One of Us: Conjoined Twins and the Future of Normal [Hardcover]

Alice Domurat Dreger (Author)

Book Description

ISBN-10: 0674012941 | ISBN-13: 978-0674012943 | Publication Date: April 15, 2004 | Edition: 1

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.

(20041101)

Editorial Reviews

From 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-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.

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 --This text refers to the Paperback edition.

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Product Details

• Hardcover: 208 pages
• Publisher: Harvard University Press; 1 edition (April 15, 2004)
• Language: English
• ISBN-10: 0674012941
• ISBN-13: 978-0674012943
• Product Dimensions: 8.4 x 5.8 x 0.8 inches
• Shipping Weight: 13.1 ounces
• Average Customer Review: 4.2 out of 5 stars  See all reviews (5 customer reviews)
• Amazon Best Sellers Rank: #1,373,342 in Books (See Top 100 in Books)

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Customer Reviews

Most Helpful Customer Reviews

24 of 26 people found the following review helpful:

5.0 out of 5 stars From a Descendent of Conjoined Twins, May 17, 2004

By A Customer

This review is from: One of Us: Conjoined Twins and the Future of Normal (Hardcover)

As a descendent of Eng Bunker (1/2 of the Original Siamese Twins), I was thrilled to read this well thought out and compassionate book. I would highly recommend this book to anyone striving to understand the issues that are faced with conjoinment and "singletons" need for privacy and individuality. An important book that helps "de-freak" the humans that are born with unique anatomy. Thank you!

1 of 1 people found the following review helpful:

4.0 out of 5 stars Made me think about the way we perceive people that are born different, March 21, 2008

By 

Shirley Dodds (wallsend, England) - See all my reviews
(REAL NAME)   

This review is from: One of Us: Conjoined Twins and the Future of Normal (Hardcover)

This book was thought provoking. It made me think about what 'normal' is. From research that the author had done, it seems that a very high proportion of conjoined twins left conjoined are quite happy with their bodies. It seems that it is society that demands they are changed to a more normal appearance, despite horrible medical problems that will result from the operations. The book philophosises more about this than discusses actual cases. However there were some very interesting recent cases discussed, such as the sacrifice of one conjoined twin to save the other, and a case where the doctors took the parents of a pair of conjoined twins to court so the separation could go ahead.

9 of 13 people found the following review helpful:

5.0 out of 5 stars Thought-provoking, June 21, 2006

By 

Peter McCluskey (San Bruno, CA USA) - See all my reviews
(REAL NAME)   

This review is from: One of Us: Conjoined Twins and the Future of Normal (Paperback)

This book raises questions about peoples' reactions to conjoined twins that may have important implications for many other unusual traits. It eloquently questions common assumptions about the desire to seem normal. It has led me to wonder about the extent to which healthcare is used to make people more normal at the cost of making them less healthy.
The book presents strong evidence that conjoined twins who remain conjoined are at least as well off as those who are separated, and some evidence that separations reduce the twins' life expectancy, possibly by a significant amount.
Remarkably, of the twins who remained conjoined to adulthood, only one pair requested separation (they didn't survive it), and among those whose refused separation are a number whose twin had just died (which meant that separation appeared to offer the only chance for the remaining twin to survive).
This doesn't mean conjoined twins are better off that way (those who have been separated seem equally satisfied with their status), but it strongly suggests that decisions to perform separations are motivated by something other than concern over the twins wellbeing. And it suggests that people who claim things like "The proposed operation would give these children's bodies the integrity that nature denied them" are imposing their values on others in ways which would be considered unacceptable if the victims had a little political power.
The book reports a fair number of statements by doctors (and occasionally parents) which suggest they consider a normal appearance worth risking health to achieve. The book also theorizes that having a normal child is an important enough part of parents' identity to override their interest in their children's' wellbeing. The book also reports some indications that surgeons are biased toward surgery for unusual problems by the fame if can bring them.
Unfortunately, there isn't as much evidence as there ought to be about the health effects of separations. The book claims (plausibly, but without supporting references), that "most medicine is not yet evidence-based", with most surgical decisions being based on storytelling rather than careful studies.
The book raises some important questions about cases where doctors think the only way to save one twin is to kill the other. The author points out some strong similarities between the medical killing that is done in some of these cases and a hypothetical case where a heart is taken from a live singleton (i.e. not conjoined) donor to save another (which all would agree is wrong). One difference that she fails to consider is that if you consider the heart property, it looks like jointly owned property in one case and individually owned property in the other, and we should expect some differences to result from that (although doctors may still be more willing to kill one twin than that perspective would justify).
One interesting example that the book provides of medicalizing a difference is the attempt to get doctors to recognize <a href="http://en.wikipedia.org/wiki/Drapetomania">Drapetomania</a>, a "disease" which causes slaves to run away.
How widespread is the practice of impairing health to make people more normal? Surgeries on intersex children probably create modest health risks. Commonly used medicines to deal with ordinary colds suppress annoying symptoms that are tools the body uses to fight the disease, and tend to make the disease last longer (see the book Why We Get Sick : The New Science of Darwinian Medicine by Randolph Nesse). A child with 3 arms makes doctors want to <a href="http://www.firepile.com/robin/archives/000787.html">chop it off</a>, presumably at some risk.
Are these part of a wider pattern that would help explain why increased healthcare spending doesn't seem to make us healthier?