Where does the story begin? Perhaps in the delivery room, when the doctor hands the newborn baby, still slick with blood and mucus, to the ecstatic parents but isn’t able to say definitively, “It’s a boy” or “It’s a girl.” Or it could start earlier, in the womb, when the cells are dividing like mad to create the many complicated and wondrous parts of a new human being. Perhaps the story really gets going later, when the surgeon slices into the baby’s phallus—considered either a micro-penis or an overlarge clitoris—in the first of many treatments to cosmetically assign a crystal-clear gender. Or maybe the heart of the story is the slow cultivation of shame that comes from the years of secrecy and misinformation that follow infant gender reassignment.
By far the happiest place to dive in, for this particular rendition of the story, is when Jim met Alice Dreger a few months ago and told her: “You saved my life.”
Jim is a 50-year-old man who was born with a disorder of sex development (DSD), formerly known as intersex, formerly known as pseudo-hermaphrodism. Alice is a bioethics professor and advocate of the basic human rights of DSD patients: the right to grow up without devastating cosmetic surgeries that take away sexual sensation or, in some instances, the ability to experience orgasm; the right to know one’s own medical history; the right to make one’s own medical choices.
Alice tells Jim’s story in Bioethics Forum (02/14/2011):
[Jim] was born with ambiguous genitalia—with hypospadias (where the opening of the urethra is on the underside of the penis), with a smaller-than-average penis, and a herniated testicle. Against doctors’ advice, his parents raised him as a boy. The docs of course had recommended sex reassignment, as was standard. His parents did not resist because they were radical; they resisted because they were terrified and young and I’ll bet they didn’t understand why you would take a baby with testicles and make him a girl.
Of the 2,600-some babies born with ambiguous genitals each year in the United States, Jim is among the rare few from his generation who escaped having his sex organs resculpted to look like a vagina. And because of social activists such as Alice and others with Accord Alliance (previously the Intersex Society of North America), he eventually learned that he was not alone—a priceless gift.
Today Jim has some really beautiful things in his life: A wife. A daughter. A doctor who listens to his concerns and helps him make the right choices for his body. And he had the honor of meeting Alice and telling her his story:
He said that he knew, from my Web site, that some people had objected to the move from talking about “intersex” to talking about “disorders of sex development.” But, he said, “I love the new term, DSD.” He said it captured his experience—that what he has is a medical condition. He doesn’t have double sex, or double gender, as people seem to think when they hear the term “intersex.” He has a DSD.
Source: Bioethics Forum