When I was 22, I sat in the kitchen and did something I never imagined I would do: discussed my medical history with my grandfather. Tears stung my eyes as we talked openly about a secret my parents had fiercely protected me from for years: I’m intersex.
“You must be mad as hell,” he said. “I’m sorry.”
In my case, “intersex” means that I am a woman with XY chromosomes. My condition, called Complete Androgen Insensitivity Syndrome, meant that my body did not respond to male hormones, and so I developed an externally typical female body. When I was 6, I had routine surgery for a hernia in my groin. During the procedure, instead of ovaries and a uterus, my surgeon found undescended testes.
My parents, both physicians, took me to a specialist who had been their professor. Although I was healthy, he said, my condition must be kept secret from me; intersex people who find out might commit suicide. So my childhood physicians prescribed total secrecy.
This was the legacy of the now-discredited “blank-slate” theory of gender that gained traction in the 1960s. For intersex children, the thinking went, “If we make this child look and function like a ‘normal’ boy or girl, and never tell them otherwise, everything will be fine.” Although we now understand that gender identity and expression is informed by a combination of nurture and nature, the importance of an intersex child’s genitals’ being surgically altered remains the bedrock of an ongoing medical paradigm.
Even when I entered medical school 10 years ago, we were taught, without robust scientific evidence, that an enlarged clitoris is “abnormal” and that otherwise healthy undescended testes in a girl are always “precancerous.” Textbooks told me that “ambiguous genitalia” in a newborn baby constituted a “social emergency”—one that required immediate intervention. According to the medical establishment, the intersex body needed to be “repaired.” A decade later, doctors continue to perform surgery on intersex infants and toddlers with the aim of making it easier for them to grow up “normal.”
As a practicing physician myself, I empathize with my doctors. More than to do no harm, we want to do something good. We dedicate ourselves to helping our patients confront and conquer the unthinkable: sickness, pain, and death.
But as an intersex person, I know that “correcting” and concealing intersex bodies causes harm. If our community, including our caregivers and medical-care providers, are to develop standards of care that do good, they must respect bodily diversity. Doctors need to stop trying to avoid harm by trying to fix or hide our bodies and pain.
As a new parent, I can begin to connect with the burden and fear my parents carried. Growing up, I learned little by little that I would never menstruate or be pregnant, that I’d probably need surgery, and after that, take hormone pills for the rest of my life. It was painful to be different, but what made that difference excruciating was the silence about why. My family had no vocabulary to discuss my reality, no connection to anyone who had lived through it, and no assurance that things would turn out OK.