What's Changed in the Care of Children with Atypical Sex?

Every year seems to bring another request by another bioethics textbook publisher to reprint my 1998 Hastings Center Report article on the medical (mis)treatment of people with atypical sex, “‘Ambiguous Sex’ or Ambivalent Medicine? Ethical Problems in the Treatment of Intersexuality.” That article represented the first sustained ethical critique in that field, and although it still holds up pretty well, this year in response to another reprint request I finally penned an update to be published along with it. Since I’ve retained rights to the update, I thought I’d put it up here.

Why not just create a new article? Three reasons: (1) today the medical care system for atypical sex is so in flux that it would be difficult to accurately capture the current variety of practices without that representation potentially becoming quickly out of date; (2) the ethical critiques I put forth in 1998 are still worth reviewing, even though some practices have changed; (3) the 1998 article when taken in conjunction with this 2011 epilogue may provide the reader with a sense that medical practice can change for the better through the efforts of patient advocates (including clinicians) who are attuned to evidence and ethics.

The Tale of Tea with Jim the Third

It was one of those messages I get occasionally, this time from a man who had suddenly realized we were just a few blocks away from each other. The writer's father was at a nearby Northwestern hospital, suffering from a terminal cancer.

"While trying to pass some time I went to ISNA's Web site only to discover that it was no more. [The Intersex Society of North America] basically saved my life. Wonderful people such as yourself, Cheryl Chase, Anne Fausto-Sterling, etc., have no idea how much of a difference [you made] and how many lives you have deeply affected. THANK YOU! It would be an honor meet you and shake your hand."

I offered to meet the next morning at the local tea place. And then I started wondering, as I often do with these out-of-the-blue communiqués, if this message was a fake. Was I being set up?

Footnote to a Footnote: On Roving Medicine

Why language and little groups of radicals matter.

“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.” This insight from Margaret Mead functioned as the guiding inspiration for those of us who worked for years as the Intersex Society of North America. A footnote to a recent Hastings Center Report article made clear Mead was right. And, because Mead was right, the history of social change (including in medicine) is actually significantly more interesting than it at first appears.

The Social Construction of Sex and Me

I keep running into smart people who seem to think I believe that sex “isn’t real” because it is all “socially constructed.” Allow me to correct this erroneous social construction of me by summarizing here what I think about sex and gender. I’m tempted to say “what I know about sex and gender” because there are few things I feel as sure about as this.

Testes are real. Ovaries are equally real. They sometimes make real gametes. (I don’t mean to imply they sometimes make fantasy gametes—just that they sometimes don’t make gametes.) Chromosomes and genes are also real. As anyone who’s every forgotten to wear a pad on the right day knows, menstrual blood is real. To the delight of this straight woman, penile erections are real. So are clitoral erections. I’m equally delighted about those.

When I say these are “real,” what I mean is that these things have a material existence independent of our ability as humans to notice, study, deny, politicize, or categorize them. I can’t believe I even have to assert this claim, but some academics have gone over the deep end and disagree. (I don’t hang out with such people unless there I have some form of pain killer at the ready.)

So why would I write a book with the phrase medical invention of sex in the title?