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What Counts in Health Research? Who's Counted in Health Research? Making Research Count
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Silent Measures: Disability in the Canadian Biotechnology Strategy Catherine Frazee, former Chief Commissioner of the Ontario Human Rights Commission (1989–1992), Instructor, Disability Studies Program, Ryerson University, and Research Associate, Roeher Institute
A version of this paper was first presented at The Canadian Biotechnology Strategy: Assessing Its Effects on Women and Health – a National Strategic Workshop held at York University in February 2000. The workshop proceedings, The Gender of Genetic Futures, appear in the Working Paper Series of the National Network on Environments and Women’s Health. The internet site for the Canadian Biotechnology Strategy (CBS) welcomes me with the Canadian flag, the Industry Canada banner and the greeting, "The Information Site That Means Business!"[1] This is not a site for casual browsers. But I do have business here—I am a stakeholder. And I have come seeking purchase. I am a disabled woman. Reading through the web pages, I feel something slipping away, something integral. I scour the site—the press releases, fact sheets, background papers, consultation documents and committee reports. My browser’s "Find" command storms through each document in pursuit of a single fugitive word. But "disability" appears nowhere. It is alluded to, in phrases like "recognizable problems attributed to chromosomal, monogenic or multifactorial mutations" or "genetic deficiency."[2] It is implied, surely, in the promise that "Genetic testing will provide a number of diagnostic benefits such as the potential for...helping potential parents make informed decisions."[3] But the shadowy foe never quite declares itself. The Strategy promises "to enhance the quality of life of Canadians in terms of health, safety, the environment, and social and economic development."[4] But what does this mean? To answer I will investigate four phrases from CBS documents. Each states a noble purpose, yet there is an equivocal quality to each when viewed through a disability lens. "Biotechnology as a Key Contributor
to Quality Implicit in the identification of "genetic disease" (e.g., as applied to conditions such as Down syndrome, Spina Bifida and Muscular Dystrophy) is the assertion that disability is a negative characteristic—"a priori an undesirable trait."[6] I would be the first to concur that disability—like gender and race—correlates strongly with disadvantage. But while it is widely recognized that the disadvantage experienced by women and racial minorities is directly attributable to the social and systemic evils of sexism and racism, the nondisabled majority seems to stumble again and again in applying a similar analysis to the human rights claims of persons with disabilities. Instead, majoritarian thinking uncritically situates disability disadvantage as intrinsic to individual impairment or nonconformance to physiological and intellectual norms. Biotechnology’s vigorous focus on disability prevention by genetic methods ignores the deeply embedded and pervasive social, economic and political determinants of disability disadvantage. Disability activists and theorists have emphatically asserted that disability is located in social and economic structures, and that it correlates most strongly with access to money, supportive personal relationships and control over living conditions. How can we "popularize" this inherently unpopular notion? Of course I cannot deny that living with a non-typical body can and often does add to life a significant dimension of pain, loss and restriction. But as I have argued at length in other forums, the same can surely be said of other states generally accepted as socially desirable—for example, growing up, entry into intimate relationships and parenting. The point is, as Adrienne Asch noted in her recent debate with Princeton ethicist Peter Singer, "disability is only one characteristic of any person’s life. Along with disability— whatever that disability happens to be—come a whole range of other characteristics…and redeeming benefits…both intrinsic and extrinsic."[7] Disability per se cannot be presumed to diminish quality of life. Unless, of course, we are talking about the quality of life (read privilege) enjoyed by non-disabled Canadian citizens. Perhaps encoded in the phrase "quality of life" are forecasts about our national standard of living, and embedded in these, concern for allocation issues arising from escalating costs in health care and health support. This may well be so, but if it is, it must be made explicit. How else can those of us with genetically non-typical bodies find solid footing from which to enter into allocation negotiations? "Helping Potential Parents
Make Informed Decisions" [8] Most women over 35 elect to have prenatal diagnosis, and if they are told that their infant will have a "major defect" most of them decide to abort. As Peter Singer explains tersely, "If, before life has begun, the prospects are clouded, better to consider starting again."[9] But what criteria or standards define an "informed decision"? For those of us with "undesirable" genetic characteristics that could have been detected before birth, the implications of such informed decision-making are genocidal. The genetic structure of the fetus is such a small piece of the story of who we are and who we will become. The gifts and contributions of personhood will forever elude the predictive capacity of biotechnology. It is Singer’s argument that some information is better than no information when decisions must be made in conditions of uncertainty. But surely a shred of information—nothing more than a dim flicker, enough only to render the purity of darkness into a labyrinth of shadowy distortions—surely this does not transform a leap of faith into an informed decision. As Natalie Angier asks, "Does that power [over the outcomes of reproduction] give us greater freedom, or does it deprive us of one of life’s most unsung freedoms: the freedom to have things happen on their own?"[10] "Reflecting Canadian Values"[11] The values and aesthetic preferences that prevail in our society will determine biotechnology’s agenda and presumptions. They will influence not only how questions are answered; more than this, they are the breath with which every question does or does not find utterance. One of the questions I am asking is how can we reinvent the Ideal Citizen as one with the capacity to form deep relationship, to give or experience joy, to create, to open new pathways for expression of personhood? "Biotechnology for Public Health Advantage"[14] School-aged children who are shown pictures of a wide range of "potential friends" and asked to pick the ones with whom they would be most likely to become friends, choose children who look like themselves and reject children who look different. Obese children, children with disabilities, children of different racial groups are eliminated quickly, for reasons the children making the selection find difficult to articulate. Regrettably, adult architects and engineers of public policy commonly demonstrate the same aesthetic preferences in definitions of health, similarly unconscious and silent. The tyranny of designer culture accounts for much of my unease with the CBS and its squeamish reluctance to taint the pretty vistas of our genetically rich future with the nasty business of disability. For the full paper, Obscuring Disability (edited by Fiona
Miller, Lorna Weir, Roxanne Mykitiuk, Patricia Lee, Sue
Shewin) see "The Gender of Genetic Futures" at
www.yorku.ca/nnewh NOTES |
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