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Lawsuit may help end surgery on intersex kids
May 22, 2013 6:09 AM   Subscribe

A South Carolina couple are suing doctors and social workers who determined that their adopted son should undergo surgery to make his genitals look female. Mark and Pam Crawford explain the background of their lawsuit, the intent of which is to bring up constitutional principles and the integrity of a person's body.

The case has attracted a certain amount of press coverage, from the determinedly neutral ("Risks not fully explained") to the pretty positive ("Stop Wrecking Babies' Genitals") and caused a need to clear up some misunderstandings ("we should very much care about phallic tissue even when it comes in (or off) a female").

And then there's this interesting blog post whose author, Claudia, thinks the outcome of the case will help "differentiate between parents/doctors making choices about actual health issues" and those that "are performed not for the benefit of intersex individuals, but for the benefit of a society that is kinda freaked out by us and would feel better making an effort to make our bodies as mainstream as possible."
posted by Athanassiel (65 comments total) 31 users marked this as a favorite

 
I hope they win the hell out of this suit, and I wish that this barbaric practice could come to a screeching stop right now. I can't believe it's whatever year it is and we're still allowing this to go on.
posted by rtha at 6:18 AM on May 22, 2013 [37 favorites]


Does anyone have a link to the actual court complaint? I'd be interested to read it.
posted by Bulgaroktonos at 6:23 AM on May 22, 2013 [2 favorites]


Bulgaroktonos, both federal and state complaints are linked to from the Southern Poverty Law Center page on M.C. v Aaronson.
posted by Athanassiel at 6:30 AM on May 22, 2013 [3 favorites]


This is very interesting to me. I didn't even know that when the state has custody of a child, that they were allowed to have non-emergency surgery performed on a child; a baby, really.
posted by roomthreeseventeen at 6:30 AM on May 22, 2013 [1 favorite]


I think the concept of "not medically necessary" is what makes this admonishable. This goes against the exact concept of "first do no harm" policy that all doctors, even the ones that are being paid by the state, agree to follow.
posted by Blue_Villain at 6:32 AM on May 22, 2013 [10 favorites]


Yeah please let's stop doing this. Has anyone ever been glad they had such surgery as an infant?
posted by iotic at 6:33 AM on May 22, 2013 [1 favorite]


I'm an intersex person and supporter of Advocates for Informed Choice, the organization whose staff are representing M.C. in this case.

A disproportionate number of kids who are given up for adoption are intersex. In international adoptions, birth countries often specify that adoptive parents must perform cosmetic genital-normalizaing surgery on the children, or pay for it to be done in the nation in which they are born before the parents can adopt.

As a result of infant genital surgery, many intersex people suffer from absent or reduced sexual sensation—something mainstream Western medicine presents as unethical female genital mutilation (FGM) when similar surgeries are performed on girls in other societies. There are further sources of pain: as a result of “corrective” surgeries, intersex people can suffer a wide range of unhappy results, such as loss of potential fertility, lifelong problems with bladder infections, and/or growing up not to identify with the binary sex to which they were assigned, as M.C. appears to have done. It is extremely painful to identify as female and to know one was born with a vagina that doctors removed with your parents’ consent, or to identify as male and to know one’s penis was amputated by the state. Imagine if someone performed a forced change on you--would you not feel profoundly violated?

This is an issue of basic bodily autonomy.
posted by DrMew at 6:38 AM on May 22, 2013 [87 favorites]


If people are going to be up in arms about circumcision and FGM, how much more so we should be up in arms here!
Better to leave everything be and wait on what the child wants at an age when they know themselves what they want.
posted by Katjusa Roquette at 6:41 AM on May 22, 2013 [7 favorites]


I really hope they win. I'm on my way out the door so apologies if the AMA position on this awful practice is mentioned in the links, but what's the official AMA position on this awful practice?
posted by mediareport at 6:45 AM on May 22, 2013


Also, note this: when a person does elect to have genital surgery, the results are generally much better when the person is not tiny. Waiting thus has functional benefit in cases where children do grow up to identify with the sex they were assigned at birth, and do in fact desire genital normalizing procedures.
posted by DrMew at 6:45 AM on May 22, 2013 [3 favorites]


I just – I can't – why would you even DO that to a baby?! Oh, and while we're at it, can we have them stop cutting off infant males' foreskins which contain a whole heap of nerves? Kthx
posted by Mooseli at 6:53 AM on May 22, 2013 [4 favorites]


This is very interesting to me. I didn't even know that when the state has custody of a child, that they were allowed to have non-emergency surgery performed on a child; a baby, really.

So I think this is missing the point a little bit.

It's a Good Thing that the state can provide real, legitimate reconstructive surgery for kids who need it, even if it's not an emergency. I'm thinking about surgery on a cleft palate, for instance. We wouldn't want to say "No, that doesn't prevent a life-threatening emergency, so kids in state custody can't have it done."

