Last week the United Nations convened its first meeting to address the issue of human rights violations against people with ambiguous genitalia, also known as intersex.
The U.N. Office of the High Commissioner for Human Rights meeting, held in Geneva, builds off a 2013 report by the U.N.’s Special Rapporteur on Torture calling on the world’s nations to outlaw “genital normalizing” surgeries on intersex individuals.
This week’s meeting also discussed human rights violations such as infanticide and widespread discrimination that occurs against intersex people around the world. But the issue of how to end the practice of intersex surgeries was front and center.
“Too many people assume, without really thinking about it, that everyone can be fitted into two distinct and mutually exclusive categories: male or female,” said Zeid Ra’ad Al Hussein, the U.N.’s high commissioner for human rights, in his opening remarks.
“Such violations are rarely discussed and even more rarely investigated or prosecuted,” Hussein said. “The result is impunity for the perpetrators, lack of remedy for victims, and a perpetuating cycle of ignorance and abuse.”
The meeting brought together nearly three dozen intersex activists, heads of NGOs, members of U.N. offices on health and children’s rights, and many others.
“It’s clear that there’s a pretty big investment in this issue now — it’s really historic,” Kimberly Zieselman, the executive director of the intersex advocacy group Advocates for Informed Choice, who was part of the meeting, told BuzzFeed News. “That’s a big milestone for the intersex movement.”
Largely absent from the meeting, however, were doctors and surgeons who work with intersex patients, many of whom vehemently disagree that intersex surgeries are harmful.
An estimated 1 in every 2,000 babies are born with traits that doctors would classify as intersex, though some experts say the real number is even higher.
When these babies are born, in the U.S. and elsewhere, it’s common medical practice to operate on them to make their genitalia appear more typically male or female.
The surgeries have been the subject of fierce debate for several decades. Many activists argue that they are medically unnecessary, based on social fears about ambiguous genitalia, and can cause physical or psychological harm — all without the patient’s consent. For this reason, many activists refer to the surgeries as “intersex genital mutilation,” drawing a comparison to the cultural practice of female genital mutilation that has been outlawed in many countries.
But some bioethicists argue that characterizing intersex surgeries as torture could do harm to a movement that will also need the support of the medical community.
“These are social interventions on your genitals — if we’re going to use that language about Africa, we’re going to have to use it here,” Alice Dreger, a historian of medicine and intersex patient advocate, told BuzzFeed News. “The parallel that they’re done for social reasons is very clear. But it’s going to be very difficult to convince most doctors that the surgeries constitute a human rights violation.”
Many doctors agree that more long-term outcome studies are necessary to understand whether intersex children who are raised without surgical intervention grow up to be healthy and happy. But for now, those studies are few and far between.
By equating surgery with torture, some doctors argue, activists are further tying the hands of a medical community that is trying to act in their patients’ best interest.
“This completely antagonizes the medical community. This is not progress, in my opinion,” Eric Vilain, professor of human genetics and pediatrics at UCLA, told BuzzFeed News. “It’s a tactic that’s likely to work, and it’s a tactic that will prevent us from actually understanding what’s going on.”
Regardless, advocates say, after decades of intersex people speaking out, the meeting was a sign that their voices are finally gaining international attention.
“Physicians constantly say to me that lawsuits and laws are not the way to change medical practice,” Dreger said. “And I say, I agree with you, but if you will not change your practices — then that’s what it’ll take.”
The U.N. human rights office plans to release a public document about next steps in the next two to six months.