October 26th is internationally recognized as "Intersex Awareness Day." Intersex is a term used to describe a variety of conditions in which a person has naturally occurring reproductive organs that defy the typical designations of male or female. It's the "I" in the LGBTQIA+ umbrella - and it's not something that is often talked about, even though some studies say it occurs in up to 1.7% of the population.
Pidgeon Pagonis, who goes by gender-neutral pronouns eg: "they," went through numerous surgeries, beginning as an infant. Their parents thought it was for the best that's what doctors told them. Pagonis is a Chicago native, activist and filmmaker with a critically acclaimed documentary called The Son I Never Had: Growing Up Intersex. They contend that intersex children should be left with their bodies intact unless there's a medical necessity otherwise.
Pagonis says they didn't find out the truth about being intersex until they were 18 years old and decided to look into their medical records after hearing about a specific intersex condition in college. "Prior to finding out the truth, I grew up with a lot of lies and secrecy." Pagonis had been told that their surgeries were for cancer. Really, they were done to make Pagonis look "more normal." Such surgeries can come with lifelong consequences, like heavy scarring and loss of responsiveness. You can check out Pagonis' Youtube channel with informative videos, here.
Pagonis says their parents have come to understand what intersex is, and wish they had acted differently. "My mom says she just wishes she had information back then." As part of Intersex Awareness Day, Pagonis helped stage a demonstration outside Ann & Robert H. Lurie Children's Hospital of Chicago. Pagonis says the goal is simple. "I want Lurie to commit to ending the practice of medically unnecessary surgeries on (intersex) infants and children." They say a good place to start would be ending clitorectomies, something Pagonis had done to them.
There's still a long way to go if Intersex Awareness Day and similar efforts are to be successful in educating the overall public about the condition. There's still debate on when or why it is necessary to perform reconstructive surgery on intersex people. Like Pagonis, the Intersex Association of North America says that, "It is appropriate to have competent surgeons perform operations necessary to resolve a life-threatening metabolic crisis. For example, if a child is born without a urinary opening, the child needs surgery ... What we object to are elective surgeries done on people (usually children) without their informed consent."
For its part, Lurie Children's Hospital responded to the concerns of Pagonis and other demonstrators with the following statement:
On behalf of Ann & Robert H. Lurie Children's Hospital of Chicago and its Gender and Sex Development program, we support and acknowledge Intersex Awareness Day. Lurie Children’s is dedicated to the development of optimal multidisciplinary care for individuals with intersex (sic) and their families. We are committed to open communication with the Intersex community and fully respect the diversity of opinions that exist in affected individuals, including those at the Intersex protest at Lurie Children's. We believe that continued efforts to foster healthy and open communication between intersex support groups and the medical community is vital to future improvements in patient care. Consistent with this philosophy, Lurie Children’s will be hosting the annual Androgen Insensitivity Syndrome (AIS) and Differences of Sex Development (DSD)/ Intersex advocacy meeting in the summer of 2018.
