For Philly’s intersex community, Trump administration’s focus on gender and sex is a threat

When Shana Knizhnik was growing up in Philly, she seemed like the kind of girl who wasn’t afraid of anything.

As a student at high-achieving Masterman High School in the early aughts, she was opinionated, even for the debate club. She was on the tennis team, she was a theater kid, getting big roles like Adelaide in Guys and Dolls.

But Knizhnik had a secret.

The childhood memories were a bit hazy; she recalled being told something was wrong with her ovaries, requiring surgery when she was a baby. Her mother said she told her daughter she was born without a uterus.

She understood she could not one day become pregnant and that she would have to take “special medicine” — estrogen — to develop like other girls. When her friends started going through puberty, she made up period-related cramps and pretended to experience “that time of the month.”

It was only as a teen, looking through some of her mother’s papers, that Knizhnik learned she had Androgen Insensitivity Syndrome.

She was born without ovaries. The surgery in her infancy had removed testes. She looked like a girl and felt like a girl, but her genotype wasn’t XX. It was XY. Chromosomally, she was male.

“I remember feeling like my entire world was turned upside down,” Knizhnik said. “It completely changed my conception of who I was.”

Knizhnik, now 36, is intersex — an umbrella term for people born with chromosome patterns, hormones, gonads, or genitals that don‘t fit typical binary notions of male or female bodies.

Intersex experiences range widely, and their realities complicate the simple two-sex notion of the human race.

But now, Knizhnik and other intersex people are speaking out in the face of President Donald Trump’s administration’s efforts to define sex as a biological binary.

Hours after Trump took office in January, he signed an executive order declaring it national policy to recognize only two sexes — male and female — “restoring biological truth to the federal government.”

But intersex advocates say the idea of just two sexes doesn’t track with what we know about human biology — or about them.

“They’re completely erasing intersex people because our existence challenges everything that they are trying to push forward around these unscientific ideas that sex is a clear-cut binary, and there’s no variation in human existence,” said Maddie Moran, spokesperson for interACT, the nation‘s largest intersex advocacy organization.

Nearly 2% of all people are intersex, according to the Office of the United Nations High Commissioner for Human Rights, as common as redheads.

With more than 40 known intersex variations, their identities are varied. Some intersex people are transgender and identify as a sex different from one assigned to them at birth. Other intersex individuals do identify with the sex assigned at birth.

A person with a variation known as ovotestes, for example, will have a gonad or gonads with ovarian and testicular tissue. They may ultimately identify as male or female.

Someone with Klinefelter syndrome, another variation, will usually have male genitalia but an extra X chromosome, resulting in an XXY variation. Men with Klinefelter may have less muscle mass and less facial and body hair.

Some variations are detected in infancy or childhood; others, later in life. Some present health risks, and intersex adults say they have often had difficulty finding medical care attuned to their special needs.

Defining biological sex as strictly male or female, advocates say, isn’t just inaccurate, it also puts intersex children at risk.

Many call out especially harmful surgical procedures performed on intersex children and teenagers so that their bodies conform more to binary ideas of male and female — in Shana Knizhnik’s case, removing the testes present at birth.

The surgery, doctors told mother Lyudmila Knizhnik, was “to make it easier for the person to adapt to society.” She was told the surgery was largely cosmetic.

“You look at this child, your beautiful, beautiful little thing, and you have to make a decision,” she said. “It‘s just impossible to comprehend.”

Some of these procedures are painful. Intersex people talk about repeated, invasive physical exams as children and other treatments. Some proved traumatic, like the practice of school-age girls with certain intersex variations being given dilators — medical grade dildos — to enlarge their vaginal cavities for husbands they had yet to contemplate.

Ilene Wong, now a Chester County urologist, was doing her residency with a California medical school when she was called on to take part in a gonadectomy on an intersex teenager.

“When I talked to her post-op it was clear she had no idea we were removing her testes, or that she would need hormone replacement therapy — she still had no idea what her diagnosis really was.”

Wong now advocates against such surgeries as a member of interACT‘s board. She says medical practice has evolved amid backlash against these procedures.

Still, most of the major U.S. pediatric medical associations have declined to take a stand. Only two children‘s hospitals, Boston Children‘s Hospital and Lurie Children‘s Hospital in Chicago, and one public health system, the New York City Health and Hospitals Corporation, have committed to ending medically nonessential intersex surgeries for minors.

