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)

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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