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One of Us: Conjoined Twins and the Future of Normal

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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 Domu 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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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 Domu 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.

30 review for One of Us: Conjoined Twins and the Future of Normal

  1. 5 out of 5

    Melody

    The whole time I was reading this book I kept thinking how the author’s presentation of how the medical world deals with conjoined twins (as a disease that must be cured) should also cover the way society deals with most everything that is “different”: There is a name for every “condition” and a pill or a surgical procedure to move everything closer to a “perfect” homogenized state of normalcy. I couldn’t believe she was going to spend the whole book all concerned because surgeons wouldn’t enter The whole time I was reading this book I kept thinking how the author’s presentation of how the medical world deals with conjoined twins (as a disease that must be cured) should also cover the way society deals with most everything that is “different”: There is a name for every “condition” and a pill or a surgical procedure to move everything closer to a “perfect” homogenized state of normalcy. I couldn’t believe she was going to spend the whole book all concerned because surgeons wouldn’t entertain the thought of leaving two heads on a baby but was not going to at least comment on the similarities of doctors over-prescribing and pharmaceutical companies over-producing and marketers over-convincing Americans that we all need anti-depressants, attention deficient “correction” medications and botox. But she came through and her whole last chapter deals with just those issues. I’ve begun this review backwards I guess. The author explores the belief that conjoined twins should not be separated but rather society should be changed so that we are more open to people who are different – rather than demanding that everyone fit into neat categories and conform to some Disneyland fantasy of perfection. She sites her reason as being that there are many instances of conjoined twins who have lived happy, fulfilled lives and that only one set of twins ever requested to be separated. She also hits you hard with the fact that sometimes the separation process is the only “accepted” time it is “OK to kill one child to save another” (in the case of “sacrifice surgeries” all the “tissue” of the twin to be “sacrificed” is “functioning until surgeons cut off one twin from life-sustaining organs”). Also one of the main problems people have had with unseparated conjoined twins living a “normal” life is the concern with and disapproval of their sex life. A very fascinating book.

  2. 5 out of 5

    Jenny

    I liked this book, but I felt there were two issues. Though I agree with her that we should respect people with unusual anatomies to make their own decisions, I felt like I was being hit over the head with the message. Okay! I GET IT! Enough already! Secondarily, her specialty is in intersex medical history, and that's interesting, but I didn't choose to read those books. Yet it comes up over and over again. Again, I get the similarities, but it's kind of like "this one time a band camp...."

  3. 4 out of 5

    Yasser

    An interesting, eye-opening discussion on the controversial trinity of anatomy, identity and societal understanding. This book challenges how people with typical anatomies usually see people with atypical anatomies; conjoinment, intersex, dwarfism.. et cetera. It is quite absurd to see that the "only" way "normal" people (people with typical anatomies, including, doctors and medical and legal institutions) decide to deal with "abnormal" anatomies, is to surgically normalize them and "allow them a An interesting, eye-opening discussion on the controversial trinity of anatomy, identity and societal understanding. This book challenges how people with typical anatomies usually see people with atypical anatomies; conjoinment, intersex, dwarfism.. et cetera. It is quite absurd to see that the "only" way "normal" people (people with typical anatomies, including, doctors and medical and legal institutions) decide to deal with "abnormal" anatomies, is to surgically normalize them and "allow them a better quality of life." The writer argues that the issue, at its core, is a psycho-social issue with society's collective prejudice on stigmatized anatomies, that is way bigger and goes way deeper than the anatomical/pathological issue of the subjects. It becomes quite obvious then the comparison of all this, to how "normal" people (white men, including, again, doctors and medical and legal institutions) saw -inferiorly- people of color, and women, back in the 1800s. [Quite remarkable that, the civil rights movement started the change, then the legal institutions followed. Perhaps this is why Alice is calling for a change that starts from society, before the medical institutions.] Alice showed very interesting, thought-provoking and informative examples and cases from different medical, psychological, legal, familial and social standpoints, from which I could draw the conclusion; "surgery is no substitute for direct treatment of the real issues." The book sheds some light also on some other ethical controversies related to the subject, like; parental consent on unnecessary sacrifice surgeries, the act of passive euthanasia by performing such surgeries in the first place, and some other issues like the displays of unusual anatomies in museums and in medical textbooks, sometimes without consent.. all of which I knew nearly nothing and were brought to my attention by this book. It's worth mentioning, 2 quotes from this book, I see, are fundamental to almost every rights movement of the sort. - "[We are caught] in a matrix of sentiment, stereotype, ignorance, and curiosity... People see us as beggars, helpless victims, or superheroes." - "Let us now stop referring to [people] who undergo massive normalization as "real fighters" and start recognizing that we are the ones who construct what they are fighting against." I enjoyed reading this book a lot. I also think I am starting to have something for scientific and medical literature, and it is growing on me. I genuinely enjoy reading it.

