Intersex activists are gearing up for a potentially historic year, as momentum builds to end the practice of performing nonconsensual surgeries on intersex infants.
As many as 1.7 percent of babies have chromosomal, genital, or other differences that put them outside of the medical community’s definition of “male” or “female.” (These statistics vary, with one commonly cited estimate putting the number at one in 2,000 births.) There’s no comprehensive tally of how many of these cases result in surgery on intersex babies. While some of these surgeries may be medically necessary, many are performed to bring an infant’s body into closer alignment with social expectations. These surgeries, often performed when patients are too young to consent, can sterilize intersex people, deprive them of sexual sensation, or irreversibly reinforce a gender assignment that doesn’t match their identity.
Today, on Intersex Awareness Day, activists are celebrating unprecedented momentum in their movement to ban these medically unnecessary early surgeries.
“[We’re] definitely riding a wave,” Hans Lindahl, director of communications and outreach for the advocacy group interACT, told Truthout. “Maybe a wave is what leads to a tipping point? So, we’re riding a wave to a tipping point.”
Last year, interACT worked with California lawmakers to pass the first-ever legislation in the United States to acknowledge the existence of intersex people. The nonbinding resolution noted that these nonconsensual intersex surgeries have been condemned by Human Rights Watch, the World Health Organization and the United Nations Special Rapporteur on Torture.
“It’s the first time that anywhere in the States we have something on the books that, one, acknowledges intersex people exist as a group of people and, two, [acknowledges] that there are medical human rights violations against us and that those things need to be known,” Lindahl said.
The resolution’s author, California state Sen. Scott Wiener, introduced a bill this year that would have been the first to ban medically unnecessary surgeries before a child can give consent. Wiener ultimately pulled the bill amid opposition from pediatric urologists who perform the surgeries and from patients and parents of children with congenital adrenal hyperplasia (CAH), a group of conditions that can produce genital differences. During hearings in California, the urologists made inaccurate claims to justify the surgeries, including saying that patients with CAH have a female “brain sex,” even though studies show some transition to living as men.
California’s landmark action, along with growing activism on the issue, has spurred other states to take action. This year, lawmakers introduced bills to ban nonconsensual intersex surgeries on children in Iowa, Nevada, Texas and Connecticut. None have passed. Iowa Governor Kim Reynolds did sign into law a measure that banned public funds for procedures to address what it described as “hermaphroditism” (an offensive and outdated term for being intersex), but that measure was part of an anti-LGBTQ bill that banned Medicaid funding of gender-affirming surgery for transgender Iowans. In a more positive move in Colorado, advocates successfully lobbied for inclusion of intersex issues in a comprehensive sex education law. In Illinois, Cook County commissioners passed a resolution condemning the Trump administration’s “restrictive view of sex and gender,” which they said validated the “false binary notions” used to justify “harmful, non-consensual surgeries” on intersex children.
New York City, home to the practice of Dix Poppas, one of the most prominent urologists who performs these surgeries, has emerged at the forefront of the issue. In June, the city’s health commissioner and the head of the commission on human rights co-authored an op-ed calling for doctors to “only perform surgery when the health of a child is at imminent risk or it is consensual.” Health Commissioner Oxiris Barbot cited her experience caring for a patient who had undergone genital surgery without consent as a child and later refused to let Barbot perform an examination, saying, “I am tired of having residents parade through my room and my body to see what it looks like to be the aftermath of intersex surgery done during the ’70s.” On October 17, New York City Council members introduced legislation to require the health department to implement a “public information and outreach campaign regarding medically unnecessary treatments or interventions in infants born with intersex traits.”
In the upcoming year, interACT says at least two states will introduce legislation addressing nonconsensual surgeries, including New York and California. The group has also heard interest from lawmakers in New Jersey and expects to see further study of the legislation in Connecticut. States have started approaching interACT about these bills, rather than the other way around, according to legal director Alesdair Ittelson.
“That’s how we know we’re really seeing a momentum,” Lindahl said. “Folks are finally more able to speak out about this practice and ask that medicine just listen.”
Intersex activists have been protesting against unnecessary surgeries for decades; Intersex Awareness Day marks the yearly anniversary of the October 26, 1996, protest outside an American Academy of Pediatrics conference in Boston. Lindahl attributed the shift in recent years to the growing visibility of intersex people who have come forward in increasing numbers. Intersex model Hanne Gaby Odiele and activist Pidgeon Pagonis, who has more than 40,000 YouTube subscribers, have drawn public attention to the issue, empowering others like Lindahl to come out. When interACT’s youth program started several years ago, Lindahl said, it was an anonymous blog with about five people who didn’t want to show their faces. On this year’s Intersex Awareness Day, the group has dozens of members, and many are eager to share their stories through interACT’s #MyIntersexBody campaign.
“#MyIntersexBody came with XY chromosomes, a vulva, and no ovaries or testes — meaning I don’t make my own hormones,” a social media graphic bearing Lindahl’s story reads. “Hormones can be replaced, but there’s no substitute for love, community, and self-acceptance.”