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Distress Or Disability? Proceedings of a Symposium Held at Lancaster University, 15-16 November 2011

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Distress Or Disability? Proceedings of a Symposium Held at Lancaster University, 15-16 November 2011 Distress or Disability? Proceedings of a symposium held at Lancaster University, 15-16 November 2011 Published by Centre for Disability Research, Bowland North, Lancaster University, LA1 4YN, UK Symposium run in conjunction with: School of Social Work, University of Central Lancashire; and Mental Health in Higher Education. Editors: Jill Anderson, Bob Sapey and Helen Spandler Published 2012 ISBN: 978-1-86220-293-1 i Contents Introduction Jill Anderson, Bob Sapey and Helen Spandler 1 part one ...distress or disability? Anne Plumb (1994) 3 (Reprinted with permission of the Greater Manchester Coalition of Disabled People) part two Symposium Papers Setting the scene Helen Spandler 14 Incorporation, or not, of MH survivors into the disability movement Anne Plumb 18 Psycho-emotional disablism in the lives of people experiencing mental distress Donna Reeve 24 Disability and distress: towards understanding the vulnerable body-subject Floris Tomasini 30 Recovery as a process of decolonisation? History, politics and experience Brigit Morris Colton 33 Sorting trucks and going forth: Service provider and service user discourses of recovery. Tony Sparkes 34 Three relapses in one year: My story of recovery with bipolar disorder Kirsty Stevenson-Turner and Debbie Mayes 39 Complex trauma: A composite case study exploring responses to complex trauma across a lifespan Shelly Briggs and Fiona Cameron 43 Which model of disability can include voice hearing experiences? Bob Sapey 49 Diagnosed victims, survivors or disabled women? Exploring pathology and the uses of self- identity at the intra- and inter-sections after disablist hate crime and rape Susie Balderston 52 Live and let die: Global mental health and critical disability studies China Mills 57 Is disability theory ready to engage with the politics of mental health? Dan Goodley 62 The social re-framing of forms of mental disorder David Pilgrim and Floris Tomasini 67 Alliances and communicative action: one possibility for reframing theory and praxis Mick McKeown 70 ii part three Responses to Symposium Trauma and the origins of distress and disability: complex causes, mobile meanings, and a new social model? Alan Beattie 72 Some thoughts towards seeking a new service paradigm in the community Judy Hunt 86 Anger and grief as dissident states in psychiatry and disability studies Bill Penson 89 A personal response Alison Young 90 References 91 iii Introduction Jill Anderson, Bob Sapey and Helen Spandler This symposium was organized jointly by Mental Health in Higher Education, the Centre for Disability Research at Lancaster University and the School of Social Work at the University of Central Lancashire. The symposium was by invitation only and brought together scholars (including academics, activists and research students) from the north-west of England to explore the issues that arise from trying to situate mental distress or ’madness’ within the social model of disability. We specifically focussed on psychosis, hearing voices and other extra-ordinary experiences as these raise particular issues and challenges. While there is a long history of thinking, activism and writing about the links between mental health and disability activism, difficulties remain in terms of how they can, and if they should, be brought together. Disability studies developed out of the disabled people’s movement, focusing on the relationship disabled people have with society. The social model of disability which has dominated UK disability studies has been primarily concerned with the disadvantages people face because of social responses to impairment. While stigma and disadvantage are also important issues in mental health, critical work in this field tended to focus on re-conceptualising the experience of madness or distress itself and its social causes. As a result, activism has usually focused upon the relationship people experiencing distress have with mental health services, professionals as well as the wider social systems in which they are located. To some extent this is in contrast to disability activism where disability and impairment issues are often distinguished in order to focus on the former. Further, many people experiencing mental distress would reject the label of ‘disabled’ as it is considered stigmatizing, whereas for disabled people this is a reclaimed term that offers a positive identity. In 1994 Anne Plumb wrote a discussion document for the Greater Manchester Coalition of Disabled People called Distress or Disability ? In this important paper which is reproduced in this e-Book, she argued for the autonomy of mental health system survivor activism and highlighted