  4. 5 out of 5

    B Zimp

    This non-fiction work was very interesting and made me reconsider many of my pre-established viewpoints about body normalcy and how we treat mutations. The ultimate summary is that the author wants to know why we (society, medicine, etc) treat different shaped bodies as diseased specimens requiring treatment, when most of the effected individuals do not view their body as deformed or in need of alteration. [Historically conjoined twins do not want to be separated even when one dies.] The majorit This non-fiction work was very interesting and made me reconsider many of my pre-established viewpoints about body normalcy and how we treat mutations. The ultimate summary is that the author wants to know why we (society, medicine, etc) treat different shaped bodies as diseased specimens requiring treatment, when most of the effected individuals do not view their body as deformed or in need of alteration. [Historically conjoined twins do not want to be separated even when one dies.] The majority of the book is focused on conjoined twins, but the author also touches on other conditions such as hermaphrodites to reiterate her points. The medical ethics section of this book were fascinating and ripe for a Jodi Piccoult novel. For example: A set of conjoined twins from Malta is brought to the UK for assistance with a complicated birth. Once born it is realized that one of the attached siblings has severe oxygen deprivation and will be significantly developmentally delayed/impaired throughout her life. This same sibling also has a somewhat weaker cardio and respiratory system, but combined with her healthy sister, both girls are fairly healthy considering the obvious. The medical team decides that the impaired sister needs to be removed (which will result in her immediate death) as she is a drain to her sibling (developmentally and circulatory). The parents refuse, believing this to be murder and citing concerns about caring for the now handicapped (due to the need for multiple surgeries and medical care, post-separation) daughter in a third world country. The doctors take the family to court (twice) and the judiciary system sides with the medical system! The twins are separated, resulting in one child's death immediately and the expected serious handicap of the other. When asked to consider this scenario with non-conjoined twins the outcome is preposterous. I will add that while the writing in this book wasn't dry, this work felt like it was someone's unpolished thesis. All the good ideas were in place it just wasn't a 'smooth' read. Since it brought up so many important topics and ultimately made me change my view point, I think the polishing is a minor issue.

  5. 4 out of 5

    Rori Rockman

    Dreger hit the trifecta here. Her book was informative, thought-provoking, and engaging. The pages are filled with anecdotes of the lives of conjoined twins throughout history, the decisions they've made and the lifestyles they've lived. 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) Dreger hit the trifecta here. Her book was informative, thought-provoking, and engaging. The pages are filled with anecdotes of the lives of conjoined twins throughout history, the decisions they've made and the lifestyles they've lived. 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.

  6. 5 out of 5

    Craig Rowland

    One of Us: Conjoined Twins and the Future of Normal by Alice Domurat Dreger is devoted to championing the rights of those twins whose lifestyles none of us could ever truly comprehend. Conjoined twin births are extremely rare and when the general public becomes aware of them, it is usually in a news story about a separation attempt. Dreger, in her short book, puts forth the argument against separation, where the "normal" in the title refers to living a full life while still conjoined, thank-you One of Us: Conjoined Twins and the Future of Normal by Alice Domurat Dreger is devoted to championing the rights of those twins whose lifestyles none of us could ever truly comprehend. Conjoined twin births are extremely rare and when the general public becomes aware of them, it is usually in a news story about a separation attempt. Dreger, in her short book, puts forth the argument against separation, where the "normal" in the title refers to living a full life while still conjoined, thank-you very much. Life as two "singletons" (individuals who are not conjoined) should never be the ultimate goal at any cost. Dreger gave voice to twins who are often silenced by surgeons and lawyers, or twisted by tabloid talk-show hosts. The underlying counterargument of One of Us is the medical supposition that conjoined twins have to be separated. Show conjoined newborns to a dozen surgeons and all of them will draw up schematics on how to divvy up their skin and organs. No one considers leaving the twins as they are. While an operation could in many cases leave the separated twins with only half a body, with one twin getting some organs (usually the sex organs, bladder or rectum) and the other twin without, later years of reconstructive surgeries and therapies may in fact do more harm than good. What parents like to see their children spend years of their lives in hospitals? Why do people, specifically the medical establishment, not consider a conjoined life as "normal"? Dreger writes: "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." and: "[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.'" Dreger continues: "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." and: "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.

