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Reviewed by:
  • Disability bioethics: Moral bodies, moral difference
  • Rosemarie Tong (bio)
Disability bioethics: Moral bodies, moral difference. Jackie Leach Scully. Lanham, Md.: Rowman & Littlefield Publishers, Inc., 2008.

Jackie Leach Scully's book Disability Bioethics: Moral Bodies, Moral Difference is a brilliant account of disability. Scully's study wades into ontological, epistemological, and literary streams of thought as well as ethical and bioethical pools of reflection. Her contribution moves the field of disability studies forward. As Scully sees it, bioethics has not asked nearly a sufficient number of important questions about disability. Instead, it has largely confined itself to asking how disability might be eliminated through gene therapy, embryo selection, abortion, and the like; or how to treat/cure disability through surgeries, medical devices, and/or pharmaceutical interventions. Because of the narrow way in which it has approached disability, says Scully, bioethics has failed to ask important ontological [End Page 175] and epistemological questions about disability: What is it like to be disabled in the world? How is a person's thinking shaped by disability?

Early in her consideration of disability, Scully draws a crucial distinction between the ethics of disability (how should one treat disabled people?) and disability ethics ("the particular moral understandings that are generated through the experience of impairment") (9). According to her, disabled people's experience of impairment is by definition heterogeneous. Impairments include everything from Down's syndrome to paraplegia to cystic fibrosis. Also encompassed in the category of impairment are the chronic ailments associated with aging and the limitations that broken bones impose. As a society, we have become familiar with the distinction between an impairment (a biological anomaly), on the one hand, and social reactions to an impairment per se (disadvantaging someone or discriminating against someone on account of his or her impairment), on the other hand. Nonetheless, we have made relatively little progress in improving the lives of people with disabilities. We talk the talk, but don't walk the walk.

Although Scully thinks that both biological and social views of disability have their place in disability studies, she faults each of them for failing to provide an adequate account of how it feels to have an impaired body and, just as important, how the concept of disability is constructed culturally and linguistically. There is more to disabilities than their exteriority; they have a rich interiority. Repeatedly, Scully urges us to ask the following: How do disabled people experience the world? Do the motor and sensory experiences of disabled people construct not only their bodies but also their understandings differently?

One of Scully's more controversial claims is that bioethics is more compatible with a biological understanding of disability than a "strong" social understanding of disability, according to which disability could be eliminated by "redistributing economic resources, and changing educational and employment policies" (36). Her point is that although social justice questions are ethical, they are not primarily bioethical. Bioethics is likely to find more fertile territory for expansion in the psyches of disabled people than in the intricacies of cost-benefit analysis and the vagaries of political negotiation. Although I am not sure that Scully has drawn the boundary between bioethics and ethics correctly, I do think she is right to push bioethics to mine the empirical experience(s) of being disabled, for in this experience(s) are significant normative questions about the desirability as opposed to the undesirability of human bodily variation.

Invoking the work of philosopher Margaret Urban Walker, Scully affirms the so-called empirical turn in bioethics. We need to understand how people actually [End Page 176] think about their disabilities before we presume to make judgments about their decisions or actions. Particularly important in this regard is Scully's reminder that different moral understandings, created by different sensory and motor perceptions of the world, are not a sign of "psychological defenses" or "epistemic inadequacy" (56). Rather, they are the sign of a way of being-in-the-world that is capable of seeing rightness where people without disabilities see wrongness.

Two of the more dense chapters in Scully's book are Chapter Four, "Different by Choice," and Chapter Five, "Thinking through the Variant Body." In the former, Scully...

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