CHICAGO — Activist Pidgeon Pagonis said their early treatment at Lurie Children’s Hospital was dehumanizing.
Pagonis was born intersex, with traits that don’t fit binary ideas of male or female. At Lurie, until recently, that meant being subjected to cosmetic genital surgeries.
“When I was born, I wasn’t admitted to a caring medical facility. I was put on a medical factory’s conveyer belt — one labeled ‘girl,'” said Pagonis, who would later learn they had androgen insensitivity syndrome. “And my beautifully healthy, unique, nonbinary and intersex body was remanufactured into what Lurie Children’s Hospital deemed more appropriate and normal.”
This week, Lurie officials pledged to stop performing such surgeries, making it the first medical institution in the United States to commit to ending genital surgeries on intersex children. Lurie issued a public apology on Tuesday to any intersex people harmed by their treatments.
The announcement was the culmination of years of activism from intersex and trans leaders. Now, they are urging all other medical facilities to follow suit.
“This is a watershed moment,” Sean Saifa Wall, Intersex Justice Project cofounder, said in a press conference Thursday. “We implore every children’s hospital in the U.S. to stop these medically unnecessary procedures and respect the bodily autonomy of all intersex children.”
Wall, an Atlanta-based intersex activist, is one of seven family members born with androgen insensitivity syndrome, a genetic condition in which people are born with sex characteristics that don’t fit binary definitions of male or female.
Like Pagonis, Wall described being harmed by these surgical procedures at 13 years old by doctors at New York Presbyterian Hospital. Wall said Lurie’s policy change gives him hope more medical institutions will follow suit.
“This is an appeal to all medical students, nurses, OBGYNs, pediatricians, endocrinologists and doctors working with children for you to really commit to lasting change at your facilities,” Wall said.
Dr. Ellie Kim, a transgender woman, was the first of several Lurie employees to publicly come out against the hospital’s procedures, creating internal pressure on the hospital in the weeks leading up to its policy change.
Kim said intersex children are too young to give consent to these surgeries, which are medically unnecessary and considered a human rights violation by experts.
“What we’re talking about is cosmetic procedures done on infants whose genders are being determined by surgeons,” said Kim, a physician and medical researcher for Lurie’s Trans Youth Care Study. “There isn’t a shred of medical evidence to support that these procedures can’t be delayed, and there’s plenty of modern medical evidence to suggest they cause irreparable trauma and harm.”
Hospital officials said the institution hasn’t performed these surgeries on any infant or child in the last five years.
In an emailed statement, Dr. Robert Garofalo, head of Lurie’s Adolescent and Young Adult Medicine division, thanked hospital staffers and intersex community members for their input on the surgeries.
“We carefully reexamined our philosophy toward patient care and our decision to be more open and transparent about our work,” Garofalo said. “Lurie Children’s is proud of our recent policy statement as it reflects our commitment as an institution to the highest quality of patient education and care wedded in best ethical and medical practices.”
Stephanie Skora of the Brave Space Alliance, Chicago’s first and largest Black- and trans-led service organization, and Indya Moore, a transgender activist and star of “Pose,” said the struggles for intersex justice and transgender liberation are intertwined.
“When someone’s existence defies what we’re taught about gender and binaries, penis and vagina, or man and woman, there’s an accompanying response to change or convert it to normalcy,” Moore said. “And this normalcy is problematic because … none of it is true.”
Skora pointed out the hypocrisy in efforts to block trans adults’ access to gender-affirming surgeries while forcing the same procedures on intersex infants.
“None of us can have bodily autonomy unless all of us have bodily autonomy,” Skora said. “We will keep fighting until it’s recognized policy, law and basic morality by every single person in these institutions that consent is the baseline for every medical procedure.”
Jake Wittich is a Report for America corps member covering Lakeview, Lincoln Park and LGBTQ communities across the city for Block Club Chicago.
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