  7. 4 out of 5

    Tiffa

    Alright, so it would seem that I have a bit of a "thing" about conjoined twins. This book is a good philosophical companion book to "Mutants" by Armand Marie Leroi, in that it seeks to break apart our ideas of normal by examining our notions of what is abnormal. There's some good thoughts on a kind of prescriptivist, maybe condescending attitude that is often directed toward anyone perceived as different; even if the backdrop is one of kindness, there is still a presumption of knowing what's bes Alright, so it would seem that I have a bit of a "thing" about conjoined twins. This book is a good philosophical companion book to "Mutants" by Armand Marie Leroi, in that it seeks to break apart our ideas of normal by examining our notions of what is abnormal. There's some good thoughts on a kind of prescriptivist, maybe condescending attitude that is often directed toward anyone perceived as different; even if the backdrop is one of kindness, there is still a presumption of knowing what's best for another human being (or pair of them!) The book got me thinking about the nature of relationships, compromise, our biological makeup, and a freak-showish sort of voyeurism I admit to being guilty of myself. We have an odd tendency to make people into caricatures, whether it's romanticizing or mocking.

  8. 5 out of 5

    Bryn Greenwood

    This is a really wonderful, thought-provoking book. It will certainly expand your ideas about normalcy and individuality and physical integrity. It's possible that it will keep you up at night thinking about just how our society judges the body.

  9. 5 out of 5

    Lizzie

    A very interesting book about an unusual but fascinating ethical situation. She describes the lives of several pairs of conjoined twins and observes that nearly all of them didn't or don't wish to be separated. It's parents and doctors who think they must be made as close to "normal" as possible, even when it means sacrificing one twin. She's a professor of Clinical Medical Humanities and Bioethics and has written about the ethics of intersexuality, which has the same ethical problems: children A very interesting book about an unusual but fascinating ethical situation. She describes the lives of several pairs of conjoined twins and observes that nearly all of them didn't or don't wish to be separated. It's parents and doctors who think they must be made as close to "normal" as possible, even when it means sacrificing one twin. She's a professor of Clinical Medical Humanities and Bioethics and has written about the ethics of intersexuality, which has the same ethical problems: children operated on without consent, although it may rob them of sensation and function, in order to seem "normal".

  10. 4 out of 5

    Jessica

    Even the bizarre human anomaly who is not fascinated by conjoined twins would get something out of this book. The author gets into issues of disablity rights, medical ethics, and enforced conformity from an angle that disturbed the living crap out of me. This book didn't really open my eyes or change my mind about anything, and there's nothing shockingly new (except in the specifics of separation surgery stories) if you've given these matters any thought. However, the author really throws herself Even the bizarre human anomaly who is not fascinated by conjoined twins would get something out of this book. The author gets into issues of disablity rights, medical ethics, and enforced conformity from an angle that disturbed the living crap out of me. This book didn't really open my eyes or change my mind about anything, and there's nothing shockingly new (except in the specifics of separation surgery stories) if you've given these matters any thought. However, the author really throws herself and a lot of heart into her arguments, which works I think because she seems to be a pretty likeable person. For some reason that felt really important here, in part because the topic (tiny little children being chopped up into pieces) was very upsetting, and it was good having someone I trusted there to guide me through it. Anyway, it's an interesting book. And it's about SIAMESE TWINS!!! That's probably all I really needed to say.

  11. 5 out of 5

    Lesley Looper

    I enjoyed reading this book, and learning more about the debate surrounding separating conjoined twins. It sounds like what society thinks about conjoined twins, and what healthy conjoined twins think about themselves and their connectedness, are often polar perspectives. One smaller point of the book that I found interesting was that people in history with unusual anatomies (conjoined twins, dwarfs, ususually tall people, etc) have made money making appearances, and in some cases have been looke I enjoyed reading this book, and learning more about the debate surrounding separating conjoined twins. It sounds like what society thinks about conjoined twins, and what healthy conjoined twins think about themselves and their connectedness, are often polar perspectives. One smaller point of the book that I found interesting was that people in history with unusual anatomies (conjoined twins, dwarfs, ususually tall people, etc) have made money making appearances, and in some cases have been looked down on for that, sometimes considered a "freak show," but people considered especially good looking (movie stars, models) make money for their appearances without the same criticism.

