on her experience of working as a general practitioner and
journeying with and through depression. She elaborates on a number of ideas,
but also stresses the importance of an individual approach, with each person
having different strategies and things that work for them. She writes about facing
stigma and staying well.
In chapter 6, a Canadian contributor, Peter Amsel, describes how he has coped
living with bipolar affective disorder for 25 years. Peter is a composer of classical
music and also a writer. He compares the impact of his mental health problems
on his work with Beethoven’s deafness and the impact this had on the composer.
Peter describes a faith (not ‘merely spiritual’) that enabled him to continue his
work. It has been important to him to understand his illness, his symptoms and
diagnosis in order to protect him from the dragon that might snap off his head.

Introduction

9

Understanding brings liberation. For Peter, mental illness has been an enemy.
Ultimately, the enemy can be defeated by working in partnership with healthcare
professionals and taking responsibility for oneself. Recovery is possibly if we really
want to recover.
In chapter 7, Ruth Dee talks about how she has coped with the effects of childhood trauma for nearly all of her life. Having experienced horrendous childhood
abuse she began to dissociate when she was aged three. In this chapter, Ruth
describes in detail how dissociation was first a form of coping and then how she
learnt to cope with experiences of dissociation. Ruth was not diagnosed with dissociative identity disorder until later in life, when she experienced health problems
while working as a senior manager. Although Ruth’s experiences might be considered extraordinary, she learnt very practical ways to cope. She describes the
specific help she has received from healthcare professionals and explains the significance of each.
In chapter 8, Laura Lea gives a detailed account of how she gradually rebuilt her
life after breakdown. She also gives some insight into how relatives/carers can feel
when someone they love has a mental health issue. She describes some of the
strategies and building blocks that have helped in her recovery and survival.
In chapter 9, Peter Gilbert recalls his personal pilgrimage and how his life’s
journey led him into and out of depression. He speaks of discovery rather than
recovery and broadly explores the role of spirituality in its many forms and in
relation to the human condition.
In chapter 10, Richard Lilly explains how the Holy Spirit and his Christian faith
has sustained, nourished and helped him to make sense of his life, with nearly 40
years’ experience of the mental health system.
In chapter 11, various members of CAPITAL (Clients and Professionals in
Training and Learning) relate their narratives of coping, survival, discovery and
recovery. The importance of CAPITAL as an organisation that supports and
encourages is often central to their stories.
In chapter 12, Sarah Collis, Caroline Bell and Joan Cook discuss the ways in
which people can help each other through self-help groups and peer support.
Whilst there is clearly merit in professionally-led groups, self-help groups are
defined, run and controlled by their members. The core activity of self-help groups
is mutual support. Deep connections are made when members identify with the
experiences, emotions and reactions of fellow members. Participants benefit from
helping each other and by pooling coping strategies, sharing information and
drawing on the collective wisdom of the group. The authors invited people from
various groups to write letters to them describing the significance of the groups
to their lives. People who have experienced the benefit of such groups have therefore contributed to this chapter. People have experienced respect, healing and
found hope for their lives.
In chapter 13, Premila Trivedi delivers a critique of mental health services and
illustrates how they can take service user/survivor concepts like recovery and

10

Thurstine Basset and Theo Stickley

mould them to fit their structures and frameworks, thus robbing them of their
original ethos. She gives examples of how this has happened in her own experience. She raises questions about the current recovery model and questions whether
it is relevant for black and ethnic minority (BME) service users. At least, it needs
to address social and political as well as personal issues for it to be relevant to
BME service users, who face discrimination through racism in addition to the
stigma and discrimination that is linked to mental ill health.
In chapter 14, Jonathan Naess writes about his experience in taking a sabbatical
from his corporate job in the City of London to set up Stand to Reason. Stand to
Reason is a ‘Stonewall’ for mental health, being a service user-led organisation
committed to fighting discrimination and stigma, challenging stereotypes and
changing attitude. He explains how his experience of mental health problems led
him to do this. He reviews the successes of Stand to Reason and talks about the
organisation’s plans for the future.
In chapter 15, John Stuart Clark (also known as the cartoonist ‘Brick’) employs
a conversational style as he describes his mental breakdown. Escaping to China
was not the answer, and back in England John encountered ‘Atro’, a giant lizard,
white and cynical. Atro was to become an unshakeable nuisance in the coming
years. John sensitively reflects on the impact his experiences have had on his
relationships. He is on a journey: ‘To travel hopefully is better than to arrive, and
the true success is to labour.’
In chapter 16, Joan Cook joins the editors to revisit the concept of recovery and
discuss the role of explanations, beliefs and strategies as part of people’s journeys.
The importance of self-help and peer support is again highlighted. The chapter
ends with an exploration of the role of the mental health worker, and this is summarised in the form of a diagram, which illustrates key elements in relation to
how mental health workers and service users can work together in partnership.
The poems that illustrate the text are broadly on the theme of living with and
surviving mental distress. Mariyam Maule’s poems are reproduced by permission
of the Maule family.

References
Basset T (2008) You don’t know like I know. Mental Health Today (March): 26–28
Branfield F & Beresford P (2006) Making User Involvement Work – Supporting Service User
Networking and Knowledge. York: Joseph Rowntree Foundation
Benwell B & Stokoe E (2006) Discourse and Identity. Edinburgh: Edinburgh University
Press
Bertaux D (1981) Biography and Society: The Life History Approach in the Social Sciences.
London: Sage
Brockmeier J (2001) Narrative and Identity. Studies in Autobiography, Self and Culture.
Philadelphia: John Benjamin
Department of Health (1997) The Spectrum of Care, London: DoH
Department of Health (1999) A National Service Framework for Mental Health, London: DoH

Introduction

11

Department of Health (2001) The Expert Patient: A new Approach to Chronic Disease
Management for the 21st Century. London: DoH
Department of Health (2001a) (The Journey to Recovery. The Government’s Vision for Mental
Health Care, London: Department of Health
Elliott J (2005) Using Narrative in Social Research: Qualitative and Quantitative Approaches.
London: Sage
Fisher W R (1984) Narration as a human communication paradigm: the case of public
moral argument. Communication Monographs, 51: 1–22
Frank A W (1995) The Wounded Storyteller: Body, Illness, and Ethics. Chicago: University of
Chicago Press
Gabriel Y (2004) The voice of experience and the voice of the expert – can they speak to
each other? (pp. 168–185). In B Hurwitz, T Greenhalgh & V Skultans (Eds.) Narrative
Research in Health and Illness. Oxford: BMJ Books/Blackwell
Goldie P (2004) Narrative, emotion and understanding (pp. 156–167). In B Hurwitz, T
Greenhalgh & V Skultans (Eds.) Narrative Research in Health and Illness. Oxford: BMJ
Books/Blackwell
Jones L & Bunton R (2004) Wounded or warrior? Stories of being or becoming deaf. (pp.
189–202). In B Hurwitz, T Greenhalgh & V Skultans (Eds.) Narrative Rresearch in
Health and Illness. Oxford: BMJ Books/Blackwell
Labov W (1972) Language in the Inner City: Studies in the Black English Vernacular. Philadelphia:
University of Pennsylvania Press
Labov W & Waletzky J (1967) Narrative analysis: Oral versions of personal experience
(pp. 12–44). In J Helm (Ed.) Essays on the Verbal and Visual Arts. Seattle, WA: University
of Washington Press
Mishler E G (1986) Research Interviewing: Context and Narrative. Cambridge, MA: Harvard
University Press
National Institute for Mental Health in England (2005) Guiding Statement on Recovery,
London: NIMHE
Polkinghorne D E (1987) Narrative Knowing and the Human Sciences. Albany, NY: SUNY
Press
Richardson L (1990) Narrative and sociology. Journal of Contemporary Ethnography 19(1):
116–135
Ricoeur P (1981) Narrative time (pp. 165–186). In W J T Mitchell (Ed.) On Narrative.
Chicago: University of Chicago Press
Ricoeur P (1988) Time and Narrative, Volume 2. London: University of Chicago Press
Riessman C K (1993) Narrative Analysis. London: Sage
Shkedi A (2005) Multiple Case Narrative: A Qualitative Approach to Studying Multiple
Populations. Amsterdam: John Benjamin
Silvers A (1995) Reconciling equality to difference: caring (f )or justice for people with
disabilities. Hypatia, 10(1), 30–55

