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Thesis Submitted in Partial Fulfilment of the Requirements for the Degree of Doctor of Philosophy A thesis submitted in partial fulfilment of the requirements for the degree of Doctor of Philosophy Cameron, C. 2010. Does anybody like being disabled? A critical exploration of impairment, identity, media and everyday experience in a disabling society. PhD thesis. Queen Margaret University. Accessed from: http://etheses.qmu.ac.uk/258/ Repository Use Policy The full-text may be used and/or reproduced, and given to third parties for personal research or study, educational or not-for-profit purposes providing that: The full-text is not changed in any way A full bibliographic reference is made A hyperlink is given to the original metadata page in eResearch eResearch policies on access and re-use can be viewed on our Policies page: http://eresearch.qmu.ac.uk/policies.html http://etheses.qmu.ac.uk DOES ANYBODY LIKE BEING DISABLED? A CRITICAL EXPLORATION OF IMPAIRMENT, IDENTITY, MEDIA AND EVERYDAY EXPERIENCE IN A DISABLING SOCIETY COLIN CAMERON A thesis submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy QUEEN MARGARET UNIVERSITY 2010 Abstract I offer a critical exploration of tensions experienced by disabled people in the construction of positive identities in everyday contexts in which self-understanding is shaped both by social structural relations of inequality and unique individual experience. The empirical evidence I use to develop and support my thesis involves data I have generated using a variety of data collection tools, through a series of interviews, conversations and observations carried out with sixteen disabled people across Scotland and England. I argue that while certain barriers to participation in ordinary community life may be being removed, perceptions of impairment as something „wrong‟ with the bodies of disabled people remain embedded in dominant disability discourse. There is a structural purpose underlying the continued representation of impairment as misfortune, involving the ascription of a negative role – the disabled role – to those whose bodily configurations pose a challenge to requirements of conformity. Drawing on insights generated in my research, and building on an idea originally proposed by John Swain and Sally French in 2000, I have developed a clarified affirmative model of disability. This I intend as a tool to be used by people with impairments in making sense of the disabling social relations they encounter in everyday contexts, to be used alongside the social model in gaining knowledge to unsettle mainstream assumptions which can only recognise impairment as personal tragedy. Keywords: Disability, Impairment, Social Model, Affirmative Model, Identity, Media, Everyday Life ii Acknowledgements I want to take this opportunity to thank the sixteen disabled people who gave up their time and let me into their confidence in order to carry out my PhD research. Unless people asked me to use their real names, names in this list are disguised. Each person knows who they are: Ali, Anne, Ash, Ben, Brian, Charles, Hazel, Helen, Jennie, Kevin, Lola, Mary, Rose, Roshni, Sarah, and Surinder. I would also like to thank my PhD supervisors in the School of Arts and Social Sciences at Queen Margaret University for their advice and supportive criticism: Dr Mark Gillham, Dr Richard Butt and John Hughes. Special thanks must be given to Eleanor Coner who gave me invaluable help in transcribing interviews. Finally I want to thank my wife Maggie, for her indefatigable patience and constant support. iii Contents Introduction p.1 Chapter 1: Disability, Self and Identity p.6 Chapter 2: What‟s the Use of Disability Identity? p.39 Chapter 3: Methodology p.50 Chapter 4: Subject Positioning p.79 Chapter 5: Disability as Role p. 116 Chapter 6: Media Representations p.159 Chapter 7: Disability in Everyday Life p.200 Conclusion p.254 References p.260 Appendix A: Introductory Letter Appendix B: Email Extracts Appendix C: Interview Guide Appendix D: Themes arising from the first series of interviews Published Material Cameron, C. (2007) „Breve storia del movimento delle persone disibili nel Regno Unito‟. Rivista Sperimentale di Freniatria. Vol. CXXXI N.2/2007 pp.83-99 Cameron, C. (2007) „Whose Problem? Disability narratives and available identities‟. Community Development Journal. Vol 42 No 4 October 2007 pp.501-511. Cameron, C. (2008) „Further towards an affirmation model‟. In Campbell, T. Fontes, F. Hemingway, L. Soorenian, A. and Till, C. (Eds.) Disability Studies: Emerging Insights and Perspectives. Leeds: The Disability Press Cameron, C. (2009) „Tragic but brave or just crips with chips? Songs and their lyrics in the Disability Arts Movement in Britain‟. Popular Music. Vol. 28/3. Pp. 381-396 iv Introduction I offer here a critical exploration of tensions experienced by disabled people in the construction of positive identities in everyday contexts in which self-understanding is shaped both by social structural relations of inequality and unique individual experience. Following Pierre