on July 7th, 2015 1 Comment
“How many of you know what intersex is?” surgeon and author Ilene Wong, MD, (who did her residency at Stanford and writes under the pen name I.W. Gregorio) asked an audience of medical students, doctors and community members at a recent panel discussion on the topic on Stanford’s campus.
Since we’d gathered at the event, which was sponsored by Stanford’s Medicine & the Muse Program and Pegasus Physician Writers, to listen to a book reading and discussion about intersex — a term that describes sex characteristics that are neither all female nor all male — you might think we were all well-informed about the topic. We were not, and our fidgety response to Gregorio’s opening question hinted at the problem we came to discuss: a widespread lack of knowledge in the medical, and general, community about intersex individuals.
As Gregorio and her fellow panelists, Jeanne Nollman, founder of the AIS-DSD Support Group, and Hillary Copp, MD, a pediatric urologist at the University of California, San Francisco, delved into the discussion topic – “Has the medical community failed the intersex community?” – we gained a better understanding of what it means to be intersex, why so little is known about it and what can be done to remedy this.
“I met my first intersex patient when I was pregnant with my first child,” Gregorio told us. “It made me think of what it means to be a woman and how your chromosomes determine so much.” At the time, medical students received little training on intersex, Gregorio said. “There’s still a huge gap in medical education on what intersex is. Too often intersex is distilled down to one line on the chalkboard or one question on an exam.”
Her experience inspired Gregorio to write None of the Above, a young adult book about an 18-year old girl who learns she is intersex. “Books help us think about and talk about difficult issues,” she explained. “My intent is to let people know that the person next door could be intersex.”
Intersex is more common than you may think, occurring in approximately one in every 2000 individuals. This means that a person is more likely to be intersex than they are to have cystic fibrosis – yet most people have heard of the latter condition.
So, why isn’t intersex more well known? Nollman and Copp offered some possible explanations. “Many people think [it’s] a dirty thing because it has the word ‘sex’ in it,” said Nollman. “They think it’s something shameful they can’t talk about.”