TMC PULSE

t m c » p u l s e | o c t o b e r 2 0 1 7 30 Raising Awareness of Intersex Issues Common surgical practices are being reevaluated E very Friday night, for years, Mo Cortez and Koomah attended the same youth group. As teenagers, they sat in a room together for hours, neither knowing they each harbored the same secret: they were born intersex. "We both didn't talk about it, because there was a lot of shame and stigma," said Koomah, who goes by one name. "We sat next to each other for years feeling like the only person on the face of the planet." It wasn't until 2012, about a decade after they had met, that they discovered a kinship they never knew existed. Koomah, an artist, had written a perfor- mance piece that was related to being intersex. Cortez heard of the perfor- mance through a friend, which led to the two reconnecting. "That day, we decided nobody else should ever feel like we had," Koomah said. June 17, 2012, marked the found- ing of their organization, the Houston Intersex Society. The term "intersex," also known as "differences of sex development," or DSD, refers to "congenital conditions in which development of chromosomal, gonadal or anatomic sex is atypical," according to the American Medical Association (AMA). While DSD con- ditions are not common, they are also not particularly rare—some estimates indicate between 0.05 and 1.7 percent of the population are born with intersex traits, according to the Office of the United Nations High Commissioner for Human Rights (OHCHR). The upper limit of that range is similar to the number of people who are born with red hair. For decades, intersex conditions were seen as issues that needed to be corrected as soon as possible—often via surgery on infants or young children. "It used to be believed that a lot of somebody's gender was socially determined," said Janet Malek, Ph.D., an associate professor in the Center for Medical Ethics and Health Policy at Baylor College of Medicine. "The practice was to make a decision as early as possible, and then raise the child with that gender the parents or doctors agreed was more appropriate, often depending on physical features." Cortez, 33, a contractor at a military vendor, recalled the first time he realized his body was different—when he woke up in the hospital at age 5, post-surgery. "Medically I was considered 'cor- rected,' but that was the first time I had a vague inkling I was intersex," he said. Born with ambiguous sexual organs, Cortez said doctors told his mother to raise him as a female. When he was 5 years old, his "mother was turned in to child welfare because someone thought she was raising a boy as a girl," according to personal medical records provided by Cortez. "They went ahead and performed normalization surgery" to make him appear more female, said Cortez, who identifies as male. "For the rest of my life, I will have to take synthetic hormones." Cortez's experiences are not uncommon among intersex adults. But in recent years, many have been advocating for a change in the way the medical community approaches inter- sex conditions. A watershed moment, Koomah said, was a public demonstra- tion held by intersex organizations at a 1996 American Academy of Pediatrics conference in Boston. Koomah, left, who goes by one name, and Mo Cortez first met as teenagers, not knowing they were both intersex. They reconnected a decade later and founded the Houston Intersex Society. The idea here is that we should let the child be the one to make that decision. If the parents choose to have the surgery very early on, they take that choice away from the child. Out of respect for the fact children will grow into adults who will need to make their own decisions, we want to oer them that choice. — JANET MALEK, PH.D. Associate professor in the Center for Medical Ethics and Health Policy at Baylor College of Medicine B y S h e a C o n n e l l y

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