First, do no harm

// 17 June 2010

[Note: I’ve changed the wording of this post because children with clitorises may not necessarily be girls. In the interests of transparency, I’ve indicated my earlier error with the strikethrough tag. My apologies for the earlier sloppiness. It seems to me this rush to classify everyone and their body parts in a binary way is part of what fuels this sort of surgery to begin with.]

A very distressing story is doing the rounds at the moment. Alice Dreger and Ellen Feder have cast a light on surgeries performed by Dix Poppas, a pediatric urologist at New York Presbyterian Hospital, Weill Medical College of Cornell University, to reduce the size of the clitorises of some little girls children, which he has deemed too big. It’s claimed that this procedure allows the girls children to “undergo a more natural psychological and sexual development”. The operations have been followed by examinations to assess whether clitoral sensation has been preserved, and these have been written up in a paper by Poppas and his colleagues, Jennifer Yang and Diane Felsen.

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. Poppas has indicated in this article and elsewhere that ideally he seeks to conduct annual exams with these girls. He intends to chart the development of their sexual sensation over time. […]

In the course of our inquiries, made in preparation for this publication, nearly all clinicians to whom we described Poppas’s “clitoral sensory testing and vibratory sensory testing” practices thought them so outrageous that they told us we must have the facts wrong. When we showed them the 2007 article, their disbelief ceased, but they then seemed to become as agitated as we were. At an international conference two weeks ago, when Dreger told Ken Zucker, a psychologist at the Hospital for Sick Children in Toronto and member of the clinical establishment, about this, Zucker said that we could quote him as saying this: “Applying a vibrator to a six-year-old girl’s surgically feminized clitoris is developmentally inappropriate.” We couldn’t find a clinician who disagreed with Zucker.

Melissa McEwan succinctly sums up how deeply problematic this is:

First: There is no such thing as a clitoris that is “too big.”

Second: The follow-up examinations to evaluate sensation, referred to in Poppas’ paper by the remarkably clinical term “clitoral sensory testing,” consist of what is, by any reasonable definition, sexual assault. […]

Human rights violations exactly like this are the inevitable consequence of a culture in which female bodies and/or bodies with variant presentations outside some arbitrary spectrum of “normal” are treated as property of someone other than the person within whose body resides the mind capable of making decisions regarding autonomy and consent, but denied that fundamental right.

For many, bodies aren’t places for people to live in and from, it seems, but objects that should fit an approved standard template. This exchange between Dreger and a surgeon in the field demonstrates this amply:

One time I asked a surgeon who does these surgeries if he had any idea how women actually reach orgasm. What did he actually know, scientifically, about the functional physiology of the adult clitoris? He looked at me blankly, and then said, “But we’re working on children.” As if they were never going to grow up.

Update:I did more digging around and found this page on the Weill Cornell Pediatrics website. It includes the following language (emphases mine):

Classic congenital adrenal hyperplasia is usually detected in infancy or early childhood. Female newborns with the salt-wasting form of CAH may make the infant appear partially or very much like a male. In girls, the most obvious sign is often abnormal-appearing genitals that look more male than female, a condition called ambiguous external genitalia. The clitoris is enlarged and sometimes looks like a penis, and the labial folds may look something like a scrotum. […]

In some infant girls who have ambiguous genitalia, reconstructive surgery may be required to correct the appearance and function of the genitals, a procedure that may involve reducing the size of the clitoris and reconstructing the vaginal opening. […] Dr. Poppas has performed over 100 of these complex surgeries.

No purpose for the surgery, other than “correcting” “appearance and function”, is described.

Comments From You

Alex T // Posted 17 June 2010 at 10:14 pm

Horrifying.

Anji // Posted 17 June 2010 at 10:28 pm

This is utterly, utterly horrifying. Surely it’s child abuse? I can’t help wondering if the parents know they have the option of not participating, because I just can’t fathom a parent who would a) allow their baby to be mutilated in this way and then b) allow a doctor to sexually assault their daughter like this. :o/

Holly Combe // Posted 17 June 2010 at 10:31 pm

This is chilling. I hoped it was a hoax but can’t find any evidence to suggest that. It’s hard to believe such a thing would exist today but there it is. Perhaps I shouldn’t be surprised.

Why on earth would a smaller clitoris allow “a more natural psychological and sexual development”? Would it somehow be “more natural” for it to be less noticeable? The only reason I can think of for a child to even be bothered about the size of her clitoris is if someone told her she should be. I hasten to add that’s not underpinned by some assumption that children are naturally ignorant about their own bodies (quite the opposite, in fact). I’m simply suggesting children are surely not born with these socially imposed standards.

Jennifer Drew // Posted 17 June 2010 at 10:45 pm

It is indeed horrifying that little girls are being subjected to male sexual violence. But do not blame the parents because accountability lies with the medical doctors carrying out these medical mutilations.

I’ve not the slightest doubt Poppas et al has told the parents mutilating their daughters’ clitorises is a recognised medical procedure.

Yet another example – one of many of how our male supremacist society demands that women’s and girls’ bodies and sexualities must conform to a pornified male-centric fantasy.

Also why is it necessary for the male Poppas to annually examine the clitorises of these girls in order to see if their organs respond ‘appropriately’ to male sexual assault!

I wonder how society would react if little boys’ penises were subjected to intrusive sexual assault because medical doctors claim it is necessary to check whether or not boys’ penises are functioning correctly when stimulated?

In the 19th century a well-known medical doctor mutilated adult women’s clitorises because he claimed their clitorises were too large!! Male control and male ownership of female bodies is nothing new but given porn is now mainstream of course little girls’ sexual organs must be ‘tidied up’ and become identical in appearance, shape, size etc.

What next? A drug perhaps which will ensure that pre-pubescent girls do not develop body hair in so-called ‘inappropriate places?’

