Disability on Equal Terms
Publication Year: 2008
Disability on Equal Terms presents an authoritative collection of writings that examine and challenge traditional notions of disability. Edited and written by leading experts in the field, the book offers a multidisciplinary approach to disability studies, incorporating perspectives from a wide range of health and social care services, as well as a distinct and unique emphasis on the personal testimonies of disabled people themselves.
- Front Matter
- Back Matter
- Subject Index
- Section I: The Tragedy View of Impairment and Disability
- Chapter 1: There but for Fortune
- Chapter 2: Disability, Genetics and Eugenics
- Chapter 3: Disabled in Images and Language
- Chapter 4: Institutional Abuse
- Chapter 5: The Narratives of Disabled Survivors of Childhood Sexual Abuse
- Section II: From a Different Viewpoint
- Chapter 6: Affirming Identity
- Chapter 7: Choices, Rights and Cabaret: Disability Arts and Collective Identity
- Chapter 8: The Art of Affirming Identity
- Chapter 9: An Exploration of the Quality of Life of Adults with Haemophilia
- Chapter 10: Disabled People's Testimonies
- Section III: On Equal Terms
- Chapter 11: On Equal Terms
- Chapter 12: In Practice from the Viewpoint of an Occupational Therapist
- Chapter 13: In Practice from the Viewpoint of a Physiotherapist
- Chapter 14: Communication Disability: Exploring New Personal and Professional Narratives
- Chapter 15: In Practice from the Viewpoint of a Disabled Nurse
- Chapter 16: In Practice from the Viewpoint of a Social Worker
- Chapter 17: In Practice from the Viewpoint of Disabled People
Editorial Arrangement © John Swain and Sally French, 2008
Chapter 2 © Tom Shakespeare, 2008
Chapter 3 © Margaret Taylor, 2008
Chapter 4 © Colin Goble, 2008
Chapter 5 © Martina Higgins, 2008
Chapter 7 © Alan Sutherland, 2008
Chapter 8 © Toby Brandon and Alice Elliot, 2008
Chapter 9 © Karen Beeton, 2008
Chapter 12 © Elaine Ballantyne and Andrew Muir, 2008
Chapter 13 © Anna-Stina, 2008
Chapter 14 © Carole Pound, 2008
Chapter 15 © Rae Spain, 2008
Chapter 16 © Maureen Gillman, 2008
Chapter 17 © Clare Evans, 2008
First published 2008
Apart from any fair dealing for the purposes of research or private study, or criticism or review, as permitted under the Copyright, Designs and Patents Act, 1988, this publication may be reproduced, stored or transmitted in any form, or by any means, only with the prior permission in writing of the publishers, or in the case of reprographic reproduction, in accordance with the terms of licences issued by the Copyright Licensing Agency. Enquiries concerning reproduction outside those terms should be sent to the publishers.
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Acknowledgements for Disability on Equal Terms[Page vii]
Every effort has been made to trace all the copyright holders, but if any have been inadvertently overlooked the publishers will be pleased to make the necessary arrangement at the first opportunity.
Grateful acknowledgement is made to the following sources for permission to reproduce material in this book.
Macfarlane, A. (1994) Watershed, in Keith, L. (ed.) Mustn't Crumble: writing by disabled women. London: The Women's Press. Reproduced with kind permission of the author
Cameron, C. (1998) “Sub Rosa” in Sub Rosa: Clandestine Voices. Tyneside Disability Arts, Wallsend. Reproduced with kind permission of the author
Sinclair, G. (1999) “Coming Out” in Transgressions. Tyneside Disability Rats, Wallsend. Reproduced with kind permission of the author
Higgins, M., and I. Stanton. “Tragic but Brave” http://www.johnnypops.demon.co.uk/poetry/songs/incurables.html
Brisenden, S. (undated) “Scars”, from Poems for Perfect People. Self-published. http://www.leeds.ac.uk/disability-studies/archiveuk/brisenden/Poems.pdf
Brandon, D. (1990) “Brockhall Hospital” from Strange Places: experiences in mental handicap hospital. Salford: University College Salford. Reproduced with permission of the author's estate
Brandon, D. (1981) “The Barrier” from Voices of experience consumer perspectives of psychiatric treatment. MIND. Reproduced with permission of the author's estate
Ireland, C. (undated) “Creative Window Truthteller” From the collection Epochs and Elispe and Epics, not yet published. Reproduced with kind permission of the author[Page viii]
Conclusion: Some Reflections on Key Questions[Page 184]
In planning, compiling and editing this book we set out to explore and examine disability issues from a particular position: an affirmative, non-tragic model of disability and impairment. In doing so, however, we wished to document the complexities as well as the multifaceted and challenging nature of such a position. Drawing conclusions is a difficult task without diminishing the discussions and analyses presented in these chapters. Crucial has been the questioning of presumptions about the meaning of disability and impairment in peoples' lives.