Minute by minute
we cope
And hope we can cope
One day at a time
Gradually we recover
And see the sky
And the clouds move
And the sea change colour
And the snowdrops
And the daffodils
Appear through the snow
And remember the snowman
And the Halloween parties
And the birthday parties
And the happy times
Libby Jackson, ‘Recovery’

2

The Antidote to Madness:
Crystallising out the Real Self
Peter Chadwick

The people in this city don’t care what you do sexually as long as it doesn’t involve
children, animals or vegetables. (Ken Livingstone, Mayor of London, April 2008)

I do not see myself as having any family; I do not see myself as having any parents
or any hometown, or as having been to any school. I do not see myself as coming
from any supportive local community (what ‘supportive local community’?!). No
… not at all … instead I am ‘The Man from Nowhere’.
Any sense of real existence only occurred in me, any sense that I was being
a person who was me, a person in his own right, was when I went to Liverpool
to study for my first PhD, which actually was in geology. I was 23. Psychologically,
perhaps even in a sense spiritually, my birthplace was Liverpool. Never do family
photograph albums command my attention, nor photographs of my parents,
school photographs or photographs of my source district. The fact is: ‘I wasn’t
really there’.
When nothing at all that one experiences mirrors what is within, all you become
is a walking shell, an eggshell with no (alive) interior. Your behaviour may be
strange, offbeat, tactless, ludicrous, childish or in various ways deviant, but what
does it matter? Really you’re a hole in space. You don’t exist anyway!

From Nowhere to Nothing
Out of this brutal, sneering, utterly loveless swamp of my physical origins, I was
like a released bubble enclosing a vacuum, looking for a chance to materialise into

Voices of Experience: Narratives of Mental Health Survivors Edited by Thurstine Basset and
Theo Stickley ©2010 John Wiley & Sons, Ltd.

14

Peter Chadwick

something that could be. Psychosis could have overwhelmed me at 22 but my
private reading of psychology somehow kept it at bay. Eventually the tide of
madness came in, in 1979, when I was 33. Ambulance men (Peter and Paul)
dragged me off the road after a suicide attempt when, deluded, I had thrown
myself under the wheels of a double-decker bus. The bubble had popped. The
fact-ridden, materialistic, atheistic world of academic psychology, to which I had
turned at 27, had filled me with nothing. After all, what mirroring of what is within
can a person obtain by reading volumes of impersonal mechanistic facts? All they’ ll
conclude is that they’re a bioelectrical information-processing device! A journey
from Nowhere to Nowhere … resulting in Nothing.
R. D. Laing, now dead, buried and scorned, probably would understand all this.
In a more theoretical and less heartfelt way, it also would make sense to Jean-Paul
Sartre. It’s hardly surprising that Laing would refer to the schizophrenic as ‘the
living dead’. I’m sure he’d been there. As both Oscar Wilde said (and W. B. Yeats
also knew): ‘Give a man a mask’ (in Laing’s case that of doctor/psychiatrist) ‘and
he will tell you the truth’.

Alienation
I don’t know that one really ‘recovers’ from crises such as happened to me as one
recovers from a broken leg. Psychosis is an outgrowth of one’s very life. To leave
it behind like an oxbow lake of thought one has to grow further and out of it. One
gets by, but also tries to get oneself some kind of life, some meaning, some
purpose. One looks for love, for commitment to some endeavour, to someone.
Love someone, build something.
Wherever I am and whatever I am doing, my heart is always in Liverpool or
London. In total years, most of my life has been spent in West London where,
really, I belong and where the mirroring without of that within fully gave me a
life, an identity and a feeling of self-worth. I met my wife and taught psychology
at the university there for over 20 years – real psychology, what we could call
‘person psychology’, not ‘behavioural science’.
Regarding mirroring I must, however, acknowledge another West London
figure, Oscar Wilde. When one reads a writer and finds oneself saying inwardly,
‘Oh! He’s noticed that too!’ or ‘Crikey! He’s felt that too!’ things start to light up
inside that otherwise would remain dormant or paralysed. In a way, where I ‘grew
up’ I was in an atypical kind of ‘locked-in’ state and it was only possible to dare to be
as the years progressed and particularly after moving to West London in late 1979.
Feelings, trust, sensitivity and heartfelt intimacy of expression were like the
plague to my mother and to the men in the culture in which I was born. A lanternjawed, hard-facedness was all that seemed, really, to matter. Carl Rogers would
understand this induced alienation from the Real Self and the distortions of the
personality and feelings of utter life-meaningless that it produces. Always being

The Antidote to Madness: Crystallising out the Real Self

15

something that one is not, saying things one does not truly feel, behaving at odds
with one’s deepest values and sentiments, laughing when one should not laugh,
smirking when one should not smirk, punching when one should not punch − the
childish, emotionally stunted, emotional liar that is the young British male. But
there was one good thing in this parody of a life – at least I knew, in some remote
corner of my mind, that it was ALL SHIT.