B // Posted 17 June 2010 at 10:52 pm

Who even okayed this in the first place??

To think that such things can happen even in the direct presence of parents…

The aims are entirely baseless right from the start yet it was carried on into this extremely controversial mess!

It’s saddening to think that such atrocious acts can happen…

maggie // Posted 17 June 2010 at 11:17 pm

What the???? Shouldn’t this be a police matter? How did he get that past the ethics comittee? He mustn’t be allowed to get away with this.

A J // Posted 17 June 2010 at 11:22 pm

If what is described is actually happening, then that seems seriously appalling. How on earth could this sort of thing get medical approval?

It’s so bizarre though that I’m almost struggling to believe this isn’t some sort of horrific urban myth!

@ Jennifer Drew – it is worth pointing out that 100s of millions of young boys the world over, even in supposedly civilised Western countries, routinely have their genitals mutilated without their consent, and for no good medical reason at all. Unfortunately that is a scandal that no one in power is ever likely to address.

anon // Posted 18 June 2010 at 2:01 am

Well A J, men could speak up about it on their own….not ride the coattails on a blog about girls’ issues.

Jolene Tan // Posted 18 June 2010 at 9:02 am

On that note, let’s leave male genital cutting for another thread, please.

Sheila // Posted 18 June 2010 at 9:08 am

EVen the doctor who’s critical is mad – what the hell is a “surgically feminized clitoris”? All clitorises are feminine, surely. This is vile.

JenniferRuth // Posted 18 June 2010 at 9:25 am

This made me feel sick to read.

What is a “normal” clitoris? How can you know how it will look when the child is fully grown? Why is it more important for something to “look right” than it is for a person to have a fully sensitive clitoris?

It is severely disturbing that womens sexual pleasure is about the last thing Dr. Poppas has thought of. It is a horrible example of womens value as aesthetic objects being more important than their subjective experiences.

These people need to face an ethics committee. In fact, I’d like an explanation of how this group has managed to dodge the ethics board thus far.

Jolene Tan // Posted 18 June 2010 at 9:25 am

Sheila, I agree I found that language problematic – I don’t think ‘femininity’ should come into it one way or another. However, I also think a clitoris might well belong to someone who doesn’t identify as female, and that “very wrong” and “mad” are not the same things.

Feminaerecta // Posted 18 June 2010 at 9:49 am

This was a jaw to the floor moment yesterday. There are just so many things wrong with this its hard to know where to start. Firstly, I totally get what Jennifer Drew was saying about it being the doctors’ fault, but I still find it hard to believe that any parent would agree to this without being seriously pressurd or offered a very large amount of cash compensation. Then how the hell did the man get this through his university ethics committee? I had to appeal to four different boards when I wanted to do my dissertation involving children’s responses to promoting books in schools, and complete a CRB check and an interview with the police about why I wanted to study children’s reaction to reading, how is university still allowing this man to practice? And what the hell is a ‘feminized’ clitorus?

I spent most of yesterday afternoon being angry about this and emailing it round my friends so they too could be angry with this. I really really hope this is a hoax, and if not then those poor girls recieve all the help they need. Thank you the f word for highlighting this. This man should be struck off.

FeminaErecta // Posted 18 June 2010 at 9:55 am

This is the university’s contact form- if you have something you’d like to say to the university about this perhaps?

http://weill.cornell.edu/visitors/contact-us.html

EmilyBites // Posted 18 June 2010 at 10:32 am

Oh. My. God. I nearly lost my breakfast. Those poor children – this has GOT to be a criminal matter! It sounds like he didn’t even get the permission of the ethics oversight committee for the ‘sensory testing’.

This Dr Evil is so invested in preserving a strict gender binary that he is prepared to mutilate girls horrifically to do it…now that’s not novel, for children of any gender, but I cannot believe it has been allowed to happen like this. And that’s not even the end of it: added to the lifelong mutilation is this sickening sexual assault.

Dr Evil, who no doubt enjoys small, hairless, perfectly symmetrical vulvas in his pornography, is allowed to surgically redesign the women’s vulvas of tomorrow according to his spec, and check that they are working properly, according to him. I wonder, how much function does he consider within the acceptable range? What if the girls experience *too much* sensitivity/pleasure when this man assaults their infant genitalia? Will it be time for the snip again? Or does he prefer his little girls to grow into women who orgasm clitorally with ease? Because he may have nixed that option.

From the article:

“If the testing shows the girl has lost sensation through the surgey, her clitoral tissues cannot be put back.”

Alice Dreger and Ellen K. Feder, 06/16/2010

YEAH. So having, experimentally, for gender-phobic, aesthetic (HIS aesthetics) and clearly perverted reasons mutilated these little girls, Dr Evil would like to check whether he HAS done irreversible nerve damage. But he can’t do anything about it, because he has already cut up these little girls. And as Dreger and Feder point out, there is no control group…because who the hell would allow Dr Evil to touch their five year old girls’ genitalia with vibrators?

To get the ‘ideal’ porno look, he cuts away part of the shaft of the clitoris – and I don’t know about you but many women like that bit, use it, feel with it, come with it, and I can tell you now that if I had a Really Big Clit ™ I would probably be late for work a lot more often.

No-one has the right to force elective genital surgery on these girls to make them look like Dr Evil’s porno-perfect laydee at the expense of their lifelong psychological and sexual health. Are you listening, Cornell University ethics committee?

