Intersex Awareness

November 21, 2014 10:10 AM

Inter/Act Youth is a group for young people with intersex conditions or disorders of sex development (DSDs) who share their stories with the world. Their parent organization is Advocate for Informed Choice, a legal group that works to stop irreversible "corrective/normalizing surgeries" on infants who cannot consent to the medically unnecessary procedures.

Lately they've been partnering with MTV show Faking It to create public awareness around the character Lauren, a nuanced realistic character who happens to be intersex.

Emily Quinn, who consulted on Faking It, explains to Vice, "I'm Intersex and My Body Works Just Fine, Thank You." She also did an Reddit AMA.

MTV's interview with Amanda on what it's like to be an openly lesbian intersex college student.

Inter/Act member Ali tells her true life story of dating with Swyer's Syndrome and faking periods during sexual encounters.

Shana discusses coping with the medical procedures performed without her consent as a baby. Monica is also working on her acceptance of the choices doctors made in her treatment. Nthabi has not always been happy with the ways her body is different, but is now grateful she did not undergo childhood surgery. Lexye stresses the importance of doctors and patients working together.

Abby and Sarah discuss disclosure.

A youth discussion about the worries of having crushes while intersex.

An explanation of the similarities and difference between being intersex and being transgender.

What We Wish Our Doctors Knew Brochure(PDF) Intersex youth speak out about what all doctors should know about intersex and DSD conditions and the needs of real people living with these conditions.

What We Wish Our Parents Knew Brochure (PDF) Intersex youth share their thoughts on what they wish their parents knew and offer insights on ways families can support.

Intersex FAQ by Inter/Act. FAQ by the Intersex Society of North America. Wikipedia article on DSDs for the medically minded. Inter/Act previously. Efforts to stop surgery on intersex kids previously.

posted by Juliet Banana (17 comments total)

I once heard a doctor discuss surgery as "carefully controlled damage." "No matter how you see it, you're still taking a knife and cutting a person," he said soberly. "It should never, ever be undertaken unless all other options have been explored."

It seems that in far too many cases involving intersex children the only discomfort relieved is that of the people unable to accept variation into their worldview. Nthabi's account of feeling "privileged" to have kept her original, perfectly healthy body intact made me grieve for those surgically traumatized without consent.

Good post. Ignorance is a tough enemy to slay but you have to start somewhere. I especially liked the "What We Wish" brochures.
posted by kinnakeet at 10:40 AM on November 21, 2014 [7 favorites]

Isn't this a double ?
posted by k5.user at 10:53 AM on November 21, 2014

k5.user there was the michael phelps-related post yesterday but it got taken down, I think. This addresses the intersex story without the weird sensationalism associated with that.
posted by BuddhaInABucket at 10:55 AM on November 21, 2014

k5, the last one (which seems almost the same as this one) was deleted.
posted by michaelh at 10:57 AM on November 21, 2014

I still love the pamphlets even though it still kind of bums me out that they're necessary at all.

Is there any sort of movement within the medical establishment to make it so surgery is not done on infants or children too young to express an opinion or preference (unless there are actual urogenital function problems, of course)? Because it would be awesome if that were the standard.
posted by rtha at 10:59 AM on November 21, 2014 [3 favorites]

OK, sorry for the derail, this looked very familiar. I should go find the deleted threads web page again.
posted by k5.user at 10:59 AM on November 21, 2014

OK this is all very interesting but Inter/Act is having to fundraise $1,200 because "We are helping MTV as part of our mission, but we're not funded by MTV to do so" are you fucking kidding me????
posted by DarlingBri at 11:05 AM on November 21, 2014

The Emily Quinn interview at VICE is excellent and also introduced me to the acronym GSM - Gender and Sex Minority, which I love. Thanks for all these links!
posted by DarlingBri at 11:25 AM on November 21, 2014 [1 favorite]

Inter/Act is a great group, and I'm very happy that they've been getting media attention. That said, I'm less than enthusiastic about the portrayal of intersexuality on Faking It. The intersex character is a hyperfeminine archtypical Mean Girl, and the revelation of her intersex status in line with the longstanding trope used in media portrayals of stealth trans women (she's so feminine and attractive--her boyfriend never knew--her secret that somehow could undermine his masculine status--how erotic/sinister/titillating!). The very title of the show--while supposedly meant to imply that all of us are on some level "faking it" in our lives, explicitly frames an intersex girl as a fake girl. It's all pretty meh to me--but the intersex community is rendered so invisible and is so marginalized that we're in the position lesbian and gay people were years ago, when any media portrayal of a same-sex-attracted person who wasn't some sort of moral monster was something to celebrate. It's a pretty low standard.

