Madness, distress and the politics of disablement

368 Pages·2015·1.259 MB·English

by  Helen Spandler, Jill Anderson and Bob Sapey (eds.)

Madness, distress
and the politics of
disablement
Edited by
Helen Spandler
Jill Anderson
Bob Sapey
MADNESS, DISTRESS AND THE
POLITICS OF DISABLEMENT
Edited by
Helen Spandler, Jill Anderson
and Bob Sapey
First published in Great Britain in 2015 by

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ISBN 978 1 44731 458 5 paperback
ISBN 978 1 44731 457 8 hardcover
The right of Helen Spandler, Jill Anderson and Bob Sapey to be identified as editors of this
work has been asserted by them in accordance with the Copyright, Designs and Patents Act
1988.
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Front cover image kindly supplied by Jill Anderson
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Contents
About the authors v
Foreword by Jenny Morris xiii
Introduction 1
Bob Sapey, Helen Spandler and Jill Anderson
Part One: Disjunctures between disability and madness
one Unreasonable adjustments? Applying disability policy to 13
madness and distress
Helen Spandler and Jill Anderson
two What we talk about when we talk about disability: making sense 27
of debates in the European user/survivor movement
Jasna Russo and Debra Shulkes
three Inconvenient complications: on the heterogeneities of 43
madness and their relationship to disability
Nev Jones and Timothy Kelly
four Unsettling impairment: mental health and the social model of 57
disability
William J Penson
Part Two: Theorising distress and disablement
five Towards a socially situated model of mental distress 69
Jerry Tew
six The Capabilities Approach and the social model of mental health 83
Jan Wallcraft and Kim Hopper
seven Psycho-emotional disablism in the lives of people experiencing 99
mental distress
Donna Reeve
Part Three: Applying social models of disability
eight Psycho-emotional disablism, complex trauma and women’s 115
mental distress
Shelley Briggs and Fiona Cameron
nine Linking ‘race’, mental health and a social model of disability: 127
what are the possibilities?
Frank Keating
ten Social models of disability and sexual distress 139
Meg John Barker and Alex Iantaffi
iii
Madness, distress and the politics of disablement
eleven The social model of disability and suicide prevention 153
Helen Spandler interviews David Webb
Part Four: Universalising disability policy
twelve Advancing the rights of users and survivors of psychiatry using 171
the UN Convention on the Rights of Persons with Disabilities
An interview with Tina Minkowitz
thirteen UN Convention on the Rights of Persons with Disabilities: out of 183
the frying pan into the fire? Mental health service users and
survivors aligning with the disability movement
Anne Plumb
fourteen The global politics of disablement: assuming impairment and 199
erasing complexity
China Mills
fifteen Disabilities, colonisation and globalisation: how the very 215
possibility of a disability identity was compromised for the
‘insane’ in India
Bhargavi V Davar
Part Five: Meeting places
sixteen Neurodiversity: bridging the gap between the disabled people’s 231
movement and the mental health system survivors’ movement?
Steve Graby
seventeen Distress and disability: not you, not me, but us? 245
Peter Beresford
eighteen ‘It’s complicated’: blending disability and mad studies in the 261
corporatising university
Kathryn Church
nineteen Solidarity across difference: organising for democratic alliances 271
Mick McKeown and Helen Spandler
twenty Beyond the horizon: the landscape of madness, distress and 287
disability
Jill Anderson, Helen Spandler and Bob Sapey
References 293
Index 333
iv
About the authors
Editors
Helen Spandler works as a reader in mental health in the School
of Social Work at the University of Central Lancashire, UK. She
has written extensively in the area of madness/distress including the
books Asylum to Action (2006) and Beyond Fear and Control (co-edited
2007). She is also on the editorial collective of Asylum: The Magazine
for Democratic Psychiatry (www.asylumonline.net).
Jill Anderson coordinates the national Mental Health in Higher
Education project (MHHE), which aims to enhance networking
and the sharing of approaches to learning and teaching about mental
health. She has worked as a mental health social worker, has taught on
qualifying and post-qualifying social work programmes and facilitates
a national network (DUCIE) for service user and carer involvement
workers based in UK universities. Jill is currently enrolled on the
Doctoral Programme in Educational Research at Lancaster University.
Bob Sapey is a retired university lecturer who has written many papers
on community care policy and practice, the role of technology in social
care and more recently has challenged coercive social work practice
with voice hearers. He is co-author of Social Work with Disabled People
(1999, 2006 and 2012).
