“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.”
Nollman, who was born with non-functional internal sex organs and is now an advocate for intersex individuals, described how misconceptions about intersex affected her when she was diagnosed with Swyer syndrome. Although her doctors knew she had XY chromosomes when she was 18, Nollman didn’t learn about it until she was 25. “[My] doctors thought that if I knew the truth, I would commit suicide. Which made me think if I was lied to, I must be a freak,” she said.
“That was years ago,” Nollman explained, acknowledging that attitudes on intersex patients is changing. Copp, who works at one of the few institutions in the U.S. with a disorders of sexual differentiation team, described the process of telling a new parent their child is intersex. “When you have a baby, everyone wants to know if it’s a boy or a girl,” said Copp. “We are very careful to assign a gender [that is] based on tests and laboratory work. Then, we meet with the family and talk about the best gender rearing for that child, explaining that they may gender-reverse [and identify with a different sex] later.”
A member of the audience asked the panel how doctors can provide better care for intersex patients. “Be honest,” Nollman said. Honesty, clear communication and compassion are essential, the other panelists agreed. “Let them know they are not alone,” said Nollman.
For more information and resources about intersex, visit Gregorio’s website.
Previously: “Drastic, unnecessary and irreversible medical interventions” imposed upon some female athletes, In Uganda, offering support for those born with indeterminate sex, Living with disorders of sex development and Bay Area’s first DSD parent support group meets this week
Related: Gender X: The battle over boy and girl
Image courtesy I.W. Gregorio