As for genital surgery being imposed on infants unable to give or withhold consent, with life-altering consequences--there are indeed challenges being raised to the practice, in Europe and Australia--but the US medical establishment remains firmly convinced infant genital reconstruction is necessary and good. There's more public awareness now of intersex people's complaints about such surgery (though still not a lot), but the medical establishment's response is to say that we are complaining about old surgeries, and their methods have improved vastly, and that children would face ostracism as freaks, unable to find a mate, and at risk of suicide if "corrective" surgeries were not performed.

(I'd note that in both Europe and Australia, the acronym "LGBTI" is used a lot, and there is actual incorporation of intersex issues into the core advocacy mission of organizations. I don't know why this hasn't been the case in the US, but I do think that American LGBT organizations could be very helpful in publicizing intersex issues, if they chose to do more than they do now (have a link or a pamphlet around somewhere and give us the occasional mention when discussing trans issues).)
posted by DrMew at 12:07 PM on November 21, 2014 [6 favorites]

I learned about Inter/Act at a T.G.I.F (Transgender, Gender non-conforming, and Intersex Freedom) Picnic. I wish partnerships between communities like that happened more often.
posted by Juliet Banana at 12:19 PM on November 21, 2014 [1 favorite]

Thanks for posting this.
posted by gingerbeer at 1:03 PM on November 21, 2014

I think it's great that they're increasing visibility, but I'm not sure if the best way to do that is to yoke themselves to Faking It. I haven't seen the series and I may be wildly off-base, but a quick Googling leads me to think that Lauren Cooper (the blonde pictured all over the website) is a "mean girl" kind of character and she's actually the antagonist of the show. Is this a case of people being so starved for representation that they're excited about a character who doesn't actually represent them well?

Question for anybody who has actually seen this show: is her intersexuality treated like a joke? Is it a "funny" secret that the bitchy queen bee is actually intersex? I saw a gif where somebody on the show was apparently addressing her dismissively as Anderson Cooper, and it's hard to imagine a circumstance where that's OK. I worry that it's a situation where Lauren Cooper is a nasty bitch and one of the "good girls" puts her in her place by making a snarky crack about her being intersex. If this is even slightly that, that is such a heap of steaming shit.

I don't mean to attack this show or this site if they don't deserve it. Maybe Cooper is actually a strong, awesome character and it's great that some intersex kids are finding a role model in her. But a quick look gave me a bad feeling, and I'm curious to learn more.
posted by Ursula Hitler at 2:47 PM on November 21, 2014

It's like they're not even trying to pretend they've researched this.

I think that's a really uncharitable way to think about this. It's a really tough decision for parents and for doctors. Because what do you do? You want the thing that will give your kid the best chance at happiness. And there's no way of knowing what they will want in ten or fifteen years - not least because environment is a powerful influence. And while we might wish that we don't live in a society that is like that, it is like that. Having ambiguous genitalia is absolutely going to have an impact on your sex life and romantisexual development and progress.

Like, I want to do the right thing, but I don't know how to do the right thing or even what the right thing is. I want to have the answer solved in my head in case I have an intersex child, but I'm not sure that I do. Yes, some intersex folk really wish they hadn't had invasive surgery, but others are glad for it. I mean, I see that some people are saying "ask the kid" but kids really aren't able to sensibly make big life choices like this. I mean my own kid won't even get her ears pierced, even though she wants them and always talks about how much she wants them, because she's nervous about the needle. How many kids are going to consent to painful surgeries with a lot of recovery, even if their adult selves would?
posted by corb at 4:11 PM on November 21, 2014

I mean, I see that some people are saying "ask the kid" but kids really aren't able to sensibly make big life choices like this

The alternative to waiting for the child's opinion is to force a gender on them and hope they don't hate you for it later. Live with the ambiguity for a while, then if the kid strongly identifies as male or female, raise them that way. The intersex people I've met were all adamant that parents should wait, and they convinced me it's the right choice.
posted by Ursula Hitler at 5:54 PM on November 21, 2014 [4 favorites]

Corb, here's the thing. Intermediate genitalia are do not pose any physical danger to anyone. They do not impair one's ability to run and jump, they don't cause heart disease, they don't explode, or leap up and strangle you. They are thus not a medical problem. The only problem involved is one of social stigma.

