Intersex Activists Push Hospitals to Ditch Nonconsensual Surgeries on Children

When Marissa Adams was a toddler, she underwent surgery at Boston Children’s Hospital to make her genitalia look more like a doctor’s idea of “normal.” Like as many as 1.7 percent of people, Adams is intersex, born with some combination of hormonal, chromosomal or anatomical differences that put her outside of the textbook definition of female or male. And like a growing number of intersex people, she has spoken out about how surgery performed when she was too young to understand it left her with lasting emotional and physical difficulties.

On October 21, Boston Children’s Hospital, one of the leading pediatric institutions in the country, announced it would stop performing two procedures — one used to construct or reduce the size of a clitoris and another used to construct or augment a vagina — until patients are old enough to consent.

“After convening an interdisciplinary group to review our policies and practices, Boston Children’s has decided we will not perform clitoroplasty or vaginoplasty in patients who are too young to participate in a meaningful discussion of the implications of these surgeries, unless anatomical differences threaten the physical health of the child,” read a statement provided to Truthout from the hospital’s behavioral health, endocrinology and urology program.

Adams was thrilled. “It’s the kind of thing that we’ve been working toward and since it was the exact hospital that did this to me and kind of changed my life forever, it was just great news,” she told Truthout.

Kimberly Zieselman, executive director of the advocacy group interACT, called it a “historic moment” in the campaign to end medically unnecessary surgeries on intersex children, a movement that, over the past few years, has won a series of landmark victories, including the introduction of bills to ban the surgeries in California, New York and other states, and the announcement by Lurie Children’s Hospital in Chicago in July that it would stop performing certain “irreversible” surgeries until patients were old enough to consent. While some surgeries on infants may be needed to allow a child to pass urine, others, aimed at “normalizing” a patient’s body by changing the shape of genitalia or removing internal testes, have sterilized intersex people, deprived them of sexual sensation or reinforced a gender assignment that doesn’t match their identity. In order to win recognition of their cause, intersex people often have had to lay bare the most intimate details of their lives in legislative hearings and public protests. For Zieselman, the victory in Boston felt like a culmination of that work.

“For me it’s actually kind of an emotional moment because myself and so many others have been speaking out and allowing ourselves to be vulnerable, talking about our own personal experiences and speaking that truth to power,” Zieselman told Truthout. “To finally have a concrete result like a major institution like Boston Children’s stating that they will end two of the most harmful surgeries is really just quite amazing.”

Like Adams, Zieselman underwent non-consensual surgery in Massachusetts as a teenager. She later worked for Boston Children’s Hospital as director of government relations before she had an experience that is not unique among intersex people — discovering details about her medical history that had been hidden from her. “It has been heartbreaking to me at a personal level to later learn when I discovered the truth about my own concealed surgery later in life and to realize that, wow, I had been advocating for this hospital that really is trying to protect and care for children around the world yet they still continue to do these harmful surgeries,” she said.

In July, Lurie Children’s Hospital in Chicago apologized to intersex patients harmed by its surgeries. “We empathize with intersex individuals who were harmed by the treatment that they received according to the historic standard of care and we apologize and are truly sorry,” a statement signed by hospital leaders said. Lurie said it would spend six months considering whether its new policy should apply to children with a group of conditions called congenital adrenal hyperplasia (CAH), noting that many patients with CAH do not consider themselves intersex.

In a follow-up statement to Truthout on October 22, Julianne Bardele, a spokesperson for Lurie, said the hospital is in the process of completing the steps it outlined in July, including hiring intersex people for decision-making roles and developing new written materials for parents of intersex children:

While we are awaiting final approval to post these positions (delayed by COVID-related hiring freezes, but firmly supported by senior hospital leadership), we have begun to informally identify potential candidates in order to make this process as efficient as possible. In addition to providing the crucial voices of those with intersex traits and CAH, these job descriptions include responsibilities to plan sensitivity training and create the materials for parents. These individuals will serve on a committee led by an independent ethicist (someone from outside of Lurie Children’s) who will convene a national conference in late winter/early spring to discuss the role of early surgery for individuals with CAH. This ethicist has been identified.

The groundwork for that change began in Boston on this day 24 years ago, when a group of intersex people rallied behind the banner of “Hermaphrodites with Attitude” to protest nonconsensual surgeries outside the American Academy of Pediatrics. The event is recognized as the first major protest by intersex people in the United States.

