Centering LGBTQIA+ Black, Indigenous, and people of color, Prism’s Gender Justice for Liberation series draws from current events and lived experiences to explore the roots of today’s most urgent issues and oppressions, and highlight how we are reimagining a world transformed by gender justice and all of its joy, abundance, community, diversity, and promise.
CW: this article explores issues around medical violence, human rights abuses, and trauma
On Oct. 26, 1996, a group of intersex activists protested the annual American Academy for Pediatrics conference in Boston. They spoke out against the decades of inhumane treatment of intersex patients, including the common practice of subjecting infants to cosmetic genital surgery to “correct” visible differences in the development of their external sex characteristics.
They gathered under a banner that read, “Hermaphrodites with Attitude.” Intersex activists had reappropriated the term “hermaphrodite,” now largely considered a slur, into a symbol of defiance and reclamation. Accompanied by members of the transgender rights activist group Transexual Menace, these brave forerunners of the intersex justice movement remained and spent the day educating nurses, surgeons, social workers, and any others who would stop and listen to their message: that medically unnecessary surgeries on intersex youth were harmful, immoral, and needed to end immediately.
Nearly a decade later, this event would be commemorated in 2004 by activists Emi Koyama and Betsy Driver, who are both credited with founding Intersex Awareness Day.
Something to cure
Individuals born with differences or variations in the expression of their sex characteristics are not uncommon. Studies show that upward of 1.7% of the population is born with these differences, and approximately 1 in 2,000 is born with visible differences in the presentation of genitalia.
Many people born with these somatic differences identify use the word “intersex” to describe their variation; others, however, might use different language, such as having a difference of sex development, physical variation, or even medical condition. These differences can vary in composition: people who are intersex might have differences in the structure of their internal reproductive system, endocrine cycles, or chromosomal expression. Many of these differences are benign in nature, with very few exceptions.
While the conversation around this language is hardly set in stone, it is clear that the paradigm informing the clinical management of people born with differences in their sex characteristics throughout the 20th century and into the 21st was by and large harmful. For this paradigm to take shape in the first place, intersex existence had to first be thought of as a disease and, thus, something to cure.
The clinical practices developed in the mid-20th century to “treat” intersex individuals were largely rooted in the idea that people were born “psychosexually neutral.” A researcher named John Money posited that human beings were born as a sort of blank slate and their sense of gender developed over time based on how they were raised. This idea became pervasive throughout the nascent academic fields of gender, sexuality, and human development.
An infant’s sex assignment would trigger the child’s parents and other adults in the child’s life to treat that child a certain way, thus shepherding them down distinct cultural pathways that would teach them how to behave “appropriately” in an excessively gendered society. In other words, the child would acquire a gender identity based on how the adults in their life treated them.
These practices were motivated by an overemphasis on the sex binary; researchers sought to identify the origins of “true sex” and justify the existence of the biological sex binary.
A troubling history
Intersex children would prove to be the testing ground for many of these theories: Infants of “ambiguous sex” were and continue to be operated on so their bodies conform to social expectations; oftentimes, children undergo multiple surgeries as their bodies grow to maintain the appearance of their original procedure. Vaginas are surgically constructed, clitorises removed or reduced in size, hormones prescribed, and testes removed. Providers promote secrecy, telling parents that if their child knows that they were born intersex it might jeopardize their work and the child’s sense of self. This practice has also been motivated by the idea that the child’s outward sex characteristics needed to “match” the gender assigned at birth. Providers opted for irreversible cosmetic surgeries to ensure this outcome.
In general, clinicians have been motivated by the seemingly altruistic idea that they were helping children by “treating” their condition, assuming that their bodily differences would make their lives and the lives of their families more challenging in the long run. These differences would prove to threaten heteronormative society while simultaneously challenging many of the assumptions underpinning the social order that privileges heterosexuality.
For decades, intersex children grew up under medical surveillance that monitored their behaviors and personalities. For example, children who grew up to be gay or trans were understood as “diagnostic failures” by their doctors because their goal in “treating” intersex children was to render straight cisgender adults through hormonal and surgical interventions. Homosexuality, after all, was considered a mental disorder for almost a century before being depathologized in 1973. Meanwhile, being transgender is still understood as a psychological issue that is addressed through medical intervention.
Sugeons continue to operate on intersex children to this day, and very few longitudinal studies have examined long-term satisfaction and psychosexual well-being of individuals who have undergone these procedures. We do know, however, that surgery creates scar tissue, and repeated surgery only generates more scarring, which can ultimately affect appearance, sexual function, fertility, urinary function, and sensation.
Pelvic exams have also been named an integral part of the treatment model. People who are intersex are often subjected to excessive examinations, some of which may be medically unnecessary. A report published in 2017 by Human Rights Watch dedicates an entire section to the damaging effects that excessive genital examinations have on the well-being of intersex youth, which can lead to intersex adults avoiding health care.