There are lots of physical statuses that are socially stigmatized. For example, our society stigmatizes dark skin, so that people of African descent who are darker-skinned have lower lifetime earnings than people of African descent with lighter skin. But the way to address this is to fight the social stigma directly, not to name dark skin a "birth defect"--say, "hypermelaninism"--and have doctors "treat" all darker-skinned babies with dangerous skin lighteners.

I'd note that there are lots of issues of bodily sex-conformity in people not diagnosed as intersex that are medicalized. For a woman to have some facial hair is labelled "hirsutism;" for a man to have some breast tissue is labelled "gynecomastia." Doctors and pharmaceutical companies today make millions of dollars "treating" these "conditions" that pose no physical dangers to patients. I find that sad, though I certainly uphold the right of people to request medication or surgery to make their bodies conform more to binary sex ideals if they desire. But note: these treatments are understood to be voluntary and cosmetic. How would you feel if every woman with some dark hair on her lip were rounded up and forced to take medications with potentially dangerous side-effects to make it go away?

If forced medical treatments to make people's bodies more sex-conforming is unacceptable in the case of adults, why is it ok in the case of children? Especially since facial hair can often be regrown, but once you have removed vaginal or phallic tissue, you can't just put it back.

I'm glad you would want to do right by your own child if they were born intersex, and I realize that figuring out how to deal with sex variance in a world that enforces binary sex is challenging. But as an intersex man who is married to an intersex woman and who has a lot of intersex friends, I can tell you that many, many intersex people grow up feeling despair and resentment over forced surgeries--not just those of us like my wife and myself who didn't grow up to identify with the sex we were assigned at birth, but those intersex people who do identify with their assigned sex, yet have been left with loss of capacity for sexual sensation, or loss of fertility, or scarred and atypical-looking genitals after multiple surgeries, or the loss of their natural source of sex hormones. Which is not to say that there aren't any intersex people who are content with their surgically-altered bodies. . . but it's probably also true that if doctors imposed sex-change surgery on non-intersex infants, that some would grow up content. Yet we consider imposing sex-change surgery on non-intersex infants morally repugnant. We believe, at least for non-intersex kids, that one's sex and gender are intensely personal individual characteristics, only to be changed voluntarily at the individual's request--never because of parental preference. Shouldn't we grant intersex children the same human rights?

As for the issue of raising an intersex child, though there are challenges, it's not that big a deal because children wear clothing, and few people see our genitals, should they be variant. It's fine to assign the child a provisional gender of rearing while leaving their genitals intact. Being open with the child about their variance in a matter-of-fact way rather than treating their body as shameful and malformed will do a great deal of good. Instead of trying to program them into only playing with dolls or trucks and punishing them for gender nonconformity (ick), expose them to a variety of toys and activities, and listen to them. If they are unhappy with their assigned gender, they'll let you know. Replacing a paradigm of shame and isolation with one where intersex children and their families receive counseling support and get to meet other intersex children and adults--that is much more likely to guarantee a happy outcome for all than surgery, secrecy and shame.
posted by DrMew at 6:48 PM on November 21, 2014 [13 favorites]

Yes, some intersex folk really wish they hadn't had invasive surgery, but others are glad for it.

That's funny, because reading through all the links in preparation for this post I didn't see a single person expressing gratefulness. Instead, I saw a lot of people struggling to heal from painful, confusing, traumatic procedures that differ only from molestation in many cases because the perpetrator was wearing a white coat.

I'd be interested in seeing any evidence you have that there's a significant population of intersex people who are glad they had invasive surgery done on them before they could weigh the options and consent to it. It's really hard to assume you know the innermost feelings of intersex strangers without any actual statements from the people in question to back them up.
posted by Juliet Banana at 7:04 PM on November 21, 2014 [8 favorites]

Previously on metafilter. (From the last link in the OP.)
posted by rtha at 7:17 PM on November 21, 2014 [2 favorites]