South Carolina Intersex Lawsuit A Major Step In Ending Nonconsensual Surgery to “Fix” Intersex Kids

Yesterday, news outlets announced that the adoptive parents of 8 year-old intersex child M.C. Crawford are suing the state of SC because cosmetic genital surgery was performed on M.C. without his consent. M.C.’s form of intersex was not disclosed, but it is reported that he was born with atypical genital form. The South Carolina Department of Social Services, Greenville Hospital, Medical University of South Carolina, and other clinical affiliates are being sued for operating on M.C. when he was 16 months old, to “normalize” his genital form in accordance with the female sex they assigned him (i.e., removing genital tissue so the external genitals were smaller, moreso resembling a clitoris than a small penis). The Crawfords were in the process of adopting M.C., who was subjected to surgery about three months before the Crawfords gained legal custody of him. Now, they have filed claims on the basis of medical malpractice and gross negligence, in favor of the child’s right to privacy.

The Crawfords (image via via oii.org.au)

The Crawfords (image via via oii.org.au)

This case is important for a lot of reasons. First off, it’s always a big deal when intersex is mentioned in the news at all in a way that doesn’t stigmatize, fetishize, or sensationalize intersex. There are a lot of great articles and TV specials that have focused on intersex over the years, but when intersex is covered on the small screen or in column inches, it’s oftentimes handled in a less-than-sensitive way that belies a misunderstanding of what intersex is in the first place. The last time I remember intersex in the news in a big way recently are as follows:

  • Lady Gaga was speculated to be intersex or trans* because her skirt rode up during a performance and viewers claimed she had a penis. (I don’t know how this makes her intersex. I guess the assumption is that she had a penis and a vagina? Even though intersex people cannot biologically have a penis and a vagina, although non-human hermaphrodites, like some plants and fish and mollusks and things, can?)
  •  Caster Semenya, South African Olympic runner, was publicly outed as intersex to the world, when she herself did not know she had atypical sex anatomy (and Olympics officials didn’t either, until they took seriously her competitors’ criticism that she “must be a man” based on her athleticism and physique, and mandated she take genetic tests).
  • The world learned nothing from treating Caster Semenya so abominably, and created a similar sensation surrounding Indian track athlete Pinki Pramanik who additionally lost her job and was accussed of rape by her live-in partner on the grounds that she was “really” male

These are not storylines that serve to accurately define what intersex is, discuss why intersex is such a highly-charged issue, and help people to understand that we’re neither unrelatable weirdos, nor objects of fascination whose bodies and identities are available for public consumption.  We’re just people, who happen to be intersex.  There are a lot of messed-up things that are happening to us right now, but we are just people.  The articles focusing on M.C. are well aware of this, and the writers treat him and the Crawford family with respect.

This case is also important because it illustrates a radical shift in perspective about who gets to consent to what is done to intersex bodies. Doctors and parents have traditionally made decisions as to whether surgery and other medical procedures should be performed on intersex children. In part, this is because we conceive of intersex as a medical problem. Parents and doctors have what’s called consent proxy, a legal right to step in and make decisions on behalf of child’s health when that child is too young to understand the implications of their health problem. For example, if an infant is found to be born with congenital heart disease, the parents and doctors aren’t going to just sit on their hands and say, “Hmmmm, I guess we’ll just wait until this kid turns 18 to decide for themselves whether they want the heart surgery they’re realistically going to need like, right now.” Parents are going to make decisions on behalf of their child that can’t yet make those decisions for themselves, and tell the doctors to help their child because good parenting/duhhh, and the doctors are going to do it because saving lives. Easy scenario, easy solution.

This is all well and good when consent proxy is applied to actual medical conditions, but being intersex isn’t a medical condition. There are actual health problems that are associated with some forms of intersex – e.g., “salt wasting” or an inability to regulate salt levels in the bloodstream, for congenital adrenal hyperplasia, or CAH. As I’ve said in my previous post, this doesn’t mean that intersex in and of itself is a medical problem. For example, many women are at risk for ovarian cancer, but just because ovarian cancer is a medical condition associated with women doesn’t mean that being a woman is a disease, because some women can get ovarian cancer.

