CHICAGO — Pidgeon Pagonis’ childhood memories include surgeries, hormone therapy, and repeated genital inspections. When Pagonis turned 18 and got a copy of their medical records, they finally understood why.
The first page had a handwritten note: “46 XY male pseudohermaphrodite.” The procedures that followed were also listed: a clitoral reduction, vaginoplasty, and surgery to remove undescended testes.
For Pagonis, now 33, the results of some of these procedures have been both physically and psychologically damaging.
“The surgeries left me with tons of scar tissue and nerve damage,” Pagonis told VICE News.
Pagonis was born with an intersex condition called Androgen Insensitivity Syndrome. It’s one of more than 20 conditions that fall under the medical umbrella of “intersex.” There’s a wide range of diagnoses, but each includes an individual having combinations of chromosomes, gonads, and genitalia that place them between typical definitions of male and female.
Surgeries are sometimes necessary to allow proper functioning or remove malignancies, but many of the procedures that Pagonis underwent as a child were cosmetic.
Pagonis and other intersex rights advocates are pushing for a ban on cosmetic genital surgeries for infants born with intersex variations, saying they do irreparable harm and should be delayed until a child is old enough to give consent.
Many pediatric urologists are staunchly against this growing movement, arguing that legislated delay on certain procedures is a one-size-fits-all approach that denies parents their right to decide on surgeries.
Some former patients also oppose a ban, saying the procedures they received as infants were necessary to save them from physical pain and emotional distress.
That battle is increasingly being waged in state legislatures. One of the most notable victories came last year, when the California State Senate passed a resolution condemning medically unnecessary surgeries. But that resolution was non binding, and intersex activists want a mechanism for enforcement.
Since 2016, lawmakers in five states — Indiana, Nevada, Texas, Connecticut, and California — have introduced legislation that would ban surgeries deemed medically unnecessary. Some efforts failed, while others have stalled. But it’s still percolating in some of the biggest states in the country: A second California measure that would enforce its earlier resolution was deferred to the 2020 legislative session. In November, a New York state legislator announced his own plans to introduce a similar bill, also in 2020.
“We're pushing for a shift in the way that intersex people are treated towards a 'first do no harm' approach,” said Pagonis.
“The surgeries can still happen, but the person can grow up and make a decision and have autonomy over their body. And that's huge. It's a human right.”