What's a Bad Thing is this particular surgical procedure. At one point in time it was believed that infant genital surgery was genuinely improving their patients' lives, just like getting a cleft palate repaired genuinely improves someone's life. But now we know that that's total bullshit, and the fact that medical practice hasn't caught up to that knowledge is what's most upsetting about this.
posted by Now there are two. There are two _______. at 6:54 AM on May 22, 2013 [18 favorites]


Don't know about the AMA but the UN released a report which, amongst other things, "calls upon all States to repeal any law allowing intrusive and irreversible treatments, including forced genital-normalizing surgery, involuntary sterilization, unethical experimentation, medical display, 'reparative therapies' or 'conversion therapies', when enforced or administered without the free and informed consent of the person concerned".

You can also add your name to show support for the AIC.
posted by Athanassiel at 6:54 AM on May 22, 2013 [3 favorites]


When I read about this lawsuit, I nearly burst into applause. This procedure is indefensible.
posted by prefpara at 6:56 AM on May 22, 2013


I hope they win.

Reading about the experiences of one trans, intersex person having undergone that surgery at age four made it particularly clear how bad a choice that surgery is when there is no clear medical, physical need for it.
posted by MartinWisse at 6:56 AM on May 22, 2013 [2 favorites]


Don't know about the AMA but the UN released a report which, amongst other things, "calls upon all States to repeal any law allowing intrusive and irreversible treatments, including forced genital-normalizing surgery, involuntary sterilization, unethical experimentation, medical display, 'reparative therapies' or 'conversion therapies', when enforced or administered without the free and informed consent of the person concerned".

Considering that the current crazies in Congress have stopped a treaty for equitable treatment of disabled people and another meant to end gun trafficking because of Agenda 21/Worldwide UN Empires/FREEDOMS, and took two years(!) to pass a previously-unanimous bill to prevent domestic violence because GLBT people are icky, I don't have a lot of faith that anything protecting intersex people will get anything less than the frothing-at-the-mouth Cro-Magnon treatment.
posted by zombieflanders at 7:27 AM on May 22, 2013


At one point in time it was believed that infant genital surgery was genuinely improving their patients' lives, just like getting a cleft palate repaired genuinely improves someone's life.

Is this not also a matter of a supposition on the part of non-cleft palated society? I mean if the issue is bodily autonomy where does one reasonably draw a line?
posted by three blind mice at 7:32 AM on May 22, 2013 [2 favorites]


Dear SPLC,

When I sent you $10, this is the sort of thing I wanted you to do with it, not send me maps of all the hate groups in the US, tickets to the Civil Rights Memorial and endless letters asking me to send you more money. I promise when I'm rich, or at least moderately well-paid, I'll send you more than $10. That said, if you have any insight about what I was meant to do with the 11x17 map of hate groups, I wouldn't object to a letter telling me about that.
posted by hoyland at 7:34 AM on May 22, 2013 [9 favorites]


What I don't understand is the mind-blowingly unscientific nature of this procedure. You can't just magically turn a boy into a girl by snipping things here and there. Where would someone who has studied biology even get that idea from. It's like we teleported some literal duck-masked quacks from the middle ages and let them skip medical school and have it in the operating room.

Cleft palate is a cosmetic defect that makes life harder. It has nothing to do with your hormones or your brain programming or your identity or your fertility.
posted by bleep at 7:37 AM on May 22, 2013 [5 favorites]


This is sadly really really common. Somewhere between .4% and 1% of all people are born somewhere on the spectrum not quite male or female. A good number of those present genitals that a doctor will 'fix'

A lot of people are unaware that they had 'corrective' surgery until adulthood, being told they had a hernia fixed to explain the scar on their genitals.
posted by French Fry at 7:42 AM on May 22, 2013


To those of you in this thread who are intersex, or know someone who is intersex (and thank you for chiming in), when is the appropriate time, if any, to do “corrective” surgery? I assume many intersex people would want to have it done before they became sexually active, but maybe not?
posted by roomthreeseventeen at 7:46 AM on May 22, 2013


I get so angry about this I find it hard to formulate words to talk about it properly, so I will only say, YEAH! GO CRAWFORDS! I hope they manage to put an end to this totally barbaric practice* and get a heapload of money, which they can then use to send M.C. to college.

*Comparing this to barbarism is probably a serious offense to barbarians everywhere, sorry barbarians. At least you guys made pretty skull pyramids.
posted by WidgetAlley at 7:50 AM on May 22, 2013 [3 favorites]


I assume many intersex people would want to have it done before they became sexually active, but maybe not?

For a lot of folks (the ones I know especially) the answer is "Not" because the corrective surgery is often akin to (or literally) removing the clitoris or penis. So not something you'd want done on the cusp of sexual activity.