Charlotte Richardson Andrews // Posted 18 June 2010 at 10:46 am

Truly horrendous. Dix Poppas and his colleagues should be prosecuted for this, and legislation should be set down to prevent this crime ever happening again.

sianmarie // Posted 18 June 2010 at 10:50 am

this is just so horrific.

who is this man to define what is ‘too big’. what does that even mean?

and to use a vibrator, or to pinch a girl’s clitoris to test sensation is just so inappropriate and i imagine, disconcerting/frightening for a small child (again, as holly said that isn’t to deny children knowledge of their bodies, just to suggest about how hospitals and docs can be scary/intimidating to children, coupled with this abusive procedure).

what action is being taken by the USA medical governing bodies (is there one? sorry – my ignorance!)

what would even motivate a doctor to make these decisions? is it the influence of porn culture saying that only certain genitals ‘look correct’, is it about control, or abuse? or all three and more? i just cannot get my head around it. if there was no medical reason, and purely cosmetic – these are children! the fact is, no one, male or female, adult or child, should care or be made to care about how their genitals look, just that they are healthy.

sorry, i’m being very incoherent but i am just so angry!

Elmo // Posted 18 June 2010 at 11:04 am

Is this a hoax? Its too horrible to be real

Charlotte Richardson Andrews // Posted 18 June 2010 at 11:19 am

This has been passed on to Ben Goldacre:

http://www.facebook.com/badscience?v=info&ref=ts#!/badscience

Kristin // Posted 18 June 2010 at 11:47 am

Exactly what everyone else said. Why is this even allowed in the first place? It’s no way part of normal childhood medical examinations. It’s horrifying. This bastard should be struck off and put in jail. I hope parents can be warned about this. It is terrible.

Jilly // Posted 18 June 2010 at 12:24 pm

This made me feel sick reading it. Who are these people to say what’s acceptable and what is not as regards female genitalia? We are all different and most of us don’t look like a porn star or what some man – or woman – thinks we should look like. As long as we are healthy, what’s the problem?

I really hope the hospital gets swamped by people complaining about this guy. Who let him near children in the first place?

Lynne Miles // Posted 18 June 2010 at 1:25 pm

@Feminaerecta I will preface this by saying I am not a parent, but I imagine it would be all too easy to persuade parents to do this. The medical community has a lot of power over people and is shrouded in mystique. If the All Important Doctor in his White Coat says that your child is abnormal, needs surgery, will grow up to be a “freak”, won’t have a “normal” life or be able to have “normal” human relations… well that kind of thing can be hard to resist. I am only hypothesising, having never been in such a situation, but I can imagine a situation where if you objected you might be labelled as difficult, patronised and told you don’t really understand as well as the doctor does etc etc. My suspicion is that some parents may permit it even when they’re uncomfortable with it because they ultimately put their trust in the medical professionals to know best.

Shea // Posted 18 June 2010 at 2:18 pm

This is horrifying if its true, (although I suspect its not actually that unusual). I have heard about these operations being performed before, especially on children with “ambiguous genitalia”. It still seems awful. As others have pointed out, who the hell is he to decide what is too big? I am so keen to know how this got past the ethics committee?

There is absolutely no need to do this, we are talking about healthy, disease free tissue, since when do we excise this on the basis of aesthetics? There is no doctor in the word that would remove a patient’s healthy arm on the basis that they or their parents wanted it. This would be assault plain and simple.

This should be a matter of choice for the girls in question when they grow up, (if they decide their clitoris is “too big”). They are entitled to make that decision when they have the capacity to do so in the full understanding of what is involved. It is hard to view this as anything but child abuse.

@ Feminaerecta, I agree with Lynne Miles, I think its probably all too easy to scare parents into going along with something like this. The MMR debate just shows how much power and influence the medical profession holds and how badly it can be misused.

@ EmilyBites

“I can tell you now that if I had a Really Big Clit ™ I would probably be late for work a lot more often.”

Sheer brilliance. ;-)

sweetviolet // Posted 18 June 2010 at 3:26 pm

While reading the expanding number of articles on this I found (like Shea) that it’s likely to be being performed on children with ‘ambiguous genitals’. My first response was mild relief because it meant an ethics board hadn’t just signed off on chopping up girl’s clitorises in the name of a cultural aesthetic.

Then my brain started working properly and I realised it’s EVEN WORSE because it’s a sign of how institutionalised this treatment of people with intersex conditions is. Nobody thought to say ‘wait, maybe we shouldn’t let this guy cut up little girl’s clits’ because this is STANDARD PRACTICE when children are born with genitals that threaten the artificial gender binary. It makes me feel sick to think that it’s so normal to do this that what’s raising eyebrows in a lot of the medical community is the testing method, not the operation itself. Thank God some people are pointing out the horrible ethics of the operation too.

I am now doubly resolved that if I or anyone I know ever has an intersex child I will do everything I can to discourage or prevent this kind of normalising surgery (until the child in question is old enough and informed enough to choose for themselves). It’s completely barbaric.

(apologies if this is incoherent or poorly worded, I’m seething with anger right now)

Jane // Posted 18 June 2010 at 4:20 pm

@Lynne “I will preface this by saying I am not a parent, but I imagine it would be all too easy to persuade parents to do this. The medical community has a lot of power over people and is shrouded in mystique.”

I agree that the medical community has a lot of power but I’m the parent of a girl and I’d stuff a doctor’s bollocks down his throat before I allowed him to do that to my child.

Jeff // Posted 18 June 2010 at 6:36 pm

I nearly threw up when I read this. If I’m honest, the genital surgery I did not find particularly surprising, though I’ve not heard of it happening previously, it doesn’t surprise me that it does (though it most definetly shouldn’t!). The thing that shocked me the most was the doctor then testing sensitivity with a vibrator for god’s sake! How that could ever be construed as anything less than rape of a minor is totally, totally beyond me.

He can’t be acting alone mind, as people have pointed out this must have gone through an ethics committee. The whole lot of them should be locked up, and the key thrown away.

Kate // Posted 18 June 2010 at 6:44 pm

Sorry but this man should die with the death penalty.

I’m sick of these fucking intrusions into our anatomy!!!!

