Activists are gathering at New York Presbyterian Hospital next Saturday to protest its practice of performing surgeries to correct the genitalia of intersex children. Survivors say the practice is “medically unnecessary” and “invasive,” while many have likened it to “torture.”
When Sean Saifa Wall was just 13 years old, doctors at New York Presbyterian urged his parents to remove “undescended testes” they claimed would develop into cancer if left untreated.
His parents agreed to the procedure, lacking the information to make an informed decision.
Wall didn’t learn about the existence of intersex people until later in life. Born with genitalia that is neither exclusively male nor female, these individuals make up between 0.5 and 1.7 percent of the population — around the same number of people in the U.S. who have red hair.
But because this group is often operated on at early ages without their consent, they are likely to be unaware of their intersex status.
Wall was raised as a girl but transitioned to male later in life. Now 39 years old, he’s a co-founder of the Intersex Justice Project — where he lobbies against a medical procedure that he describes as “castration.”
In a statement, Wall claimed intersex surgeries “need to end.”
“As an institution, [New York Presbyterian Hospital] has and continues to harbor practitioners that continue to advocate for intersex genital mutilation,” he told INTO.
Dr. Dix Poppas, chief of pediatric urology at New York Presbyterian Hospital, defended the procedure in an interview with Rewire.News. He asserted that intersex patients are “100 percent females in every way” and said delaying surgery would mean forcing them to grow up as girls… with genitalia that doesn’t align with their gender.”
But intersex activists say these surgeries deny them the ability to determine their gender for themselves.
Hanne Gaby, who was born with androgen insensitivity syndrome, wasn’t told that she was born intersex growing up. The 30-year-old was subjected to a series of surgeries designed to “correct” her gender but was never told why, for instance, she would never be able to have children.
Gaby said that by the time she was old enough to realize what was happening, it was “already too late.”
“Intersex people… don’t need to be fixed,” the Belgian supermodel said in a statement provided to INTO, in which she noted that all her surgeries resulted in was “shame.” “We need to fix the binary. What’s not broken doesn’t need to be fixed.”
Wall and Gaby will be joined at the Oct. 27 protest by intersex activist Pidgeon Pagonis, Milk of RuPaul’s Drag Race fame, and members of the advocacy group Voices4. In a statement to INTO, Voices4 co-founder Adam Eli said he feels a “responsibility to fight for intersex rights” as a member of the LGBTQ community.
“As a community, we have an obligation to stand up for our most marginalized members and that includes the often silenced intersex community,” Eli said.
Medical interventions on intersex youth have been widely condemned by a litany of international human rights organizations and medical groups. These entities include the ACLU, Amnesty International, Human Rights Watch, Lambda Legal, Physicians for Human Rights, World Health Organization, and the United Nations.
In 2017, three former U.S. Surgeons General — Richard Carmona, M. Joycelyn Elders, and David Satcher — came out against the operations.
“[A] consensus is emerging that concludes that children born with atypical genitalia should not have genitoplasty performed on them absent a need to ensure physical functioning,” Carmona, Elders, and Satcher claimed in a position paper.
“Government agencies in Germany, Switzerland, Australia, Chile, Argentina, and Malta… have examined this issue and found that these irreversible medical procedures,” they continued, “which are performed before individuals can articulate whether they wish to undergo such surgery, are not necessary to ensure healthy physical functioning.”
Intersex surgeries are “not justified when performed on infants,” the authors concluded.
But despite increasing criticism of the procedure, many medical institutions continue to operate on intersex infants. In a protest led by Pagonis, activists picketed Chicago’s Lurie Medical Center last year for continuing to offer the procedure.
On its website, the pediatric provider lists services to “help correct girls’ anatomy.”
Pagonis, who uses gender-neutral pronouns, was one of those patients. Throughout their childhood, they were told that their ovaries had to be removed when they were born due to concerns about cancer.
The nonbinary activist grew up having frequent nightmares about being subjected to genital surgery, not realizing the dreams were real.
Although Lurie publicly expressed support for the intersex protesters and claimed the institution was open to dialogue, internal emails shared by staff told a very different story. Staffers referred to the protests, which coincided with the 2017 Intersex Awareness Day, as an “extreme position.”
Intersex advocates, though, maintain that what they’re asking for isn’t extreme. They just want to be given information by medical providers to make the appropriate decision about their own bodies.
Hans Lindahl, director of communications and outreach for InterACT, claimed that “change can’t come fast enough for intersex people.”
“In 1997, the first North American intersex activists to publicly protest normalizing genital surgeries as violations of bodily autonomy were written off as a vocal minority by doctors in the New York Times,” Lindahl said in a statement to INTO.
“Today, despite nearly every international human rights organization rallying on our side, we’re still dismissed,” she continued. “They’ll give us ‘treatment teams’ and ‘improved technology,’ but they won’t give us delay or informed consent, what our community has been demanding for decades.”
Intersex people are “still not centered in our own healthcare,” Lindahl concluded.