To this day abnormally large clitorises, which present somewhat like a phallus, are shortened in infancy. I Don't know many adult cis gendered women would would sign up for clitoris shortening.
posted by French Fry at 7:51 AM on May 22, 2013 [2 favorites]


Is this not also a matter of a supposition on the part of non-cleft palated society? I mean if the issue is bodily autonomy where does one reasonably draw a line?

One draws a line by considering evidence. How else?

We have clear evidence that cleft palate surgery improves kids' lives. It's not just an aesthetic issue. Uncorrected cleft palate can lead to all sorts of other health problems, including speech disorders and serious ear and upper respiratory infections. And just as a practical confirmation that it's a good thing, note that there aren't a whole bunch of angry adults wishing for their palatal clefts back. (In fact, I'd be shocked if you could find one anywhere in the world.)

We have clear evidence that infant genital surgery is actively harmful. It's not just an aesthetic issue, or even just a matter of sexual pleasure. It also leads to higher risk of infertility, infections, etc. etc. etc. And oh hey sure enough there are a bunch of adults who are happy to come forward and say "That genital surgery you did on me was a big mistake and I really wish you hadn't."

This isn't some woo-woo nature-is-good surgery-is-bad parents-should-never-make-decisions-for-their-kids shit. It's just straight-up mainstream evidence-based medicine.
posted by Now there are two. There are two _______. at 7:52 AM on May 22, 2013 [38 favorites]


Holy Fuck : " M.C. has shown signs of developing a male gender and now, at age 8, has clearly identified himself as a boy."

Yet again, the South leads the way.
posted by marienbad at 7:58 AM on May 22, 2013


Is there some way I could donate some money to this family's legal fund, or some other related organisation? The AIC don't look like they take Paypal, which is unfortunately how I need to donate.
posted by Solomon at 8:03 AM on May 22, 2013


Solomon, you can donate to the Southern Poverty Law Center, whose lawyers are litigating this suit.
posted by prefpara at 8:05 AM on May 22, 2013 [2 favorites]


I attended a lecture by someone from ISNA (now spun-off into Accord Alliance) on this practice. I am glad to see this issue is getting more press.
posted by ThePinkSuperhero at 8:06 AM on May 22, 2013


Cool, thanks.
posted by Solomon at 8:11 AM on May 22, 2013


"This is sadly really really common. Somewhere between .4% and 1% of all people are born somewhere on the spectrum not quite male or female."

Common perhaps, but definitely not widely known. It wasn't until nursing school that I found out that there was a spectrum, not a nice clear binary, when it came to sex and it forced me to reconsider a whole shitload of preconceived notions about gender, sex and orientation. Long held, nasty prejudices necessarily came tumbling down. More press may similarly affect others.
posted by klarck at 8:13 AM on May 22, 2013 [11 favorites]


In regards to the question as to when intersex people would want surgery, the question is what surgery, as there are possibilities besides altering the size or shape of one's phalloclitoris.

For example, I know a number of intersex women born without vaginas, or with very small ones, who did decide to get vaginoplasty as adults because they wanted to have penetrative sex with male partners/boyfriends/spouses. But I know others who aren't at all interested in this surgery, and who found forced vaginal dilation in childhood to be painful, embarrassing, and unnecessary. Because vaginoplasty isn't performed until after puberty, people often get to make informed adult choices about it--and they choose different things.

A large percentage of the folks who are out as intersex are those of us who have gender transitioned. As families have been told to train us to keep our sex variance a shameful secret, intersex people tend to be very closeted. But gender transitioning causes a person to lose sexnormative privilege anyway, so those of us who do so generally come out about being intersex. I explain this as background to noting that some intersex people do desire to alter their phalloclitorises as part of the gender transitioning process, and, like any trans* person, should be able to do so if they wish. But most of the intersex gender transitioners I know don't seek this, and I certainly am not interested. Our life experiences with medical interventions into our sex, including loss of sensation, tend to make us disinclined.
posted by DrMew at 8:26 AM on May 22, 2013 [13 favorites]


It's a Good Thing that the state can provide real, legitimate reconstructive surgery for kids who need it, even if it's not an emergency. I'm thinking about surgery on a cleft palate, for instance. We wouldn't want to say "No, that doesn't prevent a life-threatening emergency, so kids in state custody can't have it done."

What's a Bad Thing is this particular surgical procedure. At one point in time it was believed that infant genital surgery was genuinely improving their patients' lives, just like getting a cleft palate repaired genuinely improves someone's life.


Here's the thing: do we categorically know that it never does improve patient's lives? What we see may be only the tip of the iceberg. We see people who feel they had the "wrong" operation early in life for the gender they want to or feel themselves to be. But we don't hear from the people who have no idea that they ever had this surgery, because they are happy with the correction. The article says that doctors were sure at the time the kid would "probably" be a boy, I'd be curious on more data there.