Getting Even
My basic problem was not to feel ashamed and worthless about being a feminine
man. ‘Getting better’ has been about externalising – and having valued – that femininity within. But, of course, there is another issue: What do you do with your
anger? How do you deal with your hatred of your abusers? You can’t forgive people
who are so self-righteous and so inflated with their own virtue that they don’t feel
they’ve done anything wrong. It’s like trying to forgive Joseph Goebbels or Islamist
suicide bombers; it would be utter psychological, and spiritual, hypocrisy.
But what one can do is turn the negative around into something creative,
something productive. For example, many a short story has flowed from my pen,
catalysed by the behaviour of the football bullying ring at school − they do well
as Gestapo-style interrogators in Chadwick (2006) and one of them is the homosexual rent boy of Oscar Wilde’s lover, Bosie Douglas, in Chadwick (2007). I’ve
had them as the Incarnation of Sin in short stories and plays but have, so far, spared
my mother, as I really don’t think that she knew at all what she was doing. She
really should have gone to see somebody.
Obviously, one cannot always get out of psychosis in ‘nice’ ways. Hatred and
aggression are not all they’re made out to be and have their uses, particularly in
asserting one’s identity and rights. The French Resistance understood when under
the Nazis that this was not the time for Christian values. One doesn’t treat nasties
like the Nazis well; one treats them badly. The nasties themselves understand that;
treat Hitlers and little Hitlers well and they think, ‘Ah! We can take advantage of
this one! Have some fun!’ Even the teachings of Jesus are a short blanket; they
don’t cover all the trials of life.
As a pantheist, my beliefs have been important to me. We see the cosmos as
necessarily having a positive and a negative side. This applies even in the realm of
the materialistic, as in particles and charges, and of course in life there always
are advantages and disadvantages, arguments, but then counterarguments. In
Christianity, the Father, Son and Holy Ghost have as their opposites Satan, Sin
and Death. Like it or not, some people are designed for the latter triad and relish
bringing evil, suffering and pain into the world and thrusting meaning, trust and
faith out of it. As Churchill realised in the 1930s, they are not the kind of people
to be blown a kiss on the wind, but instead are to be bombarded with fire. It’s sad,
indeed it’s dreadful, but it’s just life. It’s just the way the world intrinsically is.

16

Peter Chadwick

Spreading Femininity
Hatred is not always in the service of evil and is not always weak. My own hatred
for my abusers in my early years has helped me to proselytise and stand for everything in which they did not believe. In the 1970s and 1980s, I wrote dozens of
articles for, and appeared in, a multitude of transvestite magazines that reached
tens of thousands in Britain, Europe and America. I like to hope that what I did
helped to ease self-stigma and encouraged many other transvestites to accept
themselves and be true to who they are. The publications and photo-spreads also
aimed to bring beauty into the world. For someone like myself, who does not see
himself as possessing male beauty, to have had extraordinary female beauty was
a gift that had to be shared. Beauty must show itself to the world, whatever the
cost and however misunderstood.
When I was much younger I was indeed transvestite and also a trace bisexual
– not at all in keeping with the football terraces/building site culture of my youth.
In an analogous way to the Jews and race fascism I was, in turn, a victim of sex
and gender fascists. Had Hitler won the war and successfully invaded the UK, I
would have been taken to a concentration camp perhaps in the Cheshire countryside … and gassed. And the people who would have informed the SS about
‘the sissy boy in our school’ would have been the football bullying ring and their
hangers-on. ‘Getting better’ was about making my life worthwhile, finding people
I could love, not hate, and coming to terms with sorrow. In many ways, it was
creating a sense of self. London enabled me to do that.
In a way there was a sense in which the psychosis was a distraction, like treading on one’s own shoelaces and falling over. Central in my life has been love,
beauty and creativity. These have sustained me. I have never focused on ‘staying
out of hospital’ or ‘managing symptoms’ or even replacing surrealistic thought
with rational thought and logic. I looked ahead of all that, focused on the real root
cause of my crisis, sex and gender fascism and lived a life as opposite to how I was
‘brought up’ to live as I possibly could. That’s where my identity lay − not in
‘doing as I was told’, not in conformity, doing the done thing and boorish manly
behaviour, but in a world of perfumes, poetry and silk. And every imagined sneer
from my enemies of the past would make me stronger and stronger.

The Fighting Underdog
Even when transvestism and bisexual inclinations left me, as eventually they did,
there was much to be done in favour of other victims of abuse. My work on the
positive side of psychosis (Chadwick, 1992; 1997; 2008) has been energised by my
wish to help the stigmatised and I have also done and written things in similar

The Antidote to Madness: Crystallising out the Real Self

17

praise of black people, gay men and lesbians (‘black bastards’; ‘queers’ and ‘lessies’
in the sleazy culture I came from). Perhaps out of hatred could come love, out of
utter ugliness could come beauty, and out of doing the done thing could come
creativity.
My life has very much been characterised by the fighting spirit of the underdog.
I was stigmatised for supposed homosexuality in the 1960s and for transvestism
– my real orientation – in the 1970s. Scandal and gossip followed me and clung to
me like a cloud of magnetic gas. Oscar Wilde knew what it was like to be me,
terror in front, horror behind; like him, the world was my prison. Is it any surprise
I went psychotically paranoid? Throughout my life virtually all of my paranoid
inferences have proved correct! Why not go a step or two further, as I should have
done at school and in the neighbourhood of my youth, and I might still be correct?!
I would have been then! In 1979 I was not correct … so, instead I went mad.
But it needn’t and shouldn’t have happened – and these days, with the more
tolerant and accepting atmosphere we have now, it possibly wouldn’t. But always
there are underdogs, for one reason or another, gradually with time (if not in
schools where bullying is still rife) the playing field of life is getting that little bit
more level as we come to see ourselves as just one species with this singular planet
as the only world we have. We really are recognising that somehow we need to
learn more about how we can get on with one another.
The negative is the easy way. In Christian ideology Satan is seen as being near
and easily accessed. God is more distant and more difficult to reach; one has to
work harder for the positive. The genuine positive is to hike on the harsher path.

Reflections
I am effectively ‘cured’ of schizo-affective psychosis, but this would never have
come about if all I’d aimed to do was think about ‘how to get out of it’ – which
is the usual focus of professionals. I had to delve into causes, not only genetic (my
brother George also was schizophrenic) but also cognitive, motivational, familial,
interpersonal, socioeconomic, political and spiritual. In a way, nobody was to
blame for what happened. The 1950s and early 1960s culture obviously was the
product of heavy industry, two world wars (the second against the greatest evil
this world has ever seen) and generations of biblically seeded hatred of people into
alternative sexuality and cross-gender behaviour. Conformity was the order of the
day; an ethos of never standing out from the crowd, never being in any way different. Such an iconoclastic, heterodox person as me might just as well have been
born in Hell. The whole saga was perfectly understandable, maybe even, in principle, to some degree predictable. The socioeconomic, political and attitudinal
ambiences of my early years were critical to disentangling how this crisis eventuated. Treating it as ‘all in the head’ or ‘all in the brain’ would have been dreadful

18

Peter Chadwick

folly. To recover, I didn’t only have to change what was inside my mind but also
what my mind was inside of. I had to change my circle of friends, both male and
female, my place of work, the kind of work I did, the town I lived in, and how I
lived and expressed myself. If anything, the changes were as much of things outside
myself as of things inside myself. After all, people don’t want to be changed, they
want to be loved.
In this sense my recovery meant putting myself in the way of situations and
people outside of myself who would bring out emotionally what was within –
something my mother (and my late father) had no interest in at all. Their Edwardian
ways only produced a mockery of my real personality. My life was like a trip from
Bristol to Edinburgh, but via New York. My parents and source culture sent me
off in completely the wrong direction. It must have happened to many in those
days. What I found to be just as bad was that the human sciences and the psychoanalysis of the 1960s and 1970s shared the very same homophobic and transvesto-phobic attitudes and social representations as my abusers!! − from Nowhere
to Nowhere, frying pan to fire. No wonder I ended up totally alone and feeling
persecuted by all in the middle of a stadium of paranoid madness. Thank God for
London people.
But speaking as a psychologist, my journey was one of ‘total psychology’ from
cognitive neurochemistry to the sociopolitical and spiritual. Therefore, my recovery was a product of science, art and spirituality. The writings of poets, art critics,
novelists, painters, playwrights and philosophers were all as important as the facts
and theories of science. Discussions with Buddhists and Christians were as important as discussions with psychiatrists; going to church and visiting art galleries, as
important as CBT and diet. For these reasons and many others I believe that a
psychology that is a blend of science, art and spirituality will give us more insight
into the human condition than the impersonal, fact-finding empiricism that currently dominates our subject. Psychology should lead, not just follow culture at
a safe distance, as it has in the past.

