LisaJ’s Danio’s (hangover error) posts about Usher Disease (I and II), as well as my own syllabus preparation for the upcoming semester, have gotten me thinking about issues of intersexuality. In particular, her noting of the geographic issues related to the prevalence of various forms of Usher disease reminded me of the concentration of five-alpha-reductase deficiency in parts of Turkey, Papua New Guinea and the Dominican Republic.
Some folks are probably asking, “What is this intersexuality thing?” Basically, it’s a range sexual development disorders in which people’s bodies develop in such a way as to place them in a “border region” of sex. Hermaphrodism is what people usually think of, but there is a wider range of conditions, including hypospadias and congenital adrenal hyperplasia.
If any of you have read the novel Middesex you already have an idea of what I’m talking about with five-alpha-reductase deficiency. People with this condition are genetically XY, but during fetal development something happens such that in many people the testicles may not descend, the scrotal sac may not fuse, and the penis can appear more like a clitoris (such an ambiguous thing is often called a microphallus). Because of these developmental issues, people with this condition are given a female gender designation at birth. Once puberty hits, though, the testicles descend, the penis may enlarge, the “labia” fuse to form a scrotum, and other male secondary sex characteristics appear. One of the things I find so interesting about this particular condition is the way that it has been routinized in the patterns of life and cultural systems in parts of the Dominican Republic. The people living in these areas have their own term for the condition, “guevedoce” (“eggs/balls at 12”).
In class, I often use a video produced by the Intersex Society of North America, an organization that shut its doors this years in favor of a different advocacy organization, the Accord Alliance. In particular, this segment of that video talks about, and interviews, someone who identifies as a guevedoce, as well as his family. (YouTube won’t allow it to be embedded.)
It’s this issue of how people with various conditions are integrated into social life that is my primary concerns. One of the things intersex activists have been challenging for the past decade or so is infant genital surgery. When children with some sexual development disorders are born with ambiguous genitals they are quite literally made to fit into one of the existing gender categories. “Fixing” them means surgery to make their genitalia more closely resemble “normal” genitals. If the phallus falls inside the middle range, where it’s “too long” for a clitoris or “too short” to be a penis, well, it’s snip-snip time. Many of the decisions to engage in surgery are based not on medical necessity, but social preference. Questions such as, “Will he be able to stand to urinate?” or “Will her partners be turned off by such a large clitoris?” or “How will the parents deal with looking at such a strange body while changing diapers?” can become more important issues when determining whether to operate than such things as “Will cutting part of the phallus off affect this child’s sexuality later in life?” (Ann Fausto-Sterling has an excellent discussion of these issues.)
Not surprisingly, surgeries do affect folks. Many report a loss of sensitivity from having such operations performed on them. (As one of my students once said to the other women in the class about the possibility of having half a clitoris and no sensitivity, “Wouldn’t it just make you tense all the time!”) It’s more than loss of sensitivity, though. There are often other complications that require more than one surgery. Ongoing pain or recurrent infections are not uncommon.
This is one of those spaces where I get all anti-normalization. These people’s bodies are being normalized–they are being reconstructed so they fit within normative assumptions about what genitalia must look like based on statistical averages. And, it’s done without their consent. Intersex activists have been successful in increasing awareness in the medical profession, but there are still issues. Many of these flow from the gender order we have in this society. The problem with such medically unnecessary genital surgeries isn’t these babies’ bodies, but social beliefs about what those bodies are supposed to look like.