We need to talk about IGM…

June 18, 2010

A couple of days ago, Alice Dreger and Ellen K. Feder jointly posted a brief article (Bad Vibrations) on the Bioethics Forum of the Hastings Center’s website.

The piece picked up on an earlier article, Nerve Sparing Ventral Clitoroplasty: Analysis of Clitoral Sensitivity and ViabilityPDF here – published in 2007 by Jennifer Yang (a pediatric urologist), Diane Felsen (a pharmacologist) and Dix P. Poppas, M.D in The Journal of Urology.

Dreger and Feder’s piece focuses attention on Dr Poppas, a pediatric urologist at New York Presbyterian Hospital, Weill Medical College of Cornell University whose “special interest in genital reconstruction [and] surgical aspects of disorders of sexual development” has apparently led him to carry out a program of research on 51 girls aged between 4 months and 24 years old (mean age ± SD 4.6 ± 6.8 years) in which he performed nerve sparing ventral clitoroplasty, which included “followup testing of clitoral viability and sensation after clitoroplasty“.

The followup tests involved “Poppas stimulating the girls’ clitorises with vibrators while the girls, aged six and older, are conscious” are described in Dreger and Feder’s article as follows:

At annual visits after the surgery, while a parent watches, Poppas touches the daughter’s surgically shortened clitoris with a cotton-tip applicator and/or with a “vibratory device,” and the girl is asked to report to Poppas how strongly she feels him touching her clitoris. Using the vibrator, he also touches her on her inner thigh, her labia minora, and the introitus of her vagina, asking her to report, on a scale of 0 (no sensation) to 5 (maximum), how strongly she feels the touch. Yang, Felsen and Poppas also report a “capillary perfusion testing,” which means a physician or nurse pushes a finger nail on the girl’s clitoris to see if the blood goes away and comes back, a sign of healthy tissue.

Dreger and Feder’s article has received widespread coverage online and elsewhere, with a piece by Dan Savage at The Stranger (Female Genital Mutilation at Cornell University) in particular being linked widely. (Dreger has also written a further piece – Can You Hear Us Now? – at Psychology Today)

Whilst the followup procedures of Yang, Felsen and Poppas are undeniably abusive and intrusive, I can’t help feeling that the original enforced genital mutilation carried out on the 51 research subjects is quite likely illegal as none of the subjects’ health seems to have been at risk in any life-threatening way.

In 1996, President Bill Clinton signed into law Criminalization of Female Genital Mutilation Act, which made it a crime to circumcise, excise, or infibulate the whole or any part of the labia majora or labia minora or clitoris of another person who has not attained the age of 18 years unless the operation is “necessary to the health of the person on whom it is performed.” [Via]

On this basis alone, it’s hard to see how the actions of Yang, Felsen and Poppas could even be considered legal, let alone ethical. It’s also worth noting that their research seems to have been carried out some 10 years after the legislation was enacted and it is only now, another 4 years later, that the knowledge of this ‘research project’ has moved into the mainstream public domain.

All this, of course, assumes that the children concerned were selected for no other reason than that they were available to Yang, Felsen and Poppas – but having looked more closely at the original research document, I’m beginning to wonder if these are, in fact, intersex children. Consider: the report states that the subjects had enlarged clitorises, and that this anatomical variation “is often a prominent manifestation of virilizing congenital adrenal hyperplasia and other disorders of sexual development”.

Congenital adrenal hyperplasia (CAH) is an endocrine disorder in which the adrenal glands produce abnormally high levels of virilising hormones and as such is already known to the medical profession as an intersex variation – or “disorder of sexual development”, the preferred pathologising and stigmatising term which, although preferred by the medical profession (and which Dreger was – is? – a proponent of), is objected to by some intersex activists.

