What The Hell America!

For many Americans, planning a doctor’s appointment comes with logistical headaches: taking a day off from work; scheduling months in advance; dealing with insurance coverage and related costs. For Emory Hufbauer, it also involves a seven-hour cross-country flight. 

Hufbauer is intersex, meaning they were born with sex characteristics that don’t fit neatly into the binary of male or female. As an infant, they were subjected to procedures that assigned them a sex. They have long struggled to find health care needed as a result of these procedures in their state of Kentucky, where they advocate to bring that care and help others navigate it. 

Though it’s difficult to estimate, one widely cited study found that 1.7 percent of people are born intersex. Few doctors are equipped to treat them. 

“It’s very common for intersex people to have various … intersex-related ailments reach a crisis point because they can’t safely get any kind of care locally,” Hufbauer told The 19th. 

That reality was brought into sharp focus after President Donald Trump issued an executive order January 28 barring doctors from providing gender-affirming care to kids 19 years old and younger, in part by threatening to cut federal funding to health care providers. The order, one of several that targets transgender people, is not in effect amid legal challenges.

These orders directly impact intersex Americans, too, advocates say. 

The same doctors who treat transgender children are some of the only ones equipped to help intersex youth, who have no choice about needing care and live in states where often none can be found. 

Intersex advocates say that they have been shut out of the conversations about gender and health in the United States and that the January 28 executive order has far-reaching consequences for intersex kids, not just because it allows dangerous surgeries to continue.

“None of the EOs mention intersex people specifically — they are systematically scrubbing mentions of intersex people from government websites,” the intersex rights group InterAct wrote  in an email to community members.

Several hospitals and doctors have complied with Trump’s order, announcing in recent weeks that they have halted gender-affirming care, though some have resumed care based on ongoing litigation. In some cases, those same health centers that have stopped gender-affirming care have also largely continued to perform controversial sex-altering operations in the form of intersex pediatric surgeries, according to InterAct.

Intersex advocates say that juxtaposition lays bare the hypocrisy of the order and those following it. It’s been “striking” to see those same health providers continue non-consensual intersex surgeries, said Sylvan Fraser Anthony, legal and policy director for InterAct.

“Hospitals have been so reluctant — flat out refusing or taking years before issuing some partial policy about whether they’re going to be changing practices related to these non-consensual surgeries on intersex children,” Anthony said. “They’ve taken years, if not decades, to review those [policies] and most have not been responsive at all to calls to review and update their standards and their practices for intersex children to respect their bodily autonomy. Whereas they’re responding within a matter of days and weeks to this executive order when no one is making them — rushing to make policy moves that harm trans patients.”

Marisa Adams, an intersex advocate, also points out that Trump’s approach to transgender people fails scientifically, especially as it relates to intersex people. In particular, she pointed to a day one order that claims there are just two sexes. 

“It fails to realize, or fails to acknowledge, that intersex people can have any gender,” Adams said. “So there’s intersex women, there’s intersex men, there’s intersex nonbinary people. I’m an intersex woman, and that executive order certainly does nothing for me.” 

Doctors have performed intersex surgeries since the 1960s as a way to “correct” sex variations, often assigning infants a sex category before they can consent. In many cases, the surgeries can have permanent consequences, from infertility to loss of sexual sensation to painful complications. Studies have shown that they can have lifelong traumatizing psychological impacts. 

The surgeries have been the focal point of protest for years and have been condemned by several human rights groups, including the United Nations, the World Health Organization and Amnesty International.

No state or federal laws prohibit intersex surgeries, which can include reshaping or removing genital tissue and internal reproductive organs. They are usually performed on children before age 2, according to InterAct. California has unsuccessfully tried to ban the practice in past years.

At least two hospitals — Lurie Children’s Hospital of Chicago and Boston Children’s Hospital — have announced publicly that they have ceased performing some intersex surgeries. Lurie Children’s Hospital’s public statement in 2020 on their procedures notes that they continue to perform some surgeries. Boston Children’s Hospital’s statement, also made in 2020, similarly leaves caveats for some surgeries. 

Meanwhile, gender-affirming care, endorsed by every major medical association to treat gender dysphoria for youth, is barred in 26 states and by Trump’s executive order.

“This whole system of non-consensual interventions on intersex bodies exists because our natural existence [as intersex people] contradicts the idea that all people are born male or female,” said Hufbauer, who travels out of state at least twice a year to access gender-affirming care because they can’t access it in Kentucky. 

While InterAct does not maintain an exhaustive list of health care providers in America that perform intersex interventions and related surgeries, the organization said over a dozen hospitals across the United States are involved in studies in which infant patients undergo intersex surgeries. InterAct also tracks health providers that perform intersex surgeries by reviewing websites that advertise services and other public statements.

The 19th contacted representatives for some of the hospitals and providers that InterAct says performs intersex surgeries. Some did not address questions about the scope of what procedures they perform. Anthony said InterAct advocates have experienced similar responses, in part because they say hospitals can sometimes have different interpretations of intersex surgeries.  

“Because medical providers may espouse differing views on what constitutes an ‘irreversible’ surgery, or which variations qualify as intersex, it might be possible for them to be a little bit cagey on exactly whether they are still performing those surgeries even when directly asked,” they said. “But we saw evidence that they were going on within the last three years, according to published research, and in the absence of a hospital making any sort of public statement about having ceased or restricted the practice … we assume that it’s still going on.”