The Riddle of Gender - Deborah Rudacille [66]
“I remember them removing my penis when I was five—oh, I’m sorry,” one participant says mockingly, “reducing it to the size of a normal clitoris.” The participant was diagnosed at birth as a “pseudo-hermaphrodite whose testes hadn’t developed properly, giving me ambiguous genitalia,” and the child’s parents were told instead that their baby was a girl whose ovaries hadn’t developed properly. “Basically, they [the doctors] lied to my parents, coercing them into letting the doctors perform plastic surgery, and giving me female hormones at puberty.” Unlike many intersexual persons, this patient received counseling, which was, she says “more like brainwashing sessions in which they tried to convince me that I was a normal little girl.”
Another participant says, “I was always led to believe that I was male. No one ever spoke to me at all about my state or condition,” even though it was clear that his penis was not at all like those of other boys. “I did have genital surgery” in childhood, he says, “though it was not called that.” Another participant recalled that his own surgery, for hypospadias (incompletely differentiated penis), was presented to him as a hernia operation. “For such a long time, I knew there wasn’t something quite right, but it took me quite a while to figure out what it was,” he says. Born with “a too small penis with a hole somewhere near the end and a femininized scrotal sac,” he says, “I wish people would have just stopped ‘helping’ me. Why do they insist on ‘fixing’ things?”
“Hopkins is where all this comes from,” says one participant bitterly.
In 2002, I sought out Dr. Paul McHugh, chair of the department of psychiatry at Johns Hopkins from 1975 to 2001—after John Money had repeatedly refused to speak with me, pleading old age and illness. McHugh frankly admitted that mistakes had been made. “We’re now seeing plenty of people who are saying, ‘Gee, why didn’t you just let me alone,’ “ he says, adding that in his opinion, “the best thing to do at that time would have been to let these kids grow up and see, to decide themselves”—precisely the point made by intersex activists. He is nonetheless quick to point out that “Dr. Money didn’t do this out of evil. He was trying to think about what would be the best [for the patients]. But we didn’t know enough—even though by that time the organizing force of prenatal hormones on the brain and on sexual behavior was well known in the animal literature, well established. Therefore, in my opinion, we should have held back.”
Dr. Ben Barres, the Stanford neurologist, proposed a different interpretation in our talk, one that acknowledges both the pioneering nature of Money’s intersex research and its limitations. “Money had an idea, a real hypothesis. He studied these issues and asked questions about them, and that’s the way that science gets done. You ask a good question, then you propose a good hypothesis, and then you test the hypothesis. Money did that. And that was pioneering on his part, and I think that he deserves an enormous amount of credit. Unfortunately, the problems begin in the way that he collected his data and designed his studies, and it ended up being an anecdotal report. I think the big moral of the story, as Simon LeVay has said, is that one should be careful about anecdotal evidence.”
The distinction that Barres draws between anecdotal evidence and hard data is an important one in science and medicine. It’s the difference between story and statistics, between my telling you that an herb has alleviated my depression and a clinical trial with 1,400 patients showing that a placebo is just as effective