It seems increasingly likely to me that, not only are we talking about a research project on intersex children, but also that that fact is being suppressed in Dreger and Feder’s article, even though it seems clear from the original report that this is exactly the situation. Which – if I’m correct in my interpretation – makes me wonder why Dreger and Feder chose not to highlight it too, and instead of focusing only on the postoperative experimentation. For what it’s worth, Alice Dreger has previously been known for her controversial views on issues of concern to both the intersex community (see this piece at OII) and the trans community (see this piece at TS Roadmap) but I can’t think what reason she might have for wanting to erase the fact that these were intersex children.

Equally, I can think of no good reason why Ellen Feder would want to do that either; she was one of the co-authors of the recent letter of concern from bioethicists, which sought an end to the off-label administration of dexamethasone (a prescription medication) to pregnant women who may give birth to girls with Congenital Adrenal Hyperplasia (CAH).

Finally, I’d really like to know why Alice Dreger and Ellen Feder have waited until now to spotlight this research document which, as I pointed out above, was first published in 2007.

I have to say that I’m completely mystified why the writers of any article detailing such shocking treatment and human rights abuses against intersex children should feel it necessary to leave out the salient fact that the subjects of the research are intersex. But one thing is clear: if we, as a society, are going to condone the treatment of intersex people like worthless lab rats and then deliberately airbrush them out of high-profile news stories about the injustices they’ve suffered, then how are we ever going to be able to start making amends for the human rights abuses inflicted against them in the name of medical science?

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ETA, June 19:

Of these patients 46 (90%) were genetic females with congenital adrenal hyperplasia, 3 (6%) were 46 XY who had undergone sex reassignment surgeries and 2 (4%) were 46 XX disorder of sexual development.

That’s from the report itself – PDF here – and not the more widely publicised abstract – link here – even though the abstract also makes it clear that intersex people were subjects in this almost eugenicist experimentation.

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ETA update, June 19: I’ve been looking at some of the trackbacks this post has received from other blogs and have seen suggestions in a couple of those links that some of the people experimented on were/are trans. At first glance, this is the obvious conclusion to draw from this phrase in the Poppas report – “[…] 3 (6%) were 46 XY who had undergone sex reassignment surgeries […]” – but I believe that it may well be an erroneous conclusion.

I don’t deny that some intersex people are trans and I don’t deny that some trans people are intersex. And I’m well aware that for some transsexual people, SRS is sometimes (though not always) one of the treatments we undergo to ease our gender dissonance (where our brains were expecting a body with a genital configuration different from that with which we were born).

However, there is also an intersex variation known as Gonadal Dysgenesis, which may manifest in various ways, and a number of medical categories have been devised to cover those variations: Complete Gonadal Dysgenesis, Mixed Gonadal Dysgenesis and Swyer Syndrome.

From the (admittedly limited) research I’ve done, I’m firmly of the opinion that the 3 individuals concerned are more likely to have one of the gonadal dysgenesis variations, than they are to be transsexual. In the context of gonadal dysgenesis, the meaning of the term sex reassignment surgeries has far less to do with the procedures carried out – with informed consent – on some transsexual people, than it does to the enforced normalisation imposed on intersex people by means of non-consensual “corrective” surgeries.

As far as I’m concerned, this is an exclusively intersex issue, and any suggestion that some of the research subjects are transsexual – although understandable – is not only incorrect, but also risks recentering the discussion in an unhelpful and distracting way.

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ETA, June 23: From The Toronto Star:

Asked by the Star why it took nearly three years for anybody to pick up on Poppas’ testing techniques, Dreger said Monday that, “You have to kind of know the code you’re reading to understand what he’s describing.”

Orly? Well, how about this?

Enlargement of the clitoris is often a prominent manifestation of virilizing congenital adrenal hyperplasia… We present 51 consecutive cases of […] clitoroplasty performed by a single surgeon… Postoperative evaluation […] included […] examination and […] sensory testing and vibratory sensory testing.

[Via]

Hmm. That doesn’t seem too hard to understand to me, but as I said in my original post, it’s the other questions which I’d like to hear the answers to.

