Why is ISNA using "DSD"?

Founded in 1993, the Intersex Society of North America has always had reforming medical care for children with intersex conditions as one of its cherished goals. In our early years, ISNA also served as a support group for adults. When we incorporated, in 1999, we determined to focus our work primarily on medical reform. That means that much of our communication is created with parents and doctors in mind.

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.

What is a “disorder”?

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.

What about “intersex”?

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 encourage you to have a look at the wonderful essay on DSD, but Intersex too, by Sherri Groveman Morris (founder of the Androgen Insensitivity Syndrome Support Group US and a former member of ISNA’s board of directors).

What does “intersex” mean?

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.” The diverse group of people came together as the Consortium for the Management of Disorders of Sex Development, and produced a handbook for doctors and a companion book for parents. Please have a look at these books, available free online at http://www.dsdguidelines.org.

What has DSD done for us?

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.