  12. 5 out of 5

    Aviva

    The book was full of interesting anecdotes and facts, but I felt like the author was trying to start a social movement toward rights for people with non typical anatomy. And they should have rights -- and the book prompted me to stop and think and talk about some of these concepts with my husband and others. But I wasn't expecting the book to be a rallying cry to gather support, and the book seemed rather thin once I tried to ignore that part if it.

  13. 5 out of 5

    Allison

    It was interesting, and informative, but as several other reviewers have noted, her agenda (though important) was pushed rather heavy-handedly.

  14. 4 out of 5

    Haley Hughes

    This book was a challenging read for me. Not because it was difficult to parse or uninteresting, but because it literally challenged my mindset, and in many ways the information and insight I gained has changed my perspective on unusual anatomies and where and how they belong in human rights discussions. Before I would have been much quicker to say how fundamentally unbearable conjoinedness sounds to me. But the first hand accounts concerning conjoined person's made me seriously think about how This book was a challenging read for me. Not because it was difficult to parse or uninteresting, but because it literally challenged my mindset, and in many ways the information and insight I gained has changed my perspective on unusual anatomies and where and how they belong in human rights discussions. Before I would have been much quicker to say how fundamentally unbearable conjoinedness sounds to me. But the first hand accounts concerning conjoined person's made me seriously think about how different it would be if that person had always been there. The familiarity breeds it's own culture and brings the relativity of individuality into stark relief. That said. . .I was so infuriated by the blatant glossing over of what is to me the most analogous condition to conjoinedness: pregnancy. Specifically late term pregnancy and particularly on the topic of scrifice surgeries. The entire chapter on sacrifice surgery left an ugly taste in my mouth because yes there are people who have grown to love people they are physically attached to and still sacrifice their remaining life for the chance to continue living. Those people are expecting parents. The opinion expressed in the book is that you can't narrowly restrict the circumstances under which you can sacrifice a human being for another to physical parasitism without creating a special class only populated by the conjoined. I would counter that it would also be populated by the pregnant, and that the situation is needfully more complicated than it has been presented in this book because any precedent concerning the elimination of necessarily joined bodies to save lives is going to affect the perceived autonomy of pregnant person's everywhere. I'm not sure I can get into it more without quoting and I'm still having a lot of feelings so I will just say this, I liked this book. It's important. It will make you see parts of the world you ignore. . . but it is for sure not perfect.

  15. 5 out of 5

    EAM

    I will begin by commenting on the challenge academic writers have in translating academic research into an interesting and engaging book that is approachable for a broad audience. Dreger does this really well. She takes a compelling case-study looking at conjoined twins and critiques the medicalization of 'normalcy' in a deep and meaningful way. Her work touches on the bioethical nuances of how society judges what is 'normal' and how we project that idea onto others, and in this case, other indi I will begin by commenting on the challenge academic writers have in translating academic research into an interesting and engaging book that is approachable for a broad audience. Dreger does this really well. She takes a compelling case-study looking at conjoined twins and critiques the medicalization of 'normalcy' in a deep and meaningful way. Her work touches on the bioethical nuances of how society judges what is 'normal' and how we project that idea onto others, and in this case, other individual bodies. As an academic, Dreger makes it easy to take this study of conjoined twins and apply the concepts to other medical contexts. I also appreciated Dreger's use of reflexivity in her writing, she brings her voice and perspective into the book in a way that is not overbearing, but gives the reader a sufficient view on her own foray into this subject matter. Again, this is an often underappreciated skill in academic writing, but one that deserves applause. Although you could easily pick this book up to take with you on a holiday break, it is also great reading for an undergraduate course on bioethics and/or medicalization of the body. In sum, I highly enjoyed this work and will likely continue to refer back to it in the years to come.

  16. 4 out of 5

    Ushan

    This book can be thought of as a medical-ethics companion to Armand Marie Leroi's Mutants and Katherine Dunn's Geek Love. People have a variety of bodies, the most unusual ones being conjoined twins, but also dwarfs, giants, intersex people etc. This book pleads to not medicalize this variety as problems in search of a surgical "normalization", which can make things worse.