These are also children you fucking MONSTER! You deserve the death penalty.

Jolene Tan // Posted 18 June 2010 at 6:52 pm

@Kate

If only it were truly only “monsters” outside ordinary humanity who committed abuse – instead of, as I think is more likely the case, so many of our cultural attitudes about “normal” bodies and gender contributing to abusive acts being seen as perfectly justifiable, even “corrective”.

I don’t think the death penalty is a good idea – but I think we’re all in agreement on what an outrage this is.

Maddie // Posted 18 June 2010 at 7:06 pm

This is horrible.

For one, I find it appalling that they’re using ‘allows the children to “undergo a more natural psychological and sexual development”‘ (says who? based on what?) as an excuse when as a consequence to the unasked-for surgery the kid gets to have an annual Inappropriate Touching Time appointment with the doctor. Yeah. I’m sure that won’t have any negative effect on the kid’s “natural psychological and sexual development” at all, surely.

I can’t even.

Red // Posted 18 June 2010 at 8:23 pm

This case is about surgical correction of a genuine congenital birth defect. It is not much different in principle to fixing a cleft palate. We are not talking about a clitoris that is just a little bit “too big”.

The parents and doctors have only to consider what is likely to be the best outcome for the child. Going through childhood and having a significant risk of being treated as a “freak” is likely to be very traumatic.

The issue of damaging the sexual response is obviously of huge concern as can be seen my the doctors attempts to ensure that as little damage is caused as possible – and of course they will need to test the organs to see if they function. There is a question of balancing one risk against another.

Obviously this is only sexual abuse of a child if it was done with the intention for self gratification. But in fact this was probably done by a medical doctor in the best interests of his patient.

Jolene Tan // Posted 18 June 2010 at 8:57 pm

@Red

Simply having a clitoris which is different from a culturally imposed expectation is not a “birth defect”. What needs “fixing” is not a body which a child has not given informed consent to altering, but the very societal attitudes you speak of that dictate that anyone who doesn’t fit an approved standard template is a “freak”. (By the by, who exactly are these people are who are allegedly going to see this child’s clitoris in the future and subject hir to ill-treatment on the basis of its appearance anyway?)

The sorts of tests being discussed here are, according to Dreger and Feder, not widely approved by other medical practitioners. It’s difficult to understand how these tests could be necessary in the child’s best interests rather than being conducted for research purposes, since you can’t return lost sensation to a reduced clitoris anyway. Even if they were, why not sedated tests?

Assault is not identified by the intentions of the assailant; it is not dependent on the “purity” of the assailant’s soul. Whether something is assault depends on the informed consent of the person whose body is being subjected to a procedure. The fact that someone thinks doing something to the body of another is “in their best interests” is not enough to absolve them of failure to obtain informed consent. Having medical qualifications does not change that. (It’s also worth noting that many rapists would speak of their actions in precisely those kinds of “corrective” terms (“She needed it.”))

Liz // Posted 18 June 2010 at 10:20 pm

Red: “The issue of damaging the sexual response is obviously of huge concern as can be seen my the doctors attempts to ensure that as little damage is caused as possible – and of course they will need to test the organs to see if they function. There is a question of balancing one risk against another.”

Because someone clinically touching your intimate parts will neither damage your relationship to someone touching you there nor your ability to enjoy being touched? The psychological and social implications of this are horrifying, I’m surprised you can’t see it, why do you think that is?

maggie // Posted 18 June 2010 at 11:19 pm

Red

Can you imagine the impact upon a male whose penis is considered too big to be subjected to surgical reduction? Before he reaches puberty? And then to go through post surgury a test to determine whether or not sensitivity has been reduced? I think not.

No clitoris is too big. End of. And back off.

Fred // Posted 19 June 2010 at 12:03 am

1. To quote the National Center for Victims of Crime, sexual assault is “Basically, almost any sexual behavior a person has not consented to that causes that person to feel uncomfortable, frightened or intimidated.” So, like, how about when a six year old has her inner thigh, labia, and clitoris fondled by a douche of a doctor? Let’s check: Sexual? yes. Without consent? I’m going with yes. Causes her to feel uncomfortable? I’m going to go with yes again. Frightened and intimidated? I’m guessing that experience of those emotions is the only thing that got her up onto the exam table. Definitely seems like sexual assault to me.

2. So the surgery is “to correct the appearance and function of the genitals, a procedure that may involve reducing the size of the clitoris and reconstructing the vaginal opening,” huh? If I read this, I might get the erroneous idea that my genitals exist so some man can stick his dick into them! How bizarre is that? Here, I thought they existed for my own pleasure, which would, naturally, require that my clitoris remain intact. And would not require a reconstructed vaginal opening at all, unless, as a fully informed adult, I decided I wanted one.

3. A brief correction: No IRB (basically, an official ethics board) approved this research. This fact made both of the original articles by Dreger. As I understand it, Poppas chose to never apply for consent for sensory testing (aka sexual assault of a minor), probably because he knew he wouldn’t get it. He went ahead on the testing without getting approval, then went back for approval on reviewing the testing data – which is pretty easy to get, because the data already exists, so all you’re asking is to look at it. SO, he’s not in compliance. And by God, I hope he loses his license over it (and goes to jail). But somehow, I’m doubtful that this will occur.

4. The IRB did, I assume because I haven’t heard otherwise, approve the original surgery, which I believe they shouldn’t have. But my beliefs aside, I KNOW the law, and I KNOW they never should have approved the surgery without requiring that Poppas fully inform parents that the surgery is experimental and controversial – which he clearly didn’t do. They also should have noticed themselves that he wasn’t in compliance when he asked to review his own data, the collection of which they had never approved, instead of having to have it pointed out embarrassingly and at great length on the web. So, lazy, lazy IRB – they need to get in trouble too.