Intersex is a bodily way of being. It’s about bodies that have a combination of sex traits traditionally considered “male” or “female” in the same body. The clinical procedures in question are not those that track health or provide any sort of medical benefit for the child; the genital surgeries, (vaginal) dilation procedures, and other treatments that parents and clinicians give proxy consent to are cosmetic. They’re performed to make their child’s external genitals look “normal” (as though there is one way genitals should naturally look), to remove internal gonads kids assigned M/F “shouldn’t” have, to sculpt intersex bodies into something that more closely approximates societal beauty standards as to what our most private of parts should look like.

This case is really important because it clearly argues that parents and doctors shouldn’t get consent proxy to decide whether intersex children should have these cosmetic procedures. Since they’re not medically relevant, only intersex persons themselves should decide what we want to do with our bodies. M.C.’s mother stated the following in The New York Times in March:

“We feel very strongly that these decisions to permanently alter somebody’s genitalia and their reproductive ability for no medical reason whatsoever is an abhorrent practice and can’t be continued.”

The Crawford family’s decision to sue various SC institutions on the basis of malpractice in intersex medical “treatment” is truly historic. Over the past two decades, since intersex activism began in the UK and US, intersex individuals have shared their stories and histories, and have been explicit about the physical and psychoemotional harm that comes from medicalization. The harm that comes from knowing that somehow, your body isn’t quite normal, isn’t quite right, and needs to be “fixed.” From feeling like whatever decisions are made about your body, you don’t – or didn’t – have a right to make those decisions yourself, because your parents and respectable men in white coats are supposed to make big decisions for you. From struggling to come to terms with their post-treatment bodies, with scars and pain and lack of sensation, and even legitimate medical problems because of those treatments, whose unwanted outcomes they have to deal with for the rest of their lives. Intersex people have been saying that medical treatment is fucked for a while.

But this is the first time that people are taking legal action against the institutions and clinicians that made decisions on behalf of an intersex child – decisions that the Crawfords argue, were not theirs to make. Clinicians often dismiss intersex indiviudals’ experiences of harm in the medical system as anecdotal, of being upset with the results of a choice they did their best trying to make, choices we should be thankful clinicians make so that we could live a “normal” life. This case turns that perspective on its antiquarian head – that the problem is that those decisions were made at all, by anyone other than M.C. himself, and that any problems he has in the future are because others made decisions about what body parts he got to keep for him, and not in spite of them. M.C. was already normal. What’s not normal, and what’s not okay, were the medical procedures themselves.

This case is going to be really important in helping legally define whether intersex is treated as a medical condition or simply as variations in human biological sex, and based on those definitions, who has the legal right to consent to cosmetic procedures done. I think it will also clearly differentiate between parents/doctors making choices about actual health issues for their intersex children (e.g., salt-wasting) and those that don’t track health, and 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.

I think we’re in good hands as far as legal defense is concerned. This case is being taken on by Advocates for Informed Choice (AIC), the only legal agency in the US that specifically “advocate[s] for the civil rights of children born with variations of reproductive or sexual anatomy.” They are doing a lot of awesome work, and I strongly feel they’re going to kick ass in court. (Do lawyers say that? I’m sure “kick ass” is a legal term. Quid pro kick ass, right? Right.)

The AIC has also posted a document of support on their website. If you support their cause in taking legal action on behalf of M.C., think about signing it here!

You can also listen to M.C.’s parents speaking honestly and passionately about their journey adopting him, and M.C.’s right to consent. It’s pretty powerful stuff.

There are a lot of things bouncing around my brain that I’m trying to make sense of. I don’t know that I actually thought I’d be alive to see parents of intersex children taking legal actions against clinicians who “treated” them. Legal action was one of those things that I’ve heard other intersex individuals talk about, as a thing that doctors were afraid of. There are few long-term outcome studies on how intersex individuals have responded to their bodies post-”treatment,” how they feel about their bodies over time, or if they were satisfied with the clinical care they received. Recent research, like Fixing Sex by Katrina Karkazis (2008), confirms what intersex people have long thought to be the case – that this is, in part, because doctors were worried that releasing their patient lists might result in legal retribution against them after studies were published. I think clinicians have been wary of legal action on the basis of them making big decisions for our bodies and our lives without our consent for a long time.

