cover of book
 

One of us: conjoined twins and the future of normal
by Alice Domurat Dreger
Harvard University Press, 2004
Cloth: 978-0-674-01294-3
Library of Congress Classification RG626.D74 2004
Dewey Decimal Classification 362.196043

ABOUT THIS BOOK | 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.



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
Acknowledgments
Credits
Index

Illustrations
1. Eng and Chang Bunker as young men
2. The Bunker twins with two of their sons
3. Types of conjoinment
4. Laloo and his parasitic twin
5. Abigail and Brittany Hensel at play in the family home
6. Chang and Eng Bunker engaged in various pursuits
7. Lin and Win Htut before separation
8. Cover of AORN Journal, January 1982
9. The Two-Headed Boy of Bengal
10. Charles Byrne with two other giants and several people with dwarfism
11. Advertising pamphlet for Millie and Christina McCoy
12. Crouching Figure with Visible Skeleton, by Laura Ferguson



Reviews of this book:
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-a-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

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

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

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, and 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, 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.
--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, and co-author of Wonders and the Order of Nature, 1250-1750

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

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.
--Jeffrey Eugenides, winner of the Pulitzer Prize for Fiction for Middlesex

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