The Cutting and the Vibrators Continue

11 Nov 2015

This is an excerpt from a manuscript version of Galileo's Middle Finger. A lot of this got cut when we shortened the book by about a third, so only a part of this appears in the published book. I'm putting it up now because a colleague of mine just attended a talk by Dr. Dix Poppas to parents of children with CAH, a condition that can cause intersex development in genetic females. In that talk, he talked about his work, indicating clearly he is still offering and doing clitoral "reduction" surgeries for girls whose clitorises he thinks are "too big," and still is apparently doing post-surgical "follow-up" genital stimulation of what's left of those girls' clitorises.

In the recent talk, he apparently also took credit for my departure from Northwestern University, saying it happened because I had criticized him and had gotten "too close to the sun" in challenging his practice. (Poppas likes Greek mythology. His yacht is named Prometheus. He sometimes shows a picture of it when he gives talks to colleagues.) Until the dean who censored me at Northwestern University, all of the deans had protected my academic freedom.

This section discusses what occurred in mid 2010.

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I could not shake the sense that I had made a royal mess of things. And as if things were not complicated enough, the same month, another problem came on my radar, another I felt we could not simply ignore. Throughout the last few months I had been back in close contact with my old intersex activist colleague Janet Green, a middle-aged patient advocate herself born with CAH and atypical genitals, a long-time critic of Maria New’s practices. In that late spring of 2010, Janet said to me on the phone one day, “Listen, I’m thrilled you’re working on dex, but I hope when you’re done with that, you’ll turn your attention to the vibrators.”[i]

I joked to Janet that I was always happy to turn my attention to a vibrator, but asked what she was talking about.

She explained to me that Dr. Dix Poppas, the pediatric urologist at Weill-Cornell who happened to be Maria New’s favorite go-to guy for clitoral reduction surgeries (“clitoroplasties”), had been doing a particular kind of follow-up exam on the little girls whose clits he had cut down in size for “social” reasons. He was doing this particular kind of exam to prove that critics like Janet and me had nothing to worry about what these surgeries were ultimately doing to the sexual sensation of the girls.

Basically Poppas would take little girls, aged 6 and up, whose clitorises he’d earlier surgically shortened for psychosocial reasons, and have them come in for a follow-up exam involving what he called “clitoral sensory testing.” He’d make them lie back on an exam table, fully conscious, while he brushed these little girls’ inner thighs, labia majora, labia minora, vaginal openings, and clitorises with a cotton-topped swab. While he did this to them, he’d ask them to report on a scale of 0 to 5 how well they could feel his stroking. Then he’d do the same with a medical vibratory device—a little electric vibrator: vibrate the little girl’s inner thigh, vibrate her labia, vibrate her clit.

Janet’s not sloppy, but I was pretty sure she must have this wrong. He’s doing what now? Janet pointed me to the paper where all this was published, in the Journal of Urology, in 2007.[ii] And there it all was. Explained just so, in stiff medical prose.

You’d think by this point nothing in intersex care could make the top of my head blow off. This did. It probably didn’t help that my head was full of high-pressure steam from the dex mess. I called a phone meeting of Janet, Ellen, and Anne-Tamar-Mattis, JD, a California-based legal advocate for intersex rights and for several months now a key colleague in the prenatal dex work. (Anne had sent her own legal analyses to the Feds to back up our letters, and had also arranged a group letter from adults with intersex.)

Anne, Janet, Ellen, and I all understood that what Poppas was doing amounted to part of the same abusive research system as prenatal dex, including in that Poppas appeared to have no advance IRB approval to be doing these examinations that were quite clearly designed collect data to prove to critics like us that his clitoroplasties were low risk to a girl’s sexual sensation. A funny historical quirk of IRB rules means that most surgeries, no matter how experimental, are IRB-exempt, but this kind of post-surgical data-gathering on conscious girls, with the intent of producing quantitative data of the kind Poppas published in the Journal of Urology, seemed to call for IRB oversight. The journal article indicated only that Poppas had gotten permission for “retrospective chart review,” i.e., to report what he’d already done to the girls and recorded in their charts. There was no sign he’d gotten advance IRB and IRB-mediated parental permission to do this kind of data gathering. Why did advance IRB approval matter to us? Not just because that was the ethics standard for how research should be conducted. If Poppas had bothered to ask IRB permission in advance, somebody on the Cornell IRB might well have told him these exams were morally unacceptable, no matter how scientifically interesting he might find them. At least we liked to think so.

