intersex

Erin Digitale did a great job writing a short story about Fixing Sex that is accompanied by a podcast interview with the fantastic Paul Costello, executive director of Communication & Public Affairs at the Stanford University School of Medicine. Enjoy!

Another review of Fixing Sex in from Feminist Review.

There’s been no shortage of debate about the change in nomenclature for intersex conditions recommended in the 2006 Consensus Statement. The debate over the new term— “disorders of sex development”—has proven incredibly heated because it is deeply, achingly personal, centering on who gets to define, determine, and label the truth of one’s life.

Ellen Feder and I have a commentary in the latest Hastings Center Report where we discuss why the issue has been polarizing and what we think the shift can—and cannot—accomplish. It’s in the September/October issue and they are making it available free online later this week. For now, it’s here.

The first review is in and it’s from Bitch Magazine. I am thrilled to bits they decided to review it and really pleased that Summer Wood, the reviewer, noted that “Karkazis never loses sight of the authentic lived experiences of intersexed people and their families. . . . Fixing Sex . . . offers a compassionately written discussion of interest to anyone concerned with gender and sexuality, health activism, and human rights.” Really, that was the point of writing the book. I was never interested in adding to some academic debate about gender and intersex. Rather, I was interested in the lives of people and I wanted to see if I could add something to the debates that would help to improve treatment. The funny thing about writing a book is that you have all kinds of ideas about what you want to accomplish with the book and how you want to sound (I suppose writerly folks call this voice). I worked on so many drafts for so long I had no idea if I had come anywhere near accomplishing what I set out to do so it’s interesting finally to hear others’ takes on the book. Anyway, if you want to read the review, it’s here.

Every week the media seem to grossly oversimplify the results of some study making claims that are just over the top. It seems high time to chronicle these. I’ll post the better ones as I find them. Here, my friends, is the cause of marital discord, covered in the esteemed Washington Post: Study Links Gene Variant in Men to Marital Discord.

Men are more likely to be devoted and loyal husbands when they lack a
particular variant of a gene that influences brain activity,
researchers announced yesterday — the first time that science has
shown a direct link between a man’s genes and his aptitude for monogamy.

There’s no time to let these results sit idly by when we can test for the so-called divorce gene:

The finding set off a debate about whether people should conduct
genetic tests to find out whether potential mates are bad marriage
prospects. Several independent scientists called the discovery
remarkable and elegant but disagreed over whether such information
ought to be used in making personal decisions about love and marriage.

Leading our race for over-interpretation is HealthDay News, which claimed “Whether a man has one type of gene versus another could help decide whether he’s good ‘husband material.’”

Heck, why stop at testing when you can move on treatment? This research, the Telegraph notes, “raises the highly speculative possibility that scientists could one day develop drugs to  target the gene in an attempt to prevent marriages from falling apart.” Speculative indeed, but that doesn’t stop them from mentioning it.

As the Brandon Keim notes over at Wired:

…the coverage isn’t just superficially faulty: it’s a fundamental misinterpretation of the findings. There’s a strong link between a gene and a social outcome, but the gene is only marginally interesting; what matters, according to the researchers themselves, are the neural networks implicated by the gene. That’s much less glamorous than blaming marital discord on a  single genetic flaw, but it’s accurate.

Today, Good Morning America profiled Eden Atwood, a singer and actress with Androgen Insensitivity Syndrome. In general, it’s a sensitive portrait (aside from the screen caption “She’s a girl…or a boy?”) in which she discusses some of the pain that resulted from how her clinicians and parents responded to her condition. A priceless moment is when the interviewer is talking to physician Charmian Quigley. As she is describing the typical anatomy of a woman with complete AIS, the camera cuts back to the interviewer and you could see her confusion, “Huh? How does that work?”AIS is one of the conditions raised when people talk about some of the problems with sex testing at the Olympics (or more generally) because there is no one physical trait that makes us male or female. This was a promo for Medical Mysteries, also on ABC, that airs tonight. You can watch a clip of Medical Mysteries here.

Last month, activists from Intersexuelle Menschen e.V., an international organization representing several intersex advocacy groups, protested outside of the Children’s Hospital in Zurich. It looks a lot like the protests ISNA organized in 1996 outside the annual meeting of the American Academy of Pediatrics. Protestors in Zurich carried signs that read ”Human rights for zwitters too.” Apparently “zwitter” is pejorative term for hermaphrodite that activists have reclaimed. (They also held a protest in Cologne in December 2007.)

On July 20th, this group, along with XY Frauen, presented a lengthy report to the UN CEDAW committee (Convention on the Elimination of All Forms of Discrimination Against Women) outlining human rights violations stemming from the medical treatment of intersex conditions. More information is here. The day before, Intersexuelle Menschen e.V. also submitted a list of demands to the the German Parliament.