Swarmy // Posted 19 June 2010 at 12:33 am

First off, I feel sweetviolet is spot-on.

Certainly the post-operative “testing” of victims in this instance is unusually unpleasant, but it’s worth bearing in mind that the non-consensual mutilation of intersex (and other sex-variant) genitals is a standard procedure many countries. Fortunately the NHS has generally tended to shy away from this kind of thing during the last decade, but in the USA I believe it comes as standard.

It’s interesting that this particular case is all over feminist blogs – possibly because many of the news articles on the story class it as female genital mutilation? I believe intersex activists and allies have been fighting against the practice of non-consensual surgery on children for a long time, it’s just that it’s been a largely hidden struggle.

AICintern // Posted 19 June 2010 at 3:29 am

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.

Tina // Posted 19 June 2010 at 4:39 am

Oh God, don’t shoot me for this…

BUT. While I completely disagree with any kind of female genital mutilation (and that’s what this is, I agree), and am abhorred at the practice of stimulating the clitorises of small girls…

I am also a parent of a child who has undergone many, MANY surgeries in his thirteen months on Earth. Those surgeries were not life-saving; they were designed to ease his comfort and assist his development. I, as one of his parents, decided FOR him that his young life would be better if these procedures were carried out, and I was as well-informed as I could have been before we agreed to anything at all.

Please DO NOT, for one minute, assume that the parents who agreed to having their daughters operated on were ill-informed. Doctors in the USA are at such high-risk of being sued that they go to extreme lengths to point out any and all risks to patients and patients’ families. You must sign consent forms for each and every tiny thing done to you/your child; not only for your insurance company to charge you for, but also so you cannot turn around after the procedure and take your doctor to court. Parents in this country are very rarely, if at all, ill-informed.

I do think that parents of a tiny newborn girl with enlarged genitals are only thinking of her: how will she go swimming without ridicule? What will her high school experience be like in the changing rooms? Bodies are a lot more exposed over here than in Britain, and I’m sure parents are all-too aware of that. Yes, society as a whole needs to be more accepting of ALL kinds of bodies, but when you’re expecting your baby to look one way and she doesn’t… well… I’m just saying that I can empathise. It doesn’t mean I agree with it, but I can certainly see it from their perspective.

No, I find the stimulation testing to be the more shocking in this instance, not the surgeries themselves.

Deya // Posted 19 June 2010 at 7:14 am

I find it completely indefensible to test sensation of children’s clitorises as a developmental exercise, both in general and in this particular case of post-surgical follow-up. I say that as a feminist and as a children’s doctor. It is disturbing that this evaluation method was devised and was allowed to be implemented. Even if there was any clinical merit – and I fail to see any – the psychological impact of the tests surely far far outweighs it. To read the whole paper requires a subscription, so having read the abstract several times I still cannot understand why this methodology was adopted. Their numerical results are meaningless because thankfully there is no one routinely testing clitoral sensation in girls who have not had surgery so there is nothing to compare it with. If the ambition of the authors was to investigate what they have termed the “long-term sexual function” they could easily wait 12 years and carry out a qualitative study. If their ambition was to find out the answer to the question – does this surgery result in differential sensation in the clitoris compared to the inner thigh and other areas – again, I cannot understand the relevance of the question in a 5 year old child. The only reason I can think of to be doing this is if the surgeon was to find out there was zero sensation in the clitoris after the surgery, and subsequently used this finding to try a different approach/technique for future surgeries – but this has not been stated in the abstract, and surely the presence of scar tissue in the operated part is enough to result in sensation that is altered compared to a part of the body (the thigh) that has not been operated upon. All in all, any supposed legitimacy does not even come close to justifying the potential additional psychological harm to children who already have life-long medical treatment and monitoring to look forward to.

Another incredible thing about the abstract is it states the age range of the subjects studied was “4months to 24 years” and does not give any breakdown of the ages of the subjects who underwent the “sensation testing” and the “vibratory testing” suggesting that the authors’ assumed that their own devised ‘scale’ is so robust that clitoral sensation results from surgery as an infant are comparable and can be analysed together with results from an adult. Anyway.

Some in this thread seem to be denouncing only this particular surgeon for deciding to operate on the children’s clitorises. This particular type of surgery for congenital adrenal hyperplasia is standard for children’s urology services worldwide so there is a much wider net for this particular concern. Regarding whether this surgery should be done in the first place, as the authors of the article in the Bioethics forum have described, the jury is out. There is definitely a movement among some in the community of doctors who specialise in developmental endocrine problems which questions the necessity for surgery at such a young age.

CAH is caused by the inability of the body to make certain steroids, resulting in the genitals not forming completely in utero, as well as problems with sugar, salt and blood pressure. The problems with the sugar/salt/BP can be fatal, the genital appearance is not. The children need long term treatment to maintain their sugar and salt balance and prevent future imbalances in times of infection or stress. It occurs in both XX and XY children. The external genital appearance of children with CAH may appear differentiated if the body has some ability to make the steroids, in which case they may be diagnosed as an older child with sugar/salt/BP problems, or after asking to see a doctor for irregular periods or even as adults with subfertility. The most common form of CAH causes undifferentiated gentials in XX children and not XY children, although some rarer forms of CAH do affect the genitals of XY children who may be operated upon as a result. The operation on XX children is not only on the clitoris. The external appearance in affected XX children involves having a cylindrical shaft and fused labia, with empty scrotolabial folds or ovaries within/near the labia. CAH does not cause problems in the functioning of uteruses and ovaries. I haven’t been long in the doctoring game but I’ve come across two adult women with CAH on treatment who have given birth. Compared to women without CAH, adult women with CAH have a lower fertility rate and report a higher prevalence of psychosexual problems – which some publications explicitly suggest are due to the effects of surgery. Again, I’m no expert but I do think there is a case for giving parents the option to delay the decision for whether or not the child should undergo surgery.

