Intersex Advocate Writes Open Letter to Doctor About Medically Unnecessary Surgeries

 Being born intersex is way more common than people think. And while it’s not abnormal or weird to be born with a variety of sex characteristics that are outside our typical understanding of male and female bodies, doctors still perform surgeries on young children that they can’t consent to in order to make their sex characteristics fall within what we think of as “normal.” This is called intersex genital mutilation, and it’s a practiced denounced at a meeting of a UN group. Still, some doctors still perform these surgeries on young children.

After a doctor from the University of Michigan told The Washington Post that there isn’t evidence to suggest that surgeons should or shouldn’t wait to perform surgery on intersex children until they can decide for themselves, intersex advocate Pidgeon Pagonis published an open letter to the doctor, asking him a few questions, after he suggested they have an open dialogue.

In the Post article detailing the intersex movement, David Sandberg, Ph.D, a pediatric psychologist at the University of Michigan, said he thinks it would be “hubris” to suggest families don’t know what’s best for their child.

“We don’t have the evidence to say to the family, ‘You should wait until your son or daughter can decide on their own.’ We don’t know,” he said. The hospital tweeted about his statement, saying he spoke on the “difficulty” of treating intersex patients. But Pidgeon said this is disrespectful.

“Our bodies might be a little more complicated than most, but we aren’t any more ‘difficult to treat’ — start with dignity, respect, informed consent, and take it from there,” Pidgeon wrote. “But Sandberg and his friends are completely illogical. For over 20 years they’ve hidden behind the ‘need for more data’ excuse, and yet they continue to promote and do surgeries while failing to produce said data. Since when does medicine need data to STOP doing super invasive and medically unnecessary surgery on people?”

In a video for Teen Vogue, Pidgeon said performing medically unnecessary surgeries young people can’t consent to is similar to female genital mutilation — a widely banned practice that has been declared a human rights violation.

“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 every day. It’s an injustice and it’s an attack against our human rights.”

In the open letter to Sandberg, Pidgeon points out that moving forward with surgeries young intersex people can’t consent to because their parents ask for them is similar to performing a rhinoplasty on a child because their parents didn’t like the way their nose looked.

“You state that you believe it would be ‘hubris’ to advise a parent to delay surgery on their intersex child—to imply that a doctor knows better than a parent what the child’s best interests are,” Pidgeon wrote. “How would you respond to a parent who came in asking for sterilization or female genital mutilation to be performed on their young child? For a cosmetic rhinoplasty? For a healthy limb to be removed?”

Sandberg told Teen Vogue that he thinks there’s “significant room to improve” treating intersex people, but said that there isn’t evidence to stick with one course of care over another.

“I am a pediatric psychologist, clinician and researcher. My clinical service and research focuses on infants, children and young adults born with differences of sex development, and their families. Our team focuses on providing families with compassionate, comprehensive care and ensuring they have strong support and access to the best resources available,” he said. “As I read and try to make sense of traditional research on DSD, as well as the stories of individuals with DSD (or as some prefer to identify, intersex), I’ve found that the evidence does not settle whether there is a single, best course of care.”

But Pidgeon pointed out that just like there isn’t data to support delaying surgeries, there isn’t data to support performing them, either.

“What do you believe is different about treating intersex children that justifies procedures for which there are no affirmative data showing the results are beneficial?” Pidgeon wrote.

Some doctors say that many of the surgeries performed on young people aren’t medically necessary. I.W. Gregorio, M.D., a surgeon and author, told Teen Vogue previously that some of these surgeries may often be an attempt to “fix” intersex people — stemming from an assumption that anything outside what society considers normal sex characteristics is broken. And while many of these surgeries are medically unnecessary, they can also do harm.

“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.”

The variation of how doctors treat intersex babies is “worrisome,” Sandberg told Teen Vogue,but he added that one thing is certain.

“What everyone seems to agree on is that psychosocial care is an integral part of the model of care. Sadly, as in many other areas of healthcare, the psychosocial piece is inadequately represented,” Sandberg wrote. “One of the champions of the intersex advocacy movement, Bo Laurent, identified early on in the movement that ‘shame and secrecy’ can drive decision-making in ways that ultimately result in harm to the patient and the family. She also strongly advocated for the essential role of mental health in the team model of care. These emotional reactions are understandable, but should not be the driving force for any medical decision for a young child.”

Originally posted on Teen Vogue:

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