- Paperback: 208 pages
- Publisher: Harvard University Press; 10.1.2005 edition (October 31, 2005)
- Language: English
- ISBN-10: 0674018257
- ISBN-13: 978-0674018259
- Product Dimensions: 5.5 x 0.6 x 8.2 inches
- Shipping Weight: 4.8 ounces (View shipping rates and policies)
- Average Customer Review: 11 customer reviews
- Amazon Best Sellers Rank: #839,889 in Books (See Top 100 in Books)
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One of Us: Conjoined Twins and the Future of Normal 10.1.2005 Edition
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From 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.
Copyright © 2005 The New Yorker
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)
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 2004-01-26)
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 2004-04-12)
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 2004-03-15)
[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 2004-05-06)
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 2004-07-22)
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It offers up some fascinating questions of morality. My favorites were these three:
(1) Why do many people consider it wrong to exploit conjoined twins by putting them on display for their unusual bodies? Isn't that exactly what we do in the modeling industry?
(2) Why is there this pervasive theory that conjoined twins should offer up their bodies for the advancement of medicine? Doctors usually don't offer proper monetary compensation to twins or their families for access to the corpses of twins or for hordes of medical students to watch separation surgeries take place. Isn't this sense of entitlement, in a sense, worse than offering payment?
(3) Under what circumstances would it be morally acceptable to sacrifice one twin for the sake of the other twin's well-being?
It examines the idea of disability versus differences, and whether performing normalizing surgery is really a healthier course of action than becoming more adaptive and accommodating to one another's differences as a society.
This book was well-researched, and I kept telling my boyfriend about the stuff I was reading in the book, asking his opinion on philosophical questions and saying "Hey, did you know that ...?" I highly recommend this book.
a well thought out study of conjoined twins.
If you follow the author's ideology through, any body
modification--including braces for teeth or body-- is
damaging to a child's psychological health.
If you want facts--give this one a miss.
"But many professionals still do not believe that a conjoined life can ever be worth living, despite so much evidence to the contrary. The bias toward separation at virtually any cost is obvious in the medical and bioethics literature."
"[S]urgeons are often too quick to separate twins that might better remain together, out of the bias that only separateness can be good, no matter what the cost in lost anatomy and physiology that surgery would entail."
I remember in 1984, Burmese twin boys Win and Lin Htut came to Toronto for separation surgery. Controversial at the time was the decision of what to do with their single set of male genitalia. Lin was assigned the male organs while Win, who had lived all two and a half years of his life as a boy, was reassigned as a female. This still appalls me, how his sexual identity could be stolen so cruelly, all for the alleged benefit of creating two singletons. I suppose that the surgeons never considered Win's life as a penisless boy an option. The nurses who assisted in the operation testified in Canadian Nurse magazine:
"In fact, before the operation, 'as nurses we were not sure what to do with [these] "healthy" children.' But the nurses were deeply troubled after the operation: 'The healthy "whole" children whom we had adopted as our own were now, seventeen hours later, separate but badly deformed. Now they seemed handicapped.'"
"Most of us are so used to dealing with people who fit invisibly into the standard categories of anatomy and identity that it is jarring when we meet someone who doesn't. And it is the recognition of this awkwardness, the recognition of how comfortable it can be to be considered normal, how uncomfortable it can be to be considered abnormal, that motivates adults to want to surgically normalize children born with unusual anatomies, to separate the Loris and Rebas..."
I was already well familiar with the craniopagus twins Lori and George Schappell, and in preparation for this book review I reviewed some of their TV appearances on-line. George was born Dori, and then changed her name to Reba. She hated having a rhyming name and wanted to emulate her favourite singer Reba McEntire. A few years ago Reba came out as a transgendered man and I will respect his wish to identify as a trans man by using the name George and masculine pronoun when appropriate.
In 2000 they, as Lori and Reba, were the subject of an A&E documentary by Ellen Weissbrod called "Face to Face". Dreger took part in this documentary and writes about it in the book (p. 132).
In "Face to Face", Lori and Reba are going about their lives, just as well as any able-bodied singleton. We are watching them in amazement, but we are not gawking so much at their different anatomy as at the realization that they don't need any special care from anyone. Dreger writes about other documentaries:
"By focusing on how a 'deformed' child is to be made 'normal'--how conjoined twins are made into singletons, for example--medical documentaries reinforce the idea that the unusual anatomical state is unjustly imprisoning the real child. By implication, the real child always has a typical body; at best, a child with unusual anatomy is seen as an unfinished product that requires someone else's expertise to become fully human."
