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One of Us: Conjoined Twins and the Future of Normal / Edition 1

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Overview


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.
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Editorial Reviews

Rosemarie Garland-Thomson
Not simply a study of conjoinment, Alice Dreger's book makes a complex and subtle argument for why we should trouble the notion of normal--perhaps the most unchallenged, seemingly commonsensical, foundational idea of our particular place and historical moment. Questioning such an accepted and unexamined concept as normal and the practices that enforce it requires careful rhetorical strategies, subtle arguments, and intricate complexity. Dreger has done this remarkably well, always keeping her writing accessible and lively. More important, she recognizes and acknowledges the cultural logic most of us have absorbed that supports our understanding of conjoinment as a personal tragedy to be undone by medical intervention at any cost and our view of conjoined people as suffering intensely because they are not singletons. One of Us marks an important and original contribution.
Jeanne McDermott
Dreger is a perceptive, warm, thought-provoking and at just the right times, humorous writer. Her goal--to transform the assumptions made about people born with unusual anatomies-- is wonderful and essential, especially for a culture that wishes to embrace diversity. Although her focus is on the most extraordinary form of human anatomy, conjoined twins, she also explores intersex, dwarfism, giantism and cleft lip in her effort to reform the "deformed" narrative. She weaves these voices with her own, creating a powerful historical perspective on the intersection of anatomy, surgery and social identity. After reading this book, all readers will reflect on being "defective", on the myriad ways that the body is and is not our destiny.
Katharine Park
From the freak show to the talk show, from the operating theater to the courtroom, Dreger traces the history, ethics, and cultural meanings of our attitudes toward conjoined twins and other people with unusual anatomies. This compassionate and well-researched study is a fascinating and important contribution to medical ethics.
Abraham Verghese
One of Us is a fascinating, reasoned, and marvelous exploration of a subject we can't help being drawn to. Alice Dreger's book has forced me to rethink my most basic assumptions about the issue of identity and seperateness, for which I am most grateful.
Jeffrey Eugenides
Are we singletons simpletons? It may be so. The evidence Alice Dreger marshalls in this impressively argued, immensely readable book, suggests that conjoined twins are often perfectlyat home in their shared skin, a fact that stretches, if anything, only our assumptions about their double lives. In articulating the rights of the individual in the most intimate of corporations, Dreger makes a persuasive argument for changing society rather than people. Given the recent deaths of the Bijani sisters following separation surgery, Dreger's contribution to the debate has become even more important.
New Yorker
Part history of medicine, part consciousness-raising freak show, this surprisingly entertaining book examines cultural reactions to conjoined twins and other anatomical anomalies. Dreger argues that Victorians were more appreciative than moderns of people born 'different,' viewing them as 'authorities on a unique and strangely attractive experience.' Nowadays, pediatric surgeons so prize normalcy that they perform sexual surgery on infants without concern for adult function; they may also withhold information from parents, and even override their consent, when dealing with birth defects...[H]er examples persuasively make the case that the anatomically different feel normal to themselves.
Booklist - John Green
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.
Nature - Jonathan Cole
[Dreger] questions whether difference has to be viewed as an impairment and whether impairment is tragic...Disability arises not from the impairment but from the response to it in those around, and so is socially induced...Dreger makes no claim to know all the answers but, by taking their side so eloquently, she invites us to see conjoined twins as 'no more broken than the rest of us.' This book is an eloquent and humane plea to see conjoined twins, and others with impairment and disability, as 'us' and not 'them.'
London Review of Books - David Wootton
Conjoined twins serve as a metaphor for fundamental truths about what it is to be human. Much of the book's power, much of its importance, derives from the ways in which the stories it tells resonate with the lives of those who are neither conjoined nor intersexual...Let's hope the publication of this book leads to...a serious rethinking of all our rights to consent to treatment, to privacy and autonomy, and to life itself. It is because this book has something important to say to 'normates' about their own lives, as well as about the lives of conjoined twins, that it stands a real chance of changing how we think about those with atypical anatomies.
Fortean Times - Bob Rickard
Alice Dreger brims with concern about social attitudes towards people who don't fit the stereotype of what is 'normal' and how this is reflected in deformities in general and conjoinedness in particular. If we look beyond her message--that concepts of 'normality' are paradoxically both flexible and rigid (to suit a range of prejudices), notoriously artificial and therefore undesirable--we see she has a point. With copious references, she shows that many sets of joined twins were content with their duplex identity, caring deeply about each other and accommodating their often striking psychological and intellectual differences with an intimacy we singletons can hardly imagine.
Choice - N. A. McHugh
Dreger has written a book that is insightful, compassionate, critical, and interesting. She shows how understanding the history of medicine is essential for critically developing current ethical medical protocols and reconstructing what is taken to be normal.
Bulletin of Medical Ethics
Challenging widely held assumptions is never easy, but that is exactly what Alice Dreger does in this thought provoking and compassionate book...Dreger suggests that raising the political consciousness of all those with unusual anatomies will benefit them and help shift societal attitudes towards acceptance and integration rather than 'normalisation.' This discussion will become increasingly important as medical techniques offer more sophisticated means of detecting, eliminating or treating the 'abnormal.'
The New Yorker
Part history of medicine, part consciousness-raising freak show, this surprisingly entertaining book examines cultural reactions to conjoined twins and other anatomical anomalies. Dreger argues that Victorians were more appreciative than moderns of people born “different,” viewing them as “authorities on a unique and strangely attractive experience.” Nowadays, pediatric surgeons so prize normalcy that they perform sexual surgery on infants without concern for adult function; they may also withhold information from parents, and even override their consent, when dealing with birth defects. Dreger sometimes strays into lit-crit goofiness—for her, conjoined twins call to mind every “crazy-in-love” song you’ve ever heard—but her examples persuasively make the case that the anatomically different feel normal to themselves.
Publishers Weekly
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- -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. (Apr.) Copyright 2004 Reed Business Information.
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Product Details

  • ISBN-13: 9780674018259
  • Publisher: Harvard University Press
  • Publication date: 10/28/2005
  • Edition description: New Edition
  • Edition number: 1
  • Pages: 208
  • Sales rank: 797,598
  • Product dimensions: 6.00 (w) x 8.00 (h) x 1.00 (d)

Meet 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.
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Table of Contents

Introduction 1
1 The Limits of Individuality 17
2 Split Decisions 51
3 What Sacrifice 83
4 Freeing the Irish Giant 113
5 The Future of Anatomy 142
Notes 157
Acknowledgments 188
Credits 190
Index 193
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