Conclusions
I believe with Kaines (2002) that schizophrenia is such that it is as if the positive
and the negative work together to orchestrate all that is. There is a touch of evil
in schizophrenia. To me, evil is real, a semi-tangible force operating in the world,
not just the verbal gas of a social construction or a convenient defensive attribution or label that we apply to people to distance ‘them’ from ‘us’. The schizotypal
and schizoid predispositions are in many ways good (see Chadwick, 2008): they
confer tremendous sensitivity, spiritual sensitivity, imaginativeness, a resonance
to detail, subtlety and nuance, emotions and empathy that are deeper than psychiatrists realise and a capacity to tune in to a level in life more profound than the

The Antidote to Madness: Crystallising out the Real Self

19

average, ‘normal’ person can access. To have all this twisted and deformed into
the agony of insanity is evil. It is the misappropriation of good.
Evil destroys; it is vile and feeds on fear. It destroys love, faith, trust, meaning
and, most of all, hope. To overcome schizophrenia one must create, value beauty,
seek love in one’s heart and meaning and purpose in one’s life. Reason and fact
can help, but in the story of life they are the lesser good.

References
Chadwick P K (1992) Borderline – A Psychological Study of Paranoia and Delusional Thinking.
London and New York: Routledge
Chadwick P K (1997) Schizophrenia – the Positive Perspective: In Search of Dignity for
Schizophrenic People. London and New York: Routledge
Chadwick P K (2006) Critical psychology via the short story: On the masculinity and
heterosexuality Thought Police (MASHTOP). Journal of Critical Psychology, Counselling
and Psychotherapy, 6(4) (December): 200–209
Chadwick P K (2007) Freud meets Wilde: A playlet. The Wildean, 31 ( July): 2–22
Chadwick P K (2008) Schizophrenia – The Positive Perspective (second edition): Explorations
at the Outer Reaches of Human Experience. London and New York: Routledge
Kaines S (2002) The bipolar originating consciousness, Open Mind, 114 (March/April):
10–11

But what is the cause
Emotional insecurity
Financial insecurity
Harsh words or deeds of people we care about
or simply an illness
Like diabetes
Can we understand
Or should be try
Just try and live
And cope
But not alone
The isolation and pain
is too much to bear
We need kind words
Love and understanding
Of others and then
we too can be whole again
And not be afraid
And not alone
But able to cope
And be happy
And laugh
And cry
With others who may not understand
But care
Libby Jackson, ‘But What is the Cause?’

3

Surviving the System
Peter Campbell

This chapter reflects my 42 years of using mental health services. Although I do
not particularly care for the now fashionable expression ‘expert by experience’, I
can certainly claim a great deal of intimate, firsthand knowledge of services, in
particular acute wards. I have had more than two dozen admissions in 11 different
psychiatric hospitals across the UK: Scotland, East Anglia, South West London,
North West London. About two-thirds of my admissions have been under sections of the Mental Health Act and I have experienced some of the unpleasant
accompaniments of compulsory treatment, like solitary confinement in a police
station cell or in an on-ward seclusion room. While on an acute ward I have often
done very little except eat large quantities of carbohydrate-heavy food and sit in
the dayroom enduring the smoky atmosphere. While an in-patient or out-patient
I have, almost inevitably, consumed large quantities of psychiatric drugs and these
have been the mainstay of my care and treatment. Although 42 years seems, and
is, a long time, I don’t regard my story as being that remarkable or extraordinary.
In many ways, I could be seen as a typical ‘revolving door patient’.
Anyone who experiences continuous or episodic mental distress makes efforts
to come to terms with it. These are not phenomena that can easily put to one side.
Coping with mental distress is partly about learning practical strategies to mitigate
the worst aspects and partly about making sense of it through finding suitable
frameworks of understanding that give the phenomena meaning and value. The
most readily available and, by some distance, the most influential framework for
understanding severe mental distress is the ‘medical model’, which asserts that the
problem is basically one of illness with genetic or biochemical origins. Most people
will have this model thrust at them from the moment they enter services for help
and notably as part of the process leading to a psychiatric diagnosis. Moreover,

Voices of Experience: Narratives of Mental Health Survivors Edited by Thurstine Basset and
Theo Stickley ©2010 John Wiley & Sons, Ltd.

22

Peter Campbell

the general progress of individuals and their possession of the highly valued (by
professionals) attribute of ‘insight’ will often be thought to be significantly linked
to the degree to which they accept the medical model as an explanation.
For a number of years, I accepted the medical model as a framework of understanding. During my second admission I remember the consultant giving me a
detailed account of what manic depression was (including diagrams). I accepted
this at the time and found it helpful. But I gradually came to appreciate drawbacks
to the framework. My reading suggested the model might not stand up scientifically. The emphasis on distress as illness not only encouraged a resort to exclusively physical treatments (drugs, ECT), but pushed to one side any consideration
of the content and meaning of my crisis episodes. Thinking of myself as having a
chronic and incurable illness robbed me of power and agency and confined me
within an essentially negative category. By the time I was entering my second
decade of service use, the medical model, which I had initially found reassuring,
seemed increasingly unsatisfactory, without the capacity to encompass the complexity of my interior or exterior life and give it positive value. As a result, I began
to actively explore frameworks that better met my needs.
Today, I am happy to identify as a mental health system survivor. Although
there are other aspects to my identity, this description helps me to convey and
accommodate central elements of my life experience. I find the term ‘survivor’ a
positive one, although I know some service users see it as too confrontational,
too negative, too pessimistic. To be able to say ‘I am surviving’ certain very real
difficulties carries a degree of pride for me. But the more important point is about
what I am surviving: the mental health system. It is this that gives me a helpful
and, I believe, realistic perspective on my situation.
As a starting point I take mental distress to be part of the mental health system.
Because I speak of distress rather than illness and place emphasis on the importance of society’s response to my distress does not mean that I am minimising its
significance. It is mental distress that has led me into the mental health system. I
do not believe myself, or the majority of service users, would be in that system
unless we had experienced such distress. But I must survive much more than
distress itself. In particular, the way services relate to me as they attempt to offer
assistance presents a series of obstacles I must contend with. These range from
compulsory care and treatment to institutional practices and an absence of real
listening. Then, at the point when I return from in-patient to out-patient status, I
must survive society’s response to mental health service users – in short, discrimination. Although there have been some changes in attitudes and practices in the
last 40 years, discrimination remains deep-rooted in our society and culture.
Surviving prejudice and discrimination is a significant aspect of life for all mental
health service users. Indeed, an increasing number now claim that it has a greater
impact than the problems that brought them into services in the first place.
Identifying as a mental health system survivor makes more sense and is
more helpful to me than thinking of myself as mentally ill, a mental patient or
even a service user. It has parallels with the social model of disability, which

