Massachusetts Shows Us What We Must Do Next for Intersex Rights

The Massachusetts Medical Society passed a milestone resolution December 7, joining the rapidly expanding list of medical entities to adopt policies not to perform surgery on intersex people until patients themselves consent.

The action by the physician-delegates means that the state medical association now endorses care that "defers medical or surgical intervention until the child is able to participate in decision making." This is the beginning of the end of the practice of "fixing" perfectly healthy intersex children that began in the 1960s.

This endorsement couldn't have come soon enough. The Massachusetts Medical Society's leadership in protecting a largely hidden population of vulnerable patients should be applauded.

I myself underwent such surgery at a Massachusetts hospital when I was a teenager. My healthy internal testes were removed without my knowledge by physicians at Mass General, in a procedure that was not explained fully to me or my parents. Learning the truth decades later changed my life and opened my eyes. Intersex people like myself have spoken out for 30 years against the permanent harm this kind of surgery causes, including trauma, sterilization, reproductive issues, and sexual dysfunction. Now we are finally seeing policy changes.

"Intersex" may be an unfamiliar term to some, but intersex people are actually quite common. We make up nearly 2 percent of the population. Just like other body parts, genitalia vary from person to person and aren't a medical problem. As long as a child can urinate, there should be no rush to make such a personal and irreversible decision on their behalf.

Procedures to reduce or reshape children's genitalia -- surgeries that cut into the clitoris, vagina, or gonads -- have been condemned as a human rights violation by organizations like the United Nations and Physicians for Human Rights. And yet they continue in hospitals across the country. Elective procedures including "reconstructive surgery to reduce clitoral size" are still recommended to parents of healthy intersex children at Boston-area hospitals.

Surgery to modify or remove healthy existing tissue is by definition not "reconstructive." Sadly, I am not surprised that the website for a top pediatric hospital in Boston describes the anatomy of young intersex patients as needing to "be removed or created in order for them to function properly."

As the executive director of interACT: Advocates for Intersex Youth, the world's largest policy organization representing intersex people, I've seen this happening for decades. I've seen countless families tested by the shame of being told their child urgently needed genital surgery to look or be "normal." I've met hundreds of grown intersex people who feel great loss and wish they had been given the right to make these decisions about their own bodies.

The past few years have been a watershed for intersex rights recognition as institutions quickly realize a need to shift to the right side of history. California passed the first state-level resolution affirming the need for medicine to respect intersex bodily autonomy in 2018. California and New York each have regulatory bills coming up in 2020. Two candidates for the Democratic presidential nomination -- Pete Buttigieg and our senator Elizabeth Warren -- advocate individual consent for intersex surgery in their campaign platforms.

But even in Massachusetts, we have a long way to go. Unfortunately, hospitals and some physicians remain entrenched in the old standards of care and practice, including relying on falsehoods for rushing genital surgeries.

"It's best to perform corrective surgery when the child is very young ... about 6 months old, which reduces the risks of anesthesia," the Boston hospital website says. But that simply isn't true. Anesthesia is a serious risk for children under 3 -- even the Food and Drug Administration says so -- and that risk increases with repeat surgeries. Complications necessitating follow-up surgeries can occur as much as 40 percent of the time, making it even more clear that these surgeries should wait.

At interACT, we have partnered with respectful and affirming physicians and surgeons, and published with Lambda Legal a set of intersex-affirming hospital policies as a road map for reform. Massachusetts can lead the way. It's time for our hospitals to follow suit, and start doing the right thing by intersex kids.

Kimberly Zieselman is a Sudbury, Mass.-based attorney and executive director of interACT: Advocates for Intersex Youth.