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Previous posts on this blog in the category Intersex:

14 Responses to “We need to talk about IGM…”

  1. Ishtar Says:

    Hello Helen

    Unfortunately Dr Alice Dreger has invested a lot of time and effort in “Sexing” intersex people in a way that is arbitrary. CAH is one of a number of examples where she seems to maintain that 46XX people with CAH are exclusively female. (This is not strictly true as I know a number who are male). To give another example of Dreger’s “Sexing” according to her anyone with 5 alpha rediuctase deficency or Grades 1-3 AIS (Quigley Scale) are male and if they object to it they are “Autogynephilic or homosexual transsexuals”. (The Taxonomy presented here being Blanchards prejudiced description of transsexual people)

    Another aspect of Alice Dreger’s approach seems to be that she only shows any sympathy towards intersex people who were assigned female. “They are made into girls and grow up into angry young men” being a (Contradictory) comment she is well known for. So this absolute identification of female seems curious in that light.

    From what I can see she is either trying to distance herself from the more general practices of infant sex assignment, by criticing the activities of “Doctors” who she can criticise (For abusing those assigned female) Or she is simply re-enforcing her known agenda of only discussing cases where feminising surgery and “Aftercare” (Abuse) is involved.

    Either way it looks a lot like she is, as always, positioning herself in the discussion to further her own agenda.

    My opinion of the likes of “Dr” Poppas are actually quite simple he should face procecution and be locked up, he should face the same criminal process as any other pedophile, and not be allowed to hide behind his status as a clinican, the man is a criminal.

    OK it is nice that Alice Dreger highlighted Poppas’ criminal and perverted behavior but given that she associates a lot with clinicians who are similarly abusive and perverse in the way they treat intersex children this report on the Bioethics forum does not change the general view that she lacks credibility. It was after all Dr. Alice Dreger who gave these abusive perverts in white coats a license to abuse these children in the form of her “DSD guidelines”.

    Alice Dreger’s “DSD Guidelines” should be scrapped along with the entire “DSD” edifice she created as even she cannot now deny the disgusting consequences of her giving a “mandate” to child abusing quacks to do what they want with their pateints. And I am hoping (Perhaps in vain) that Alice Dreger if finally beginning to realise the harm she has done and just the sort of unethical psychopaths she has let loose on intersex children.

  2. Ruth Says:

    I’m not even sure I can find the words. And, do the parents of these children condone this, do they know what’s being done? Or are they told that it’s necessary and believe it, because it comes from a “medical professional” in a position of power?

    Also, we seem to hear a lot from intactivists about penile circumcision, and a lot from feminists about clitoridectomy and infibulation, but we rarely hear from either about what is done to the genitals of intersex infants and children without their consent.

  3. Tom/Ms.G Says:

    There is a widespread belief among Doctors that CAH is not intesex. Dreger and others also would deny that the most common genetic form of intersex is not that: the various forms of xxy.

    The point is that most of the people engaged in diagnosing and offering therapies, surgical or hormonal, are not intersex and have no idea what an adult intersex person eventually grows up to become. This is the most inexcusable aspect beyond the egregious cosmetic surgeries practiced on us.

    Those therapies and surgeries inevitably lead, even under the best of conditions to shame, early sexualization, mental disturbances, and emotional difficulties that can take years to overcome usually without aid or comfort from psychiatrists who are as biased and culturally bound as those committing these crimes against human beings.

  4. Helen G Says:

    Tom/Ms.G:

    There is a widespread belief among Doctors that CAH is not intesex.

    I don’t know how accurate that assessment is, but I do think that at least one very real problem is the insistence of many doctors that intersex variations be linked to a specific sex. Thus it seems to be generally assumed that people with CAH must always be female, 5ARD and 47XXY people must always be male, and so on (to name just three examples that come immediately to mind). This mindset enables the medical interventions deemed necessary to ensure that intersex people fit into one box or the other of a socially constructed amd enforced gender binary. Perhaps a more useful approach might be for the medical profession to recognise that intersex is intersex and give people appropriate, non-invasive and non-imposed support – bodily autonomy – while they decide for themselves.