I'm also not really sure how the parents have standing in this issue: they are suing the state for a correction that happened before they became parents of the kid on the grounds that they are impacted? Could adoptive parents thus sue, say, birth parents for having addictions that then make living with the kid hard? Anti-vaccers sue the state for having provided vaccines that they feel shouldn't have been administered?

Also, this is kind of frustrating:
"He's always been able to amuse himself with a toolkit," Mark Crawford said. "He's more likely than any of our other children to be climbing trees, wanting to ride bikes, flying model airplanes."
posted by corb at 8:46 AM on May 22, 2013


Seven years ago, when I was pregnant with my first child, we were taking childbirth classes at the hospital where I was going to give birth. The woman who was teaching the classes was positively amazing -- she was an RN, an L&D nurse, she had been both a NICU nurse and a doula, and she had had four births at home, so she really was well educated and experienced on the issue. Anyway, she went "off-book" to tell us about intersex children, that there was a chance that our baby would be born and regardless of what we'd learned from amnio or ultrasound, their genitals might be ambiguous. She said "If that's the case -- it happens in maybe 1 out of 400 births, so not common but not unheard of -- please, please resist the urge to 'fix the mistake' immediately, unless there's a comfort issue for the baby. These things often play out in complicated ways."

It sounds like her numbers were off, but this was the better part of a decade ago. I really appreciated her words; I can't imagine how much better it would have been for a family with an intersex child to have had even that much prep before the birth.
posted by KathrynT at 8:48 AM on May 22, 2013 [14 favorites]



Here's the thing: do we categorically know that it never does improve patient's lives?

I think when it comes to this it's better to err on the side of caution.
The state took a positive action that hurt their kid that they didn't have to take. It's not just about getting damages, it's about stopping a practice that hurts people. Damn right they should sue.
posted by bleep at 8:51 AM on May 22, 2013 [6 favorites]


Here's the thing: do we categorically know that it never does improve patient's lives?

Sure, but the problem is that you cannot know that, nor can you actually be sure that you're "correcting" to the right gender. The Hippocratic oath is clear: first, do no harm. (Keep in mind that like any operation, such "corrective" operations do carry risks in and off themselves, especially with very young children.
posted by MartinWisse at 8:52 AM on May 22, 2013 [5 favorites]


Here's the thing:

What's the harm in waiting? Seriously. What is the harm in waiting until the child is older and can express both their emerging identity and their opinion? If there are no actual medical problems, like the kid can't pee or poop or has constant UTIs that are because of their ambiguous genitalia, then why not wait?
posted by rtha at 8:54 AM on May 22, 2013 [5 favorites]


Here's the thing: do we categorically know that it never does improve patient's lives?

We don't know if it's improving some lives.
We do know that it's negatively impacting some lives.
We know that it's a crapshoot to predict which way it will go.
So, my takeaway is that the possibility of a positive outcome is not worth the risk of a negative one.
posted by The Underpants Monster at 8:55 AM on May 22, 2013 [5 favorites]


And the thing is, no infant is harmed by having ambiguous genitals. No toddler is harmed by having ambiguous genitals. Gender identity emerges well before a child's genitals are going to be a part of anyone's life but the child's, their family's, and their doctor's. There is zero harm in waiting.
posted by KathrynT at 8:56 AM on May 22, 2013 [11 favorites]


The child certainly has standing to sue, and in such situations parents are typically granted standing to bring claims on behalf of their minor child. Sometimes a third person is granted standing to assert the child's claims, especially where the parents are the ones being sued. I am not sure whether the parents are suing on their own behalf or on behalf of their child, as I have not yet had a chance to read the complaint, but it would surprise me if standing to sue were a problem for the plaintiffs.
posted by prefpara at 8:59 AM on May 22, 2013 [2 favorites]


Oh, and, you know, maybe let's not surgically rearrange the genitals of helpless children because of hypothetical unknown people whose happiness we imagine for no reason I can fathom.
posted by prefpara at 9:00 AM on May 22, 2013 [10 favorites]


What's the harm in waiting? Seriously. What is the harm in waiting until the child is older and can express both their emerging identity and their opinion? If there are no actual medical problems, like the kid can't pee or poop or has constant UTIs that are because of their ambiguous genitalia, then why not wait?

I will admit that I am not an expert on this; I don't have an intersex kid nor do I know anyone who has knowingly been through this. So here are what I could think of as issues - but I do welcome anyone who has better information and cites than me.