Some in this thread have accused this surgeon of trying to redesign vulvas on his own self-defined terms – I know I come from a position of bias, and I am not going to defend this particular surgeon for the reasons above, and while I understand the anger towards the concept of surgery upon female genitals with the intent to conform to an arbitrarily decided-upon norm and am similarly angry at the adult cosmetic surgery industry for this reason – I cannot agree that this is the position that most paediatric urologists start from when the decision is made to perform genital surgery for CAH. It is simply not a case of surgeons wandering through maternity wards deciding to chop off clitorises that look bigger than they’d like. The types of dialogue that I have seen often starts with the parents being told they will have a baby boy on the antenatal scan, a few days after birth the baby becomes unwell, tests are done, and then parents are told that their baby has XX chromosomes, will most likely be on medication for life, and the disease has affected the genitals which is why the antenatal scan identified the baby as a boy. Or the midwife may request for chromosomal testing to be carried out very shortly after birth because the genitals appear undifferentiated, i.e. not simply a “big” clitoris but appearing like their formation has been stopped after getting to a particular fetal stage of development. Carrying this out along with salt and hormonal tests is important at this stage to diagnose a potentially fatal disease. It would be ideal to be able to reassure parents at this point that it is possible to bring up their child in a gender-binaried world for a few more years until the child is able to be involved in the decision-making regarding surgery. Some paediatric urologists claim that the surgery may be technically more difficult in older children, which is where the confusion lies. As I said before, I’d like to hear more from the specialists in the field who speak for delaying the decision for surgery.

However, having said that I don’t believe paediatric urologists cut off clitorises for their own aesthetic pleasure, I am not for one minute suggesting that the medical establishment is not saturated in the values of the patriarchy, not least including the rigid gender binary. Like others here I also hate the terminology ‘feminising surgery’. I think it stems from trying to be the opposite of another of my hated words in medical terminology: ‘virilising’. But long-established clinical terminology has fallen out of use before by being successfully challenged, and I have hope. Also, if you decide to trawl through Wikipedia for CAH, you may find something along the lines of ‘and girls with CAH are often seen to have traditionally masculine interests’, which, I probably don’t need to tell you, has questionable basis, and only goes to demonstrate how much patriarchal-coloured thinking has dominated supposedly scientific research.

polly // Posted 19 June 2010 at 9:37 am

“””However, having said that I don’t believe paediatric urologists cut off clitorises for their own aesthetic pleasure, “””

Why, do you believe that Deya, because it is impossible for doctors to be abusive? They are somehow more noble human beings than the rest of humanity and doctors never sexually assault or otherwise abuse their patients?

Yes doctors may perceive themselves to be acting on the urging of parents who want a ‘normal’ child. And yes, it’s quite common for minor cosmetic surgery (say removal of an ‘extra’ finger ) that isn’t strictly necessary to be carried out on infants.

BUT genitals aren’t an ‘extra’ finger. And yes Tina, I can understand a parent not wanting their child to be subject to uncomfortable experiences. But maybe if society was as a whole accepting that people don’t fall into strict categories and there was more awareness of issues like this, that wouldn’t happen so much. And if as adults people really want surgery to ‘normalise’ their genitals they can have it. But how is a movement towards greater acceptance ever going to happen if the medical profession enforce rigid ‘norms’. At the moment we have a vicious circle going on here – the doctors saying ‘but we’re just making the child look normal’ and thus reinforcing what normal is.

Feminist Avatar // Posted 19 June 2010 at 12:14 pm

I wondered whether Helen G had any thoughts on this from a transgendered perspective. I presume she would agree that this particular doctor’s actions and method are horrific, but more generally, there is a question here about the role of ‘treatment’ for intersex and transgendered people.

Because, we are taught that there are two sexes and we model gendered behaviour on these characteristics- and if your child is intersex and you cannot (or don’t want to) allocate them to a particular gender or sex, then how do you model behaviour for them in a gender binary world. Do you still pick a gender for your child, regardless of the ambiguity of their body? If you dont’, what happens when your child asks ‘am I a boy or a girl’? Or, what toilet should I use? What sex/ gender do you put on the birth certificate? What pronoun would you use to refer to your child- he, she or it? And, I think we would all recognise why ‘it’ would be problematic!!

Now, these are not problems that couldn’t be overcome, but when we worry so much about raising children with a secure and strong sense of self and we have no model for raising intersex children, I can understand why some parents just want to pick a gender and stick with it (at least until it becomes clear that the child does not identify with it). At the same time, it might seem that surgery allows you not to have to deal with the knotty question of what sex is your child. And, in some ways, the emphasis of the feminist movement that gender is a construct- it is taught behaviour- allows parents to feel secure in this decision. If gender is taught and you are abitrarily picking your child’s gender based on their sexual organs, then why not also pick the appearance of their sexual organs? (Other than the obvious answer that surgery is invasive, painful and potentially abusive- but then we do plenty of other cosmetic surgeries on babies).

And, I think this is where feminists need to give more consideration to the relationship between the gender, self and the body- and where we can perhaps learn from the transgender community.

makomk // Posted 19 June 2010 at 8:48 pm

Swarmy: it’s almost certainly because the news articles are describing it as female genital mutilation. The two get very different treatment – there’s enough anger over female genital mutilation that it’s a felony punishable by jail time in the US, whereas as you say the mutilation of intersex genitals is normal.