On one tabloid show over twenty years ago when George was still living as Reba, they hardly had any time to sit down before Jerry Springer asked about their sex lives. Lori, who at the time was a virgin and vowed on the show to remain as such until her wedding day, has since stated in a number of interviews that she has had intimate sexual relations including intercourse. The audiences always gasp. It's a scandal, or an incestuous orgy, to have your sibling in on the act. What pray tell does George do during all this? He tunes out, which is a practice that conjoined twins learn to master. If you have trouble tuning out the annoying guy whistling on the bus next to you, how does a conjoined twin tune out his sister when she is having sex? How grotesque! How unnatural. No, for a conjoined twin, tuning out your sibling is easier than you think. And having sex is natural.
Why do singletons titter at the thought of conjoined twins having intimate relations? We as singletons know what acts are private and must remain so: urination, defecation, sexual stimulation or other sexual activity. We cannot imagine going to the bathroom and inviting a sibling to come in and watch. Yet for conjoined twins, their acts of elimination are normal bodily functions that have never been private. And not all conjoined twins share one bladder or bowel. Thus they must notify the other that it is bathroom time. Yet singletons are repulsed by the thought. Okay, maybe we can get our minds around the idea of going to the bathroom with an audience, fine, but...sex? Should conjoined twins live sexless lives because they don't meet our standards of privacy and propriety? Chang and Eng Bunker, known as the original Siamese twins because that was their nationality, each married and fathered twenty-two children between them. Violet and Daisy Hilton, pictured on the book cover, could not initially obtain marriage licences even after travelling to twenty-one states. Marriage licences were denied them, on the grounds that it would be immoral and bigamous:
"The curiosity and condemnation people expressed about the Hiltons' sex lives seems to have been more strident than usual; but such reactions have always been associated with conjoinment. Many singletons simply cannot abide the idea of conjoined twins having sex."
Yet in spite of their anatomy, conjoined twins see themselves as individuals. In interviews with Dreger, they all use the first-person singular pronoun. And the conjoined adults have no desire to be separated. They are happy as they are and would never consent to separation surgery even if medical advancements now offer this possibility:
"Do separation surgeries achieve the goal of freeing children to live independent lives as individuals? The problem with this question is that conjoined twins almost invariably state that, from their point of view, they don't need to be separated to be individuals, because they are not trapped or confined by their conjoinment."
"The fact is that across cultures and across time, the great majority of people who are conjoined simply have not expressed the sensation of being overly confined, horribly dependent, physically trapped, or unwillingly chained to others."
"Chained" is an apt term. Violet and Daisy Hilton starred in the 1951 film "Chained for Life", the title of which can be interpreted in a number of contexts. While neither sister personally felt unjustly "chained" to her twin, the title was chosen for the singleton audience who cannot imagine living a life while attached to another person. Chained or straitjacketed, it's all the same to a singleton. The movie deals with the legal ramifications after Violet commits a murder, and what the courts will do when she is sentenced to death. Will Daisy have to die along with her? Note that the movie's opening credits do not even treat Violet and Daisy as individuals. They are labelled merely as "The Hilton Sisters", without individual names.
Dreger devoted one chapter to several documented sacrifice surgeries. You will have a heavy heart after reading it. Sacrifice surgery refers to a case of conjoinment where both children will die soon if left intact, but one might live if separated. Sometimes these surgeries occur shortly after birth, however Dreger wrote about three cases that occurred in infancy, where one conjoined twin was gradually becoming weaker and was compromising the health of the other twin. It's bad enough for parents to have to deal with such a heartbreaking situation. They certainly don't need the arm of the law interfering should they refuse the surgeons' recommendations for the sacrifice surgery. Dreger argues that sacrifice surgeries operate on very uneven ethical grounds and that if parents do not wish to opt for the surgery, their will should be respected and the law should not intervene. The final decision about what to do with severely ill conjoined twins should always fall with the parents if the twins are too young to give their own consent.
One of Us was a rapid read and an informative supplement to the "Face to Face" A&E documentary.