When Will Medically Unnecessary Intersex Surgeries End?

Intersex activist and co-founder of Intersex Justice Project (IJP) Sean Saifa Wall explained that when choosing a language to name these surgeries, "I try to be specific about what's happening. This is invasive, non-consensual, medically unnecessary surgery."

He also pointed out that some might choose words like "intersex genital cutting" or "intersex genital mutilation" to describe these surgeries.

Language around the implications of a surgery that "corrects"—implying there's something wrong—contributes to pathology when doctors speak about intersex people. Wall pointed out how medical practitioners have pathologized queer and trans identities for decades, well before offering affirming care. Pathologizing language suggests there's something abnormal with an intersex variation and Wall notes this might pressure someone into consenting to surgery. However, that doesn't mean it's informed consent.

"Pathology perpetuates the harm that intersex people experience, and it gets in the way of getting intersex-affirming health care that is attuned to the individual," Wall said. "Because medicine is grounded in the gender binary, medicine is invested in heterosexism, so many surgical offerings—like hormones—all center around maintaining the gender binary. And there's still a lot of stigma and secrecy."

The secrecy medical practitioners uphold in performing intersex surgeries is multifaceted and involves incorrectly classifying these surgeries and failing to inform parents of future risks.

"Surgeries are often sold under the guise of cancer prevention or unrelated medical conditions that may appear with similar characteristics, and the codes used for billing do not ever explicitly read 'intersex corrective surgery,'" explained Scout Silverstein, of FEDUP Collective.

Many intersex people also note difficulty obtaining their medical records.

Wall recently received a call from a young Dominican mother who gave birth to a child with an intersex variation. Doctors wanted to perform surgery, and although the mother said she had a boy and wanted to raise her child as such, her child may have a uterus and masculine genitals.

"She saw a pediatrician who recommended she see a urologist to do surgery," Wall said. "She didn't want to do genital surgery, so he called CPS [Child Protective Services], who threatened removal of the child unless she could prove she would consult with the urologist. This is 2021. The pressure is still there when children are born with bodies that are atypical."

The pressure parents receive from doctors also usually comes at a vulnerable time. Most intersex surgeries are performed when a child is younger than 2 years old.

Pathology perpetuates the harm that intersex people experience, and it gets in the way of getting intersex-affirming health care that is attuned to the individual.

Wall notes parents may receive either direct or indirect pressure from doctors, with sentiments like "your child will get bullied" or "your child won't know which bathroom to use." He explains that even though it's been slow to catch up to the times, society is "more inclusive around different gender expressions and identities, which in turn creates more space for young intersex people, even if they don't identify as intersex."

A portion of the responsibility in ending medically invasive surgeries on intersex people is for parents to do their research and "respect and honor their child's body and their child's choice." InterACT's site advises: "Waiting is best."

Doctors commonly withhold the future ramifications of intersex surgeries. Physical pain doesn't end at surgery—it continues throughout a person's life, associated with scar tissue, bone issues, loss of genital sensation, sexual dysfunction or, as Wall notes, fear of being in medical spaces because of the harm that person has endured.

Removal of healthy reproductive organs and healthy tissue affects a person for the rest of their life. This is the case for Wall, who developed osteopenia—a loss of bone mass—in his 20s after being castrated at age 13.

"The trauma enough should be the reason for delaying surgery, for creating patient-centered models, involving intersex adults in this process of care and developing protocols for young people," Wall said.

He noted a quote by intersex theorist Iain Morland, who said, "With intersex surgeries, there is always the promise of trauma." Wall expounded, saying that trauma could be betrayal, body and gender dysphoria, and "knowing you were whole, but you were divided or broken, not of your own choosing."

Wall said raising awareness on the issues of intersex surgery will require a multipronged approach involving the dissemination of data, passing new laws and making people more aware.

Improving data dissemination

It's difficult to mark the progress being made to end intersex surgeries because there is insufficient data on what's really going on.

"We're not able to track because the very metrics about our bodies existing are unavailable," Silverstein said. "We estimate that the number is much higher. Those of us who identify as intersex and our allies largely believe that the 1.7 percent estimate is much lower than our human biodiversity actually demonstrates."

It's also difficult to obtain adequate data when doctors misclassify surgeries.

The lack of statistics accounting for intersex bodies even existing is in itself a form of discrimination. In a 2016 issue of Reproductive Health Matters, author Morgan Carpenter explained, "solid data on the prevalence of 'normalizing' interventions are scarce, but despite media reports stating the contrary, interventions remain routine and central to the management of intersex traits."

Carpenter continued, noting that although female genital mutilation (FGM) surgeries are prohibited in the United Kingdom, there is an "increasing number of clitoral surgeries" in the U.K. for children ages 14 and younger.

The need for new legislation

"The law doesn't know what to do with intersex variations," Wall said, going on to explain that decisions over intersex surgeries have mostly been left to medical establishments.

It's a textured issue because doctors are highly incentivized to perform these surgeries under the veil of capitalism. According to the 2021 Medscape Urologist Compensation Report, the average urologist income is $427,000 and incentives make up 17 percent of their annual income.

These numbers prompt Wall's urging for legal regulations.

"What we've seen with the California Medical Association and the Society of Pediatric Urology is they were willing to buy out elected officials in order not to move legislation," Wall said. "Legislation that calls for bans, that calls for delay will actually stop medical providers from doing certain procedures if they are illegal. There has to be some sort of repercussion or penalty in order to prevent surgeons from doing the surgery. Many surgeons have said on record that they will not stop doing these surgeries unless they are legally required to do so."

Wall refers to SB-225 in California, a bill that would ban medically unnecessary surgeries on intersex infants until they are 12 years old and which stalled for the third time in 2021. Medical groups opposed it, saying it "would jeopardize medical care for thousands of young patients," even though the bill explicitly sought to ban "medically unnecessary procedures," and intersex surgeries are cosmetic, not lifesaving.

Intersex Campaign for Equality makes note of the fact that according to The Mercury News, "the California Medical Association, one of the bill's primary opponents, donated $50,000 last week to a committee working to reelect Sen. Steve Glazer, a Democrat and chairman of the panel that rejected the bill."

Education might help catalyze legislative change. Silverstein, alongside several advocates at InterACT, worked on a bill in New York that called on the New York City Department of Health to develop educational materials around intersex bodily autonomy and provide awareness around medically unnecessary treatments. The bill passed this year.

Intersex Justice Project's campaign called on the Ann & Robert H. Lurie Children's Hospital in Chicago to end intersex genital mutilation—the same hospital where the co-founder of IJP, Pidgeon Pagonis, endured a clitorectomy as a child. The hospital issued a statement to postpone these surgeries on youths and is the only hospital in the U.S. to apologize for the harm it has caused intersex individuals.

Following suit, Boston Children's hospital banned two types of surgeries: clitorectomy and vaginoplasty. So far, these are the only two hospitals to issue reforms around intersex surgeries.

There are 6,090 hospitals in America.

Cultural awareness

Having conversations that challenge binary notions of biological sex is key to garnering awareness around intersex surgeries and, as Wall adds, not seeing intersex bodies as a "threat."

Awareness can also come from anti-discrimination laws, regulations and adequate data on intersex bodies and unnecessary surgeries.

"The vast majority of people," Silverstein added, "do not realize that these surgeries on intersex youth are common practice in their own backyards."