Contributors
Meg John Barker is a writer, academic, psychotherapist and activist
specialising in sex and relationships. Meg John is a senior lecturer in
psychology at the Open University and has published many academic
books and papers on topics including open non-monogamies,
sadomasochism, counselling and mindfulness, as well as co-editing
the journal Psychology and Sexuality. They were the lead author of The
Bisexuality Report and run many public events including Sense about
Sex, Critical Sexology, and Gender and Sexuality Talks. Meg John is
the author of the book and blog Rewriting the Rules www.rewriting-
the-rules.com. Twitter: @megbarkerpsych.
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Madness, distress and the politics of disablement
Peter Beresford OBE is professor of social policy at Brunel University
London. He is a long-term user of mental health services and co-chair
of Shaping Our Lives, the independent service users’ and disabled
people’s organisation and network. He has a longstanding involvement
in issues of participation as an activist, educator, researcher and writer.
He is author of A Straight Talking Guide to Being a Mental Health Service
User, PCCS Books.
Shelley Briggs has a long history of working with trauma. Originally
from Canada, she supported survivors of sexual abuse in the Scottish
Highlands before completing her MSW in Dundee, and then worked
with perpetrators and victims of sexual abuse in community and prison
settings. Shelley went back to Canada and worked in mental health
services in remote and northern communities for a few years and then
returned to the UK to lecture in social work and social policy at the
University of Central Lancashire, where she continues to be interested
working with survivors, as well as looking at alternative practice with
greater links to communities.
Fiona Cameron has worked in community mental health setting
in the North West of England for a number of years. After training
as an approved social worker (ASW) she was project manager of
The Sanctuary, a residential crisis service run by Turning Point as
an alternative to hospital admission. She has also worked as a mental
health trainer with Richmond Fellowship; co-ordinator of an ASW
training programme at Liverpool John Moores University; and a social
worker at Guild Lodge, Forensic Unit working primarily with women.
Fiona then worked for the Disability Advisory Unit at University of
Central Lancashire where she is now a senior lecturer in the School
of Social Work.
Kathryn Church is associate professor and director for the School
of Disability Studies at Ryerson University in Toronto. For the past
decade, she has been part of key initiatives that have brought the
School’s ‘vision, passion, action’ message to life across the university
and in the public eye. As a researcher, Kathryn has been allied with
the mad movement for 25 years. Author of Forbidden Narratives: Critical
Autobiography as Social Science (1995) and co-editor of Learning through
Community (2008) she wrote a dozen documents for psychiatric
survivor-led organizations doing local economic development. She is
an award-winning curator of arts-informed research and a dedicated
instructor.
vi
About the authors
Bhargavi V Davar completed her doctoral research into the ethical
and epistemological foundations of the mental and behavioural sciences
in 1995. She is involved in the women’s movement and is author of
Mental Health of Indian Women (Sage 1999), editor of Mental Health from
a Gender Perspective (Sage 2001) and co-author with Sundari Ravindran
of Gendering Mental Health: Knowledges, Identities and Institutions (Oxford
UP, forthcoming). She writes on the place of indigenous mental healing
within public discourse, and on the colonial histories of psychology and
psychiatry. She established the Bapu Trust for research on Mind and
Discourse in 1999, a research and service provider devoted to social
science, cultural and historical research on mental health practices and
policies in India. Bhargavi Davar is a survivor of psychiatry, and is a
trained arts-based therapist who works with people in crisis, particularly
young people. She is global advisor to Human Rights Watch, a working
group member of the UNESCAP on Incheon Strategy, Decade of
persons with disabilities 2013-22.
Steve Graby is an autistic adult who was diagnosed at the age of
22, while in the final year of a politics degree. Coincidentally, he
discovered the social model of disability around the same time, which
led to involvement with the disabled people’s movement, including the
Disabled People’s Direct Action Network and, more recently, Greater
Manchester Coalition of Disabled People. He is now, after having been
lucky enough to secure funding, working towards a PhD in disability
studies at the University of Leeds, while hoping to find ways to fit
some activism around the time constraints of this.
Kim Hopper is a medical anthropologist who works as a research
scientist at the Nathan S Kline Institute for Psychiatric Research (USA),
where he co-directs the Center for the Study of Recovery in Social
Contexts. He also teaches at Columbia University’s School of Public
Health and Law and consults at the University of Alaska-Fairbanks.