Bourdieu (1990) I contend that everyday life is constrained by social structures and is at the same time an active process of production which transforms social structures. Regarding identity as a project to be worked at rather than as a fixed characteristic, and borrowing from Margaret Archer, I would suggest that explaining what disabled people do involves reference to their „subjective and reflective formulation of personal projects – in the light of their objective circumstances‟ (Archer, 2003:5). As John Swain and I have argued, for example, in „coming out‟ and claiming identity as disabled, people with impairments not only subvert dominant disability discourses but „change the very meaning of disability‟ (Swain and Cameron, 1999:77). My purpose as a disabled researcher is to do more, however, than just develop critical awareness around these matters. Drawing on the insights of the sixteen disabled people I have interviewed in my research, and building on an idea originally proposed by John Swain and Sally French in 2000, I have developed a clarified affirmative model of disability. This I intend as a tool to be used by people with impairments in making sense of the disabling social relations they encounter in everyday life contexts; to be used among other tools in gaining knowledge to unsettle and challenge mainstream assumptions which can only recognise impairment as personal tragedy. I regard this as part of a wider political and cultural struggle through which people with impairments are increasingly able to come to understand and name disability as oppression and to rename themselves as people who have a right to respect on their own terms. In order to explain my meaning by the term „tensions‟ I draw on a statement made by Donna Reeve: Someone may be disabled by a flight of steps or by being given information in an inaccessible format – these are examples of the structural dimensions of disability which restrict activity. On the other hand, psycho-emotional dimensions of disability would include being stared at or patronised by strangers, actions which can leave disabled people feeling worthless and ashamed, and may end up preventing them from participating in society as effectively as physically inaccessible environments (Reeve, 2006:96). 1 When I speak of tensions I mean something like the almost constant underlying state of uncertainty experienced by many disabled people in relation to how they are being perceived and received by others around them; something like the easily-awakened awareness of the likelihood that they are being watched and found wanting, or seen as deficient, incompetent and unfortunate. Tensions are experienced by disabled people in the knowledge that other people avoid contact with them because they are disabled, as if somehow their impairment was contagious or as if being seen with them would be a cause of embarrassment. They are experienced in the discomfort that being pitied or spoken down to can arouse, a sensation that can be experienced anytime any place, in the company of family members or others barely known. They can be experienced in terms of being unsure about whether to be forthright about access requirements or whether to keep silent and pretend there is nothing wrong for fear of being considered a nuisance. Tensions are involved in disabled people‟s uncertainty about whether to be assertive in owning their own needs and opinions or whether just to shut up and put up with second-rate treatment for fear of upsetting people or being regarded as needy and demanding. Tensions are there when complete strangers tell disabled people that they are an inspiration just for getting on with things everybody else does all the time; and in situations where they know they are being watched as if they are freak show exhibits. Tensions can involve a more or less constant sense of guardedness or wariness about how to respond within interactions, leading perhaps either to compliance with the expectations and wishes of others or to the development of a hardened public face which presents an indifference to the way one is treated. All of these can have a profound impact on the ways disabled people feel about themselves. Tensions are experienced when encountering what Cal Montgomery has described as: those little acts of degradation to which others subject us... those little reminders that we need to know our place in the world (Montgomery, 2006:unpaged). As Montgomery comments: Every few hours I run up against people who feel free to remind me that I‟m their inferior and that I should conform to whatever they‟ve decided „people like [me]‟ are supposed to be like (Montgomery, 2006: unpaged). The empirical evidence I use to develop and support my thesis involves data I have generated using a variety of data collection tools, through a series of interviews, conversations and observations carried out with sixteen disabled people from Fraserburgh to Brighton, with Perthshire, Glasgow, Edinburgh, Bonnyrigg, Whitley Bay, Liverpool, 2 Coventry, Northampton and London in-between.
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