On a Bioethical Challenge to Disability Rights

Abstract

Tensions exist between the disability rights movement and the work of many bioethicists. These reveal themselves in a major recent book on bioethics and genetics, From Chance to Choice: Genetics and Justice. This book defends certain genetic policies against criticisms from disability rights advocates, in part by arguing that it is possible to accept both the genetic policies and the rights of people with impairments. However, a close reading of the book reveals a series of direct moral criticisms of the disability rights movement. The criticisms go beyond a defense of genetic policies from the criticisms of disability rights advocates. The disability rights movement is said not to have the same moral legitimacy as other civil rights movements, such as those for women or “racial” minorities. This paper documents, and in some cases shows the flaws within, these challenges to the disability rights movement.

Keywords:

• bioethics
• civil rights
• disability
• disability rights

Notes

1. Other early sources include the World Health Organization (1980) and Beatrice Wright (1983); see discussion in Amundson, 1992; Wendell, 1996; Wasserman, 2001.

2. The authors of FCC recognize this distinction, but (remarkably) document it by citing three of their own publications (p. 20). It is unclear whether they believe that it is their own innovation. Except for Wikler's early recognition that mental competence is determined in part by social environment (Wikler, 1979), the cited works are all after 1990—far too late to count as innovation.

3. Our expression “from impairments themselves” should be read as “from impairments together with their non-social contexts.” We mean to distinguish between socially-caused disadvantages and disadvantages that are not socially caused. See the discussion in note #4.

4. Both the impairment/disability distinction and our CDI/UDI distinction are pragmatic tools, meant to elucidate the issues of political debate. Their metaphysical status can be challenged. For example, some authors have argued that the impairment category itself is socially constructed: impairment should not be treated as an objective scientific category in the way the impairment/disability distinction may be taken to imply (Amundson, 2000; Tremain, 2001, 2002). In a different approach, Anita Silvers urges the creation of a “neutral conception of disability” that does not presuppose disadvantage. She claims that no impairment is disadvantageous in itself; disadvantages can only happen in environmental contexts (Silvers, 2003). The point is correct. Nevertheless, our concern is to distinguish social contexts, for which society can be deemed responsible, from, e.g., physical contexts (such as the law of gravity) for which society has no responsibility.

5. The expression ”disabled people” is currently disfavored in much of North America because “disability” is used as a biomedical category, equivalent to what we term “impairment.” Our version of the impairment/disability dichotomy, just introduced, follows the British usage. Disabled people are people who are disadvantaged by social barriers, not people who receive a particular biomedical diagnosis of disabled. The objectionable implications of disabled person do not apply.

6. We do not deny that racism and sexism exist in the academy, only that they are openly endorsed.

7. Claims for proportional medical attention to diseases that are disproportionately suffered by disadvantaged groups (sickle cell disease, breast cancer) are quite a different kind of argument from claims that those diseases must be cured as a condition for social justice. The latter claim has never been made, just as the DR claim for the cure of UDIs has never been made.

8. We have included in the References a few easily available sources prior to publication of FCC (Eisenberg, Griggins, & Duval, 1982; Oliver, 1990, 1996; Shapiro, 1993; Linton, 1998).

9. Perhaps they take this to follow from the slogan “change society not people.” As we have shown, this slogan is itself specious.

10. Eventually the authors do acknowledge that disabled peoples' interests in employment may outweigh the majority interests in segregating disabled people from the workforce in many cases (p. 301). However, the maximizing interest still hangs over the heads of disabled people. At any time, the scales of justice (of the relative importance of conflicting legitimate interests) might tip towards the nondisabled majority. No other civil rights group is forced to live with this threat.

11. This paper has greatly benefited from conversations with Adrienne Asch and Larry Heintz, and comments from Anita Silvers and two anonymous referees. RA's work was supported by a grant from the National Institutes of Health (No. S06-GM08073).