Saturday, April 7, 2012

How Homophobia Leads to Surgical Mutilation: Intersex Stories

My last post on words not to use when describing the LGBTQI community was missing an entry: "hermaphrodite." 

Today at a symposium on intersexuality, intersex folks themselves explained exactly why. One woman explained that historically hermaphrodites have been depicted as mythical creatures, ranging from weird to monstrous. To have that word describe her and her community feels very dehumanizing. Others pointed out that the word is also reductive: when people hear "hermaphrodite" they think "person with vagina and penis." However, as I explained in a post last year, intersex people range widely, and according to the Intersex Society of North America, the "total number of people whose bodies differ from standard male or female" is 1 in 100.

Panelists also discussed the inclusion of the "i" in the LGBTQ acronym, and how there is little consensus about it in either the intersex or the LGBTQ community. However, both communities recognize that the pathologization of intersex people stems greatly from homophobia. Until the 1990s, the standard of care for children born with ambiguous genitalia was to operate, taking the surgical route that would most easily prepare the child's body for heterosexual sex. "Too small" penises were castrated and parents were instructed that the child should be raised a girl. "Too short" vaginal tissue was lengthened and the child would have to do dilation (a painful process!) every single day to maintain a "big enough" vagina, according to doctors' measure of what acceptable bodies should look like.

These surgical practices were (and in many places, still are!) done sometimes without parental consent, but even if the parents were asked, it was essentially a forced choice. Doctors made it sound excessively severe to parents, essentially telling them that it was not worth their child living as a male if their his penis might not be able to penetrate. And they explained--subtly or not so subtly--that enlarged clitorises increased the chance that their girl would become a lesbian.

And hugely important, these non-life saving, essentially cosmetic surgical procedures on infants and children do not take into account what the child wants. Or what the child will think when they grow up and have to deal with the consequences. Happily, intersex activists have made huge strides in the last 20 years, and the standard of care is moving to informed consent, where children and parents must know their diagnosis, the risks and benefits of surgical intervention and importantly, alternatives, including non-treatment.

Two of the panelists were in their early 20s, and both have Androgen Insensitivity Syndrome (AIS). This means they have XY chromosomes but their bodies are unable to respond to testosterone. They develop externally as female and identify as female but have undescended testes. One of the women was operated on in early childhood. The other's parents waited and gave her the choice. She decided not to have surgery because there was nothing wrong with her.

The young woman whose parents did not give her the choice (and who just told her a few years ago) clearly was grappling with the meaning of having the surgery a foregone decision. Unlike many other intersex people who are mutilated as infants and then must have many painful follow-up surgeries (to repair scar tissue etc.), I don't believe she had to have follow-up surgeries. So even though she did not experience physical pain in her adolescence and adulthood because of her surgery, it was still psychologically difficult. This to me indicates that unless there is a life-saving function to genital surgery before people can provide informed consent, it is ethically wrong to perform it.

These surgeries show starkly the dangers of our heteronormative, sex-normative and gender-normative society. As one of the panelists aptly pointed out, as a society we conflate how typical something is with how normal it is. And if something is not "normal" then it is medically pathologized. If we could think of sex, gender and sexual orientation as they truly are: continuums and spectrums, and appreciate the biological diversity our species and so many other species have, we could save so many people from hurt, mutilation and discrimination.

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