One of Us: Conjoined Twins and the Future of Normal
by Alice Domurat Dreger
Harvard University Press, 2005
eISBN: 978-0-674-26308-6 | Paper: 978-0-674-01825-9 | Cloth: 978-0-674-01294-3
Library of Congress Classification RG626.D74 2004
Dewey Decimal Classification 362.196043
eISBN: 978-0-674-26308-6 | Paper: 978-0-674-01825-9 | Cloth: 978-0-674-01294-3
Library of Congress Classification RG626.D74 2004
Dewey Decimal Classification 362.196043
ABOUT THIS BOOK | REVIEWS | TOC
ABOUT THIS BOOK
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.
REVIEWS
[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.’
-- Jonathan Cole Nature
-- Jonathan Cole Nature
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.
-- David Wootton London Review of Books
-- David Wootton London Review of Books
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.
-- New Yorker
-- New Yorker
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.’
-- Bulletin of Medical Ethics
-- Bulletin of Medical Ethics
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.
-- Bob Rickard Fortean Times
-- Bob Rickard Fortean Times
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.
-- John Green Booklist
-- John Green Booklist
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.
-- N. A. McHugh Choice
-- N. A. McHugh Choice
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, Domurat Dreger voices distaste for Americans’ failure to tolerate anatomical difference and instead fetishize individualism at all cost… This pithily provocative critique of medical paternalism and society’s blind spot 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.
-- Publishers Weekly
-- Publishers Weekly
Are we singletons simpletons? It may be so. The evidence Alice Dreger marshals in this impressively argued, immensely readable book, suggests that conjoined twins are often perfectly at 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.
-- Jeffrey Eugenides, winner of the Pulitzer Prize for Fiction for Middlesex
-- Jeffrey Eugenides, winner of the Pulitzer Prize for Fiction for Middlesex
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.
-- Abraham Verghese, author of The Tennis Partner and My Own Country: A Doctor’s Story of a Town and Its People in the Age of AIDS
-- Abraham Verghese, author of The Tennis Partner and My Own Country: A Doctor’s Story of a Town and Its People in the Age of AIDS
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.
-- Rosemarie Garland-Thomson, Emory University, author of Extraordinary Bodies
-- Rosemarie Garland-Thomson, Emory University, author of Extraordinary Bodies
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, gigantism 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.
-- Jeanne McDermott, author of Babyface: A Story of Heart and Bones
-- Jeanne McDermott, author of Babyface: A Story of Heart and Bones
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.
-- Katharine Park, Harvard University, coauthor of Wonders and the Order of Nature, 1250–1750
-- Katharine Park, Harvard University, coauthor of Wonders and the Order of Nature, 1250–1750
TABLE OF CONTENTS
Introduction 1 The Limits of Individuality 2 Split Decisions 3 What Sacrifice 4 Freeing the Irish Giant 5 The Future of Anatomy Notes 157 Acknowledgments 188 Credits 190 Index 193
See other books on: Abnormalities, Human | Dreger, Alice Domurat | Minority Studies | One | Us
See other titles from Harvard University Press
Nearby on shelf for Gynecology and obstetrics / Obstetrics / The embryo and fetus:
|
9781477316771
9780813535173