1) I think the biggest harm I could think of in waiting while as a ward of the state / hoping to be adopted is purely adoptability. From what I understand the last time I looked at numbers, the chances aren't good for babies who are born with any defects whatsoever - and if there's one that is really correctable that would give a baby a great shot at being adopted, I could see where someone concerned about that child's future would want their genitalia fixed - and would rely on the doctors to ascertain what the correct genitalia was in that instance. And I think it's kind of sad that the people being sued in this case appear to be (judging by the article) the doctors and social worker? People who I can't imagine meant anything but well?

2) For anyone else, I think it would depend on when gender is said to actually present. And how much emotional damage could possibly be done by telling kids, "You're not like the other kids and we don't know what you are." I'm genuinely not sure - and I don't think I've seen any unbiased studies on the issue, nor am I sure how you would actually accomplish said studies given the restrictions around social science studies on children. (Nor, I suppose, do I know when children first start showing each other their genitals.)

3) Again, this is something I'm not super sure on - but is there any harm to fertility from waiting? I've seen that intersex children are assigned to the sex they have the most portions of or clearest genitalia of - I assume fertility is involved in this, but could be wrong.

4) Is it easier to have surgery when the genitalia in question is smaller and before it has possibly grown to harmful proportions?
posted by corb at 9:07 AM on May 22, 2013


2) It's SO EASY to explain to kids about intersex issues. Bigotry comes from adults, not kids that have been educated about this.

4) harmful proportions? WTF? And no...it's easier to fuck up a surgery on a small person, causing loss of sensation or even infertility. As noted above.
posted by agregoli at 9:11 AM on May 22, 2013 [5 favorites]


The problem is they're fixing nothing. Gender isn't how your skin looks.
posted by bleep at 9:14 AM on May 22, 2013 [1 favorite]


corb, you should go read about David Reimer. One person's (terrible, awful, never-should-have-happened) story is not Data, but I learned a lot when I read the book ages ago and you probably will, too.

For anyone else, I think it would depend on when gender is said to actually present

Again, what harm is there in waiting? I "knew" when I was a toddler that my body was different from a boy's body, but I didn't know what that "meant" in the larger sociological arena. And I didn't need to. I understood that everybody's bodies are different, and that my body was unique to me, whatever surface similarities it might share with others. Little kids are remarkably sanguine about all kinds of stuff that we only learn to freak out over as we get older.

Why make an irreversible and potentially very damaging decision on behalf of someone who can't consent? Why is "because some people might be weird about it if we don't" something that must be given the greatest weight in this decision?

The "corrective" surgery itself often destroys reproductive potential, and often causes sensory damage.
posted by rtha at 9:17 AM on May 22, 2013 [9 favorites]


Cleft palate is more than cosmetic. Depending on how severe it is, it can affect a baby's ability to eat and a child's ability to speak. There is only one surgical outcome to correcting it, which it is hard to imagine anyone objecting to. I have never heard of a person saying that they regret the correction of their cleft lip or palate, though I haven't exactly gone looking for it, either. Correcting cleft lip and palate leads predictably to increased functionality in ordinary and necessary activities such as speech and eating, though it doesn't necessarily achieve an outcome identical to that of a person born without a cleft.

Correcting intersex conditions can lead to multiple outcomes that can't be predicted. You could do a little flow chart:

1. Child undergoes surgery which produces more "female" gentials. Child undergoes hormonal puberty as a female and identifies as female.

2. Child undergoes surgery which produces more "female" genitals. Child undergoes hormonal puberty as a male but identifies as female.

3. Child undergoes surgery which produces more "female" genitals. Child undergoes hormonal puberty as a male and identifies as male (not necessarily in that order).

and so on, including the options where the child grows up not wanting to identify strongly with either a male or female gender.

Add in the possible complicates that can impair sexual, urinary, and reproductive function, and it gets even messier.

I suppose there can be good outcomes of this surgery--that a person who identifies as a certain gender has genitals that closely match what's expected for that gender. But there are a lot of bad possible outcomes, too, as well as partial outcomes. The decision is being made for a baby who is too young to express a preference, either about having the surgery at all, or what they would like the outcome of the surgery to be.
posted by not that girl at 9:24 AM on May 22, 2013 [1 favorite]


corb, to answer a few of your points:

1. Adoptability is totally a thing. I'm not sure this is necessarily the answer, but this is a for-real problem.

2. From observing my own kids, gender seems to present at about 3. Before then, you can maybe make your best guess about socialization and gender terms, and change your mind if the kid tells you you're wrong. Pronouns and clothing choices are a lot easier to change than surgery. In a perfect world, of course, parents would be able to answer "Boy or girl?" with "We're not sure" without that being a social nightmare, but we don't live there yet.