Surviving the System

23

emphasises social responses to impairment as disabling rather than impairment
itself. Although I have never thought of my distress as an impairment (I now
have severe hearing loss, which I do recognise as such), the focus on social processes rather than individual pathology rings true and has been empowering.
In recent years, an increasing number of service users have come to view, and
been encouraged to view, their life experiences as part of a recovery journey. A
number of organisations have solicited ‘recovery narratives’ in order to inform
better mental health practice. This framework leaves me completely cold. I have
never thought of my life in terms of recovery. I have never contemplated recovery, am not ‘in recovery’ or recovered. While there are some differences over
what exactly people are supposed to be recovering from, there is a strong sense
that it is something catastrophic. One often-quoted definition of recovery talks
about ‘the development of new meaning and purpose in one’s life as one grows
beyond the catastrophic effects of mental illness’ (Anthony, 1993). I do not see my
mental distress as a catastrophe. Although I have been confronting acute crises
since the age of 17, I have never considered them as a catastrophic interruption
to my life, a major loss or setback from which I am trying to recover. For me, it
has been more like a process of adaptation to new realities, where the emphasis
is on stumbling forward to make new discoveries rather than looking back to
recover lost ground. Although I applaud many of the changes implicit in the
introduction of a recovery approach to services, I could never supply a recovery
narrative. My experience of mental distress has been much more about living with
than recovering from.
One attraction of alternative frameworks is that they often allow more focus
on the content of the unusual thoughts and perceptions that may accompany
mental distress and make room for more positive valuations of the whole experience. Spiritual and religious frameworks frequently allow this, as do perspectives
that see distress as an aspect of personal growth. A number of my crises have
contained strong spiritual or religious aspects, although this has become much
less evident in recent years. While I have never been able to integrate these experiences into a coherent spiritual framework and don’t believe that they have given
me any special insights into my life or life in general, I do see them as legitimate
reflections of my character and everyday concerns. I certainly would not dismiss
them as meaningless facets of a psychotic episode.
I believe there are very real difficulties in attempting to place a positive value
on mental distress. Certainly, my own experience of living with recurrent crises
is that they are overwhelmingly destructive events. Although I have been accused
by a number of psychiatrists of ‘enjoying mania’ (as is the custom), my crises have
almost always been nasty, brutish and short. I have never had the chance to ride
the euphoric waves of mania for weeks in the way some people apparently have.
For me, crisis has almost always been a rapid descent through unusual thoughts
to confusion, fear and self-control lost or taken away. To suggest that it is enjoyable and to imply that I may in some way seek mania out is to completely miss
the point.

24

Peter Campbell

On the other hand, I would contend that my capacity to enter crisis (psychotic
episode) is inextricably linked to other personal capacities, which have more
recognisably positive characteristics. Creativity is perhaps the most obvious
of these.
All these capacities are integral to me. Perhaps, by losing my capacity for psychotic ideation and behaviour, I might become less of a person rather than more
whole. It is notable that many people with a mental illness diagnosis do not want
their unusual capacities removed from them, either because they have positive
aspects or because they are so essential to who they are. I could not argue that
mental distress has made me a better person, although I have learned a lot from
living with it and gained immensely from knowing other people with similar
experiences. In the end, mental distress is, as the phrase implies, essentially problematic. You can survive it, recover from it or grow through it. But the truth is,
the majority of us would prefer to avoid it.
One of the difficulties facing people who are trying to make sense of their
mental distress is not so much the availability of alternative frameworks as the
dominance of the medical model. Accepting a spiritual framework may be helpful,
but its usefulness can be limited if the rest of the world accepts a medical model
explanation. And that, to oversimplify a little, is pretty much the actual situation.
Although in more recent years I have found the company of friends and colleagues
who have diverse understandings of distress, for the majority of the last 40 years
I have been surrounded by people who believe that mental distress is an illness
or disease. In particular, almost all my interactions with mental health services,
which have been extensive and where I have been at my most powerless, have
been carried through on this basis. Regardless of my own inadequately worked
out understandings, I am in the hands of experts who assume an air of certainty,
defining my crises as ‘relapse’ and placing social circumstances beneath ‘noncompliance with medication’ in the scale of causation. In these circumstances,
without wishing to deny the value of minority perspectives completely, it is possible to detect their practical limitations. Like it or not, the vast majority of service
users must make some accommodation with the medical model. It is too pervasive and its adherents too powerful to be entirely avoided. While those who break
off from services may enjoy some ideological space, for those left struggling in
the service system, myself included, it is much less easy.
The practical implications of living with mental distress vary considerably from
individual to individual. One important general dividing line may be between
those who are contending with quite high degrees of distress almost continuously
and those, like myself, whose distress is essentially episodic. Although in recent
years I have begun to experience bouts of depression that can last for weeks or
even months, most of my difficulties have occurred in relatively short, welldefined and dramatic crises. I have not usually had to cope with distress on an
ongoing, day-to day basis. Many of the strategies I have adopted to survive everyday life in these circumstances have been largely about healthy living and are

Surviving the System

25

applicable to the entire population. A good routine, a healthy diet, adequate ways
of relaxing and proper amounts of sleep are chief among these. The last of these
has particular importance and I have often been tempted to see my crises as being
as much about an exaggerated sensitivity to lack of sleep as anything else.
Predicting and trying to respond sensibly to the circumstances that bring on a
crisis has been a central part of my survival strategy over the years. In some cases,
avoiding doing certain things has been useful, but the truth is that avoidance of
stress is often neither easy nor desirable and if it came down to taking risks and
having a fulfilling and challenging life or doing very little but staying out of the
acute ward more, I have always decided to do the former. It is one sign of the
greater sophistication of services over the last 30 years that they have tried to assist
me in anticipating and preparing for difficult situations where they previously
ignored the issue altogether.
Observers confronted with the frequency of my admissions in the last 40 years
could well conclude that any strategy I have had for avoiding crises has not been
particularly successful. It is hard to argue otherwise. Unfortunately, I have always
had the capacity to move into a crisis extremely rapidly, often in only 36 hours,
and this has made it very difficult for me or others to take avoiding action.
Moreover, predicting the circumstances that bring on a crisis is by no means an
exact science. Life is unpredictable and unexpected circumstances like the death
of a loved one, the illness of a friend or a cataclysmic world event can upset the
best laid safety strategy. At the same time, while many of my crises have occurred
at times when I was vulnerable and so make a certain amount of sense in retrospect, a few still seem entirely inexplicable and not clearly linked to what was
going on in my life at the time.
For whatever reasons, crises have been a regular feature of my adult life and I
have seen the inside of a good many acute wards. By and large, they have succeeded in putting me back on the rails without satisfactorily meeting my real
needs. In my opinion, this can be attributed to an approach that is essentially
dehumanising. One aspect is the failure to respond to crisis holistically and, in
particular, to help people come to terms with the content of the troubling thoughts
and perceptions that often accompany extreme distress. To ignore these areas is
to deny the full meaning and significance of the experience and leave individuals
in an unsatisfactory limbo. Equally important, is the comparative lack of ordinary
conversation between staff, particularly nurses, and patients. Interaction between
patient and staff and, indeed, between patient and patient is often at a low level
on acute wards. While staff frequently talk about their days in terms of ‘firefighting’ difficult situations, patients describe days of boredom and inactivity. My
own impression is that, for a range of reasons, staff now have less time to talk
naturally to patients than they used to, although complaints about nurses spending
all their time in the nursing office were also a feature of services in the 1960s and
1970s. For me, coming to terms with a crisis has always been essentially a solitary
task, although carried out in close proximity to others in the acute ward. Having

