Unformatted text preview: and their physicians.
But again, these conclusions are mostly based on assumptions, not
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
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
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
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
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.
- Spring '14