Pidgeon Pagonis is an intersex activist and filmmaker.
On October 5th, the Washington Post published this amazing long-form article on the intersex movement--featuring a number of my dear friends and fellow activists. It’s not often that a major publication dedicates 6,000 words of thoughtful, nuanced journalism to our community.
The piece featured intersex people talking about our painstaking work to end a decades-old and thoroughly debunked medical paradigm that says our bodies are so wrong that doctors should be able to surgically alter us however they want--without our consent and when we are too young to participate in the decision. This is what happened to me at Lurie Children’s (formerly Children’s Memorial) in Chicago; I was operated on three times as a kid, for no medical reason, and without my knowledge or consent. I’ve been living with the fall-out ever since. It was mutilation. And I’m not alone in my conviction--three former US surgeons general came out against the practice, as have the Board of Trustees of the American Medical Association, the United Nations, the World Health Organization...and the list goes on…
The Washington Post article reflected our ongoing struggle to end this medically unnecessary genital surgery on intersex kids. No one should operate on us without our consent, let alone perform procedures that have been universally condemned by our community and international human rights bodies. But not all doctors agree: the reporter interviewed a handful who defend non-consensual “cosmetic” surgeries on intersex infants. And there are even more out there--like this guy at Cornell who not only performs clitorectomies on intersex children, but tests out his technique by putting vibrators on what’s left of their clitorises afterward.
After I tweeted affirmations to my beautiful intersex friends featured in the article, I saw the University of Michigan children’s hospital was tweeting about it too. They tweeted how proud they were of their faculty investigator, Dr. David Sandberg, for discussing “the difficulty of treating intersex patients.”
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.
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? Even Human Rights Watch called Sandberg out, saying “as if the dearth of reliable data on precisely how many kids have suffered harm because of these surgeries was a reason to keep doing them.”
It’s 2017 and I can’t believe we are still fighting this battle. Pediatricians should be looking out for kids, not dismissing them like data points. Imagine if my doctors had actually thought of me like the healthy little kid that I was rather than a nail that needed to be hammered back into the gender binary?
So, I tweeted at University of Michigan and called Sandberg out.
It turns out he’s not on Twitter, but his friends are, and he emailed me asking for a dialogue.
Here’s my open letter to Dr. David Sandberg. Since he received taxpayer money for his research and works at a state university, we all deserve to know what brought him to tell the Washington Post he should be allowed to keep promoting a First Do Harm model of care for intersex kids.