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Intersex activist Sean Saifa Wall protests outside Lurie Children’s Hospital in Chicago for Intersex Awareness Day on October 26, 2017.
© 2018 Love & Struggle Photos, courtesy of Pidgeon Pagonis
A children’s hospital in Chicago is the first hospital in the United States to publicly apologize for the harm it caused intersex people. The Ann & Robert H. Lurie Children’s Hospital also announced it would stop medically unnecessary “normalizing” surgeries on children born with intersex traits, building on global momentum to end these abusive surgeries.
The apology and policy change came in the wake of years of advocacy led by the Intersex Justice Project, including street protests and a petition that garnered nearly 40,000 signatures.
Significant recent shifts in medical policy also support Lurie’s shift. The American Academy of Family Physicians, the North American Society for Pediatric and Adolescent Gynecology, the Massachusetts Medical Society, and GLMA: Health Professionals Advancing LGBTQ Equality now all have policies supporting a delay of medically unnecessary surgeries until intersex people can consent to the procedures themselves.
“Intersex” refers to the estimated 1.7 percent of the population born with traits that do not fit conventional expectations of female or male bodies. Their sex characteristics, such as chromosomes, gonads, or genitals, may differ from social expectations.
These variations are almost invariably medically benign, yet in the 1960s, surgeons in the US popularized “normalizing” cosmetic operations, such as procedures to reduce the size of the clitoris. These procedures are not designed to treat a medical problem and there is no evidence that such operations help children “fit in” or “function in society,” which some surgeons say is their aim. The operations do, however, carry high risks of scarring, loss of sexual sensation, incontinence, sterilization, and psychological trauma.
Since 2017, intersex advocates Pidgeon Pagonis and Sean Saifa Wall led protests in front of Lurie Hospital demanding an apology, reparations, and an end to the operations. Over a decade ago, doctors at the hospital performed medically unnecessary surgeries to alter Pagonis’ clitoris, vagina, and gonads without their consent.
The protests gained support from a spectrum of Chicago’s social justice organizations, and staff at Lurie Hospital have become increasingly vocal in their support for intersex rights – echoing a growing number of doctors and surgeons who are deeply skeptical of the current practices. The hospital cited engagement with staff, patient advocates, and community partners as catalysts for change in the standard of care.
This long overdue change in Chicago should inspire other hospitals to follow suit.
