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Sidelining Intersexed People

Recently there was an article posted at the LA Times, Medical Treatment Carries Possible Side Effect of Limiting Homosexuality, on a treatment for congenital adrenal hyperplasia (CAH). CAH can cause heart problems newborn children but like most genetic conditions, CAH has a range of effects not nearly all of them fatal. However, the focus of the article, as you may glean from the title, does not deal with the potential fatal aspects of CAH complications and instead focus on CAH's most identifiable (and common) trait, that is affecting genital development, as well as sex hormones. This latter trait folds nicely into into popular discourse on the causes of homosexuality (reducing it to biology and thus pathologizing and medicalizing non-heterosexual orientations). The ethical debate on trying to regulate sexual orientation is central to the article and for good reason. However the article completely de-legitimizes intersexed individuals. The article begins with:

"Each year in the United States, perhaps a few dozen pregnant women learn they are carrying a fetus at risk for a rare disorder known as congenital adrenal hyperplasia. The condition causes an accumulation of male hormones and can, in females, lead to genitals so masculinized that it can be difficult at birth to determine the baby’s gender."

So to start the article is de-legitimizing intersexed individuals by placing everyone in a male/female binary and as an added bonus conflates sex with gender. I don't know about you but I find it hard to determine any infants gender, they generally are not able to express their gender identity at that time (unless drooling counts). This particular bit of fail is throughout the article but it is not the worst part of the article.

What is most telling about this discussion is the fact that the article does not mention any of those potentially life threatening implications of CAH until about halfway through. Until then it is solely about genitals and sexual orientation. The heart conditions are the afterthought, the juicy story is the freak-show. Even after the potential life threatening implications are addressed the focus shifts back to genital “abnormalities.” The fatal complications of CAH are not always present. CAH complications can result in those conditions but as a rule it does not and in fact it is common for CAH to be managed. It is severe and undiagnosed CAH conditions that are often fatal. However, if the article was focused on the potentially fatal aspects of CAH complications and the treatment was targeted to children with CAH that may potentially develop fatal heart conditions or other fatal conditions associated such as salt wasting, it would be a different story. The problem is the genital "abnormalities" are framed as just as concerning (if not more so) as those fatal heart conditions (which are hardly mentioned and as be managed). CAH more often manifests non-fatal ways, but in apparently disturbing ways according to strict adherents to the sex binary.

"The excess presence of the male hormone testosterone in the womb has little effect on a male fetus' genitalia. Even in females, the anatomical defect may be mild, involving nothing more obvious than a slightly enlarged clitoris. However, in severe cases, girls are born with male-like sexual organs although they usually have ovaries and a uterus."

So a slightly enlarged clitoris is a "defect" and should be under the purview of the medical establishment to regulate, let alone any more “severe” cases (which can be "severe" only in relation to genitals, not potentially fatal infantile complications) that fall way outside many people’s expectations and must be dealt with on the spot to protect the binary. They mention people who advocate for the rights of intersexed individuals and actual informed consent of those affected:

"The treatment of such disorders has long been the subject of debate. Early surgery to assign a child's gender is controversial, but prenatal treatment for congenital adrenal hyperplasia is even more alarming, said Anne Tamar-Mattis, executive director of Advocates for Informed Choice. She adds that the complicated surgery carries risks, including infection and nerve damage, and that parents may not be adequately counseled beforehand. The group favors allowing children born with intersex conditions to participate in decisions about their gender identity, including delaying a decision until adolescence."

Even this paragraph that talks about the controversy of early genital surgery focuses on the complications that can occur, and should require consent, and less on the ethics of altering “abnormal” genitalia at all without consent. Only a sentence about giving intersexed people the ability to make that decision. I suspect were there no potential complications in early genital surgery then the article would not even have mentioned any controversy, because in their frame there would be none; genitals need to be "fixed" and only how you go about it may be concerning. Surgical complications had to be addressed, as this new non-surgical procedure is touted as a safe alternative to risky surgery in the rest of the article. As a result only one cursory sentence, concerning the rights of intersexed people to exist on their own terms, survives and then the article moves on and it is ignored. That quote, which I’m sure was cherry picked and taken out of context, is telling of what is not part of the ethical debate here, the possibility of accepting sexual variance.

The ethical debate in the article is all about this new procedure being used to affect the future sexual orientation of a child. This is definitely a huge ethical issue and needs attention and criticism so that is not seen as acceptable. However treating genital “abnormalities” is seen as an end in itself and not part of the ethical debate.

"Any treatment can be misused. That could happen here. But this is not the focus of the treatment. The focus is to make surgery unnecessary."

Surgery to “fix” genitals is not a misuse of this treatment. The focus of this treatment is whats is disturbing, it is not addressing infants who may have a fatal heart condition, that is an afterthought (and largely not the concern of CAH for most). The real issue is erasing intersexuality and anything outside the binary of male/female. Sex and, by their extension, gender variance are fair targets of medical management. The fact that the focus is on genitals clearly shows the obsession with sexual and gender binaries and the conflation involved. The controversy almost completely centers around sexual orientation not genital variance. Altering (or potentially altering, I won’t get into that) a child’s sexual orientation is seen (rightfully so) as controversial, but “fixing” intersexed people is taken as obvious. This is problematic for anyone who stands outside a sex or gender binary, gender because sex is seen as an ultimate binary which completely determines gender. In this way sexuality can be still confined to a binary and further serves to marginalize many non-binary identified individuals.

This type of debate clearly affects people who are sex or gender variant. What thoughts do others have on this article? Ideas for responses? Perhaps this type of debate has already affected you personally and would like to share? Comments are welcomed with open arms; this is your space!

(I may later on write a blog post reviewing books that deal with positive ideas of sex, and queer diversity from a biological standpoint. Books I have in mind are Evolution's Rainbow: Diversity, Gender, and Sexuality in Nature and People and Between XX and XY: Intersexuality and the Myth of Two Sexes.) -B

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