3. Fertility is much, much more likely to be compromised by this surgery than preserved.

4. Genital surgery is MUUUUCH more sensation and function preserving when done post-puberty. Those structures develop after exposure to hormones, and it's a lot better to let them develop first and then do desired modifications than the other way around. This is actually true of a lot of plastic surgeries.
posted by KathrynT at 9:26 AM on May 22, 2013 [5 favorites]


babies who are born with any defects whatsoever

Intersex is not a defect, and I think it's pretty insulting to imply that it is one. Can we please use different terminology? I kinda get what you're saying in the sense that sometimes it is (incorrectly) viewed as a defect, and that could affect the adoption, but it would be great if we were all really careful about not explicitly calling it one.

I think the biggest harm I could think of in waiting while as a ward of the state / hoping to be adopted is purely adoptability.

The problem I see with that is that the article above clearly states that, "Typically, children with these conditions develop as a boy or girl as they grow." And that boy or girl is not necessarily in line with the decision that was made for them about their genitalia. So if a family is unwilling to adopt an intersex child without "corrective" surgery, or if they are sufficiently uninformed enough to believe that a surgery with no basis in scientific evidence should be performed, how the hell are they going to cope with the possibility that their child may grow up to have a non-conforming gender identity? If anything, I would think forcing genital corrections on children for the sake of adoptability is a set-up for future abuse and neglect at worse and serious familial confusion at best, unless the kid just happens to grow up identifying the same gender that's been assigned. And that, as we can see, is obviously NOT a given.

People who I can't imagine meant anything but well?

Whether they meant well or not, lawsuits are the way so-called "treatments" like gender assignment without consent get stopped in this country. I mean, sure, if the doctor really thought it was a good idea, I have a little bit of emotional sympathy. But it's still their job to be better informed than this, and also, hey, you have to start somewhere. If we didn't sue people who said, "But I THOUGHT I was doing the right thing!" no one would ever get sued and therefore, because of the way legal rights work in our system, very few civil rights issues would ever gain ground.

And how much emotional damage could possibly be done by telling kids, "You're not like the other kids and we don't know what you are."

You're right that we don't have a whole lot of really good quantitative data on this, probably due to a lot of the non-disclosure policies mentioned above (where kids aren't told they were born intersexed.) In the absence of really great statistical analysis, or hell, even in the presence of it, we can listen to the people the issue is affecting. And the people the issue is affecting say, overwhelmingly, that they wish they had not been treated this way, and would have preferred the ambiguity of waiting. More social science on this topic would be great, but right now what we have to go on is telling us that it's inexcusable to keep making these decisions for people at least until we know more, and almost certainly that it's inexcusable to keep making these decisions for people at all.
posted by WidgetAlley at 9:27 AM on May 22, 2013 [21 favorites]


2) For anyone else, I think it would depend on when gender is said to actually present. And how much emotional damage could possibly be done by telling kids, "You're not like the other kids and we don't know what you are."

Isn't that the same argument that used to be made for why people of different races shouldn't be allowed to marry and breed?
posted by The Underpants Monster at 9:30 AM on May 22, 2013


Dang, some of my peer-reviewed research links seem to be fracked if you're not signed in to a university system. Sorry, all. Did the best I could. Stupid paywalls.
posted by WidgetAlley at 9:32 AM on May 22, 2013 [1 favorite]


Corb, I'm an intersex man married to an intersex woman with a good number of intersex friends. So I address your concerns with that background:

First, surgical results are always better when performed on genitals that are not minute, and genitals don't get "more harmful" when they get bigger. In fact, the size of a child's phalloclitoris can't cause the child any physical harm, and the fear that is typically raised--that it would cause social harm to look different--is, I believe, quite overstated, as children wear clothing.

Secondly, it is highly unlikely that infant surgery could prevent a person ever knowing that they are "different." Because such surgery leaves scars, and genitals still generally appear somewhat to highly atypical, and sensation is often altered, and multiple surgeries can occur throughout childhood to "revise" the first, and vaginoplasties and removal of internal testes generally take place after puberty, almost all intersex people know they are different. What makes it much harder for many people is that they aren't sure what their difference is, because parents and doctors don't tell them. It's the feeling of shame about having something unspeakable wrong with you that causes many, many intersex people anguish. This has been studied retrospectively--see Katrina Karkazis' extensive Fixing Sex.

Now, as for fertility, many intersex surgeries actually eliminate it by removing gonads. In the case of a particular subset of intersex people, those with XX, CAH, it's possible that vaginoplasty and hormone treatment can permit fertility, but this is a surgery not performed until after puberty, and what's done in childhood is to "reduce the enlarged clitoris" (that is, remove the phallus), which doesn't enhance fertility at all.

Finally, the idea that doctors have some magic insight into what genitals are best for a given person grants them a huge amount of deference. Consider this: visit a plastic surgeon for a consult, and they will happily give you a whole list of procedures they think you should get to improve your appearance. But most of us don't want most of them, and in any case, the plastic surgeons can't impose them on us and get reimbursement from insurance. But put an intersex baby before a doctor who specializes in genital reconstruction, and the doctor does get to impose hir judgments and get paid. . .

