Op-ed: Angry Intersex People With Signs!

By Riki Wilchins

Originally published on Advocate.com September 18 2013 4:00 AM ET

When I first met Cheryl Chase 15 years ago, she was striking, to say the least: intense, charismatic, brilliant, and oh yeah … really, really angry.

Cheryl had been born Charlie, until doctors decided he was really she, and his small penis was her overly large clitoris.

So they operated; cut it down to better resemble "normal" girls. They told Cheryl's mom that she must never acknowledge any of this to her daughter, that she must, in fact, lie to her own child's face if she was ever asked about it. Because, they thought, a child knowing that his or her genital sex was in any way ambiguous would be so traumatic as to be devastating.

This was standard clinical practice at the time, and sadly, in too many places it is still followed.

Except as she grew, Cheryl realized something was wrong. How could she not?

For one thing, she had lost most of her genital sensation and couldn't experience sexual pleasure in that area.

And then there were also the pretty obvious signs that someone had operated upon her body.

But it took her years of searching to find out the truth of what had been done to her and why she felt so wrong and so different.

Eventually, understandably, she grew deeply depressed. By the time she was a world-class technology programmer who lived part-time in Japan, she was completely suicidal and only avoided taking her own life because she feared it would bring shame and cultural ostracism upon her hosts.

Part of what was slowly killing her was the sheer isolation and loneliness of being the only one in the world.

So Cheryl did what every accidental activist has done for centuries — she organized.

She founded the Intersex Society of North America, the world's first intersex advocacy organization. She told me at the time she did it mostly to find other people, to see if there was anyone else out there like her.

And this is a fine juncture for a sidebar on language. Although in the past Cheryl has tolerantly allowed me to refer to her as “The Head Herm,” intersex people don't ever use the term hermaphrodite, which in any case was never accurate and actually derives from the Greek figure of Hermaphroditus, who had a female body with male genitals.

Most of us think of intersex as “people born with both sets of genitals,” a condition so rare as to practically qualify as an urban myth.

Intersex – the new term is disorders of the sex development (DSD) — covers a cluster of conditions of chromosomal or anatomic sex at birth. Most of those conditions are nonthreatening and have little or no clinical or medical significance.

Cheryl used to talk about them as “unexpected genitals,” but I think the really crucial thing about them is that these are genitals that make doctors uncomfortable. So they have to do something about it. Naturally. that means doing something to change the infant, not their own discomfort.

Current clinical standards still call for cutting up intersex kids, the earlier the better, so they have genitals that better resemble yours and mine.

Well, yours anyway.

Cheryl pithily defined DSD as a psychological emergency on the part of doctors treated by performing surgery on the body of the infant. That about sums it up.

It's done as compassionate surgery and even often for free. But that does nothing to ease its sheer awfulness and barbarity or the terrible waste of lives and young bodies.

Cheryl and I eventually started a protest group — yes, an intersex protest group — irreverently named after ISNA's occasional newsletter, Hermaphrodites With Attitude!

With Transexual Menace folks, we'd picket outside major urban hospitals – practically all of them perform intersex surgery – and big-name pediatric conventions. The doctors and medical staff simply didn't know what to make of us, looking on as if they felt under attack! By real live hermaphrodites! In matching T-shirts! With nasty picket signs!

Well, we knew then that the surgery — intrusive, unnecessary, irreversible, and utterly lacking in the most basic notions of informed patient consent — was ripe for medical malpractice suits. Cheryl and I would sometimes daydream about how things might be different for future DSD kids, if only there was a way to file lawsuits.

But the statute of limitations always had run out by the time children grew into (angry, aware) adults.

And parents never sued. And even if they wanted to, there was no national organization, with lawyers and funding and expertise, to back them up.  

Now. There. Is.

With help from Advocates for Informed Choice, a South Carolina couple have filed a landmark lawsuit against state doctors and social workers for unnecessary genital surgery on their 16-month-old child. The Southern Poverty Law Center has joined the new group in the suit, and you can sign on to support the action here.

"We feel very strongly that these decisions to permanently alter somebody's genitalia and their reproductive ability for no medical reason whatsoever is an abhorrent practice and can't be continued," said Pamela Crawford, the mother.

"It is too late for our son. The damage has been done to him."

The child, identified to only as M.C., had been in the foster system when doctors noted the genital ambiguity and decided they would remake the genitalia — and the child — as female.

Alas, M.C., now 8, identifies as male and has been living as a boy. God only knows what awaits him as an adult with the body these doctors decided it was their right to create.

And M.C. is only one of multitudes. Dozens of these surgeries take place every day in U.S. hospitals. If this took place abroad, we'd call it by its real name: genital mutilation.

A U.S. District Court judge has already ruled that this unnecessary surgery on DSD kids could violate the Constitution, denying a state motion for dismissal.

The doctors and the state are refusing comment, supposedly because it's pending litigation. No doubt they feel … under attack! By real live hermaphrodites! With lawyers! Filing nasty lawsuits!

Well, here's hoping they do. And that this is only the start of many more nasty lawsuits. This dark, medieval corner of negligent malpractice needs to be pulled kicking and screaming into the light of day. Federal lawsuits have a way of doing that. They also will go a long way toward making doctor and hospitals — who believe it is their right to carve gender stereotypes into the bodies of uncomplaining infants — think twice before they operate.  

The landmark actions of the Crawfords and Advocates for Informed Choice have brought that time one day closer. Here's hoping other parents follow. This practice must stop.
 

RIKI WILCHINS is an activist, stand-up comedian, and author of Read My Lips.