Why is the medical emphasis of this new term problematic for some?
The one piece in the nomenclature that remains highly controversial is the replacement of "intersex" with "disorders of sex development." And I'll say a few things about that. One is that intersex was big. Sometimes we wouldn't know who to include and who not to include.
"Intersex" was vague and "disorders of sex development" at least is a very medical definition, so we know exactly what we're talking about. For instance, if there are chromosomal abnormalities, if you have a patient who is missing one X chromosome—Turner syndrome—or having an extra X—Klinefelter's syndrome—both those, now wedo include them in "disorders of sexual development." They're not ambiguous. They do belong in this large category of people with "medical problems," quote-unquote, of the reproductive system. So intersex was vague, DSD is not vague.
What were some of the social issues you were trying to address?
There was another issue with the old nomenclature, which was the actual word, "hermaphrodite." "Hermaphrodite" was perceived by adult intersex individuals as demeaning. It also had some sexual connotation that would attract a flurry of people who have all sorts of fetishes, and so the intersex community really wanted to get rid of the term.
Cheryl Chase, executive director of the Intersex Society of North America (ISNA), said she has been promoting a nomenclature change for some time. Why?
People like Cheryl would say intersex issues are not issues of gender identity, they are just issues of quality of life—whether early genital surgery was performed appropriately or not, and that's really what has impaired our quality of life. She and others at ISNA do support the change because of an interesting side effect—because it becomes a very medicalized definition, the medical science should apply. It should apply strongly. That means it's not as if now we're talking about something that's not a disorder, that is just a normal variant, a condition. If it's just a condition that's a normal condition, then there is no need for medical attention.
So basically my point of view is really, let's separate the political from the medical, the science. There's a whole psychology to this, you know, the surgeons often are under the impression that there is this tiny, vocal minority of activists who just want to destroy their work.
Intersex individuals are really distinct from, for instance, the gay and lesbian community that does not have any a priori medical issue, there is no difference in the development of any of the organs, or they don't need to see a doctor when they're a newborn. I think it's quite different. Sure, some intersex are gay or lesbians, but not all are.
Why was it necessary for intersex individuals to take an activist stance at one time?
Because otherwise nothing would have changed in the practice. Otherwise this consensus conference would just not have happened. It was really in response to activism. They put the problem on the table and it required, it really forced the medical community to address an issue that was rare enough not to be addressed.
Some have called the new term a political setback, because it pathologizes what could be seen as normal human variation.
First of all, we can call normal variants everything; we can call cancer a normal variant. Of course, it kills you in the end, but it is a normal variant. We can play with words like that, but for practical purposes these "normal variants" have a lot of health risks that require lots of visits to the doctor for a bunch of issues that intersex patients have: fertility issues, cancer issues (the testis inside the body can increase the risk of cancer), sexual health issues. So if you're to start going to the doctor a lot for your condition, you can call it a normal variant, but that's not really useful. You're calling it a normal variant for political purposes. I'm calling it a disorder because I want all the rules and the wisdom of modern medical practices to be applied to the intersex field. I don't want intersex to be an exception: To say, "Um, you know, it's not really a disease," so therefore [physicians] can do whatever they want. That's what has been driving this field, people saying, well, you know, we can experiment, it's a normal variant.