As others have said, there's no harm in waiting, or in genital diversity.
posted by DrMew at 9:34 AM on May 22, 2013 [27 favorites]


I want to add, re: emotional damage: my partner and a lot of our friends are trans, and we found it pretty easy to talk to our kids about it without a lot of hoopla. We just built it into ordinary conversations about sex and gender. We said things like, "Most girls grow up to be women," or "Most boys have penises," or "most people identify as either male or female, but some people, like our friend X, don't really feel like either of those fits them." I can imagine fitting an intersexed kid's genitals into that model: "Most people have either a penis or a vulva, but some people have something else, with elements of both those things," or whatever was accurate.

Our five-year-old son is female-bodied, and when he worries, we reassure him that he can grow up to be a man if he wants to, that there are things doctors can do to help him do that ("Will I have to have shots?" he asks, and instead of saying, "Oh, hell, yes, you will and most likely for the rest of your life, too," I said, "Hmmm, I'm not really sure...", because shots freak him out just now).

I'm not sure what I'd do for pronouns with an intersexed kid--I'm not fully conversant with the gender-neutral ones, and most people are even less so, and I don't think I'd want to be explaining "ze" to every person I chatted about my cute baby with in the grocery store--but I would trust that the child's gender self-identity would emerge and we would follow the child's lead, even if our first "guess" was wrong. That's what happened with the Tiny Tornado, after all. We were all like, "she, she, she," and he said, "Nope, boy."

Adoptability is definitely a thing. We expected to wait at least 18 months to match with a birth mother, but we matched with one after only six months of waiting. One of the reasons our agency matched with that particular birthmother is that both the birthmother and her 10-year-old daughter were fat, and they thought we'd be OK with that (I'm fat, too). But they thought other waiting families would turn down the match because of the possibility that the baby would grow up to be fat. (That birthmom ultimately decided to parent the baby, and we matched with our son's birthmother nine months later.)

However, there are a lot of gay and lesbian people out there wanting to adopt. I have friends, a gay male couple, who ultimately had to give up on their hope of adopting because they got so old while they were waiting they thought they couldn't do it anymore. They were wonderful people with a lot of financial resources who would have been great parents for an intersex kid. There are adoption agencies that specialize in hard-to-place babies, like babies that are HIV positive. Perhaps there could be a specific effort to match intersex babies and children with parents who are prepared to raise them, though I hate to make that kind of suggestion when I'm not able to help solve that problem myself.
posted by not that girl at 9:42 AM on May 22, 2013 [22 favorites]


One of the reasons our agency matched with that particular birthmother is that both the birthmother and her 10-year-old daughter were fat, and they thought we'd be OK with that (I'm fat, too). But they thought other waiting families would turn down the match because of the possibility that the baby would grow up to be fat.

Holy shit, really? Not to derail -- but I have a hard time imagining people would not adopt a baby because of either fat-propensity or intersex. I guess those are the types of people I'd hope wouldn't adopt those kids anyway.
posted by fiercecupcake at 9:50 AM on May 22, 2013 [1 favorite]


as always I ♥ Metafilter for the personal stories that are shared in threads like these. Thank you all.
posted by jepler at 10:01 AM on May 22, 2013 [9 favorites]


I'm glad that the SPLC is doing this case. That said, SPLC has an endowment of more than $220 million. More than $220 million. So, in my view, donations on this issue should go to intersex advocacy groups.
posted by ClaudiaCenter at 10:13 AM on May 22, 2013 [1 favorite]


SPLC also does some of the most difficult and potentially dangerous work in terms of tracking and litigating against hate groups, so I am very glad if they have an endowment that allows them to survive and continue. I don't see any issues with donating to them if they are more effective in getting the job done; one of the things I learned with Prop 8 is is that just because some group calls itself an advocacy group doesn't mean it's actually any good at advocating effectively.
posted by tavella at 10:21 AM on May 22, 2013 [2 favorites]


Sexing the Intersex is a great article that discusses sex assignment for intersex babies, the social pressures to do so and how it is often unnecessary and destructive.

Also, the article brought up an interesting point. In the twelfth century, hermaphrodites chose what sex they wanted to be. They had to stick with it and conform to some format of binary gender roles but unlike today, they had a choice in who they wanted to be. This suggests that medical advancements in sex assignment surgery gave society a way to further regulate sex and gender by taking away the freedom of choice from these individuals. This is problematic for me and I'm glad someone is doing something about it.
posted by cyml at 10:44 AM on May 22, 2013 [2 favorites]


I have a hard time imagining people would not adopt a baby ...