More and more work has also been done to explore the effects that medicalization has on mental health. A study published in 2020 found that an alarming 61% of people with variations or differences of sex characteristics reported experiencing depression, the highest of any LGBTQIA+ group.
Policy shifts and progress
These practices went largely unquestioned for decades, resulting in generations of intersex people born into a world that was hostile toward their very existence. But dissent would inevitably coalesce in the early ’90s.
The Intersex Society of North America (ISNA) was founded in 1993 by a small group of intersex activists whose primary goal was to end the inhumane treatment of intersex persons in medical and social settings. In time, ISNA would go on to develop documents that would shed a light on the harms experienced by intersex persons and radically reform health care practices. Three years later, founding members of this organization would go on to lead the protest in Boston that would crystalize the mission of an entire movement and mark a distinct shift in attitudes around intersex health care management among health care professionals.
In 2006, ISNA published two documents that sought to offer clinicians and parents clear guidance on how to work with and care for people with differences of sex characteristics. These documents were produced in collaboration with pediatric endocrinologists, bioethicists, nurses, sociologists, advocates, and intersex people. The providers themselves felt that the state of intersex care needed a major overhaul: one provider was motivated by her firsthand experience navigating these outdated systems because she was the mother of an intersex daughter.
Since the October 1996 conference and protest, multiple physicians have come out in support of the intersex justice movement, advocating for reforms that uplift the voices and autonomy of their patients.
In recent years, various medical professional associations have released public statements affirming health care practices that center the needs of intersex youth. In 2017, three former surgeons general of the U.S. published an article advocating for the cessation of cosmetic genital surgery. Then, in 2018, the American Academy of Family Physicians released a statement declaring formal opposition to the practice of medically unnecessary genital surgery on intersex infants. Policy statements, however, are only half the battle against institutionalized harm.
The New York City Health and Hospitals system instituted a policy that would delay medically unnecessary cosmetic surgeries on intersex infants until the child is old enough to participate in the decision-making process. Two other individual hospitals, Boston Children’s Hospital and Lurie Children’s Hospital in Chicago, have also embraced intersex-affirming health care practices by instituting policies that would delay medically unnecessary cosmetic surgeries until the child is old enough to meaningfully participate in the decision-making process—with Lurie’s going so far as to issue a formal apology.
These actions from leading pediatric and general hospital systems have been long awaited and hard fought and have established a functional policy framework that can and should be adopted by other health care networks. Pressure from activists and advocacy groups ultimately resulted in concrete actions from these institutions: the Intersex Justice Project, for example, spent years petitioning hospitals to reform their care practices.
Advancements in human rights protections for intersex people have also taken place at the legislative level in the U.S. The Department of Education is currently seeking to update its anti-discrimination policy that protects youth from harassment and discrimination to include protections not just based on sex and gender, but sex characteristics as well. The Biden Administration has also taken steps to acknowledge the rights of intersex people. In early 2021, the White House released a memo stating that all federal agencies involved in foreign service must promote and protect the human rights of LGBTQIA+ individuals and specifically named intersex people in the memo’s language. Later that year, the U.S. Department of State recognized Intersex Awareness Day and voiced a commitment to ending violence and discrimination on the basis of “sex characteristics.”
This work has not been without backlash; the Human Rights Campaign reports that more than 300 anti-LGBTQIA+ bills were introduced nationwide this year alone. To make matters more complicated, the generalized conflation between being intersex and being trans means that anti-trans legislation almost always affects people who are intersex. Whereas intersex pertains to the physical variation in the development of an individual’s sex traits, being trans reflects an individual’s personal identity and gender. Someone who is intersex could be trans, or they could be cisgender.
In August, Rep. Marjorie Taylor Greene introduced a bill that seeks to criminalize providers who perform gender-affirming care. The bill goes on to list a series of surgeries that are common aspects of gender-affirming care, many of which are generally not even options available to transgender youth. Unsurprisingly, the bill makes specific exemptions for individuals born with “verifiable disorder[s] of sex development”—an unabashed use of stigmatizing and regressive language.
On the other hand, California recently signed into law the Transgender and Intersex Inclusive Care Act, which would require health care providers and administrators to undergo educational training to ensure cultural competency and compassionate care for gender-diverse and intersex individuals. This mandate would extend to insurance companies as well. At the federal level, the Department of Health and Human Services proposed a rule that would overtly protect intersex people from discrimination within federally funded health programs.
The sustained efforts made by intersex community organizations, outstanding individual activists, health care providers, and policymakers are slowly bringing about a reality in the U.S. that pushes the needle toward equitable change. For a community that has experienced decades of medical violence, that change looks like redistributing power in a way that ensures the individual’s right to agency, autonomy, and self-determination.