Jolene Tan: it’d help if people didn’t write comments like Jennifer Drew’s based around the idea that this is something we’d only do to girls, and that it says something about our attitudes to girls and womens bodies specifically. At best, that erases the fact that 20-40% of male kids in the US get their genitals modified to fit an arbitrary aesthetic standard…

Of course, given that we’re actually talking about intersex conditions, the division into male and female is rather arbitrary and often incorrect in itself. In particular, doctors have historically tended to declare that any baby without a sufficently good penis is female and surgeries have been carried out to “correct” the issue. (This is now somewhat discredited.) Lots of nasty history there.

Deya // Posted 19 June 2010 at 9:15 pm

Polly I agree with you that abusers can be found in any profession – I don’t know if you read the entirety of what I wrote and frankly it was quite dull/biologyy, but I agree that this Dr Poppas is one of them. But I believe that Paediatric urologists as a collective group do not seek to cut off clitorises in children with CAH for the collective aesthetic pleasure of paediatric urologists.

We all – doctors and parents – live within patriarchy and frustratingly only a few people seem interested in freeing ourselves from it. Bringing any child up unscathed by patriarchal belief systems is hard enough, bringing up a girl child with a chronic medical condition doubly so, and then, when faced with the prospect of different-looking genitals and the option of surgery, it is a tough call. Beliefs such as sex = penis within vagina, and self-confidence is linked to a particular body appearance, and everything Feminist Avatar described obviously have an enormous impact on the decision making process.

I evidently did not make myself clear enough, but I know it would go a long way in alleviating parents’ anxieties for the doctor to explicitly say at this point: Look, your child has a uterus, ovaries, clitoris and vagina and can pass urine without trouble, it is only the outward structure which is different from usual, when she gets past puberty she will be able to feel sexual pleasure as usual, and any future issues about the structural differences during penis-in-vagina ‘intercourse’ that crop up can be addressed later.

I wish this was the consensus opinion, but currently no one course of action is universally endorsed (with the whole ‘should surgery be decided upon in later life, it will be more difficult’ opinion etc).

There are, as I’ve said, groups of doctors who support non-essential (essential would be for example if the urethral passage was blocked) genital surgery being deferred until the child can be involved in deciding. So some doctors do have a version of the above dialogue. There are even some doctors who tell their patients that “sex” does not automatically mean penis within vagina. But many don’t, in the same well-intentioned but ultimately damaging way that teachers may tell you to suck it up from bullies or police officers advise not getting drunk to avoid rapists.

polly // Posted 20 June 2010 at 1:35 pm

@ feminist avatar – The intersex society of North America have devised a patient centred model for raising intersex children which recommends assigning children a gender which can be changed in later life if the child wishes.

http://www.isna.org/compare

Since anyone can disagree with their assigned birth gender, I don’t see that it’s any more of a problem in intersex individuals than anyone else. There are some intersex conditions which have larger rates than in the general population for gender transition, but many are happy with their assigned gender.

http://www.isna.org/faq/not_eradicating_gender

In practice AFAIK most places don’t have an ‘intersex’ option on a birth certificate (the UK certainly doesn’t) so a child is going to be assigned as ‘boy’ or ‘girl’ in any case with or without surgery.

polly // Posted 20 June 2010 at 4:34 pm

Also, feminist avatar, there are two other reasons I can think for not picking the appearance of sexual organs 1)sexual organs (unlike say hands with six fingers) aren’t routinely visible in public, and secondly, it may affect sexual function (which is the ostensible justification for the research described in this piece).

I’m also a bit puzzled by your assertion that feminists who believe gender is a construct would be more likely to support such surgery than others. Most feminists I know who have that belief are also opposed to unneccessary surgery of any kind. And since they don’t believe that ‘gender’ is anything to to with someone’s physical sex, but culturally imposed, there would be no reason for them to support changing a child’s genitals to “match” its assigned/preferred social gender, which they believe is merely a matter of cultural conditioning. It seems a complete non sequitur.

Helen G // Posted 20 June 2010 at 7:35 pm

Feminist Avatar: Apologies for my slow response to your comment.

I’ve been watching how this has unfolded and have been digging a bit deeper into various aspects over at my personal blog in a long (1500 words) post – We need to talk about IGM… – as there are several aspects which I’ve not seen picked up and which I feel merit some mention.

Wrt a trans perspective, well, shorter Helen: I don’t believe this is a trans issue any more than I believe it’s a cis people’s issue.

That’s not to say we shouldn’t talk about it, but that we should keep in mind that this is, in my opinion, about the human rights of intersex people. I’m concerned that some of the posts and comments I’ve seen around Blogdonia contain a lot of talk about female genital mutilation, as well as male circumcision, and also that some of the research subjects were/are trans. I’m of the opinion that these comments, although perhaps understandable, are ultimately counterproductive in terms of building alliances with the intersex community, as they seem only to continue the erasure of intersex people.

WildlyParenthetical // Posted 21 June 2010 at 10:02 am

There’s actually a substantial amount of feminist responses to the issues surrounding the conventional treatment of intersex children, feminist avatar. Like, lots! Yes, it’s predominantly in academic circles, but I just wanted to mark that it is actually out there. And yes, it’s concerned with ideas of sex, gender, and embodiment. :-)

It’s great that there’s so much indignation about this particular case, but it’s worth noting, as others have, that this is pretty standard treatment (at least in particular parts of the world). Here in Australia, the law that makes female genital cutting (and yes, I have my reasons for that terminology!) illegal is specifically phrased to permit surgery on intersex children, with a nice little bow to medical expertise.

The major problem, I think, with much of the way that intersex is treated in hospitals is that parents are often presented not so much with ‘here is your intersex child, and there are some great resources for raising them, just over *here*’, as with ‘your child is a boy/girl who hasn’t finished developing properly, and just needs to be helped along.’ (One of the authors of the piece in question, Ellen Feder, has done substantial research into parents’ engagements with medicine around intersex infants. It’s fairly clear from her research that the way that the issue is presented to parents is biased towards absolute sexual dimorphism.). In this situation, it’s particularly important to be taking the indignation expressed her, and ensuring that doctors no longer assume that *their* understanding of normal/natural (and the two blur together problematically here!) is not necessarily the only one.