It was kind of an eye opener to me when I was talking with a couple that had to go the donor route to conceive, and they had a catalog of options of what their kid would be like (well, what one of the biological parents would be like). When people have a choice for how the next 18 years of parenting might turn out, it's now obvious to me (in hindsight) that they might exercise that choice.
posted by zippy at 10:44 AM on May 22, 2013


Me, My Sex and I is a BBC documentary about intersex conditions. It's quite enlightening.
posted by Solomon at 12:17 PM on May 22, 2013 [1 favorite]


Thank you for the thoughtful post.
posted by stoneweaver at 4:11 PM on May 22, 2013 [2 favorites]


In the video in the original post, Pam Crawford talks about how adopting an intersex baby was no issue for her and perhaps even a plus because one of her close friends growing up was intersex. In terms of intersex affecting chances for adoption, it might currently be an issue - but how much of this is because of ignorance, lack of experience and lack of information provision from health care professionals who instead reinforce the whole ambiguous-genitalia-bad thing? I guess I'm saying that this legal battle could very well also pave the way for social change, which would be a great thing for all the adopted intersex babies as well as the non-adopted ones.
posted by Athanassiel at 9:16 PM on May 22, 2013


Adoptability is totally a thing. I'm not sure this is necessarily the answer, but this is a for-real problem.

Yeah, though not that girl makes some good points around that - both around gay couples, who might have more understanding, having a hard time adopting, and also around possible placement agencies. The adoption process isn't something I'm super intimate with, but I know it's incredibly, incredibly difficult here in the US - I think that's one of the factors spurring the increase in foreign adoptions. Would relaxing standards and giving more families (and even single people!) chances to adopt allow for more adoptions of the "less preferred" kids? It's something worth considering, I think, at least.

2. From observing my own kids, gender seems to present at about 3. Before then, you can maybe make your best guess about socialization and gender terms, and change your mind if the kid tells you you're wrong. Pronouns and clothing choices are a lot easier to change than surgery.


This makes a lot of sense - and also even if other kids do happen to see the genitals (because young kids are NUDISTS LIKE WHOA) it's not as though the up-to-three-year memory is long and mighty. And you can give the kid a neutral name and try to avoid the subject as much as you can for a while - and it might eliminate the problem referenced upthread of things being way too tiny to work on effectively.

4. Genital surgery is MUUUUCH more sensation and function preserving when done post-puberty. Those structures develop after exposure to hormones, and it's a lot better to let them develop first and then do desired modifications than the other way around.

I could see the benefit of it, but that seems really hard - because waiting until post-puberty means that the kid is already wanting to engage with other kids sexually (I'm not saying actual sex, but teens do engage in a lot of heavy petting and the like fairly early on, which means genitals would be in play). And I seem to recall from one of the trans threads that someone was saying allowing someone to go past puberty with the wrong gender created irreversible changes, something about the hormones involved? Or is this not an issue with intersex people - do they present with mostly one set of hormones? This is something I feel like the average public does not have a lot of data on. I googled, but all I was able to find is that it might be different for each cause of intersex - do doctors generally know the cause at birth/early youth?

almost all intersex people know they are different. What makes it much harder for many people is that they aren't sure what their difference is, because parents and doctors don't tell them. It's the feeling of shame about having something unspeakable wrong with you that causes many, many intersex people anguish.

That's a really useful point. I think people try to avoid telling the kids to be kind and try to let them live normal lives, but if it's as obvious as you say, and you need multiple trips to the doctor for maintenance, it definitely sounds like that would be impossible to carry off. In fact, I'm not even sure how parents would even try to maintain something like that. One surgery in infancy could be covered, I suppose, but repeat visits? Mindboggling.
posted by corb at 4:46 AM on May 23, 2013 [1 favorite]


Good for these parents. This sort of surgery on an infant is barbaric.
posted by dejah420 at 12:19 PM on May 23, 2013 [1 favorite]


I was really hoping they were suing to prevent it from happening. People are maddening.
posted by Dynex at 6:29 PM on May 23, 2013


> Me, My Sex and I is a BBC documentary about intersex conditions. It's quite enlightening.

I'd also recommend Orchids, My Intersex Adventure.
posted by homunculus at 8:26 PM on May 24, 2013 [1 favorite]


And how much emotional damage could possibly be done by telling kids, "You're not like the other kids and we don't know what you are."

Compared to how much emotional damage could be done by trying to force them to conform to stereotypes of particular gender in their socializing and play activities and hiding part of their medical history from them?

People who adopt children should already be able to explain to those kids how they might be "not like the other kids" in a way that doesn't emotionally damage them.

"Adoptability" might be better achieved by avoiding unnecessary surgeries that may have complications requiring additional medical care, and by avoiding the psychological problems that have been reported years after these surgeries.
posted by yohko at 8:59 PM on May 26, 2013


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