Global Challenges to Biomedical Definitions of Disability

vis-à-vis: Explorations in Anthropology, Vol. 9, No. 2, pp. 203-219. vav.library.utoronto.ca This article © 2009 Jill M. Le Clair. Licensed under Creative Commons Attribution-Noncommercial-Share Alike 2.5 Canada license. Sport and Health: Global Challenges to Biomedical Definitions of Disability JILL M. LE CLAIR ABSTRACT There is always a political context to definitions whether of the medical body or the disabled body. The meaning of disability has been challenged and redefined over the past sixty years as has the meaning of sport and disability while the battle for disability rights and inclusion strengthened. This paper describes research documenting the profound change in the organization of the Paralympic Games and IPC Swimming from being segregated and medi- cally and disability-based to sport-based classification for competition based on functioning in the water. Swimmers with diverse disabilities competed together and the four Canadian disability swimming teams were replaced by one swim team. At the same time the lives of swimmers transformed as they became identified as swimmers rather than as persons with disabilities. ichard B. Lee’s contributions to the field of anthropology in terms of his own research and his on-going initiatives to support fairness and equity are well-known, Rbut while preparing this paper I decided to conduct an internet search on Richard B. Lee to get a sense of his impact on the wider non-academic internet world. 671,000 hits came up. Even narrowing the search to Kung San reduced this number to 689 items – a clear indication of the impact of his life time of work in anthropology. Richard Lee himself also might find it amusing to see the that on the quintessential postmodern capitalist book purchase site, his book The Dobe Ju/’Hosani came up first, but the third listing wasGetting Rich in America: 8 Simple Rules for Building a Fortune and a Satisfying Life; fourth was Managing Through Incentives and after that Man the Hunter for only $22.74 and it ‘ships within 2 to 3 days”. Somehow the Yahoo offer on the Find page to help search for current information on Richard B. Lee for only $9.95 is patently redundant. JILL M LE CLAIR, Ph.D., is a professor in the School of Arts and Sciences, Humber College Institute in Toronto, Ontario, currently on a disability leave. vis-à-vis: Explorations in Anthropology • Volume 9, Number 2 May 2009 In the 2003 Anthropologica Special Edition Richard Lee Festschrift a number of writers outlined his many contributions. These included detailed fieldwork that challenged assumptions (Solway, 2003); innovative and sometimes controversial participation in theo- retical issues (Patterson, 2003); social justice and economic and social equality “All People are [Not] Good” (Trigger, 2003); political identities, marginalization in the context of his Jewish heritage (Brodkin, 2003); activism HIV/AIDS (Susser, 2003); collaboration and support for resource-poor communities and sustainability through funding (Biesele, 2003) and ongoing support for the research and activism of others. My own experience with him reflects these wide ranging contributions to anthropology and student learning. In his home Richard shared his detailed field notes with my student cohort and showed us his three carbon copy system from the pre-computer days, all carefully categorized. Not too long after I had a disabling car accident, we met in his small office on the University of Toronto campus and with his interest in the lives of marginalized groups he gently sug- gested I switch my research focus to disability. Initially I rejected his proposal outright, but shortly afterwards I became intrigued by the world of swimmers with a disability after attending the Paralympic Swim Trials in 1995 and saw competition that included diverse shaped bodies in the same event, something I had not seen before. He had recognized before I did, the intellectual challenges to assumptions about ‘normalcy’, the ‘normal’ body and the medical gaze encompassed in the world of the disabled. Later he offered his support on an advisory board to facilitate the formation of an international disability research network combining as is his practice, his intellectual interests, activism and concern for the implementation of policy and best practice, accompanied with a practical concern about funding. This initiative has now grown into the Global Disability Research in Sport and Health network that includes researchers from fourteen countries dominated by those from resource-poor countries and including his much loved Namibia. I have joined the long list of the many people who benefited and were influenced by Richard Lee’s suggestions and advice. Intersection of the Biomedical and Cultural/Political in the Classification of Athletes with Disabilities in International Sport With Professor Lee’s close attention to economic and class conditions it is necessary to point out that the majority of the disabled face discrimination, marginalization, lack of access to education, unemployment or underemployment, and poverty. This is the history of a group of athletes who received considerable support from their families, friends, the sport community and the nation, to undergo a journey of transformation that was possible for two main reasons - it was a particular time in history and their parents had the interest and the resources to support them in a way that most cannot. The political context of the ‘idealized’ medical body which although it was pres- ent in the ancient world found its modern day reincarnation in the world-wide eugenics movements of the early 20th century. There were initiatives in most countries to attempt to limit the birth of ‘damaged’ or ‘inferior’ babies and a conflation of physical & intellec- 204 205 Sport and Health • vis-à-vis: Explorations in Anthropology tual disabilities. Categories were arbitrary, eroticized, essentialized and racialized. These were deliberate political constructions of stigmatized, marginalized, ‘polluted’ bodies that a number have written about including Goffman (1986), Douglas (1994) and Oliver and Barnes (1998). The disabled body is often the lightening rod for fundamental questions about normalcy and societal inclusion. It is not well known, but the first program of extermination on the part of the Nazi party (and with the active support of the medical community) targeted German citizens with disabilities as there was moral and/or religious blaming for damaged bodies that continues in some elements today, with mothers being blamed for damaging unborn fetuses in the west and ancestral, family or ‘enemy’ behaviour blamed in other cultural contexts. After the war in Britain there was a moral and nationalist sense of obligation from the confrontation with the shattered bodies of veterans whether burned in planes or immobile from bullets, and this is the site for the beginnings of the Paralympic Games, the international games for athletes with disabilities. Their origins were in a medical context as they were created by a British neurosurgeon Ludwig Guttman at the Stoke Mandeville Hospital in England. The first games were held to provide sport opportunities for British wheelchair- using veterans with spinal cord injuries. They took place at the same time – parallel - to the Olympic Games that were being held in London in 1948. The context of the Games was medical rehabilitation, but Guttman had seen the despair and marginalization of those with spinal cord injuries and hoped that sport participation would provide a way out of depres- sion, providing rehabilitation, new hope and at the same time lead to social inclusion (Gutt- man, 1964). All sport has groupings based on age, gender or size (such as the lightweight, middleweight, heavyweight categories in boxing) and for disability sport the classes for competitions were based on a medical diagnosis i.e. disability-based classification. Western, liberal democracies began an overhaul of the basic premises of their gov- ernmental policies. In the past care for the sick and lame had been left to the individual family, church and charitable organization. The decision was made to better provide for those seen to need state support – and introduced a social welfare system in areas such as education, health and social services (Chrichton, 1998; Clarke, 2000). At the same time a paternalist, protective approach was taken towards caring for those seen as more vulner- able such as children and the disabled. A medicalized framework was used for those with disabilities with a focus on providing sheltered care and medical services. There was much debate about the nature of an inclusive society, and in post-World War II Europe and North America public policy changed its focus to provide public medical assistance for those to be seen in need. Table 1 outlines an historical review of social program legislation in Canada. Central to the debate about the nature of social welfare policies and those for the disabled is the dominant welfare discourse that constructs disabled people as dependent and therefore in need of care, despite the fact that bodies like the United Nations insist that disability is a matter of human rights (Oliver and Barnes, 1998: 37-46). Deborah Stone argues that 204 205 vis-à-vis: Explorations in Anthropology • Volume 9, Number 2 May 2009 “capitalist development is accompanied by a process of intensifying rationalizing and bu- reaucratization and that the constructions of disability play a key role in the development of social

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