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Unformatted text preview: ng of the urethra was at the base
of the phallus, not at the tip] with a single penoscrotal opening. . . .”
Using genetic tests, the authors ruled out things like 5-alpha reductase
deficiency, but the ultimate cause of her intersex wasn’t entirely clear.
Regardless, Diana definitely had severely unusual genitalia, and partial
gonadal dysgenesis seemed the likely culprit.
At her first visit, Diana talked with a psychiatrist. She claimed she
was a girl, and asked for the surgery that would make her look more
like one. However, after a little reflection, Diana changed her mind, as
did both her parents. Diana would have been their second girl, and two
girls would have been at least one too many for their way of thinking.
Everyone, including all of the doctors, agreed Diana should be a boy.
Appropriate surgery was initiated to, among other things, repair the
hypospadias. But as a result of the surgery Diana’s urethra developed
strictures and fistulas (in this case between the interior of Diana’s urethra and the surrounding tissues). Diana had to return to the hospital
multiple times for further therapy and treatment. But the family lived 154 Between XX and XY far away from the hospital, making frequent visits difficult, so it was
impossible to provide adequate psychological care. Previously an excellent student, during this time Diana’s school grades plummeted, and
eventually he simply disappeared.
Only a very few cultures are built on mythologies wise enough and
strong enough to comfortably accept intersex children. Most of us living in the Americas and Europe have no such traditions. Or maybe I
should say that most of us have only a single tradition, a myth handed
down to us from Realdo Columbus, who imagined he had discovered
the clitoris, and from the other great minds of the Enlightenment. That
myth tells us that among humans there are two—and only two—polar,
opposite sexes. Faced with a child who lives completely beyond what
most of us ever imagined possible, that simple myth is a poor guide. 9
Choices: Exploring the Options In light of the poverty of our single myth, the nature of our world, the
skills of our surgeons, and the needs of our children, what can we do?
How can we wrest the best from our lackluster and often confusing
options? The answer, of course, is that no one knows for sure. Every
child is different. But people who have spent their lives wrestling with
these questions agree on some things.
Dr. Alice Dreger has devoted much of her academic life to the study
of both disorders of sexual development and, even more important,
the people involved—men and women—not just syndromes. She has
The thing that people with intersex suffer from most is shame,
it’s not surgery. The surgeries are motivated by shame. So I think
the bigger issue is people getting the message that [people with
intersex] are not human, that they are not acceptable, that they
are not loveable. That’s a much bigger issue for everybody than
the surgery is really. Because, what people who are anatomically different need the most is the message that they’re human
and acceptable and loveable.1
Regardless of what decisions physicians and parents may face, it
seems Dr. Dreger’s words should be foremost in their minds. Though
155 156 Between XX and XY these words guarantee no particular outcome or degree of happiness,
they at least ensure that all other decisions must support this basic tenet
of humanity, acceptance, and love.
Beyond that, things become somewhat cloudy. For example, how
do we distinguish optimum outcomes from survivable outcomes? Well,
one obvious way would be to include control studies that evaluate the
satisfaction of people who did not have childhood surgeries as part of
their sex assignment. According to Dr. Dreger, no such study has ever
“Historically, what we know about people who grew up without corrective surgery [is that they seem] to have done generally OK, as far as
we can tell.
“Instinctively, it seems that it should be true [that people with
ambiguous genitalia would have greater psychosocial difficulties than
the rest of us], but it also seems instinctive that no one would want to
live as a conjoined twin.”
And that is not generally true. In fact, Dr. Dreger has found that
many conjoined twins do not wish to be separated, and many people
with intersex do not wish to be made more like other men or women.
“Just because something is statistically abnormal doesn’t mean that it’s
bad. A lot of people who have these different conditions, not just intersex, say the same thing, which is: ‘I know this is abnormal compared to
the general population, but it’s normal for me.’”
Lisa May Stevens bears out Dr. Dreger’s beliefs. Lisa May has told
me more than once that she no longer wishes she were someone else. I
have met with Lisa twice since she first wrote to me, and both times it
was clear that she revels in her chimerism, her hermaphroditism, and
the novelty of it all. In fact, though many of the people I spoke with
wished for more information, either earlier i...
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This document was uploaded on 02/04/2014.
- Spring '14