Who is Intersexed? new thoughts for the new year

Yesterday, I finished the book "Intersex, for Lack of a Better Word" by Thea Hillman. I found it very thought provoking. Hillman was born with a case of Congenital Adrenal Hypreplasia (CAH) so mild it was considered borderline. As such she had "normal" female genitals and did not undergo any surgeries as an infant. She repeatedly mentioned in the book that she often was unsure whether she really was intersexed, and sometimes felt she shouldn't use the label. This presents an interesting point. Intersex in really an umbrella term used to cover a wide variety of medical conditions that have very little in common except that they all result in a body that is biologically neither male or female. While the most visible intersexuals are those, like me, who were born with ambiguous genitals and had them surgically mutilated as an infant, but this does not mean that those with more hidden conditions are any less intersexed (there are many people out there who are intersexed and don't even know it). Some women with Turner's Syndrome (just one X) do not see themselves as intersexed, yes they have unusual sex chromosomes, but they are not hermaphroditic. I have even heard of a provocative button that asks if xxy (Klienfelter's Syndrom) is intersexed since depending on how you look at the chromosomes, they could be totally both male and female, not necessarily a hermaphrodite (the same could also be said of chimeras and some mosaics). As a mosaic with a complete x chromosome and my second sex chromosome made of segments of both x and y, perhaps I also fall into this category. In short, biology does not determine who is intersexed, people (usually doctors) do. It is doctors who decide which bodies are so ambiguous that merit medical intervention. It is often this shared pathologized experience, with repeated examinations and often losing all sexual sensation due to surgeries, that brings intersexuals together to find support and form an intersex community and movement. However this is not always the case. Some intersexuals (like those with Complete Androgen Insensitivity Syndrome) appear normal at birth and are not mutilated, so how do they fit into this paradigm of community through shared experience? Hillman points out that we all have different experiences, resulting in different emotional issues that affect our identity. Some intersexuals have more in common with the fat acceptance movement (both are told they are not attractive and encourage to change themselves, but feel fine the way they are). Others are emotionally more similar to those with disabilities (both are in world built around assumptions and expectations that they physically cannot meet (heterosexual intercourse, in this case). Also, many intersexuals are psychologically very similar to sex abuse victims (both had others preform invasive acts on their genitals without their consent). So, what is intersex and who is an intersexual? Like all questions involving identity politics, you will get many different answers. I think the best answer is an intersexual is someone born with a condition that makes them not fit into societies catagories of male or female and who chose to take on the label of intersex as a part of their identity and want the community and support that goes with it.

Identity v. Disorder

Today, I want to talk about a disappointing new phrase that is being spread around, and has even been endorsed by the usually enlightened Intersex Society of North America. This new expression is Disorders of Sexual Development or Disorders of Sexual Differentiation, commonly referred to as DSD. DSD is supposed to replace intersex, hermaphroditism, and pseudohermaphroditism in clinical nomenclature.

I find calling intersex a disorder to be highly offensive. Most intersex conditions are not life threatening, or debilitating. The birth of an intersex baby, however, is regarded as a "social emergency." The only real disorder intersex creates is a social disorder. Society has no category to put us in or roles to give us, so we are forced into one of their two boxes (usually female because, to quote one surgeon, "Its easier to poke a hole then to build a pole"). Intersex conditions are not like Down Syndrome or Spina Bifida where they will need special medical treatment and may not have all of the abilities of their 'normal' peers. Instead, intersexuality is a problem with identity.

Many pathologized conditions have unintentionally create a sense of unity and proud identity for those diagnosed, for example deaf culture which does not view deafness as a disability, just that different experience then most. The similar medical treatment and social experiences give them an identity and a strong sense of unity. Intersexuality is no different, already the intersex movement has banned together and has put increased pressure on the medical establishment to change their policies. Granted, some intersexuals do consider themselves to have a disorder or birth defect, however I think this is sad. They are buying into the belief that they are wrong, and cutting themselves off from a potential source of support, all because society has a problem categorizing them.

There is also a very real concern amongst some intersexuals that labeling them as disordered is a form of eugenics that could potentially result in an intersex genocide of sorts. Studies have shown that 96% of parents who are told their fetus has some form of genetic disorder will choose to terminate the pregnancy. I think this concern is a long ways off from actually happening, however it is not inconceivable. Current medical practices towards intersexuals already are not aimed at improving the child's quality of life, but rather at relieving the homophobic and transphobic anxieties of parents.

Intersexuals are already pathologized enough, what we need is less medical intervention, and more open, compassionate minds.