Op-ed: Why We Must Protect Intersex Babies

By Hida Viloria

Originally published on Advocate.com September 27 2013 5:12 AM ET

A few weeks ago I testified as an expert witness on the television show Caso Cerrado (Case Closed). It’s kind of like The People’s Court but in Spanish and is the first television show on a Spanish-language station to have been nominated for an Emmy.

I was kind of terrified because the “case” would determine whether an actual intersex baby’s genitals got cut up. The mother was suing her husband, the father, for not granting permission to have their 2-month-old’s clitoris surgically reduced. It’s the same surgery that’s called female genital mutilation and outlawed in the U.S. when performed on African baby girls. The surgery I’m very happy to have escaped.

Even though it wasn’t an actual court case, but an arbitration that wouldn’t set legal precedent, the family was real and would have to abide by whatever the arbitrator ruled. Yikes. I was grateful for the opportunity to influence the outcome, but horrified because I had no idea which way the decision would go: acceptance of this baby, or acceptance of what some of us call intersex genital mutilation.

The show hasn’t aired yet, so without giving away details I’ll just say I was thrilled with the outcome. The arbitrator, Cuban attorney Ana Maria Polo, was clearly well educated on all sides of the topic and understood the discriminatory nature of the arguments for surgery. It was a huge relief, and a sign of how far awareness about intersex people has come.

I’m hoping results will be similar in the current South Carolina court case in which the parents of an intersex boy are suing the doctors and state officials involved in the operation he had before they adopted him. The federal court denied motions to dismiss the case, concluding that the child’s medically unnecessary surgeries could be unconstitutional. M.C., as he’s known in the press, was born intersex, with ambiguous genitalia, and his doctors decided that he should be surgically reconstructed to have a typical male or female body. They chose female and recommended the necessary surgeries to officials from the state Department of Social Services, M.C.'s legal guardians at the time, without informing them of the medical and psychological risks involved or that the surgery was medically unnecessary.

The doctors’ failure to provide adequate, informed consent is part of why the lawsuit is possible. Fortunately, there are now resources available that doctors can share with parents of intersex newborns, such as Your Beautiful Child: Information for Parents, to provide all the necessary information that was not shared in this case. But sadly for M.C., his caretakers at the time were not privy to this and went along with the doctors’ recommendations. And while many are shocked by the case, it’s typical of what intersex people in First World nations have been being subjected to for over half a century, since the practice was pioneered in the U.S. Adults subjected to these practices as infants and children have been informing medical doctors and experts of the harms they suffered as a result for more than 20 years — privately, in academia, and in popular mainstream media — but doctors haven’t wanted to change their practices to address these follow-up reports.

Maybe they’ll listen to others though. The United Nations recently recognized the irreversible physical harms and psychological harms caused by nonconsensual genital surgeries on intersex babies, condemning the practice this past February. M.C.’s parents have come out in support of not only their son — who they knew was intersex when they adopted him — but of intersex people in general.

In a video released by the Southern Poverty Law Center, one of the organizations handling the case along with Advocates for Informed Choice and two law firms, Pamela Crawford says, “By performing this needless surgery, the state and the doctors told M.C. that he was not acceptable or lovable the way he was born. They disfigured him because they could not accept him for who he was — not because he needed any surgery.”

M.C., who’s now 8, identifies as a boy, and asks about the parts he would have had without the surgery. While the damage done to him can never be repaired, the Crawfords have taken on the lawsuit to try to put an end to these abuses. As Pam Crawford said, “I would give anything for this not to have been done to our child. I don't want it to happen to any more kids."

I don’t either. Changing intersex babies’ genitals without their consent is wrong, regardless of whether medical experts dub them deficient or “abnormal.” As I pointed out once to a doctor that used this word, we don’t call children who are atypically intelligent or attractive “abnormal,” much less operate on them to remove their variance from the norm. Calling intersex traits abnormal is prejudiced and stigmatizing enough, but using prejudice to justify eliminating physical traits you don’t like — without consent or medical necessity — is a form of discrimination frighteningly similar to eugenics.

HIDA VILORIA is chairperson of OII, the world's largest intersex advocacy organization, and director of its American affiliate, OII-USA. She has written about intersex issues for Ms., The Global Herald, CNN.com, the American Journal of Bioethics, and others, and has been a guest on numerous television shows, including 20/20 and Oprah. You can read her blog Intersex and Out.