Reprinted from the Utne Reader
Alice Dreger has made it her life’s work to investigate–and at times expose–the unethical medical treatment of people who have intersex conditions. “I either get love mail or hate mail,” explains the Northwestern University bioethicist and medical historian. The hate mail comes from people whose bad deeds she reveals, the love mail from people thanking her for “saving their lives.”
About 1 baby in 2,000 is born with ambiguous genitalia: The phallus could be considered either a micropenis or an overlarge clitoris. Many more are born with subtler disorders of sex development, such as a slightly-larger-than-standard clitoris. Yet other sex anomalies don’t become apparent until adolescence, as in the case of a girl who never menstruates because she has undescended testes rather than ovaries. As recently as 15 years ago, children were routinely subjected to cosmetic genital surgery and hormone treatments in medical practices shrouded in secrecy. “They were sex-reassigning boys with small penises to be girls,” says Dreger. “They were cutting down clitorises willy-nilly. And they were not always telling families what they did and didn’t know.”
When Dreger began investigating in 1996, she was stunned. Many people grew up not knowing they were intersex. They simply knew that something had been “fixed” down there and that they had spent a lot of time with their legs spread for parades of physicians and medical students. Some doctors kept parents as misinformed as the patients themselves; in other instances, parents were complicit in secret-keeping. The majority of patients had never met another person with the same condition. For some, genital surgeries resulted in little or painful sexual sensation and even the inability to experience orgasm. Doctors, Dreger says, led one man to believe “that if anybody ever saw him naked, his life would be over.”
Dreger helped lead the Intersex Society of North America and united hundreds of isolated patients. She became the writer of the movement, interviewing people and giving voice to their unspoken conditions. Things have come a long way in the past 15 years. Doctors now put families in touch with support groups. Patients work with pediatric/adolescent gynecologists and psychologists, who have a long-term view of sexuality. Almost no micropenis boys are made into girls anymore. However, there is still a long way to go. The medical literature may show a tremendous change in attitude, but in practice there is still not always full disclosure or informed consent, and repeated genital exams continue to be the norm.
One surgeon “surgically reduces girls’ clitorises for ‘social reasons,’ which is horseshit,” says Dreger. “And then when they’re 6 years old, he brings them back and strokes them with a Q-tip to see if they can still feel their clits. . . . I mean, I was stunned.” With the help of national sex columnist Dan Savage, Dreger placed the surgeon at the center of a medical controversy that she hopes will benefit patients. And she will keep working to stop medically unnecessary genital exams, she recently reassured a support-group audience during a keynote speech. “They literally stood up and were applauding, and a bunch of them were crying.”
Originally published by the Utne Reader.