Disability on Equal Terms

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Edited by: John Swain & Sally French

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  • Front Matter
  • Back Matter
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    Acknowledgements for Disability on Equal Terms

    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

  • Conclusion: Some Reflections on Key Questions

    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 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 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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