History Precedes Ethics

As a historian and not a member of the bioethics inner sanctum, I see the question of disability policy in somewhat different institutional terms than does Mark Kuczewski (2001). Let me use this piece to spell out four differences—on the general theory that you have to find the room where the metaphysics exam is being given before you can look into the soul of the student sitting next to you (to twist Woody Allen's twist).

First, the Americans with Disabilities Act (ADA), passed in 1990, is not the central piece of disability legislation. More important in terms of the amount of money spent and the influence it has over the lives of people with disabilities is Social Security Disability Insurance (SSDA).¹ This program pays benefits to people who are unable to engage in substantial gainful activities. As a consequence, the program contains a conception of disability that equates being disabled with being unable to work, a direct contradiction of the central premise behind the ADA. Because SSDI was created in 1956, however, it has what might be called a prior claim on disability policy.

Second, things in the policy and physical environments are not arbitrarily designed so much as they are historically determined. Historical precedent, not some spontaneous arbitrary decision, determines how high grocery shelves will be. What has come before exercises an important influence over what comes next.

Third, the question of service provision is not as amenable to dialogue as Kuczewski implies. Who does what to whom inevitably involves the question of power as mediated by politics. Inequities invariably follow from situations in which different groups have different amounts of power. In the case of disability, the blind, alone among groups with disabilities, received a special category of welfare provision in the 1935 Social Security Act, not because they were more needy but precisely because they were less needy: They had more power to control the political process. Further, the question of service provision contains inherent conflicts: The curb cuts that benefit people in wheel chairs work against the interests of the blind.

Fourth and finally, as Kuczewski himself recognizes, the disabled are not so homogeneous a group that they can be spoken of in such global terms as "the community integration of the disabled." My 92-year-old father-in-law needs someone to supervise his disintegration from the community; a 17-year-old mentally retarded person probably needs something else.

So before bioethicists start doing the heavy lifting and looking into people's souls, they might wish to orient themselves to the realties that define the subject before them. I suggest history as a useful tool. To state this principle sharply, one might say that history precedes ethics or at least that it should in the case of disability ethics.