a defense of DSD

By far the most controversial topic in the intersex community is the term disorders of sexual development (DSD), an expression that gained much legitimacy when it was used by the Intersex Society of North America (ISNA). I, like most activist intersexuals hate the term and the use of the word "disorder." That being said, ISNA does have a good defense of its use of DSD on its website. Since I am as fair and balanced as Fox News, I have posted that defense for your reading pleasure:

Over the past year, we have begun to use the term “disorders of sex development,” or DSD, in place of “intersex” in these contexts. It’s not our intention to make intersex an entirely medical issue. But we are addressing people working in a medical context. We have found that the word DSD is much less charged than “intersex,” and that it makes our message of patient-centered care much more accessible to parents and doctors. Our aim is to meet them where they are.

Intersex itself is not a disorder, rather a variation. But Congenital Adrenal Hyperplasia, for instance, is an inherited disorder affecting adrenal function. Many women with Androgen Insensitivity Syndrome have become comfortable with the term AIS, which is based on “syndrome.” But “syndrome” is a pattern of symptoms indicative of some disease or disorder. “Disorder” refers to the underlying cause, not intersexuality itself, and certainly not to the whole person.

That said, there is so much more to intersexuality than the medical context. ISNA certainly doesn’t mean to tell intersex adults or support or activist groups what language they should use. If “intersex” is working for you, by all means use it!

We have found that the word “intersex” means many different things to different people. And sometimes it means different things at different moments to a single person! This makes it hard for parents and doctors to really hear what we are trying to say: that all children deserve to grow up free of shame, secrecy, and unwanted sexual surgeries.

The word “Intersex” was not invented by ISNA. It has been used in medicine since at least 1923 to refer to individuals with atypical sex anatomy. But we’ve seen it used with a variety of meanings by doctors, including these:

* there is a question about what sex to assign (so after a sex is assigned, is the child no longer intersexed?)

* there is ambiguity about the “true” sex (itself a problematic notion)

* there is a discordance between any of the sexual characteristics, including genital appearance, gonadal histology, internal reproductive organs, chromosomes

* there are ambiguous genitalia now (thus we have seen some doctors refer to patients after genital surgery as “formerly intersexed”)

* a synonym for the older terms based on hermaphrodite

And, since the advent of intersex activism, some new meanings have arisen, including these:

* an experience of gender identity (obviously very personal, and differs from person to person)

* a political identity (also differs by person and over time)

Parents and doctors are not going to want to give a child a label with a politicized meaning. Nor should they. People born with atypical sex anatomies grow up to have many different kinds of gender identities, and no one can predict for sure what gender identity any particular baby will grow up to have. So it doesn’t make sense to label a child’s anatomy with a term that implies a particular gender identity. Furthermore, many adults born with intersex conditions reject the label “intersex,” some because their experience of gender is typically male or female, some because the word labels the whole person rather than a particular aspect, and probably for a variety of other reasons.

Intersex activist Emi Koyama writes about more of the ways that ‘intersex’ interferes with communication. We share her experience that media, time and time again, want to talk to us only about people who were “assigned the wrong sex,” an important but extremely narrow aspect of what’s wrong with the traditional medical model.

As we were working with adults, parents, and doctors to create documents that provide a detailed explanation of patient-centered care, we came to the conclusion that a medical term would be the easiest way to communicate about medical care, and we began to use the term “DSD.”

Since we began to use “DSD,” we have found many more doors open to us. We are now able to have discussions with doctors in which they begin to understand that paralyzing shame can be a worse outcome than gender dysphoria; that a person may have an atypical gender identity without experiencing that as a problem; that people with gender dysphoria can transition and do very well. The handbooks have found a grateful audience with doctors, parents, psychiatrists, social workers, psychologists, and genetic counselors. We are sure that this information will help medical professionals and parents feel more comfortable and do a better job of caring for children born with intersex conditions.

The fact that intersex people are speaking out is still a very new phenomenon. ISNA’s thinking, our use of language, and the focus of our work has evolved since our founding in 1993, and they will surely continue to evolve.

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.