I was born with typically “male” XY chromosomes and internal testes instead of ovaries and a uterus, but my body developed to appear typically female.
My intersex condition was invisible until I reached puberty and failed to menstruate like other girls. On the advice of doctors at a major hospital, my parents agreed that I should have surgery to remove my healthy gonads, without my knowledge or consent.
My natural hormone production ceased, and I was forced onto hormone replacement therapy for the rest of my life. I was just 15. Doctors also recommended to my parents that I receive invasive surgery to create a more “typically” sized vagina — thankfully, my parents refused. I didn’t find out about any of this until I was 41 years old.
Intersex people like me — up to 1.7% of the population — are born with sex characteristics that do not fit typical definitions of male or female. I have androgen insensitivity syndrome. Because my body was resistant to androgens, including testosterone, in the womb, my natural hormones automatically converted into estrogen through a process called aromatization.
Intersex people have been the last bastion of “don’t ask, don’t tell,” with doctors commonly telling parents for many years that the best thing they could do for their children was to have surgery done, even when they are infants, so they can grow up “normal.”
These and other surgeries have been commonly performed on intersex children in the USA since the 1960s. But in the 1990s, intersex adults began speaking out against these non-consensual and medically unnecessary procedures because of their lifelong physical and psychological consequences.
Despite decades of controversy over the procedures, doctors continue to operate on children’s gonads, internal sex organs and genitals when the kids are too young to participate in the decision — even though the surgeries are dangerous and could be safely deferred. It’s rare that urgent health considerations require immediate surgical intervention. The results of these cosmetic surgeries are often catastrophic and the supposed benefits largely unproven.
As executive director of interACT, the nation’s only organization dedicated exclusively to protecting the legal and human rights of intersex youth, I am thrilled that since interACT’s founding in 2006, we have seen progress from medical associations — but not enough, and not nearly quickly enough.
It’s not time for more data collection or dialogue; it’s time for these surgeries to stop.
I know firsthand the devastating impact they can have, not just on our bodies but on our souls. We are erased before we can even tell our doctors who we are. Every human rights organization that has considered this practice has condemned it, some even to the point of recognizing it as akin to torture.
We know that most physicians want to do the right thing for their patients, just as parents want to do the right thing for their children. The right thing, unequivocally, is to wait until an intersex person can participate in these life-altering decisions. The right thing is to afford them the same dignity and autonomy that is due to everyone — and refrain from inflicting irreversible harm solely because of a discomfort with difference.
The few doctors who refuse to bring their practices in line with human rights standards tell us there is a silent majority of patients who are happy they had their childhood surgeries, but they have been unable to produce those happy patients for us to talk to. We do hear from people who are extremely grateful they were spared surgery, as well as parents of intersex children who are growing up just fine without medical intervention.
Some doctors have dismissed us as “angry activists,” but our position has support from the United Nations, the World Health Organization, Amnesty International, the State Department, every majorLGBTQ rights organization in the United States, three former U.S. surgeons general and almost every intersex organization in the world. Now, interACT and Human Rights Watch have published a new report echoing those calls for a ban.
These institutions are not just “angry activists.” They are principled human rights defenders drawing on data, laws and the medical ethics concept of “do no harm.”
Most important, intersex children and adults are telling us that they want the freedom to make decisions about their own lives and bodies.
Working with intersex youth every day, I can tell you these kids are perfect as they are — and they are telling us that their bodies aren't shameful and don’t need to be “fixed.”
Kimberly Mascott Zieselman is executive director of interACT, an organization that advocates for intersex youth.
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