The Experience of Disability Module 5

The Experience of Disability Module 5

                                                 

3. The Experience of Disability

Although it is subject to dispute and qualification, the distinction between biological impairment and social limitation is relevant to many normative and policy issues, especially those concerning the choice between measures that modify the disabled individual or alter his environment. In this section, we consider the role of that distinction in addressing the critical question of how the experiences of people with disabilities are relevant to those issues. The disability rights movement has long complained that the perspectives of people with disabilities are too often ignored or discounted. The slogan that served as the title for James Charlton's 1998 book, Nothing About Us Without Us (Charlton, 1998; Stone, 1997) has often been invoked to demand the inclusion of people with disabilities in policy making and research concerning disability. The slogan suggests that they have both a unique perspective to bring to those activities and a right to take part in them. But what is the “us” to whom the slogan refers? Do persons with different disabling traits have enough in common to claim that there is a “disability perspective” to bring to bear on policy and research?

Such questions are best approached in terms of the two aspects of impairments recognized by most disability theorists: as structural or functional atypical ties, and as markers for discrimination. These two aspects of impairment roughly correspond with two distinct types of disability experience:

1.     The experience of living with an atypical structure or function—factual or phenomenological information about living with different physical, sensory, cognitive, or affective functions than does the majority of the population.

2.     The experience of facing stigma and discrimination based on one's structural or functional atypicalities.

There may be more commonalities in one kind of experience than the other and greater relevance to specific research or policy issues. Further, the epistemic and moral authority of statements made by people with disabilities about their experiences may vary with the kind of experience they describe.

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