Of all the things that Karkazis has said in Fixing Sex, one statement has resonated with me over the years: “good intentions don’t result in good decisions.” I sincerely believe that many doctors and parents have felt that they were making the best decisions for their child, in trying to normalize their bodies. M.C.’s legal case is one of the first times that institutional authority is being held accountable for their actions – and not given a free pass based on their intentions.

This is important.

This is huge.

I am really looking forward to seeing the progression of this case in court. There have been some other important legal advances in the past year – an amendment currently under review in Australia offering protections not just on the basis of sexual orientation and gender identity but also intersex status, and an official statement released by the UN in February 2013 condemning normalizing, cosmetic procedures performed on intersex children. I think that with the current trajectory of awareness and legal action, we might just see the end of non-consensual intersex procedures within our lifetimes.

Things are looking up.

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18 Comments

  1. Thumb up 5

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    I’m really happy to hear about this case (and really sad that it has to be a thing). Before I read your other article, I wasn’t really aware of these cosmetic procedures on kids, and to be honest, it made me pretty angry that it doesn’t only happen, but is common.

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    It’s so horrifying to me that anyone would make such drastic, medically-unnecessary changes to their child’s body. To me, consent and respect mean that I would make NO changes to my kid’s body—THEY get to decide for themselves. This also includes things like circumcision and pierced ears. I understand that part of parenting is that you have to make decisions for your kids, but compromising their bodily autonomy is not and should not be one of them.

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    They posted about this on my field’s national association’s Facebook (I am in a mental health field that works with children) and two people commented – one in an informed way that was sympathetic to the child and family, the other in an ignorant way that said something along the lines of that the state/doctors were acting in the child’s best interests and why should we let children make that decision about their gender cause what do they know and what if they get it wrong. I was very pleased to see the first one got lots of likes while the second one got none.

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      It’s heartening at least that no one liked the second comment. Also, how the heck can someone get their OWN gender “wrong” when gender is a personal piece of identity? Maybe they will develop different understandings of identity over time, but it still seems like the person actually living in a body is in the best place to know what’s right for them around their own gender.

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    Yay, I’m so glad you wrote a thing for AS about M.C.! I feel really cautiously optimistic about this case being beneficial for future intersex people, but hate that this case has to happen at all.

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    The great part of this story is it’s actually spreading the message how it won’t be business as usual and that docs don’t get a free range to “correct” Intersex children as they wish. This abomination has been going on way too long under the delusion of “helping children” when it’s actually helping rigid social assumptions about sex and gender and diminishing the value of Intersex bodies and experiences. I wish the Crawfords the best of luck and applaud their standing up for their child.

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    The whole concept of doing cosmetic surgery on babies and children is mindblowing to me. It’s violating their rights and altering the course of their lives.
    Working as a sign language interpreter, I know a lot of Deaf individuals with hearing parents who were given Cochlear implants at birth when they detected that the child was “not normal” (the surgery involves peeling away part of the face and is incredibly invasive and dangerous). The children grow up feeling like they don’t belong in either community, and a lot of them end up trying to reverse the procedure later in life or commit suicide.
    There are so many parallels, and what it boils down to is that these children are growing up believing there was something about them defective that needed to be fixed. It just isn’t right. It’s not the message parents should be giving their children.

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      I find your points about Deaf individuals to be interesting; I’ve never met somebody who doesn’t like theirs and only known people who’ve been glad to receive them.

      Now I think about it I can see how it could be considered invasive and unwanted – I own hearing aids and have faced many talks/guilt trips about how I should wear them because I’m missing out/wrong from friends, teachers, audiologists and everyone in between. At least I can take them out.

      When I was a child I was much more invested in the Deaf community, activism included, but I remember being slighted for talking to hearing people. Now I’m not sure I can even sign fluently anymore. I imagine the exclusion I sometimes face must be amplified for people who have lower levels of hearing than I do, such as theses with CIs.

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    I couldn’t really find the answer to this anywhere, but when they were in the process of adopting MC did the prospective parents have no say in whether the surgery was done? I mean, if you’re 3 months from having legal custody of a child, the state can decide to perform cosmetic surgery without consulting you?!? That’s crazy! Or am I reading this wrong? Also, doesn’t social services have other things to focus on?

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      From our own domestic adoption, I can tell you that until we were the parents, we didn’t have rights.