To assist you as a reader of the text we provided Key Questions to Address in the introductory chapters to each section. It is not the purpose of this concluding chapter to attempt to provide ‘the’ answers to the questions we set. The purpose of the exercises has been to promote critical thinking and discussion. We hope that, like us, you found the ideas simulating, thought-provoking and challenging, at times reaffirming and at times contradicting your own thinking.
The chapters in Section I delved into manifestations and expressions of the tragedy model of disability and impairment. This is founded in beliefs that equate disabled people with suffering, abnormality, dependency, lack and loss, and the impossibility of valuing the self and leading valued lifestyles. Disabled people can find themselves ‘prisoners of the misconceptions of others’ (Gray and Hahn, 1997: 395), though, as is clear in the chapters in Section II, prisoners capable of resilience and resistance. The tragedy model, however, goes well beyond negative attitudes, beliefs or ways of thinking into inhumanity and personal and institutionalised abuse, as is graphically documented in Section I.
Perhaps the most difficult questions to address relate to why this is the dominant understanding of disability. Why the continuing inhuman treatment of disabled people? Is inhumanity built into our very nature as human beings? Section I invited you [Page 185]to explore the roots of the oppression of people with impairments, beliefs that are created and constructed within and by society.
Section II invited you to reflect on a affirmative, non-tragedy view of disability and impairment. We hope you found the Key Questions to Address complex, challenging and, as with the tragedy model, deeply rooted in what we are as human beings, individually and collectively. It is perhaps easier to say what an affirmative model is not about. First, it is not about all people with impairments celebrating difference. It is not about disabled people ‘coming to terms with’ disability and impairment. It is also not about disabled people being ‘can do’ or ‘lovely’ people. Finally, it is certainly not about the benefits of living and being marginalized and segregated within a disablist society.
As demonstrated in these chapters, affirmation is about being different and thinking differently about being different. The affirmative model is about disabled people challenging presumptions about themselves and their lives in terms of not only how they differ from what is average or normal, but also about the assertion, on disabled people's terms, of human embodiment, lifestyles, quality of life and identity. As the chapters in this section illustrate this is expressed both individually and collectively. Impairment is a part of human diversity, a phenomenon integral to the human condition, and reveals a significant understanding of humanity. There is also an affirmation of unique ways of being situated in society. As stated above, this is not an affirmation of disablement and there is a danger that it could be misinterpreted as ‘a good life’ in the face of oppression or segregation. However, disabled people can and do affirm ways of being and living that embrace difference. Take, for instance, parenting. A disabled father stated: ‘I'm happy just to let them do things at their own pace, however slow that may be. It suits children to move slowly because it's more their pace’ (Wates, 1997: 49). Wates takes this into the collective: ‘disabled parents are able to offer their children and their children's friends something unique; the opportunity to learn about the meaning of disability in the context of close human relationships, rather than through the mesh of society's ignorance and prejudice’ (1997: 46). ‘Nothing about us without us’ has been a key slogan of the disabled people's movement. By implication, the analyses within the chapters in this section augment this demand: ‘on our terms’.
The chapters in Section III turned to possible implications of alternative ways of thinking within professional policy, provision of services and practice. The central proposition of this book can be stated as follows:
Once an affirmative model of disability is accepted the goals of striving for physical independence and ‘normality’ become far less tenable. If disability is viewed as ‘out there’ in the environment and if disabled people are comfortable with themselves as they are, where does that leave providers of health and social care?
As is apparent in the Key Questions to Address, there are numerous issues. There are no clearly defined formulas for change here. There is no comfortable remit. The [Page 186]affirmative model itself does not provide a different set of presumptions to replace those that characterize individual models, particularly the tragedy model. It is as ludicrous to presume that a disabled person is comfortable with him/herself as he/she is as to presume that his/her life is devastated by impairment. Equally, implications of the affirmative model challenge traditional approaches to health and social care, prioritizing cure or care, and the worst manifestations can be conceived of and experienced as abuse – ‘care’ as abuse. Yet this does not negate the potential usefulness to disabled people of the skills of service providers or the need for support.
For us the realization of ‘disability on equal terms’ lies in principles that are underpinned by an affirmative model. We would tentatively suggest the following.
- confronting personal and institutionalized presumptions about the meaning of impairment and disability and about the lives and aspirations of disabled people;
- moving away from a client-based approach in service provision towards a citizen-based model where service users are fully involved in the formulation and running of services themselves at all stages, including the production of knowledge about what disability is and what services, if any, are required;
- questioning professional agendas for change coming under such ‘new initiatives’ as multi-professional practice, empowerment and partnership, particularly in terms of the views and experiences of those on the receiving end – service users;
- understanding and valuing difference in health and social care that is truly inclusive for all: working towards full participative citizenship irrespective of age, gender, ethnicity, sexuality – and disability and impairment.
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