    The point is that most of the people engaged in diagnosing and offering therapies, surgical or hormonal, are not intersex and have no idea what an adult intersex person eventually grows up to become. This is the most inexcusable aspect beyond the egregious cosmetic surgeries practiced on us.

    I’m not sure if you’re saying that all intersex people should enter into the medical profession, or that the medical profession excludes intersex people – each assertion would have its own problems. In the first case, not everyone wants to become a doctor, the second would be harder to prove and rectify.

    And let’s not forget that there are non intersex people and organisations who actually do carry out good work – the Pacific Center for Sex and Society, as one example, seems to have a good reputation for sympathetic and appropriate care for people with intersex variations.

    Perhaps – in addition to recruiting intersex people where possible – there’s a need for more and better education of non intersex medical professionals?

  5. AICintern Says:

    Advocates for Informed Choice is a non-profit organization advocating for the legal and human rights of children with intersex conditions or differences of sex develoment, like the ones in this story. We work in collaboration with bioethicists, doctors, parents, affected adults, and many others. If you are interested in taking action to help protect these children, and to be sure that possible human rights violations are investigated, please join our Facebook page at http://ow.ly/20wTY or sign up for our Twitter feed at http://twitter.com/aiclegal.

  6. Caoimhe Snow Says:

    Thanks for this post. I’ve linked to it.

  7. Helen G Says:

    Thank you for linking – you’re more than welcome to leave the URL for your post if you like!

  8. spiralsheep Says:

    Thank you for this post.

  9. Topsy.com Says:

    […] This post was mentioned on Twitter by . said: […]

  10. Astrid Says:

    Thanks for this post. It sheds so much light on this very complicated violation of bodily autonomy and integrity. I first learned of this research through someone who commented about the sexual assault that the clitoral stimulation essentially is. Now, I learn that not only this, but theere was no medical indication even for the surgery except that our society merely recognizes the sex binary. This makes it all the worse.


  11. […] FROM: https://birdofparadox.wordpress.com/2010/06/18/we-need-to-talk-about-igm/ ________________________________________ June 18, 2010 A couple of days ago, Alice Dreger and […]

  12. Tom/Ms.G Says:

    Someone has asked why this has not been reported to Child Protective Services in New York as at least an ongoing potential abuse.
    It should also be reported to the police or any other agency responsible for investigating criminal abuse of children.
    There’s plenty of justification for doing so. There are many threads online discussing and mostly raging about this but we’ve seen no effort to report it.

    A friend of ours has reported to several agencies but not the state of New York which would be the first agency of choice. We assume that at least some of the posters here live in that State and will post the links to this research to the appropriate authorities.

    This should be the start of another major push to end all surgeries and hormonal therapies aimed at supporting a binary position rather than the welfare and health of infants, children, and adults.

  13. queenemily Says:

    there, fixed that for you:

    This should be the start of another major push to end all surgeries and hormonal therapies aimed at supporting a *nonconsensual* binary position rather than the welfare and health of infants, children, and adults.

  14. Tom/Ms.G Says:

    We missed the AIC post. This is an important link. No we weren’t asserting that all or every intersex specialist should be intersex. We were trying to suggest that intersex adults be part of all medical and ethical reviews of therapy, and surgeries aimed at correcting their perceived differences.

    There are many other questionable practices that take place in relative secrecy – where the practitioners make every effort keep parents and children in the dark about their DISORDER and prevent them from gaining access to survivor networks. Penile Hyperplasia which is surgically “fixed” by scarring and desensitizing surgeries to the penis are a case in point. Please go to intersexualite.org and read about all the variations of sex development that may or may not, at the whim of Doctors and Psychiatrists, be labeled DSD or Intersex.
    Thankyou so much for your attention and follow up from queenemily


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