14 perhaps only people who are dissatisfied with

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Unformatted text preview: and their physicians. But again, these conclusions are mostly based on assumptions, not long-term studies. Still, on the whole, these studies appear to suggest that many people who have undergone sex-clarifying or sex-changing surgeries as children have become contented adults, regardless of the sex assigned to them. Or so it would seem. Dr. Alice Domurat Dreger is associate professor of Clinical Medical Humanities and Bioethics at the Feinberg School of Medicine at Northwestern University in Chicago. She is a historian and bioethicist who specializes in what happens to people born with “socially challenging anatomies”—conjoined twins, dwarfism, people with severe craniofacial anomalies, and people with disorders of sex development—people whose appearance might make some of us feel uncomfortable. Dr. Dreger has worked extensively with people from the Intersex Society of North America as well as individual men and women with intersex. She has met many people who, as children, had surgeries intended to make their genitals appear more typical. “I suspect there must be happy people out there, but I’ve never met one,” Dr. Dreger says. “Well, literally, I’ve met one. I should have met more by now if, in fact, the numbers were anything like the reports say they are. I should be hearing from lots and lots more people who had surgery as children and are happy, and over twelve years of this work I’ve heard from one person who had a vaginoplasty as a child who is happy with it.” Maybe Dr. Dreger has simply been unlucky enough to meet only unhappy people. After all, the studies done at Johns Hopkins University Hospital involved the largest number of people of any published reports so far, and those investigators reported that a majority of people who had undergone surgical sex assignment as children were generally happy with the results of their surgeries and were well-adjusted adults. And there are thousands of people out there who have undergone geni- 138 Between XX and XY tal surgeries to normalize their appearance. Because of her extensive involvement with intersexuals, it seems like Dr. Dreger should have met some of those happy people. A similar discrepancy arose between the data from a study done in Great Britain and people in support groups. The research project was carried out at St. George’s Hospital Medical School at the University of London and the Middlesex Hospital in London, and it involves the outcomes of interviews with eighteen women born with congenital adrenal hyperplasia. Congenital adrenal hyperplasia results in overproduction of several hormones, including androgens. That sometimes causes 46,XX baby girls to develop enlarged clitorises and labioscrotal folds that don’t quite make either labia or a scrotum. All of the women in this study were assigned and raised as females. Some (the authors don’t specify exactly how many) had had genitoplasty to “feminize” their genitalia. The researchers’ conclusion was that “women with congenital adrenal hyperplasia are psychologically well adjusted and do not show substantially increased psychiatric disorder or deficits of social adjustment compared with population data.”13 However, Melissa Cull, a woman with congenital adrenal hyperplasia, sees things differently. “Although I am glad that the small cohort of women in the paper had good outcomes, support groups tend to hear a somewhat different story.14 Perhaps only people who are dissatisfied with their treatments come to support groups—though going by the rarity of the condition and the comparative number of members it shows that many are, not surprisingly, dissatisfied—but we do get people who are satisfied as well.” Ms. Cull goes on to describe how many support group members report major depression and stress, particularly with relationships, sexual difficulties after surgery, and weight gain due to steroids. “Non-disclosure [i.e., doctors not revealing full medical histories to their patients], shame, secrecy, and stigmas attached to having ambiguous genitalia, and intersex condition, and surgery to ‘normalise’ all place a heavy toll on woman’s psychological well being,” says Cull. “Many women with congenital adrenal hyperplasia avoid social situations, Outcomes 139 frightened that people will find out they have a rare, misunderstood condition.” Like Dr. Dreger, Ms. Cull has met a few satisfied customers, but too few if one believes the published data. While Dr. Dreger’s and Ms. Cull’s evidence is anecdotal and not the result of large systematic studies, their stories are based on broad personal knowledge of individuals with intersex and the problems they face. But there are two studies out there that support both women’s personal experiences. Concern About Clitoroplasty In 2004, a group of scientists working at University College of London Hospitals questioned and examined six women who had congenital adrenal hyperplasia and had undergone clitoroplasties as children, though in some patients it appeared that clitoral reductions may have more nearly approximated clitorectomies. The researchers found that all of the women had abnormal sensation in their clitorises, including abnormal responses to heat, cold, and vibration, and all engaged in intercourse less oft...
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This document was uploaded on 02/04/2014.

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