26

Peter Campbell

developed a severe hearing loss ten years ago to which acute ward culture is in
no way adapted has accentuated that isolation.
The deficiencies in the human response to crisis provided by the acute wards I
have experienced are particularly notable in relation to the emotions that are
aroused in the individual. Crises are frequently accompanied by traumatic events:
detention by the police, restraint in handcuffs, solitary confinement in a police cell
while awaiting assessment, compulsory detention, further instances of confinement or restraint. Inevitably, these have an impact on the recipient. Confusion,
fear, anger and despair can result. Yet, in my experience, staff on acute wards are
rarely very sensitive to these additional aspects or even to the emotional distress
that has led to the crisis in the first place. While I would not accuse acute ward
staff of being uncaring, I do feel that they usually place tight boundaries on the
degree of caring and comfort they routinely offer to distressed individuals.
Surviving a repeated failure of the caring imagination in the face of crisis has been
a significant element in my career as a service user.
One of the feelings that frequently occur during a crisis admission and in its
aftermath is shame. This may be attached to the strange, outrageous and uncharacteristic behaviours that accompany a crisis, but is also frequently related to a
strong underlying feeling of personal responsibility. Thus, a crisis of mental distress is somehow always to a real extent my fault in the way a crisis of physical
health characteristically is not. Viewing crisis as a failure may be exacerbated by
professional attitudes (I have never been congratulated on handling a crisis better
than a previous one) and by over-simplistic approaches to non-compliance with
medication regimes, but is probably linked to something more profound. The idea
that to exhibit mental distress is a sign of personal weakness, a character defect
even, is one that has been known to me since childhood and is not easily thrown
aside, despite our now living in times of disability rights and survivor activism.
I would not claim that shame at being ‘mentally ill’ has been an everyday
feature of my adult life. Nevertheless, it is quite obvious that living with society’s
generally negative view of mental illness is an important aspect of the experience
of almost all people with a mental illness diagnosis. Discrimination encountered
while seeking employment has been one of the most hurtful and frustrating
aspects of my adult life and there was a period when I found it almost impossible
to be honest about my history of service use and succeed at job interviews, even
for work that was a long way below my capabilities. On the other hand, I was
able to work with pre-school children on and off for 15 years despite my history,
and have been in some kind of employment for most of the last 40 years. While
outright discrimination is a regular occurrence and should not be underestimated
(it is striking how often students omit physical and verbal harassment of service
users from their discussions of discrimination), it could be that the slow attrition
of living in an uncomprehending society does even more damage.
Research has shown the impact of the anticipation of discrimination, even when
discrimination is not actually occurring (Thornicroft, 2006). Stigmatising attitudes

Surviving the System

27

can be internalised. It is very difficult to be continually confronted by negative
stereotypes of violence, alienness and incompetence propagated by the media
without some erosion of self-esteem. Although there is now a greater degree of
openness and tolerance about ‘mental illness’ among the public, in some respects
this is not an irreversible progress and most people with a mental illness diagnosis
still feel constrained to keep secret about what may be an important aspect of their
life. This is particularly true if their problems are deemed to be due to psychotic
illness. In my view it is not possible to counter discrimination by persuading
society that there are no differences between people with a mental illness diagnosis and other people. Although there is a common humanity to which we must
always return, the interior and exterior experiences are often substantially different, in particular in relation to the unusual thoughts, feelings and perceptions that
may be experienced. The equal citizenship of mental health services must be built
not on similarity but the positive valuation of difference.
Mental health services have played a basic role in helping me cope with mental
distress. In particular, they have provided a degree of sanctuary and support when
I have been in crisis. This has enabled me to continue returning to a reasonably
full life over a long period and is by no means a negligible service. What mental
health services or the mental health system as a whole have not done is improve
the quality of my life. For transformation in this area, contact with other service
users/survivors and involvement in service user/survivor action has been largely
responsible.
In the early 1980s, I was really going nowhere in my life. I was significantly
without hope, had low self-esteem, was isolated, silenced, struggling to stay on
the surface while carrying the burden of ‘mental illness’ in secret across one shoulder. Although to an outsider I might appear to be coping with my predicament,
had my own accommodation and was not dependent on benefits, in reality my
life was on hold, without great meaning or purpose. Regular contact with other
service users/survivors, particularly activists, from 1984 onwards slowly began to
change the situation. Acceptance was a vital element. Although knowing other
service users did not prevent me from continuing to have crises that necessitated
admission to the acute ward, this was no longer viewed by those around me as
an extraordinary or catastrophic event. Instead, mental distress was seen as an
aspect of who I was, which did not detract from my character or competence.
Unusual behaviour was unusual behaviour but everyone behaves strangely at
times – that’s life. Openness was important. Because we often had similar experiences, discussion of mental distress and society’s response to it became a good
deal easier. More often than not, other service users/survivors I met had the same
type of responses to the treatment they had received in the system and it was
possible to develop a critical analysis that placed our experiences in a more convincing perspective. The capacity for mental distress was not automatically devalued. In the late 1980s I was fortunate enough to be able to enter a positive
community based on shared experience and to replace isolation with solidarity.

28

Peter Campbell

I learned a great deal about mental distress and the mental health system that
I had previously never known, partly through contact with other service users/
survivors and partly through study. I gained a better understanding of areas I was
largely unfamiliar with, like hearing voices and self-harm, and this enabled me to
appreciate my own situation more sensitively. At the same time, as an activist I
was increasingly being asked to put my personal experiences of mental distress to
constructive use in the attempt to change services and public attitudes. Through
this process my relationship to my own distress began to change and I no longer
perceived it as an unequivocal burden but as something that could have a positive
value to others and could be used creatively. In certain circles, my mental distress
ceased to be solely a secret burden that I carried about and became an asset that
was sought out and treated with some respect.
Using a hitherto negative personal history in a positive way can be liberating.
That has certainly been my own experience of involvement in survivor action.
While some of my other activities over the years have been worthwhile and
rewarding, in particular working with pre-school children, being a survivor activist
has given me a particularly strong sense of purpose and self-esteem. It is linked
more deeply to who I am and relates to goals to which I am particularly committed. It has become a way of life which, although by no means excluding continuing
mental distress, is much more satisfactory than any I had achieved prior to the
early 1980s. Whatever survivor action has achieved in changing the mental health
system, and I do believe certain changes have resulted, it transformed my personal
development. I gained new skills and new confidence, learned how to speak in
public and how to organise voluntary groups. I learned how to teach. At the same
time, I had the opportunity to travel extensively in the United Kingdom and, to
some extent, outside it. I was able to develop a busy, interesting and purposeful
life. While I don’t believe the purpose of survivor action is to be therapeutic, there
is no doubt that it changed me for the better.
Since 1990 I have been working as a freelance trainer in the mental health
field. I think I was one of the first survivors to take this path. In a sense I have
moved from being a recipient of services to a paid mental health worker, although
I am not directly involved in service provision. Certainly, the role of freelance
trainer would have been unlikely to be open to me without my personal experience of the mental health system. I have no formal teacher training or qualifications as a mental health professional. Nevertheless, being a survivor trainer is
not simply about personal experience, and the mental health education field has
moved some way beyond merely wanting service users to talk about their personal experiences in training sessions. It seems to me that a successful survivor
trainer offers analysis and critique of the mental health system (often derived
from the service user/survivor movement) that is informed and illustrated but
not dominated by personal experience.
Personal experience undoubtedly has a huge immediate impact as an educational tool. This affects both the teacher and the student. In my early years as a