At the end of May, I had to fly off to my old friend Paul Vasey’s university in Lethbridge, Alberta, for a small international conference on sexual orientation research Paul had organized. Between the AJOB mess and the question of what to do about Poppas and the vibrators, I felt a near-constant nausea, and the jetlag didn’t help. I brought to the meeting’s sessions a quilt I’d been working on for a friend, and stitched away at it while sitting near the edge of the room, feeling rather like a sullen Madame Defarge. It didn’t help that I kept thinking over and over about one thing: the place where Poppas performed these surgeries and his follow-up stimulations was the New York Presbyterian Hospital—the very hospital where Poppas’s predecessors had amputated Bo’s clitoris.[iii]

There were only about forty people at this meeting, and I knew about half of them from work past. My friend the UCLA physician-researcher Eric Vilain was there, and at some point I thought I’d better tell him about the “clitoral stimulation studies,” even knowing that he was probably still having the crap beaten out of him for asking Maria New the question about informed consent for prenatal dex in Miami, five months earlier. I told Eric and Ken Zucker about Poppas at the same time. (Ken was a child psychologist who worked on children with sex and gender anomalies at the Hospital for Sick Children in Toronto, and the editor of Archives of Sexual Behavior who had published my Bailey article.)

Ken and Eric both simply could not believe it. So on my computer I pulled up the Journal of Urology article, and emailed them each a PDF. Ken—part of the old intersex establishment, hardly a radical—skimmed it and then made a notable gesture with his hand on his forehead, and said to me, in his characteristically dry tone, “Um, I would say this is not developmentally appropriate.”[iv] Meaning you don’t introduce little girls to their clitorises by stroking them and asking if they can feel you.

For his part, Eric characterized the story as a nuclear bomb.[v]

“I know,” I answered, glumly. Like we needed that, after the conventional weapons used on dex had caused quite enough collateral damage.

Nevertheless, these girls deserved someone to say “stop it.” If I said this aloud this to Ken and Eric, I don’t recall them disagreeing, and Janet, Ellen, Anne, and I knew we would have plenty of company in believing these exams to be white-coated versions of sexual assault on children. When I told him about it, another one of my pediatrician friends called it just that—sexual assault, albeit billed to insurance. So I wrote with Ellen another piece for The Hastings Center’s online Bioethics Forum, this one called “Bad Vibrations.”[vi] Anne prepared legal letters to the various individuals charged with protecting subjects at Cornell and at the federal level. And I called Dan Savage, the sex advice writer and LGBT advocate, and asked him to help us out.

Dan could, I knew, position this story to really matter nationally. In our phone call, Dan made clear he was fully committed to doing so. I explained to him how we needed this one to keep leveraging the dex story as well, to keep it from getting buried as an internal controversy and put away, now that McCullough et al. had marked us as not worth believing. Various journalists had started to look into dex, but none of them had bothered to write it up. Maybe with this—with a pattern of abuse of this population at Cornell—we get some journalistic light shone.

On June 16, 2010—right about the middle of the calendar year that I still was thinking couldn’t get much worse—Bioethics Forum published “Bad Vibrations,” and Dan Savage pushed it hard for us. What none of us expected was what followed: the blogosphere exploded with the news that culturally-motivated female genital cutting was going on in the United States, something we’d, uh, been talking about for the last fifteen years? The surgeries themselves became “the story,” with the stimulation studies as an occasional tack-on. It became plain to me then that the way the audience of the U.S. press thinks is that if you’ve exposed an outrage like cosmetic genital surgeries performed on infants, and they’ve heard of it, it has ended. That’s why they were shocked to hear about the surgeries still going on. I just about wanted to impale myself on my car key.

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That ends the excerpt. As I mention in the published epilogue, "Cornell successfully argued to the Office for Human Research Protections (OHRP) that Poppas's work should not be of concern to them because it was not federally funded and because he was supposedly doing the genital stimulation tests as part of 'normal' medical care....In 2014, Poppas was voted one of New York Magazine's Best Doctors."

If you have questions about all this--the cutting, the vibrators--I probably answered it here: https://www.psychologytoday.com/blog/fetishes-i-dont-get/201006/can-you-...

 

[i] Janet Green reviewed and agreed with my representation of this conversation on October 26, 2012.

[ii] J. Yang, D. Felsen, and Dix P. Poppas, “Nerve sparing ventral clitoroplasty: analysis of clitoral sensitivity and viability,” Journal of Urology, vol. 178, no. 4, pt. 2 (2007): 1598-1601.

[iii] See Elizabeth Weil, “What If It’s (Sort of) a Boy and (Sort of) a Girl?,” The New York Times Magazine (September 24, 2006), at http://www.nytimes.com/2006/09/24/magazine/24intersexkids.html.

[iv] Ken Zucker reviewed and agreed with my representation of this conversation on November 7, 2012. Shortly after I told him about the “sensory testing” exams, Zucker gave me permission to quote him saying, “Applying a vibrator to a six-year-old girl’s surgically feminized clitoris is developmentally inappropriate”; see Alice Dreger and Ellen K. Feder, “Bad Vibrations,” Bioethics Forum (June 16, 2010), at http://www.thehastingscenter.org/Bioethicsforum/Post.aspx?id=4730&blogid....

[v] Eric Vilain reviewed and agreed with my representation of this conversation on October 24, 2012.

[vi] See Dreger and Feder, “Bad Vibrations.”

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