Book Review

Disability Bioethics: Moral Bodies, Moral Difference

N Engl J Med 2008; 359:2298-2299November 20, 2008

Article

Disability Bioethics: Moral Bodies, Moral Difference
(Feminist Constructions.) By Jackie Leach Scully. 203 pp. Lanham, MD, Rowman & Littlefield, 2008. $60. ISBN: 978-0-7425-5122-0

In the 1970s and 1980s, the first wave of disability theorists began to criticize medical professionals and bioethicists for using a medical model of disability. They argued that those who subscribed to the medical model were wrong to assume that, as deviations from normal function, physical impairments are intrinsically bad. And they argued that those who used the medical model literally did not know what they were talking about. This ignorance was due not only to a failure of imagination but also to a failure to listen to people with disabilities. Why bother? It seemed self-evident that impairments necessarily entailed pain, frustration, and disappointment.

In place of the medical model, these first-wave theorists argued for a social model. What was bad about disability was not intrinsic to the impairment but was constructed by society. Moreover, because what was bad about disabling traits could be eliminated by extinguishing intolerance and breaking down social barriers, we didn't need to distinguish among disabling traits. The differences among disabling traits paled in comparison with the discrimination and oppression that persons with different disabilities faced.

In her wise, clear, and careful book, Jackie Leach Scully takes her place among the leaders of a second wave of disability theory. This second wave, which has been gaining strength for some time now, came into clear view in 2006 with the publication of Tom Shakespeare's book, Disability Rights and Wrongs (New York: Routledge). Second-wave theorists do not repudiate first-wave theorists but seek to make the first-wave insights more nuanced and thereby more helpful.

Fundamentally, Scully calls for an investigation of how our particular bodies affect our experience of the world and how they might affect our understanding of how we should act. She rejects the idea that when we think, we simply put reason to work on the world. Instead, she urges us to consider how “the organic reality of the body and its processes is important to abstract thinking, including thinking about ethics.” In her own investigation, she masterfully weaves together insights from the philosophical approach called phenomenology and from up-to-date feminism, psychology, and neuroscience.

Though Scully emphasizes that an atypical body can actually be a positive feature of someone's life, she allows that this is not always so. Although she wants to retain the insights of first-wave disability theorists regarding the social construction of disabilities, she also acknowledges the “intrinsic disadvantage of some impairments.”

A more frank confrontation with the heterogeneous meanings of having an atypical body would not just require disability theorists to make their thinking more nuanced. Medical professionals and bioethicists would need to grasp that living with an impairment can make life feel, and thus be, different for a person with an impairment than for a person without one. Not only what one takes pleasure in, but even what one thinks is good or right, can feel and be different. Life with an impairment is not a typical life minus what goes with impairment; it is a different life.

Unfortunately, we are bad at imagining what a given impairment would mean for others — or for ourselves. For example, after people experience spinal cord injuries, they often report a quality of life that is only slightly lower than that reported by people without such impairment — and that reported quality is much higher than most people would predict. And it is not only laypeople who guess wrong about what impairment will mean. As Scully explains, “even hospital and rehabilitation staff . . . evaluated their patients' quality of life as lower than the patients themselves did.”

Although Scully acknowledges that reports such as the ones she cites are inconclusive and fiercely rejects the romanticization of impairment, she argues that such studies are a way of investigating what life is really like for particular people with particular disabilities. Scully's gentle but powerful call for such research should gain more traction than the similar call that was made by first-wave theorists.

Scully does not direct her book only or even primarily to readers of disability theory. Nor does she direct it only to medical professionals and bioethicists who want to improve services to people with impairments. She directs it to anyone who wants to think better about what it means to live in and to make choices in a body that is anatomically unique — which is, of course, each of us.

Erik Parens, Ph.D.
Hastings Center, Garrison, NY 10524
parense@thehastingscenter.org