Disability Studies Quarterly
Fall 2006, Volume 26, No. 4
<www.dsq-sds.org>
Copyright 2006 by the Society
for Disability Studies


BOOK & FILM REVIEWS

Parens, E., ed. (2006). Surgically Shaping Children: Technology, Ethics, and the Pursuit of Normality. Baltimore: Johns Hopkins University Press. Hardcover, $50, 274 pages. ISBN 0-8018-8305-9.

Reviewed by Kathleen LeBesco, Marymount Manhattan College

Erik Parens, senior research scholar at The Hastings Center, has for years been producing fascinating edited collections that examine philosophical and practical issues of great importance to disability scholars and activists. Some of his earlier anthologies, including Enhancing Human Traits (1998) and Prenatal Testing and Disability Rights (edited with Adrienne Asch, 2000), are seminal tomes for readers interested in the intersection of bioethics and disability. His new venture, Surgically Shaping Children, provocatively continues the conversation about the meaning of normalization in the context of readily available medical technologies.

The collection's 16 essays cover a broad range of perspectives and modes of authorial address, but focus specifically on three particular conditions for which corrective/enhancing surgery is currently available: cleft lip/palate; achondroplasia; and ambiguous genitalia. Parens' decision to limit the discussion to these three bodily situations is sometimes frustrating, as readers may crave the possibility of seeing what the articulate contributors have to say about other conditions. However, this range of topics is sufficient for the contributors to be able to explore the spectrum of surgical outcomes--including surgeries that frequently fail to realize their goals (intersex surgery), those for which the results are often mixed (limb lengthening) and those that tend to be more successful at normalizing appearance (cleft lip and palate surgeries).

One of the volume's more appealing characteristics is its inclusion of a diversity of voices. Readers hear from surgery survivors and refuseniks, parents of children for whom surgery is an option, surgeons, philosophers, sociologists, and disability scholars. The result is a surprisingly even-handed examination of a complicated issue. Parens organizes the chapters so as to give the final word to scholars of disability (Alice Dreger and Adrienne Asch) who advocate delaying any decisions about surgery until the child who would undergo it can fully comprehend his or her options, and who encourage parents to consider the extent to which acquiescing to appearance-normalizing surgeries promotes complicity with stultifying norms. But before getting to this concluding point, readers encounter thoughtful arguments in favor of these surgeries, including Emily Sullivan Stanford's discussion of her positive identity as a person with achondroplasia who underwent limb-lengthening surgeries. Readers whose disability politics might initially encourage them to dismiss out of hand any surgery that is primarily aesthetic will find themselves confronted with compelling stances to the contrary–an encounter that stands to enrich the dialogue surrounding bioethics and disability.

My reservations about the volume are few, though I must mention my concern about its movement from the personal (with narratives by individuals with ambiguous genitalia, cleft lip and palate, and achondroplasia comprising Section I) through the philosophical and back again to the personal (with the final chapters, written by scholars who may or may not share these conditions but who offer advice to parents of children with congenital variations). Sometimes, the detour through the philosophical seems less than useful. For a book that concludes with direct address to would-be parents, a relatively abstract and inaccessible (though interesting) diatribe on Heidegger's philosophy of technology (as in chapter five) seems strikingly out of place. That said, many of the chapters that explore philosophical issues do so in ways that will surely be of interest to the non-philosophers among us.

Surgically Shaping Children would make an excellent support text in graduate or undergraduate classes on disability studies, bioethics, body politics, or science and technology studies. I would love to see it taught in medical schools, especially given that surgeon/contributor Jeffrey Marsh admits that he had never "appreciated the tension between making the goal of making a child look more normal and the goal of affirming a wide variety of human appearance" (113) before participating in the Hastings Center's Surgically Shaping Children project. The text will illuminate disability perspectives on normalizing surgeries as surely as it will provoke vital conversations about the appropriateness of surgically pursuing normalcy.