One of Us: Conjoined Twins and the Future of Normal - Hardcover

Dreger, Alice Domurat

Hardcover

ISBN 10: 0674012941 ISBN 13: 9780674012943

Publisher: Harvard University Press, 2004

Synopsis

Must children born with socially challenging anatomies have their bodies changed because others cannot be expected to change their minds? One of Us views conjoined twinning and other "abnormalities" from the point of view of people living with such anatomies, and considers these issues within the larger historical context of anatomical politics. Anatomy matters, Alice Domurat Dreger tells us, because the senses we possess, the muscles we control, and the resources we require to keep our bodies alive limit and guide what we experience in any given context. Her deeply thought-provoking and compassionate work exposes the breadth and depth of that context--the extent of the social frame upon which we construct the "normal." In doing so, the book calls into question assumptions about anatomy and normality, and transforms our understanding of how we are all intricately and inextricably joined.

About this title

About the Author

Alice Domurat Dreger is Visiting Associate Professor in Medical Humanities and Bioethics in the Feinberg School of Medicine at Northwestern University and Director of Medical Education at the Intersex Society of North America.

Reviews

"Why not change minds instead of bodies?" asks Alice Domurat Dreger in her new book in reference to people who are born with bodies different from those of us who consider ourselves normal. Her primary subject is conjoined twins, one of the most extreme examples, but she also brings into the story people with cleft lips, dwarfs, giants, and hermaphrodites. Since we cannot conceive of being willing to live with these abnormalities, we usually think that such conditions should be fixed by modern medicine, if possible. That, says Dreger, is the problem. Normalization procedures may sometimes be the best choice, but they are not the only option. Many people with unusual anatomies are completely comfortable with their bodies and derive their personal identities from them. It is the discomfort of their families and communities that most often exerts the pressure to change them. (Figure) Conjoined twins are in some ways the most urgent issue to confront, since high-risk separations are more often life-or-death situations than are other corrective procedures. Dreger understands the reasons for such separations, especially the fact that modern medical techniques have made them possible and usually successful, but she challenges our idea of what constitutes success. She finds it is often limited to the brief survival of one or both twins or subjecting survivors to years of hospitalizations and surgeries. Separations that require the deliberate sacrifice of one child in order to increase the viability of the other also force us into extremely difficult ethical decisions. To support her case for alternatives, Dreger looks at present-day and historical conjoined twins who have lived to adulthood. She finds that they all, with one recent exception, would not want to be separated even if they could be. Dreger makes telling analogies between people with these conditions and those whose "different" anatomies provoked discrimination in the past -- women, blacks, and homosexuals. In these instances, it was society's attitude that changed, and Dreger would argue that the same change could occur in the way we think and feel about the "differently bodied." She sees hopeful signs that this process is beginning. Documentaries and even tabloid-television talk shows that allow audiences to see how these people live and hear them speak for themselves can serve as sources of empowerment, rather than exploitation. Medical schools are inviting people with these conditions to talk to medical students about disability and difference. Families can be helped to adjust to a "different" child and encouraged to postpone some treatments until the child is old enough to participate in the decision. Long-term follow-up studies of corrective surgeries, although still too few, have made some physicians wary of routinely proceeding with normalization procedures "at all costs," because in some cases practitioners now see the costs as too high. Discourse on disability is a growing phenomenon in academia and in the popular press, but Dreger's book stands out for her extensive use of both historical literature and the current media. More important, she draws on her personal relationships with many of the people she writes about and even her experience as a relatively new mother. She believes that our ignorance about the differently bodied is often the biggest impediment to their ability to lead happy and productive lives, and she provides ample reasons to ask ourselves the question "Why not change minds instead of bodies?" Gretchen Worden, B.A.
Copyright © 2004 Massachusetts Medical Society. All rights reserved. The New England Journal of Medicine is a registered trademark of the MMS.

Analyzing case studies past and present, Dormurat Dreger, an associate professor of science and technology at Michigan State, questions assumptions about anatomical norms in a solemn and politically passionate exploration of separation surgery on conjoined twins. Providing historical and contemporary evidence that most adult conjoined twins do not desire to be separated, and that many surgeries are carried out on children too young to object, Dormurat Dreger voices distaste for Americans' failure to tolerate anatomical difference and instead fetishize individualism at all cost. Making ample use of her previous study of hermaphrodites, she likens separation surgery to reconstructive surgery on the sexually ambiguous genitalia of "intersex" children. Both types of surgery, she argues, share the dubious social rather than strictly medical goal of making such children appear more "normal." Aided by statistics that bespeak a high mortality rate, Dormurat Dreger mines cases of separation surgery around the world for the rational and ethical flaws in medical decision making, building a strong case against intervention. At the heart of her moral questioning is suspicion of the institutions involved, and of parents who may be motivated more by ill-conceived feelings about normality than by rational consideration for the children's futures. This pithily provocative critique of medical paternalism and society's blind spots vis-à-vis anatomical standards provides a valuable opportunity to ponder the high-profile surgeries on conjoined twins that most of us know only through the news headlines we habitually fail to question. 13 illus.
Copyright © Reed Business Information, a division of Reed Elsevier Inc. All rights reserved.

Should conjoined twins be separated if it's at all possible, even when risky? Well, of course, because then they'll be able to lead independent lives without having people stare at them for the rest of their lives. But maybe not. In this thoughtful and provocative examination of conjoined twins and other unusual anatomies, Dreger argues that the medically invasive, almost invariably life-threatening separation surgeries are unnecessary and performed, usually, before the people involved are old enough to consent to them. She claims that, historically, most conjoined twins have preferred conjoinment to life as singletons, as Dreger calls those who aren't conjoined. Rather than changing conjoined twins so that the rest of us can fit them into our construction of normal human anatomy, Dreger believes singletons ought to expand their understanding of anatomical normality to include conjoined twins--and people with cleft lips, intersex genitalia, and other unusual anatomical features. Though her writing sometimes veers into empty rhetoric and overwrought exemplification, Dreger writes about complex issues of personhood insightfully and accessibly. John Green
Copyright © American Library Association. All rights reserved

Edition details

• Publisher: Harvard University Press
• Publication date: 2004
• Language: English
• ISBN 10: 0674012941
• ISBN 13: 9780674012943
• Binding: Hardcover
• Edition number: 1
• Number of pages: 208