Surviving the System

29

freelance trainer I was frequently aware of how using personal examples of distressing situations like solitary confinement (seclusion) had a delayed effect on me,
causing me to feel upset and destabilised after the teaching session was over. At
the same time, students can be overwhelmed by the overuse or inappropriate use
of personal testimony. There is a potential tyranny of personal experience that
can pre-empt disagreement and make fruitful discussion and debate between
teacher and student very difficult. On the positive side, the use of personal experience can undoubtedly open up a wider and more sensitive understanding of
problematic issues. The generally enthusiastic response by students to input from
survivor trainers is in no small part due to this personal element.
Developing a career as a freelance trainer has been important to me. One aspect
of this has obviously been connected to finding an audience prepared to positively
value personal experiences I had previously kept hidden. Doing something constructive with my life experience has been personally empowering. But I have also
had to develop new skills as a teacher and communicator, to study, to keep up to
date with developments in the mental health field, in a sense to turn myself into
a professional. These were relatively new experiences in my life and brought their
own degree of excitement, satisfaction and pride. As a freelance trainer I have not
always travelled completely from the status of outsider to the position of insider
in the educational field. The extent to which I have been involved in curriculum
development has been relatively limited. I have more often provided one-off sessions on training courses than worked on their long-term development. Although
this has sometimes been disappointing, I do not entirely regret it. My vision of
survivor trainers is that they remain somewhat removed from the educational
system rather than totally absorbed within it.
I have been very fortunate to live for more than 40 years with mental distress
and have a fulfilling life for a good deal of that time. I still find the reasons why I
have been able to cope and not ‘go under’ slightly mysterious, although the
support I have received from services and from friends and loved ones has been
crucial. Hope has been an important element. The point when I became convinced that mental distress would not destroy me or relegate me to the back wards
of an institution was very significant and followed at a later stage by the belief
that I could go on and have a constructive life. Being accepted in my full humanity, with my differences, has also been vital and something I have been more likely
to find among fellow survivors than within services. Being treated with compassion when in mental distress has not always happened, but has not been forgotten
when it occurred.
The mental health system changes very slowly. My mental distress, while episodic, is enduring. Services, particularly acute services, may have improved but
still find it difficult to respond sensitively to individual needs and understandings.
Society remains substantially uncomprehending. These are basic realities that I
cannot change but must accommodate myself to. They are the reasons I still see
myself as surviving the system.

30

Peter Campbell

References
Anthony W A (1993) Recovery from mental illness: the guiding vision of the mental health
system in the 1990s. Innovations and Research, 2: 17–24
Thornicroft G (2006) Shunned: Discrimination against People with Mental Illness. Oxford:
Oxford University Press

For example. How many questions
Are there. An endless stream
And answers?
What is a wall? How did it get there?
A constant factor. The separation between
A wall, and as myself comes and goes
Lodged in my mind are so many concepts
I don’t know.
What process of thought should I abide by
Even if it is so old
Before. I arrived, did I know
Even to accept what I learnt in class
Just didn’t work anymore
I had to switch off. Do what I have to
Go onwards into a place
A type of acceptance, a world in which
To live within limits
I take the same path home, visit the
Supermarkets, search for bargains
In second-hand shops
Sit down on the benches in the main
High street, smoke a cigarette
As I usually do and stare as hard as I can
At the coloured lines representing
Street signs or shops.
So much for advertisements, television news
And radio broadcasts. Email and websites
I only know as much as I know.
Dave St. Clair, ‘They Come and Go’

Mardi Gras noon Somerset soon
a plastic red balloon
a spoon up your nose
a line or two
beneath the doom
addiction fruition
dying in need
fixing up
rapping outside in the morning
a craving
something happening
within my mind
reversal
stopping
in the woods of the past
a glass cutting
a broken window
voices screaming
in prisons and asylums
even on the streets
people freaking out
running like mad men and women
what am I doing here
and why is all this
happening to them
I wonder if
I might end up that way
the thought crosses my mind
for a second
then I too switch off
and blank out the thoughts
rather like not being able to forgive people
especially my parents
and siblings
Dave St. Clair, ‘Fixing Dinner’

4

Measuring the Marigolds
Alison Faulkner

Inchworm, inchworm
Measuring the marigolds
Seems to me you’d stop and see
How beautiful they are
(Kenny Loggins, The Inch Worm)

All too often, clinical academic researchers in mental health are, in my opinion,
trying to measure people inappropriately and failing to see the whole human
being, which is why this song comes to mind. In this chapter, I am hoping to
convey something of the beauty of the marigolds growing in the mental health
field. For much of my life, I have worked as a researcher and latterly sought to
enable other mental health service users to take an active role in research, thereby
taking more control of the research process. The word ‘research’ covers such a
wide range of activities, methodologies and investigations that it is a wonder we
have only one word for it. In many ways, my personal search has been for coalescence between my identity as a ‘researcher’ and my identity as a ‘mental health
service user’. We all have a number of hats, or labels, by which we may become
known privately or publicly, and these are just two of mine, although they are
the most significant for the purposes of this chapter.

Researcher
I fell into research by accident, never having had a clear idea of what I wanted to
do or be. Following a psychology degree and an MSc in Applied Psychology, I

Voices of Experience: Narratives of Mental Health Survivors Edited by Thurstine Basset and
Theo Stickley ©2010 John Wiley & Sons, Ltd.