      And, I thought the same thing…how does an overwhelmed social service agency find time and resources for this surgery when I am confident there are kids under their care with pressing medical needs going unmet? Fear of gender, non conformity is powerful

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      “For example, many women are at risk for ovarian cancer, but just because ovarian cancer is a medical condition associated with women doesn’t mean that being a woman is a disease, because some women can get ovarian cancer.”

      Pardon me as I’m cis and still somewhat newly getting a handle on how to avoid cissexist phrasing, but I was under the impression that the use of “many women are at risk for ovarian cancer” and not “all women are at risk” was well-worded to avoid that mistake (unless you’re specifically pointing out the lack of mention that trans* males, genderqueer and interest individuals are at risk as well, in which case I suppose it isn’t). The statement that ovarian cancer is associated with women more relates to the idea of public perception, at least by my reading.

      I’m personally heavily involved in the hereditary breast & ovarian cancer community. As the only LGBT-identified administrator of an organization that’s been heavily publicized in the last few days since Angelina Jolie’s op-ed, I’m trying to adapt the group’s language to be as inclusive and safe of a space as possible. Do you have any suggestions for a better way to word that?

      (Feel free to message me, as I don’t intend to derail the thread.)

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      Hey there, Liz. Thank you for your comment. I tried to make it clear in that passage that not all women have ovaries by (as K as said) using qualifiers like “many women are at risk” instead of all women, and “some women can get ovarian cancer” instead of all women. I am well aware that not all women have ovaries – I don’t have ovaries myself! :)

      Sometimes I do include a specific statement saying, “This is, of course, how it is, because complexity/identity.” I felt that this was one of those instances where multiple qualifiers would work, but can be better at seeing if I could make such things more explicit in the future.

      Thank you, too, for your comments, K! That was the spirit of those statements.

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    Quick correction: The link for “#3″ is actually not about Caster Semenya, but Pinki Primanik, an Indian track track athlete. Some words somehow got lost to the blogosphere. When you click on that link at it’s not about Semenya, that is okay – it is not supposed to be!

    Thanks!

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    I literally just finished writing a paper on the differing definitions between transgender and transsexual, and one of the things I realized was at the crux of my argument was the intersex population and where they fit in the argument. If we stop saying these doctors are changing the kids’ gender, we’ll really be getting somewhere.

    Let’s be clear here: They’re altering the look of the child’s outer reproductive organs, not their gender, not even their sex. Their sex is based on chromosomes, not what their genitalia look like. Their gender is an expression, not what their genitalia look like.

    I think the biggest issue with cosmetic surgery on an infant’s genitalia is that you’re forever altering their body. The kid can grow up with any gender expression they want, but their genitalia–how they look, feel, function–will never be the same.

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      ” Their sex is based on chromosomes…”

      Er… not as such, though it does bias the odds of biological sex development going down one path or another.

      1 in 300 men aren’t XY. Some women are. Rarely, so are the daughters they give birth to, as here:

      “A 46,XY mother who developed as a normal woman underwent spontaneous puberty, reached menarche, menstruated regularly, experienced two unassisted pregnancies, and gave birth to a 46,XY daughter with complete gonadal dysgenesis.” — The Journal of Clinical Endocrinology & Metabolism January 1, 2008 vol. 93 no. 1 182-189

      Genitalia is no better a definer either. Apart from “ambiguous genitalia”, that changes after birth for some people, causing an apparent “natural sex change” if you go by that.

      “In an isolated village of the southwestern Dominican Republic, 2% of the live births were in the 1970′s, guevedoces (actually male pseudohermaphrodites). These children appeared to be girls at birth, but at puberty these ‘girls’ sprout muscles, testes, and a penis. For the rest of their lives they are men in nearly all respects…”

      If you were to base determination of sex on any one criterion, rather than a number, doing it based in brain anatomy makes the most sense. That way, at least gender matches well.

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      Agree except for the “sex is defined by chromosomes” thing. There are four types of human sexual “dimorphism”, only one of which is reliably binary (as far as I know). These are chromosomes, reproductive organs, hormones, and gametes. In some cases, the surgeries performed on intersex children do change their sex as defined by their reproductive organs. Chromosomes are not the be-all end-all of biological sex.

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