  17. 4 out of 5

    Ev

    The author holds the belief that conjoined twins and other people born with different physiologies would choose to remain as they were born. From other reading I believe many would choose separation or modifications if practical for their situation.

  18. 5 out of 5

    Flavia

    I've been interested in this book for well over 5 years and though it is interesting and features a lot of information about intersex individuals as well as conjoined twins I ultimatively felt like it was just too surface-level. It is also quite outdated in its understanding of gender.

  19. 4 out of 5

    Eric

    Located (relatively) recent trends and (ethical, etc.) controversies in greater disability historiography. Remarkably readable.

  20. 4 out of 5

    Lillian Kennedy

    Read for Dr. Pence's Bioethics course.

  21. 5 out of 5

    Robyn

    I read this as part of my research for my undergraduate dissertation, since I am looking at conjoined twins and separation surgery. I had a clear idea of what I wanted to argue before I started to read this book and it was to my great delight that Alice Dreger argued many of the things that I wish to put forward myself, and in such a clear, articulate way. So many times I found myself reading a paragraph, before nodding vigorously and writing down notes as fast as I could. She essentially argues I read this as part of my research for my undergraduate dissertation, since I am looking at conjoined twins and separation surgery. I had a clear idea of what I wanted to argue before I started to read this book and it was to my great delight that Alice Dreger argued many of the things that I wish to put forward myself, and in such a clear, articulate way. So many times I found myself reading a paragraph, before nodding vigorously and writing down notes as fast as I could. She essentially argues that separation surgery may not always be in the best interests of conjoined twins, even though in Western society we are so quick to assume that it is always the best option. She points out many examples of twins who are happily conjoined and who do not wish to be separated (all but one set of conjoined twins to live to adulthood do not wish to be separated.) Furthermore, she argues that rather than changing conjoined twins to fit what is believed to be normal, we should change society's conception of normality. While I am not against separation in some cases; cases where separation is done for more functional reasons rather than to make those individuals 'normal', in many cases this is not the case and I wholeheartedly agree with Dreger. As someone who also went though a normalisation procedure, though to a lesser degree than some of the more radical ones Dreger mentioned, I found her comparison between these procedures and separation very much interesting and something which I will also address in my dissertation. It's rare that a non-fiction book makes me excited (especially one for uni where I very often do not have a choice in what I write about, though that is not the case with my dissertation) so I was very pleasantly surprised. I only dropped the one star because, as mentioned by some people, she does seem to want to hit us over the head with her argument where I don't think it needs to be reiterated so often, and sometimes, a few things were repeated in different chapters. But that is only a very small criticism.

  22. 4 out of 5

    Simone

    Review initially published on my blog, Writing by Numbers, here. Fellow sociologists, medical ethicists, gender/identity/sexuality scholars, and prospective parents, strap on your boots! Dr. Dreger, a bioethics professor at Northwestern, studies sex anomalies, conjoined twins, science history, and scientific controversies from a patient advocate standpoint. What a cocktail of awesome! One of Us is a succinct and potent exploration of how our culture’s obsession with standardizing anatomy produces Review initially published on my blog, Writing by Numbers, here. Fellow sociologists, medical ethicists, gender/identity/sexuality scholars, and prospective parents, strap on your boots! Dr. Dreger, a bioethics professor at Northwestern, studies sex anomalies, conjoined twins, science history, and scientific controversies from a patient advocate standpoint. What a cocktail of awesome! One of Us is a succinct and potent exploration of how our culture’s obsession with standardizing anatomy produces problems in our treatment of conjoined twins, intersex people, and others with alternative anatomies, both medically and socially. She focuses on how our “singleton” (non-conjoined)-centered mindframe leads us to pursue dangerous separation surgeries for conjoined twins far often than we perhaps should. Because we, as singletons, can’t imagine living conjoined, Dreger argues, we impose separation, frequently when twins can’t consent and/or separation creates health risks. She draws comparisons to the sex reassignment surgeries frequently performed on intersex infants, and the physical and emotional problems these individuals encounter later on. These are important issues, particularly if (like me) you fall into a mainstream gender and anatomical category and therefore aren’t personally forced to confront them. But even if you’re not reading it with a social justice lens, it’s fascinating stuff, with lots of stories about conjoined twins throughout history. Though academic in tone, Dreger writes clearly, and it’s a pretty quick read. The 213 in 2013 series chronicles every book I read in 2013. Each review contains exactly 213 words. For more, visit http://www.ararebit.wordpress.com.