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Alison Faulkner

was offered a nine-month contract in the psychology department in which I had
studied for the latter and subsequently went on to work for MIND (NAMH). From
my own experience of mental health difficulties and an admission to psychiatric
hospital as a student, working for MIND seemed like a natural step to take. I
became research assistant on a project researching section 136 of the Mental
Health Act (1983) and was fortunate enough to have some fascinating experiences
during the course of the following two years. These included sitting in the custody
office as observer in Tottenham Police Station, North London; going out on the
beat with a young PC; interviewing psychiatrists about their assessments of people
picked up by the police; and, finally, attempting to interview patients held under
section 136 in Claybury Hospital.
From there I went to work for a social research institute as a qualitative
researcher. Qualitative research is about finding meanings and understanding
people’s behaviour and motives; it is not about attempting to measure people or
to fit them into preconceived categories. It still means being rigorous, however,
and analysing the information gathered very carefully. This appealed to my need
to make sense of the world, to understand more about what was going on for
people through research but without the artifice of measurement.
Using scales and questionnaires to measure has an attractive simplicity about it,
which fits neatly with the need of the medical model to diagnose, to place people in
boxes and put labels on them. The simple fact that mental health professionals often
have to rely entirely on self-reporting in order to reach a diagnosis is fraught with
the wonderful complexities that render us human. Measuring the diameter of a
marigold tells you nothing about what it looks like as a whole bright-orange flower.
In reality, practising professionals often do realise the complexities of lived
experience; my own psychiatrist has been reluctant to place a label on me. It is
often the researchers, the clinical academics, who rely so much on people fitting
into boxes in order that research can be carried out on people who fit into the
required diagnostic categories. They persuade themselves in this way that they are
carrying out true scientific research. Even they are not responsible for this though
– it is the whole Western approach to science and research, the positivist crew who
steer the ship at present. The current push towards evidence-based practice within
our health and social care services emphasises this need for ‘scientific’ research.
If I could make any difference to the research world, it would be to finally raise
the status of good quality, rigorous, qualitative research to meet that of clinical
trials on an equal basis, to do away with the ‘hierarchy’ of research, which places
randomised controlled trials at the top as the gold standard of acceptable evidence.

Doing Research Differently
My first opportunity to do research differently came whilst working at the Mental
Health Foundation in around 1995. Believing in the importance of bringing service

Measuring the Marigolds

35

users into the research agenda, June McKerrow (the director at that time) put
resources into a project, of which I was the leader, with a steering group entirely
of service users. The Mental Health Foundation was a strange place when I first
went there; it acted as a series of committees giving money to predominantly
medical researchers, many of whom could not understand the concept of service
user researchers or research.
It was a challenging project, but a good one. We had a great team of people,
including Andy Smith, David Crepaz-Keay, Marion Beeforth, Linda Smith from
the African Caribbean Mental Health Users Group, people from Brent User Group,
UKAN, the Hearing Voices Network and London Voices Forum. During the
course of this project I came to understand that I, too, was an ex-service user. As
a student, I was admitted to hospital for a month and attended a therapeutic community day hospital over the summer between my first and second years. It was
a strangely difficult concept to come to terms with at the time, and it was not until
a couple of years later when I found myself in hospital again that I fully embraced
the idea of being a ‘service user’, or person with mental health problems.
The research, which came to be written up as ‘Knowing Our Own Minds’
(Faulkner, 1997) was entirely user-led. We were given the freedom to design
our own questionnaire and to decide on the topics and questions in it. We
decided that we wanted to know what service users thought of different therapies and treatments, how helpful they found medication and talking therapies,
and what other things they found helpful in their lives. At times, designing a
questionnaire by committee was a bit of a nightmare, and it led to a decision
towards the end of the project to select an editorial group from members of
the steering group.
The research uncovered some of the subtleties of the ways in which people
viewed their medication, their positive and negative experiences of talking therapies and what people found helpful in a crisis (not surprisingly, someone to talk
to). We began to hear about the role of religious and spiritual beliefs in people’s
lives, and the ways in which many diverse things could be helpful to people (in
giving a structure to the day, the importance of being listened to, being treated
as a ‘whole person’, the role of peer support, finding ways of expressing feelings).
‘Knowing Our Own Minds’ demonstrated the importance of understanding the
full context of people’s lives: how it is that people find ways of coping on a dayto-day basis and what alternatives they seek when conventional treatments do not
solve all of their problems, or indeed create new ones.

Strategies for Living
‘Knowing Our Own Minds’ formed the foundation for our proposal to the National
Lottery for ‘Strategies for Living’, a programme that became my best job ever.
However, its publication in 1997 coincided with the death of my father in a year

36

Alison Faulkner

that became my own annus horribilis. Later that year, my relationship of seven
years came to an end; I bought my first flat and turned 40. I began 1998 in psychiatric hospital.
Over the coming weeks, months and years, I found myself living with the
feeling that I had no future, alongside finding that I was working on a fantastic
project that everyone seemed to want a piece of. At times that in itself could be
overwhelming, but we were a close and supportive team and one of our most
vital strategies for surviving was humour. There are so many incidents now that
I can look back on and smile about. As before in my life, I found that work was
an essential part of my own strategies for living, and the team at the Mental Health
Foundation became my day centre, giving structure to my day and a purpose to
my life.
The core Strategies for Living research project, which became the report
published in 2000 (Faulkner & Layzell, 2000), found out nothing that can be
described as new or groundbreaking, yet it was both of these things. Service
users interviewed service users; people with mental health problems interviewed
each other and others with sensitivity and care. Some people had never been
asked these kinds of questions before and were moved by the experience of
being interviewed by someone who came to them with honesty about their
own experience.
We described it as ‘user-led’ research; it was led by a team of service users
who designed and carried out the research, interpreted and wrote it up (ibid.;
and see Nicholls, 2001). The research was part of a new movement towards
empowering service users through research. In some ways it did not go far
enough, but it did go a long way (see Nicholls et al., 2003, for further developments) At the same time, the User Focused Monitoring project was developing
at the Sainsbury Centre for Mental Health under Diana Rose, and we saw
ourselves as sister projects, taking forward the ethos of survivor research and
user-led research.
Our approach followed in the footsteps of emancipatory research, as written
about in, for example, Barnes and Mercer (1997) and by Peter Beresford and Jan
Wallcraft (in Barnes & Mercer, 1997; and others). It felt exciting to be part of a
movement for change, as beautifully described by Viv Lindow:
Research has its part to play in developing solidarity among psychiatric system
survivors, and helping to raise the expectations of those who have been ‘educated’
to live with an unacceptable quality of life. Survival research can be a small
but key part in the move to seize freedom within an oppressive and excluding
society. (2001: 145)

What it means to me to work as a service user/survivor researcher is to try to
turn these experiences into new ways of working that endeavour to equalise the

Measuring the Marigolds

37

relationship between researcher and researched, to empower people to say ‘no’ if
they want to or to take more control over the research if they want to. I have
worked with many people over the years since the start of the Mental Health
Foundation’s Strategies for Living programme and I have continually been amazed
by people’s capacity to change and grow in the carrying out of research. It is not
just about developing skills that research offers us as service users; it is the opportunity it gives us to reflect and to think about our personal experiences alongside
the experiences of other people. I do believe that it has the potential to empower
people, in that it gives us the opportunity to, as it were, reverse the ‘research gaze’
and to use research for our own purposes. I am fortunate in that I achieved a
professional life through doing research alongside using mental health services.
Sometimes I feel as if I fall between two stools − being too ‘professional’ to be a
‘real’ service user and insufficiently ‘academic’ to be a ‘real’ researcher − but often
feel that I am both things and that it is good.
The Strategies for Living research findings (Faulkner & Layzell, 2000), by their
very ordinariness, somehow became groundbreaking. It seemed that people with
mental health problems were human beings like everyone else. People valued
relationships with other people in their lives, whether they were mental health
professionals, friends or family, and often they were fellow travellers on the
mental health journey, such as people encountered in day centres and self-help
groups, wards and user groups. Other strategies identifie