Monday, September 28, 2009

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.


  1. Great OP/Ed yo've hit the nail on the head.

    Just a couple of thoughts.

    Intersex is all that needs to be said. Think of it as being white or black. So people are not whitules or blackules or blacked or whited.

    So Intersex : not Intersexed or Intersexules. and we are not Intersex Disorders as you rightly note. Some however are inclined to say we are Intersex Conditions. This is equaly problimatic as it likewise tends to pathologise diference. So we are Intersex and that is a diference or a variation just as being white or black is.

    Thanks again for a great article.

    Warm Regards


  2. Hi,

    Friendly point of correction about what you say about deaf people: No, it is not the "similar medical treatment" that gives us an identity or sense of unity, what does give us this identity is our LANGUAGE and COMMUNITY. For Deaf community members in the United States, this is American Sign Language, in the UK this is British Sign Language (no, not the same at all, in fact ASL and BSL are from completely different sign language families because ASL belongs to the French Sign Language family, not British), in Costa Rica this is LESCO (Lengua de Senas de Costa Rica), and so forth. Although there are many disability communities -- and I belong to more than one, having more than one disability myself aside from being Deaf -- the Deaf community is still relatively unique in that we have needed to create an entire language to enable ourselves to communicate, and language is itself a huge factor in identity and unity. So even though I do very much embrace my identification with the wider cross-disability community, I do also still see the culturally Deaf signing community as being distinct in that regard.

    Also, many Deaf people who have a sense of cultural and linguistic identity through signed language often use a capital "D" in "Deaf", and use lower case d to refer to the audiological condition of being deaf, or to refer to deaf people who might not sign and do not identify themselves as being a part of the wider signing, culturally Deaf community.