  23. 5 out of 5

    Eric Juneau

    The book has an axe to grind, that is true, but the subject matter is grotesquely interesting. The (lengthy) introduction promises it's going to be more of an examination of all freaks, but it really focuses on conjoined twins. Through a historical study on subjects like Chang and Eng, the original Siamese twins, disastrous attempts at separating twins, plus accounts from existing paired humans, Dreger is trying to say that we shouldn't try to fix what isn't broken. All these people say that the The book has an axe to grind, that is true, but the subject matter is grotesquely interesting. The (lengthy) introduction promises it's going to be more of an examination of all freaks, but it really focuses on conjoined twins. Through a historical study on subjects like Chang and Eng, the original Siamese twins, disastrous attempts at separating twins, plus accounts from existing paired humans, Dreger is trying to say that we shouldn't try to fix what isn't broken. All these people say that they wouldn't separate if they had the choice. The medical industry sees pathology where the "freaks" find normalcy. It makes some very good points and I agree with the author. Except there's one part where it really loses me. Where, if it was cut, it would have improved my rating/review. She tries to compare pregnancy to having a conjoined twin. She uses lines like "this entity is dependent on the other for food and oxygen supply. Eventually, through societal pressure and the dominant's personal desires for independence, she decides to make the separation." This, I feel, is deceitful, manipulating the reader through withholding information. I don't think anyone can deny that pregnancy is a natural part of life, with the end goal being TO SEPARATE and become an independent entity, capable of making more offspring. Conjoined twins, while it may be natural, isn't the typical end state, and doesn't behoove propagation of the species. The fact that it often results in biological and reproductive problems for both parties emphasizes this fact. This attempt at melodramatic appeal, by saying that reproduction is just as normal as conjoinment, is misrepresentation to prove a point. But if you can get past that fact, it's one of the better non-fiction books I've read. If you've got to do some kind of high school research project you could do worse than this source.

  24. 4 out of 5

    Erin

    I'm not going to lie. I only read this because one of my favorite authors told me to. It is not something I normally would pick up on my own. I am so glad that I did, though. This book fascinated me. It fed my love for sociology but it also brought to light a world that I never really even thought of. I've never met conjoined twins and they have only popped up in stories that I have read a few times in my life. As a singleton, I've never considered the options conjoined twins and their families h I'm not going to lie. I only read this because one of my favorite authors told me to. It is not something I normally would pick up on my own. I am so glad that I did, though. This book fascinated me. It fed my love for sociology but it also brought to light a world that I never really even thought of. I've never met conjoined twins and they have only popped up in stories that I have read a few times in my life. As a singleton, I've never considered the options conjoined twins and their families have to face. I always just thought, if they weren't separated that it was for medical reasons. It never occurred to me that most do not even want to be separated. To really look into the lives and minds of these people was great. Though I was disturbed at some of the medical procedures that have been/are being done. Who are we to decide the fate of others? To decide what gender a child should be? But I digress. This is an interesting read about not only conjoined twins but also how our country has defined normal and how it affects those who don't fit into that category.

  25. 4 out of 5

    Logan Hughes

    I read this shortly after Far from the Tree: Parents, Children, and the Search for Identity, and it makes an excellent companion piece: both deal with conditions, often congenital, which fundamentally change a person's experience of life and make it different from their families of origin, and which raise questions like: under what circumstances should and shouldn't parents choose surgical options that "correct" the child's condition? To what extent is such correction actually helpful, and to wh I read this shortly after Far from the Tree: Parents, Children, and the Search for Identity, and it makes an excellent companion piece: both deal with conditions, often congenital, which fundamentally change a person's experience of life and make it different from their families of origin, and which raise questions like: under what circumstances should and shouldn't parents choose surgical options that "correct" the child's condition? To what extent is such correction actually helpful, and to what extent does it simply make the family/others more comfortable, as the person with the condition fits more simply into the idea of normal constructed by society? Dreger points out that most conjoined twins overwhelming choose not to be separated. She presents a mixture of scientific study, personal anecdote, journalism, and analysis.

