Why Intersex Genital Mutilation Needs to Stop

“You have to decide for yourself.”

by Vera Papisova and Evaan Kheraj Edited by Chloe Gbai

JUN 29, 2017

People who are born intersex aren’t different or abnormal, yet doctors still perform often unnecessary surgeries on them without consent.

According to intersex advocates Hanne Gaby Odiele, Emily Quinn and Pidgeon Pagonis, intersex people across the world are being subjected to genital surgery that they don’t need and don’t consent to. These surgeries are not only traumatic, they say, they perpetuate the unnecessary shame and stigma associated with being intersex.

Organization Intersex International says Intersex Genital Mutilation is the practice of performing surgery on young intersex people for cultural or religious reasons, often using medical necessity as the reason given for surgery. Research, however, shows that young intersex people who do not have surgery are healthy until they reach an age at which they can decide to have surgery themselves. If an intersex person does decide to have surgery, that’s totally OK. It’s the issue of performing the surgery when someone is too young to consent that poses an issue.

“So what you hear happening as, like, Female Genital Mutilation in other places happens to intersex children here and it’s called intersex genital mutilation, and they literally just removed my clitoris. And when I was 11, they did a vaginoplasty,” Pidgeon said “So they, without my permission or consent, stretched out my vagina in ways to make it more accommodating to my future husband’s penis. And these are a few of the things that happen to intersex children all over the world. It’s an injustice and it’s an attack against our human rights.”

According to Dr. I.W. Gregorio, surgeon and author, these surgeries often aren’t necessary.

“I think that there is a bias among medical professionals to ‘fix’ intersex, based on a lot of assumptions that doctors make about the ‘right’ ways to have sex and how a ‘real’ girl or boy should look. A lot of the time, surgeons are driven to operate by parents who are overwhelmed and fearful, and that it’s impossible for any parent to know what their child would like in that situation,” Dr. Gregorio said. “The fact is that the majority of intersex surgeries performed on infants are cosmetic, and carry a significant risk of doing harm.”

Informed consent, Hanne and Emily added, is what makes all the difference.

“If you want to get a surgery, it’s fine,” Hanne said. “But you need to be able to do that for yourself, make your own decision when you’re old enough and completely well informed.”

“We talk a lot about informed consent and being able to make a decision for yourself,” Emily said. “But that means knowing what it is that’s happening, knowing why it’s happening, knowing that’s what you want and what you’re going to want in the future, and your doctor being honest with you and not trying to manipulate you.”

Pidgeon said doctors often tell young intersex children’ parents the surgeries can help make their child “whole,” an effort to maintain the binary.

“There’s this idea that we are not fulfilled or not completely developed female children,” Pidgeon said. “And then they tell our parents, ‘we can help you fix the child and make them a complete female. We have this surgery over here, these pills over here.'”

For example, Emily says, cutting off a clitoris is not medically necessary, yet it happens to intersex children.

“It’s also like kids that have a big nose or something,they don’t ask the parents, ‘oh, should we just fix it real quick?'” Hanne said.

Dr. Gregorio backed them up. While doctors may have good intent, she said, it’s important to wait until young people can decide for themselves.

“From personal experience, I know how tempting it is to downplay complications of a surgery that you truly think will save their life,” Dr. Gregorio said. “In the case of intersex, however, none of these surgeries (with the very rare exception) are lifesaving. They are, by definition, elective, and could be postponed to a time when patients can exercise their autonomy over their body.”

Instead, we need to stop telling intersex people that their bodies are wrong, or that they need fixing. We should be giving people a choice, and offering that choice when they are able to make it for themselves.

“Those surgeries need to stop because they bring so much more complications and traumas,” Hanne said. “And there’s nothing wrong with having a surgery if you decide it for yourself — but you have to decide for yourself.”