And not to be all selfyself, but I wrote something about this here: http://wildlyparenthetical.wordpress.com/2009/05/02/disciplining-sex/

Helen G // Posted 22 June 2010 at 8:01 am

Feminist Avatar: I’m not convinced that this thread is an appropriate place for a discussion about certain surgeries undergone by some TS/TG people, as interesting as the subject itself may (or may not) be. Perhaps I shall write a specific post about it at a later date.

My opinion of this research study, and the coverage it has received, remains that the key issues are around the human rights (including bodily autonomy) of intersex people, and that those topics continue to be ignored by many non intersex people.

I apologise for sounding abrupt: I mean no offence to you or any other commenters here, but I’ve seen too many derails on this issue already, and am unwilling to contribute to the further erasure of intersex people in discussions around the Yang/Felsen/Poppas research document and the Dreger/Feder article highlighting one aspect of it.

I believe there are more pressing questions to ask – such as why Dreger/Feder chose this moment to write their article when the research was first published as long ago as 2007; why they have focused on the postoperative abuse aspect, to the extent of almost completely ignoring that it was carried out entirely on CAH intersex people aged between 4 months and 24 years old; why Yang/Felsen/Poppas were able to carry out this work apparently without consideration for medical ethics and quite possibly illegally (depending on who’s interpreting the legislation).

WildlyParenthetical // Posted 22 June 2010 at 2:03 pm

The thing is, Helen, I don’t think that it’s illegal, that’s why. It’s a fairly common response to a ‘large clitoris’, actually, though there are a couple of techniques, as far as I’m aware. Legally, it ‘sneaks in’ (I say that because I think those clauses – and we have them in Australia too – are actually *designed* to protect such surgeries) under ‘medical necessity,’ usually because it’s assumed (as far as we know, wrongly) that a large clit will stop someone from achieving ‘normal psychosexual development’.

I suspect the focus on the post-op testing has more questionable roots, although I should note that both of these authors have substantial work out there already protesting the surgical alteration of children. The thing is, though, that one of the reasons, I gather, that Dreger has been pushing for the DSD approach is to develop *alliances* with doctors who felt alienated by the intersex movement; so she’ll be looking, probably, to maintain good relations with those doctors who perform the surgery by focussing on the post-op testing (which is unique to this case, at least apparently?). I’m guessing, but it seems likely.

As for why they waited; there could be several reasons, but it may well be that because both Feder and Dreger are humanities/social science based researchers, they may have only heard about this late in the peace and taken their time to do their due diligence (note they refer to emails with Poppas and others). But yes, I’m guessing. It’s just that, the forum in which they published has a shorter turn-around than trying to publish in academic journals (with the peer review process taking a good long while), so it seems like time did matter to them? I do know that Feder, in particular, has been doing other activist work related to research/’treatment’ of intersex conditions, so it may have simply been a matter of time. But of course, I don’t speak for either of these authors, so these are just guesses. Hopefully we might hear some more from them soon.

As for ethics issues in the US, well, I’m getting the impression that there’s a little rigour lacking in the ways that this is policed. There’s a few too many dodgy research projects appearing of late! But this is definitely a conversation that needs to be had, and I hope that this prompts it. I hope more, though, that through the spread of this issue through the progressive blogosphere, more future parents are learning about intersex and how the medical community tend to approach intersex infants.

John // Posted 23 June 2010 at 6:31 pm

@Jolene Tan

“Simply having a clitoris which is different from a culturally imposed expectation…”

Like I said, we are not talking about anything “simply” like you say. We are talking about very abnormal growth due to a definite hormone problem. This is supportable by objective scientific facts, not some fascistic cultural dogma.

Lot’s of people receive medical treatment to which they didn’t consent because they were not able to at the time. This is acceptable if a reasonable case could be made that they would want the surgery where they able to consent.

“Assault is not identified by the intentions of the assailant”

Intent is a pretty definitive factor in the moral nature of an action, and thus its legality. Shooting someone who is armed and dangerous can be a heroic action, shooting someone to take their money is evil. The whole context of the situation is relevant, not individual details.

If there were better tests available no doubt the doctors would of used them, it would be unethical not to.

The big question seems to be if intersex children are more or less advantaged or disadvantaged by this kind of surgical intervention. But I don’t see any discussion of that here.

If this surgery is doing long-term damage worse than not treating, then clearly the surgery is unjustified and immoral. But this is not clear to me, and evidently not to the parents or doctors concerned. If this is clear to you, then you need to explain this convincingly.

Jolene Tan // Posted 23 June 2010 at 6:37 pm

We are talking about very abnormal growth due to a definite hormone problem. This is supportable by objective scientific facts, not some fascistic cultural dogma.

“Fascistic cultural dogma” is precisely what it is. What exactly makes this allegedly “abnormal growth” a problem – other than its deviation from what is (arbitrarily, culturally) considered “normal”?

Shooting someone who is armed and dangerous can be a heroic action, shooting someone to take their money is evil. The whole context of the situation is relevant, not individual details.

Intentions alone can’t erase context. The “intention” to shoot someone “armed and dangerous” may be very well and good but if they aren’t actually “armed and dangerous”, believing and intending so don’t make it so.

If there were better tests available no doubt the doctors would of used them

The evidence for this being…?

If this surgery is doing long-term damage worse than not treating, then clearly the surgery is unjustified and immoral. But this is not clear to me, and evidently not to the parents or doctors concerned. If this is clear to you, then you need to explain this convincingly.

Please read the links as to the absence of evidence for the “long-term damage” of “not “treating”. That being so, “unjustified and immoral” pretty much sums it up.

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