Doctors, Lay Down Your Knives Against Intersex Children

Hayley Gorenberg
Jul 25, 2017 · 5 min read

Their genitalia surgically rearranged as infants and children, before having any say in the matter, intersex people describe their experiences and objections in horrifying detail in today’s compelling U.S. report, “I Want to Be Like Nature Made Me,” researched by Human Rights Watch and interACT, the nation’s advocacy group for intersex children.

If you don’t have an intersex child or are not intersex yourself, you may not know how common these surgeries are — because they’ve been deeply shrouded in shame, closeting and ignorance, often concealed from intersex people themselves, who did not know the real reason they were cut again and again.

At least one in every 2,000 people has an intersex trait, and there’s a sky-high incidence of these interventions, which call into question human and civil rights, prohibitions against sterilization and genital mutilation and core values of medical ethics and informed consent.

Surgery after surgery — often a series of physically and psychologically painful attempts at gender-norming babies’ and children’s gonads — performed on genitals and internal sex organs commonly result in scarring, loss of sexual sensation and function, diminished reproductive capacity or sterilization, incontinence, the need for lifelong hormonal therapy, irreversible measures to impose a sex assignment that an intersex person may later reject and, of course, psychological trauma.

In tandem with today’s report, Lambda Legal has sent an open letter calling on medical associations nationwide to lead their memberships in ending surgeries on intersex babies and children, except in those few instances where a physical emergency exists (for example, the inability to void urine or where organs have formed outside the body).

Read the full letter here.

Lambda Legal proudly sponsored interACT to help it launch as a freestanding organization with a vital mission. We are now fighting in federal court for the rights of Dana Zzyym, the plaintiff in Lambda Legal’s case Zzyym v. Tillerson, who by age five had been subjected to several irreversible, invasive, painful and medically unnecessary surgeries designed to make Dana’s body conform to sex stereotypes. The surgeries caused permanent scarring and damage, and they didn’t fully disguise Dana’s intersex body — as suspect as such a goal truly is.

Like many intersex adults subjected to such surgeries as children, Dana experienced shame and stigma, as well as physical pain caused by attempts to erase intersex traits from a body that was not stereotypically “male” or “female.” Dana now works with the Intersex Campaign for Equality in opposing such surgeries, adding yet another powerful voice to the chorus of objections and outrage.

And at Lambda Legal — where a key to our mission is working to ensure none among us is limited by corrosive gender stereotypes in action — we raise up childhood intersex surgeries as yet another aspect of how gender-norming can wreak lifelong devastation.

Two common goals of cosmetic “normalizing” surgeries on children’s genitals are to enable heterosexual penetrative intercourse, and to help conform to gender and sexual norms. As one doctor interviewed by Human Rights Watch said, “When we’re trying to force people into cultural normative, hetero-normative situations, there’s a high chance that we’re going to make some major mistakes and harm people irreparably.”

This makes no sense — unless you value surgical attempts at gender-norming over basic rights.

Lambda Legal client Dana Zzyym.

Intersex physical traits are most often atypical but medically benign, like a phallus that is larger than a typical clitoris but smaller than a typical penis; a vagina that has a smaller opening or shallower depth; or a penis with an opening somewhere other than the tip of the shaft. These traits are not medical emergencies, and surgery to treat them does not improve necessary bodily functions. The operations are cosmetic — and are performed with no consensus about how much variation is “too much.” For example, there is no agreed-upon measure to declare a clitoris “too large” or a penis “too small.”

Though we do not need sexual function in infancy and childhood, doctors are performing childhood surgeries to try to shape genitalia for future heterosexual penetration in adult life — even if the surgery diminishes sexual sensation. Also, altering genitalia or removing gonads of children too young to declare their gender identity risks surgically assigning the wrong sex — meaning that children will grow up to reject the sex that has been irreversibly surgically assigned.

But assigning the wrong sex is not the only risk. Removal of gonads can end options for fertility and will lead to lifelong need for hormone therapy. The genital surgeries done on intersex children can also result in loss of sexual sensation and ongoing pain.

Doctors who operate on intersex infants and young children citing lack of data on the outcomes for children who do not go under the knife are working, as HRW and interACT put it, “exactly backwards.”

We must end the surgical race toward an unproven, highly questionable “normal,” when there is little evidence that these surgeries result in genitals that look or feel “normal” or ensure “normal” lives for the children affected — even if that were an acceptable goal absent their consent. As an endocrinologist said in the report, “One of the surgeries that I think makes people very angry is the clitoroplasty, because it’s just an enlarged clitoris and there’s no function that you’re serving by making it smaller — you’re just treating the eye of the beholder.”

Three United States surgeons general have written that “there is insufficient evidence that growing up with atypical genitalia leads to psychosocial distress,” and “while there is little evidence that cosmetic infant genitoplasty is necessary to reduce psychological damage, evidence does show that the surgery itself can cause severe and irreversible physical harm and emotional distress.” As Dr. Joycelyn Elders, Dr. David Satcher and Dr. Richard Carmona said, “These surgeries violate an individual’s right to personal autonomy over their own future.”

Today’s Human Rights Watch and interACT report.

As HRW and interACT point out, “The evidence is overwhelming that these procedures carry great risk of catastrophic harm.” As the United Nations Special Rapporteur on the Right to Health said years ago, “intersex genital surgery…is a painful and high-risk procedure with no proven medical benefits.”

It’s well past time to lay down knives raised for decades against so many of our children, simply for being born different.

Hayley Gorenberg

Written by

Deputy Legal Director & General Counsel @LambdaLegal. Pursuing justice for all.

Lambda Legal

We're the oldest & largest national legal org working for the civil rights of LGBTQ people & everyone living with HIV.

Welcome to a place where words matter. On Medium, smart voices and original ideas take center stage - with no ads in sight. Watch
Follow all the topics you care about, and we’ll deliver the best stories for you to your homepage and inbox. Explore
Get unlimited access to the best stories on Medium — and support writers while you’re at it. Just $5/month. Upgrade