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Written for the Fall 2001 issue of Gay and Lesbian Medical Association (GLMA) newsletter.
Until 1973, the American Psychiatric Association defined homosexuality as a mental illness, legitimizing to medical attempts to "cure" gay men and lesbians of their sexual orientation. It was the rise of the political and social movements by LGBT activists and professionals that convinced the mostly straight APA to change its position. Today, many "out" intersex people are fighting a similar battle to depathologize anatomical sexual difference and for better, more patient-centered medicine.
Often known by the misleading Victorian label "hermaphroditism," intersex people are those born with physical conditions outside of what medicine considers proper female or male bodies. The size of the intersex population depends on where one draws an arbitrary line, but at least one in 2000 babies and children (that is, about five per day in the United States) are subjected to "genital reconstruction" to make their bodies better fit the range considered acceptable as females or males.
Medical dogma has been that these surgeries are necessary for intersex people to live happily and productively, even though genital shape itself does not cause any health problems and no long-term follow-up demonstrates any benefit of these drastic interventions. On the contrary, many intersex people have attested to emotional, physical and sexual damage caused by these misguided interventions.
Until recently, intersex people's experiences have been almost completely unknown outside a few medical specialties, leaving them having to deal with the aftermath in isolation, secrecy and shame. Today, as gay men and lesbians did decades ago, intersex people are breaking silence, coming out, and organizing for social and medical reform.
Intersex activists and our allies believe that the practice of "correcting" children's genitals is not based on the actual health needs of the child, but is an expression of institutionalized homophobia within the medical establishment. And for good reason: the very existence of intersex people threatens the idea that women and men are naturally distinct and made for each other. Which bodies are not permitted to exist? Boys with small or hypospadic (i.e. urethra at the underside rather than at the tip) penis, girls with large clitorised, fused labia or shallow vaginas. In other words, any bodies that make "normal" heterosexual intercourse difficult or impossible are pathologized.
Further consideration of these interventions reveals a pattern of institutional misogyny. When a boy's phallus is deemed incapable of penetrating a vagina as an adult, the default procedure is to "re-assign" the child as female because "the surgery is easier" or even "You can dig a hole but you can't build a pole." This medical logic effectively literalizes the feminist analysis that male is the standard and everything else is the "Other." Further, the success of these surgeries is judged by parents' and physicians' satisfaction with the infant's cosmetic genital appearance rather than the level of sexual and emotional satisfaction available to the patient as an adult.
Recognizing these factors, in 1998 GLMA passed Resolution 105-98-105, calling for further research on the long-term effects of these surgeries and urging physicians to fully disclose the reported risks and lack of long-term research associated with surgical intervention. In the three years following GLMA's groundbreaking resolution, tides have begun to shift both within the medical community and beyond.
In the year 2000, the North American Task Force on Intersexuality was established by leading physicians, psychologists, as well as several people from intersex groups. Endorsed by the American Academy of Pediatrics and many other medical associations, NATFI is charged with creating new guidelines for treating intersex children. Also in the same year, Lawson Wilkins Pediatric Endocrine Society devoted one third of its annual meeting to the discussion about treatment of intersex children, and invited Cheryl Chase, the founder and executive director of the Intersex Society of North America, to give the closing presentation.
As more intersex people come out and begin organizing, the global intersex movement is rapidly gaining visibility in the mainstream media as well. The New Scientist, Newsweek, the New York Times, National Public Radio, and Discovery are just few of the media outlets that have covered the intersex "controversy" in a sympathetic manner. Some LGBT groups have changed their names and mission statements to include and embrace the "I," starting with East Bay Pride (Oakland), ACLU Northern California LGBTI, and the University of California's system-wide LGBTI Association.
Regardless of how they identify their sexual orientation, many intersex activists are taking lessons from decades of work by LGBT movement, collaborating with local LGBT activists to challenge homophobic and misogynist medical standards. As a group of LGBT health care providers, GLMA stands in the perfect position to lead the movement within the medical community to transform the procedure by which intersex children are treated.
Visit our web site to read more about the Intersex Society of North America and our work, and join Cheryl Chase and Jorge Daaboul (Director, Division of Endocrinology, Children's Hospital of Oakland) at our presentation during GLMA's annual conference in New Orleans this year.