  26. 4 out of 5

    Lesli

    This book gives you a completely different way of looking at the topics. Conjoined twins have always been an interest of mine. I have watched the A&E show mentioned in this. Parts of this book made me mad, especially a judge ruling over the parents. The point is brought up about the effect of a conjoined losing the other. I am a twin and even losing my sister would upset me and I think would still be there if it happened in infancy. So in my opinion, it would be worse on conjoined twins. I am a This book gives you a completely different way of looking at the topics. Conjoined twins have always been an interest of mine. I have watched the A&E show mentioned in this. Parts of this book made me mad, especially a judge ruling over the parents. The point is brought up about the effect of a conjoined losing the other. I am a twin and even losing my sister would upset me and I think would still be there if it happened in infancy. So in my opinion, it would be worse on conjoined twins. I am a believer in letting the child/children make their own choices. I agree with the author that there should be a change in the way "normal" is thought of, rather then fixing the abnormalities. Glad I took the time to read this book.

  27. 4 out of 5

    Amy

    Fascinating. Dreger provides a really interesting perspective on unusual anatomies and whether they really need to be "fixed," since the bodies aren't broken, just different. The book is a little clinical at times. I would have liked some more personal stories from the families about whom she writes, especially the Schapell twins. But it definitely makes you think and challenges traditional narratives. I'd kind of like to see an updated version of the book (since it's now 10 years old and things ha Fascinating. Dreger provides a really interesting perspective on unusual anatomies and whether they really need to be "fixed," since the bodies aren't broken, just different. The book is a little clinical at times. I would have liked some more personal stories from the families about whom she writes, especially the Schapell twins. But it definitely makes you think and challenges traditional narratives. I'd kind of like to see an updated version of the book (since it's now 10 years old and things have changed for the Shapells). This was one of John Green's 18 books that you haven't read but you should, or something like that. And it sounded intriguing, so I ordered it through ILL. Glad I did.

  28. 4 out of 5

    Carye

    Recently I've gotten back into my fascination with Conjoined Twins which began after seeing the film Twin Falls Idaho in 1998. I found this book in downtown LA at a used art bookstore. I love the book design, cover, and size. It's basically an academic thesis, with a few bw photos. Easy to read, interesting commentary on social norms, body image, and ethics. Towards the middle, to the end, I started to skim, as the book was too detailed at time as repetitive. I wanted more personal stories about Recently I've gotten back into my fascination with Conjoined Twins which began after seeing the film Twin Falls Idaho in 1998. I found this book in downtown LA at a used art bookstore. I love the book design, cover, and size. It's basically an academic thesis, with a few bw photos. Easy to read, interesting commentary on social norms, body image, and ethics. Towards the middle, to the end, I started to skim, as the book was too detailed at time as repetitive. I wanted more personal stories about twins lives. Much of the book was on ethics, doctors, and other choices conjoined twins of the 21st century must face. Let me know if you'd like to borrow it.

  29. 5 out of 5

    Hannah

    This novel does well in educating readers in issues on what most of us think of as normal or abnormal. Too often we think of only one type of body as being fully functioning and acceptable. I like the awareness it raises that people born with conjoined siblings or intersex conditions, for that matter, can be perfectly happy with their bodies since they were born that way. Surgery is often seen as the only solution even when a fulfilling and "normal" life is possible without it. Dreger has a clea This novel does well in educating readers in issues on what most of us think of as normal or abnormal. Too often we think of only one type of body as being fully functioning and acceptable. I like the awareness it raises that people born with conjoined siblings or intersex conditions, for that matter, can be perfectly happy with their bodies since they were born that way. Surgery is often seen as the only solution even when a fulfilling and "normal" life is possible without it. Dreger has a clear writing style and gives many stories about different twins throughout the years. A quick and educational read I would recommend to anyone.

  30. 4 out of 5

    Becky Safarik

    This was a valuable topic but it could have been done as an article, rather than entire book. I found that Dreger repeated herself, talking and talking some more, on a topic she'd already made her point on. I did, however, appreciate a quote by Mary Wollstonecraft she left us to contemplate at the end: "it is justice, not charity, that is wanting in the world." Dreger's last line is then "let us now stop referring to children who undergo massive normalization's as 'real fighters,' and start reco This was a valuable topic but it could have been done as an article, rather than entire book. I found that Dreger repeated herself, talking and talking some more, on a topic she'd already made her point on. I did, however, appreciate a quote by Mary Wollstonecraft she left us to contemplate at the end: "it is justice, not charity, that is wanting in the world." Dreger's last line is then "let us now stop referring to children who undergo massive normalization's as 'real fighters,' and start recognizing that we are the ones who construct what they are fighting against".

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