Since 1979, he has undertaken ethnographic and historical research
on psychiatric care and homelessness, chiefly in New York City. For
the last several years, he has co-directed a field school to teach research
methods to persons with extensive mental health histories
Alex Iantaffi is a systemic psychotherapist, licensed marriage and
family therapist, public health researcher and community activist. He is
an assistant professor at the Program in Human Sexuality, University of
Minnesota (USA) and is the editor-in-chief for Sexual and Relationship
Therapy. Alex has researched and published on various aspects of gender,
vii
Madness, distress and the politics of disablement
disability, and sexuality for the past two decades. His clinical work is
focused on issues of human sexuality and gender identity across the
lifespan. Twitter: @xtaffi
Nev Jones is a critical community psychologist and postdoctoral
fellow in psychiatric anthropology at Stanford University (USA) with
a background in continental philosophy. Her current research focuses
on the phenomenology and sociopolitical context(s) of psychosis, early
intervention in community-based settings, and identity development.
Frank Keating is a senior lecturer in health and social care in the
Department of Social Work at Royal Holloway University of London
(UK). His main research interests are ethnicity, gender and mental
health, particularly focusing on African and Caribbean communities.
He continues to advocate for racial equality in mental health services
through his writing, teaching and public speaking.
Timothy Kelly is a PhD student in the Department of Rehabilitation
and Counsellor Education with a minor focus in anthropology at the
University of Iowa (USA). He is interested in transdisciplinary work
focused on experiences often falling under the description of psychosis,
attending to both sociocultural structure and lived experience, and
bridging the gap between theoretical and applied work in community
mental health and public advocacy.
Mick McKeown is reader in democratic mental health in the
School of Health at University of Central Lancashire (UK). Mick has
a strong commitment to equalities and critical perspectives in service
provision and has been active at a professional and practical level
around such issues as advocacy, service user and carer involvement
and the complexities of addressing civil liberties within the constraints
of secure units and wider mental health services. He has published
widely and co-ordinated the production of the collectively written
text: Service User and Carer Involvement in Education for Health and Social
Care (Wiley-Blackwell). Mick has been a UNISON activist for all of
his working life.
China Mills is a lecturer in critical educational psychology at the
University of Sheffield’s School of Education. She is the author of
the book Decolonizing Global Mental Health: The Psychiatrization of the
Majority World (Routledge 2014). China’s research interests lie in the
intersections and interconnections between psychiatry, colonialism,
viii
About the authors
and the pharmaceutical industry. She is currently critically engaged
in exploring how the psy-disciplines intervene into poverty at
both national and international levels – or what might be called the
psychiatrisation of poverty. China has previously worked alongside
the hearing voices movement in the UK, and with non-governmental
organisations doing mental health work in India.
Tina Minkowitz represented the World Network of Users and
Survivors of Psychiatry in the drafting and negotiation of the United
Nations Convention on the Rights of Persons with Disabilities
(CRPD). She served on the steering committee of the International
Disability Caucus and was a member of the 40-person drafting group
that created the official text of the treaty for negotiation. She is credited
with much of the paradigm-shifting character of the CRPD in the
areas of legal capacity, liberty and respect for integrity of the person.
Ms Minkowitz is an attorney admitted in the state of New York. She
is a survivor of psychiatry and believes in the development of authentic
user/survivor perspectives in human rights.
William J Penson is a disabled PhD research student at the University
of Central Lancashire, an associate lecturer at Sheffield Hallam
University, a part-time lecturer at the University of Bradford and a
part-time trainer with Community Links, a mental health charity in
Leeds (UK). In addition, he worked in mental health practice for 12
years before working as a senior lecturer and teacher fellow at Leeds
Metropolitan University for nine years. His current research interests
include postcolonial perspectives in mental health and disability
discourse.
Anne Plumb identifies as a mental health system survivor. She has been
a member of the former Survivors Speak Out in the UK, including two
years as treasurer, and of a small training collective, Distress Awareness
Training Agency (DATA). When domestic circumstances made such
involvements difficult she began to organise material she had at home
into two archives: one is that of grassroots disabled activist Ken Lumb,
her late partner; the other is of mental health survivors and their allies.
She is currently a member of a survivor history group. Anne can be
contacted at [email protected].
Donna Reeve is an honorary teaching fellow at the Centre for
Disability Research and the Division of Health Research at Lancaster
University. Her publications and research interests are related to
ix