The Place of Disability Experience in Bioethics and Public Policy Module 10

3.5 The Place of Disability Experience in Bioethics and Public Policy

Let us grant that a large number of people with particular impairments will say at least some similar things about life with those impairments, especially concerning stigma and discrimination. We are still left with complex questions about what uses to make of such experience in shaping public policy.

Clearly, one critical role is educational. Forty years ago plenty of well-meaning men wondered why women objected to having doors held for them, or to the exclusive use of male pronouns to refer to humans generally. Language, social conventions, and many aspects of life have changed because men listened to women's accounts of how seemingly innocuous acts felt, and of why those acts held not-so-safe implications for their self-realization and social participation. “Why is that person on crutches so offended when I ask him if he's traveling alone?” says the flight attendant who doesn't ask the same question of his non-disabled seatmate. Why doesn't the man who is blind let it go when a cab driver won't take his money? A non-disabled person may think it would be great not to pay the outrageous fare as the meter climbs in New York City traffic.

The educational value in explaining the daily experience of stigma goes far beyond “sensitivity training.” In making non-disabled people aware of how much of “the burden of disability” arises from routine, seemingly innocuous social interactions, people with disabilities can help to convince them that the direct or internal effects of their various impairments are not nearly as bad as imagined.

Taking the experiences of disabled people seriously may also have important implications for health policy. As is apparent in many bioethical and policy discussions, most non-disabled people, including health professionals, imagine the experience of disability to be far worse than reported by the disabled themselves (Basnett, 2001 and Gill, 2000). This gap is not explainable solely by the limited contact between the two groups. In developing a plan for Medicaid rationing in Oregon in the early 1990s, non=disabled people ranked treatments to sustain the lives of people with quadriplegia as of very low priority because of their presumed low quality of life (Menzel, 1992); people with quadriplegia complained that they had been left out of the surveys and that their appreciation of their lives had not informed the ranking process. Such serious policy errors might have be avoided by a recognition that people with disabilities had the same epistemic authority as non-disabled people to assess the quality of their lives.

The varied experiences of functioning with impairment may have a more modest role to play in policy deliberations than the common experiences of stigma and discrimination. But that role is still an important one. In designing buildings, transit systems, and other public and private facilities, and in establishing norms of conduct in schools and workplaces, we need to know a lot about how people with atypical functions get around and get along. It is not enough to ensure that the width of a doorway exceeds the width of a standard wheelchair; it is also important to find out about the preferences of wheelchair mobilizes before and after they enter a building. This kind of information is no different from that routinely elicited from non-disabled people in designing facilities. But it requires the representation of people with a wide array of impairments, and it requires respectful attention to the minutiae of their daily lives.

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