What's in a Name
Viloria responds: Unnecessary genital surgeries of intersex infants are still standard procedure even here in San Francisco, based simply on a belief that ambiguous genitalia are undesirable and should be “corrected.” (“Intersex,” for those of you wondering, describes people born with atypical sex anatomies.)
Does this mean, as last week's “Battle of the Middlesexes” [Sucka Free City, Oct. 3] misstated, that I or other intersex activists support raising intersex children as neither male nor female? No. It would be unfair to raise children as a sex that doesn't even legally exist yet. All intersex activists are trying to do is create a world in which intersex children are able to keep their bodies intact until they're old enough to decide if they want to change anything about them.
Is there debate within the intersex movement? Yes, but it centers on something not mentioned in the article (and I'm certainly not in the middle of it, having never even spoken publicly about this before). In the 2006 Clinical Guidelines for the Management of Disorders of Sex Development in Childhood, ISNA (the Intersex Society of North America) replaced the words “intersex” and “intersex conditions,” with “disorders of sex development” (or “DSD's”). Many intersex adults and supporters, including myself, felt betrayed.
What was wrong with the word “intersex” to begin with? As Cheryl Chase noted in a brochure called “Why Change the Medical Nomenclature?”: “Intersex” has been embraced by groups with a variety of social agendas not focused on improving medical care. Whether or not you support these agendas, it's confusing to label a patient's medical condition with a label that implies an agenda of radical social change. Some of these include: people who want to prove that homosexuality is a normal variation people who want to prove that transsexuality is a normal variation
While some doctors and parents are, according to supporters of the term like Chase (co-author of the DSD Guidelines and founder and director of ISNA), more comfortable referring to us as having “disorders” than associating with a label supported by homosexuals and transsexuals, I do not believe adopting a pathologizing label to distance ourselves from these groups is a solution, to say the least. Many have been calling for an improvement to the term, such as “Differences of Sex Development.”
I support the diligent work of ISNA in fighting to end nonconsensual intersex medical treatment, but I know that it would have harmed my self-esteem to be raised under a term which named my difference a “disorder.” Even complete ignorance about what to call myself was preferable as I was able to form positive beliefs about my unique qualities.
Fortunately, with increasing public awareness, intersex children will no longer grow up ignorant, as I did. The issue even made it to Oprah, and she called us “intersex” not “Middlesex” (the title of her book club selection), or anything else.
Editor's note: The writer indeed misquoted Viloria, incorrectly suggesting she believed parents should raise intersex children as neither male nor female. We regret the error.