Children‘s Hospital of Philadelphia declined to comment about its STRIVE program, which provides care for children with differences of sexual development (DSD), also known as intersex variations. STRIVE’s website notes treatment options include surgery.

Last January, in the final days of the Biden presidency, the U.S. Department of Health and Human Services released a report acknowledging the “well-documented medical harms to intersex people across their lifespan resulting from childhood medical interventions performed when the child was too young to participate in decision-making.”

It also noted medical providers continue to recommend and conduct those practices.

The report recommended more education for families and medical providers and changes to laws and policies.

Intersex activists hailed the document. But, shortly after President Donald Trump took office, it was removed from the agency’s website.

“It‘s rolling back decades of activism and work that we’ve done to try to educate people, and it‘s politicizing something that should just be biology,” Wong said.

The implications of defining gender as strictly male or female have social and psychological impacts as well.

A recent survey by the Trevor Project, an organization focused on suicide prevention for the LGBTQ community, found that 48% of intersex people between 13 and 24 seriously considered suicide in the last 12 months and nearly a fifth had attempted suicide.

In addition, two in three of the intersex youth said someone had tried to convince them to change their sexual orientation or gender identity — including healthcare providers.

InterACT‘s Moran said the ongoing actions of the government are also having a psychic toll.

“What we’re seeing in this particular moment, especially what intersex young people are experiencing, is this weird intersection where bills and policies and executive orders are attempting to target intersex people and at the exact same time they are also claiming intersex people don‘t exist,” they said.

When Rory Seymour, now 27, was growing up in Massachusetts, life revolved around doctor visits, anxiety, and the feeling there was something very wrong. They endured several invasive procedures.

Real relief ultimately came not through medicine, but at Haverford College, when they found other intersex individuals and were able to embrace their identity.

“It felt empowering to know that, no, this isn‘t a disorder that needs to be fixed,” they said.

Bonnie Scranton, the mother of an intersex child and a clinical social worker, recently earned her social work doctorate at Penn‘s School of Social Policy and Practice. There she developed a model for clinically guided program for parents of intersex children called Project LISTEN (Let Intersex Stories Teach Educate and Nurture).

“It‘s important to be able to see intersex adults who are in their 40s, who have jobs and partners and are happy and healthy,” she said. “That was important for me as mom.”

Max Lara, 42, and partner Chase Schoenberg, 41, fill their home in Lindenwold, N.J., with the smells of good cooking.

And that‘s good, because life hasn‘t always been so cozy for Lara, in part because there was so little information and so few resources to treat his needs as an intersex person.

Lara was assigned female at birth and suffered through childhood health problems. A serious hormonal imbalance, undetected and untreated for decades, led to struggles with obesity and heavy menstrual periods. Lara, who now identifies as male, suffered disabling anemia, chronic pain, and fatigue.

The painful, untreated condition caused Lara to leave his career as an ICU nurse and the workforce entirely for five years.

It wasn‘t until well into his 30s that Lara met with a doctor more attuned to intersex health and was put on new medication that treated his hormone imbalance.

He required a hysterectomy as a result of not getting the right treatment sooner, and his health finally began to improve.

Currently a school cafeteria worker seeking to renew his nursing license, he remains uncertain about the future: Will he be able to travel on his current passport, which identifies him as male? Will he, as an intersex person, be able to continue to access the medication and care that helped him get his life back on track? Or will his very existence be seen as a threat?

“It feels like OK now, they can actually just kill us in the street,” he said about the growing anger against people who do not fit a gender binary. “That‘s what it feels like for us.”

Shana Knizhnik, the Philadelphia girl with a secret, grew up to be a woman who would not be silenced.

While she was a student at New York University School of Law, she started a viral blog dedicated to U.S. Supreme Court Justice Ruth Bader Ginsburg. The year she graduated, she and journalist Irin Carmon coauthored a biography of the groundbreaking jurist titled Notorious RBG: The Life and Times of Ruth Bader Ginsburg.

It became a bestseller and was the basis of an Academy Award-nominated documentary.

In October 2020, in honor of Intersex Awareness Day, Knizhnik decided to publicly share her secret in a Teen Vogue article, “I‘m Coming Out as Intersex After Years of Keeping It a Secret.”

Last November, Knizhnik took on a new career challenge. An ACLU attorney focused on LGBTQ rights, today she is fighting Trump policies that target the civil rights of trans and intersex people.

The government can’t erase us, no matter how hard it tries,” said Knizhnik. “We will continue to fight for our ability to exist and to thrive.”