Pidgeon Pagonis and Sean Saifa Wall are both intersex. Their bodies or reproductive anatomy don’t fit typical definitions of male or female. When Pidgeon was just a year old, their parents agreed to the first of several surgeries that altered Pidgeon’s body.

Surgeries on intersex children have been commonplace since the 1960s. But Pidgeon and Saifa are adamant that intersex people, not just their parents and doctors, should have a say in what happens to their bodies.

In 2013 at StoryCorps Chicago, Pidgeon described one of their earliest memories, a surgery they had when they were four years old: “I woke up in a hospital with bloody tissue between my legs, and then I remember just looking up and seeing fluorescent lights going past really fast.”

Year after year, Pidgeon and Saifa shared their childhood traumas to anyone who would listen. Since 2017, they have focused their organizing on one place in particular: Lurie Children’s Hospital of Chicago. They organized protests and online campaigns, educating people and calling for an end to surgeries on kids who are intersex.

Their years of advocacy have led to real change.

In July, Ann & Robert H. Lurie Children’s Hospital of Chicago announced they were suspending surgeries on intersex children who are not able to give consent, the first hospital in the United States to do so. The hospital also apologized to intersex people who were harmed by past standards of care. Since Lurie Children’s Hospital suspended the surgeries, another children’s hospital in Boston has followed suit.

When Pidgeon Pagonis and Sean Saifa Wall spoke to each other for StoryCorps, they talked about the victory at Lurie, and what years of publicly sharing their traumas has meant.

Pidgeon Pagonis and Sean Saifa Wall are co-founders of the Intersex Justice Project. This interview was facilitated by StoryCorps Chicago’s Mary Bess Ser. Special thanks to Kate Sosin, whose reporting on Pidgeon and Saifa helped inform this story.

Bill Healy produces StoryCorps Chicago for WBEZ and teaches journalism at Northwestern University. Follow him @chicagoan.