Inspired by that example, in 2017, Pidgeon Pagonis, Sean Saifa Wall and Lynnell Stephani Long formed Intersex Justice Project. The group took over train cars, lobbied lawmakers, spurred celebrities to promote their campaigns on social media, and launched protests on the sidewalk outside Lurie Children’s Hospital, where Pagonis underwent surgery as a child. Pagonis spoke widely in media interviews and viral YouTube videos about the damage done by their early surgeries, which left them without an external clitoris. Meanwhile, doctors who were sympathetic to the movement advocated their cause inside the institution, and lawmakers like Rep. Kelly Cassidy (D-Illinois) put pressure on Lurie from outside. It was that combination of tactics that brought them the victory at Lurie, Pagonis told Truthout.

“We need these coalitions of activists pushing on the outside, we need legislators getting involved, but also people on the inside of these hospitals to put enough pressure and make enough noise that they cave,” Pagonis said.

Dr. Ellie Kim, a researcher at Lurie, was one of those doctors. Kim got to know Pagonis through the LGBTQIA+ community in Chicago, and was open about her opposition to nonconsensual surgeries. As Intersex Justice Project called attention to the surgeries on social media, Kim and other employees of Lurie advocated for their cause in internal discussions at the hospital. “I really felt the need to really up the ante and just throw some gasoline on the fire and made it really, really clear as loud as I was able to with whatever power position I had,” she said. Her advocacy as a transgender woman is part of a long history of coalition-building between intersex and trans activists. Back in 1996, trans allies from the group Transexual Menace joined the protest in Boston outside the American Academy of Pediatrics Conference, standing with intersex people against surgeries that have, historically, been denied to transgender people who need them, and performed on intersex children who may not.

Kim said the causes are integrally tied. “The core principles are nearly identical if not identical: the idea of declaration of identity, of autonomy, and the ability to determine your own gender — that gender is not something prescribed at birth that is indelible,” she told Truthout. “That core issue is the same, right, that a surgeon is saying at birth, this looks to me, as a surgeon, like a girl, or this looks to me like a boy.”

While intersex activism has existed for decades, the past few years have seen a series of historic victories as the movement has gained greater visibility through public story-telling. The same year that Intersex Justice Project launched, Marissa Adams was featured in a Washington Post magazine cover story by Nora Caplan-Bricker that proclaimed, “The intersex rights movement is ready for its moment.” The following year, California became the first state to pass legislation acknowledging the rights of intersex people, a non-binding resolution that notes how nonconsensual intersex surgeries have been condemned by Human Rights Watch, the World Health Organization and the United Nations Special Rapporteur on Torture. In 2019, the Massachusetts Medical Society helped lay the groundwork for the decision at Boston Children’s Hospital, announcing a policy supporting care of intersex patients that “defers medical or surgical intervention until the child is able to participate in decision making.”

“I feel like what I want people to take away from this is to be inspired that a small group of friends can change the world,” Pagonis told Truthout. “This is a beautiful moment to see the second hospital in a few months take initial steps in ending intersex surgery.”

But Pagonis also said Boston Children’s should go further. Unlike Lurie, the hospital did not apologize to intersex patients. Nor does the statement they emailed to Truthout mention other surgeries, like those used to remove internal testes, or address a condition called hypospadias, where a urethra is located somewhere other than the tip of the penis. Intersex Justice Project has also demanded payment to intersex people harmed by surgeries. “I really believe that these hospitals need to create a reparations fund for patients to get free medical care in the form of therapy or gender-affirming surgeries that they may want or need and also surgeries that they may need to correct what surgeons did to them when they were youth or young people,” Pagonis said.

The Boston Children’s Hospital statement also notes that, “As a result of this change in practice, we recognize and respect that families may decide to seek care elsewhere.” Kyle Knight, who wrote an in-depth report condemning the surgeries for Human Rights Watch, told Truthout that statement is “precisely the reason [Boston Children’s Hospital] should be commended as an inspirational starting point, but not the end. Comprehensive policy change is needed. It shouldn’t be a matter of shopping the market for a surgeon willing to commit a human rights violation.”

While he sees it as an incremental step, Sean Saifa Wall, co-founder of Intersex Justice Project, said he hopes it will lead more people to consider the cause. “I definitely hope that with each victory, with each statement that comes out, with each hospital changing their position, I hope that more people will get curious about why is this such an important issue,” he said. “It’s just so sad there are so many people who have been harmed in the process of these institutions finally recognizing that we shouldn’t do this.”