some of the difficulties of integrating mental distress within broader disability politics. We asked participants to build on her ideas and to develop some thinking on these issues. We also suggested participants read Peter Beresford, Mary Nettles and Rebecca Perring’s recently completed study funded by the Joseph Rowntree Foundation, Towards a social model of madness and distress? Exploring what service users say . Additionally we drew on the work of others in the north-west. Carol Thomas (Lancaster University) has made a significant contribution to the theorizing of disability through her proposition for an extended social-relational model of disability which incorporates impairment effects and the psycho- emotional effects of disability. We explored the possible implications of the idea of ‘psycho- emotional disablement’ in the context of mental health. In addition, Helen Spandler (Uclan) has challenged the social responses to psychosis which deny people the right to experience their distress and to receive support that they choose as appropriate to help them do so. The recent promotion of recovery, social inclusion and personalisation in mental health has been based, at least in part, on a social model of disability and related ideas from the independent living movement. If this is the case, then its applicability to madness/distress has profound implications for practice. As such, we hoped to consider the implications of these issues for mental health practice, education and activism. This e-Book consists of the papers presented at the symposium and some responses from other participants following the event. 1 part one ...distress or disability? A discussion document by Anne Plumb (February 1994) First published as an occasional paper by GMCDP Publications and reprinted with permission. 2 ...distress or disability? Anne Plumb The Medicalisation of Distress and Dissent ‘We support a definition of disability that encompasses people with a physical, sensory, intellectual, psychological, emotional or any other hidden impairment and, therefore, includes people with learning difficulties, system survivors, cancer and those with HIV/AIDs.’ (my italics). This support is given by the Southampton Centre for Independent Living in an advertisement for a job of DT Training Administrator/DET (Disability Equality Training) Trainer in 1993. I am one of the people this definition encompasses. I am a system survivor; I belong to an organisation called Survivors Speak Out (SSO). In our constitution ( 1) survivors are defined as ‘people who receive or have received 'mental health' services’. On the face of this, we would seem to have, or have had, something wrong with us medically (to be less than healthy?). However, this definition is more carefully worded than it might at first appear. To ‘receive a service’ does not necessarily mean that we agree with it, especially if this ‘service’ is inappropriate, unasked for, or damaging, and where treatment can be imposed without consent! (Some of us insist we are - or were – ‘service recipients’ or ‘service resisters’ (O'Hagan, 1991)). We may indeed be people who have been diagnosed - labelled - as ‘ill’ or ‘sick’. We have usually been ‘treated’ with powerful drugs (told sometimes that we will need these drug interventions - these ‘medications’ - for life) and other ‘therapies’ (like electro-convulsive therapy - or ‘electroshock’ as it is called in the U.S.). We are generally included in disability legislation as ‘mentally ill’ people (e.g. ‘Caring for People’ White Paper), or as ‘mentally disordered’. We are included, for example, in the Disabled Persons (Services, Consultation and Representation) Act 1986 as people ‘suffering from a mental disorder...’ (along with people who are blind, deaf or dumb, and other persons who are substantially and permanently handicapped by illness, injury or congenital deformity’ (MIND/RADAR, 1986). The language of the National Assistance Act 1948 is retained!). Elsewhere, we have become people ‘with long-term psychiatric disabilities’. We may receive Invalidity Benefit ( 2) and Disabled Living Allowance, be referred to Disablement Resettlement Officers when looking for work, and so on. That we have become ‘disabled’ through such legislation does not, however, settle the matter of definition, either for system survivors nor for disabled people. (It does settle, however, the debate for the Establishment - we are people with ‘disorders’). System survivors are included under the Southampton C.I.L. definition because we, apparently, have ‘hidden impairments’. I view this development with dismay. Far from furthering our struggles as ‘system survivors’, this definition reads to me as firmly placing us back into medical models of ‘mental illness’, ‘chemical imbalances’ and so on. Some of us have long been intent on challenging such concepts! (Plumb A.E. 1993). This is a sad irony
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