Saturday, October 26, 2013
In recognition of Intersex Awareness Day, I'm pleased to publish this commentary by Courtney Fraser, Fall Intern at Advocates for Informed Choice (’15, University of California, Berkeley School of Law):
There’s no “I” in LGBT: How Reproductive Justice can (and must) end intersex invisibility
“Intersex? What’s that?” – so begins a series of questions I have become quite accustomed to fielding in my Civil Externship seminar. My classmates, some of whom are avid social justice advocates, are all familiar with reproductive rights; many of them even support LGBT causes, but few have ever heard the word “intersex” before. Most people probably haven’t. In honor of International Intersex Awareness Day, October 26, I’d say there’s no time like the present.
“Intersex” describes those who are born with ambiguous genitalia, or bodies that otherwise do not match societal ideas of “typical” male or female configurations. My externship this fall is with Advocates for Informed Choice, an (read: THE) organization working to protect the rights of intersex people. Right now, I have the honor of being involved with AIC’s groundbreaking litigation on behalf of a child (identified as M.C.) who suffered unnecessary genital surgery while he was still a baby. When I am called upon to explain my work to the class, invariably someone is shocked. That happens? All the time. To how many people? As many as 1 percent of live births are intersex, and 0.1 or 0.2 percent become victims of “normalizing” surgical mutilation.
So why aren’t more people outraged? Why do so few people even know about this?
I’ve heard the explanation that intersexuality is a niche issue. It’s not. That’s bull. Not only are intersex issues (a) clearly important in their own right and (b) closely tied to queer and trans* causes, but (c) this is also a reproductive justice issue, which means that if you are a woman – if you are a person – you are obligated to care about this.
The real reason that most people are unfamiliar with intersex issues is, itself, part of the problem: the standard of care for intersex infants still usually follows the concealment model, which involves doctors misleading patients and their parents, gaining misinformed consent or none at all, and conducting genital surgeries that are medically unnecessary and unfathomably harmful – these surgeries can leave patients with little or no sexual function, in chronic pain, and sterile.
Bodily autonomy, personal choice, and identity determination are of course central to the reproductive justice movement, and those who frame LGBT rights as reproductive justice concerns will accept intersex issues under the same logic. But we don’t even have to look that far for the connection. Intersex people are literally having their reproductive capacities destroyed without their consent because of who they are. This is no less a reproductive justice issue than the illegal sterilization of incarcerated women in California, which garnered extensive attention this summer. That story involved about 250 women. Four million babies are born in the U.S. annually, give or take, which means that between four and eight thousand intersex infants are being sterilized every year.
A tenth of a percent sounds much, much bigger when you put it that way.
So, what can we do? Let’s draw a parallel to another reproductive justice issue – abortion access. To (perhaps grossly) oversimplify, cultural barriers to addressing this problem work on two levels. The first is visibility. People don’t know how many women are obtaining or needing abortions – or their reasons for it – or that some of these women are most likely people in their lives. As with intersex stories, abortion narratives that put a face on injustice are not often shared, because of socially imposed shame or a personal desire for privacy or something that looks like the product of both – and when they are shared, prong two kicks in. Even when invisibility is surmountable, people still cling to the idea that this injustice is justified – that women who need abortions still shouldn’t have them, because of fetal personhood, or puritanical mores, or whatever. With intersex surgeries, people who know they go on – including the doctors who perform them – convince themselves they are the treatment necessary to stop children from growing up “confused” or “deformed” or ashamed of their bodies. What needs to be realized – as Anne Tamar-Mattis, Executive Director of AIC, points out – is that surgery “sometimes causes the problems it purports to solve.” Non-consensual and unnecessary genital surgery tells children that their bodies are wrong – so wrong, in fact, that even non-functional genitals that may not concur with the child’s gender identity would be preferable to what they were born with. Understood this way, early surgery seems like a far more likely root of confusion and shame than the alternative – postponing medical intervention until a child can make his or her own informed and empowered decision.
AIC’s current lawsuit addresses both prongs of the problem. As the first case of its kind, it has already been reported on by over 130 blogs and news sources, raising the profile of intersex issues in the public consciousness – and with visibility boosted, channels will be open to receive the message that what is happening to children like M.C. is in no way justified – medically, culturally, or otherwise.
To learn more about why intersex rights are of concern to the reproductive justice movement, see LSRJ’s fact sheet at http://lsrj.org/documents/factsheets/13_Intersex.pdf.