Before I was born, my parents decided that they would name me Megan. Yet, on the day of my birth, the obstetrician who delivered me jokingly told them that I “didn’t look like a Megan”; heeding the doctor’s casual advice, my parents instead opted to give me a name often considered to be gender neutral: “Kendall.”
Ironically, over a decade later, I discovered that I really am not what most high school biology teachers tell their students a cisgendered woman is. While most people assigned female at birth possess two X chromosomes, a genetic test revealed that I have just one. This chromosomal variation is called Turner syndrome, and is typically treated by medical professionals with — to name just one intervention — hormone replacement therapy to induce “female” pubertal development and growth beyond the average Turner syndrome adult height of 4’7”.
For a long time, because it was described to me as such, I referred to and conceptualized my Turner syndrome as a “disease” — and to be clear, there certainly are health risks associated with having just one X chromosome. So are there, however, for being born with two Xs, or an X and a Y. So are there for being born with fair skin, or having natural night-owl tendencies — yet, we do not call these traits “diseases.” The language we use to describe and categorize biological phenomena greatly affects how we interact with them; when these phenomena involve real people’s lives, the consequences of labeling certain traits — certain bodies — “deviant” can be dire.
When I first learned about the label “intersex,” an umbrella term for those whose reproductive organs, chromosomes, hormone levels, or other biological characteristics don’t fit within the strict male/female binary, so much of my life began to make sense. For years, doctors had discussed my body in comparison to those of “normal” (cisgendered) girls. The goal was always to make my body look and work as close to these girls’ bodies as possible — but why, and at what cost?
Because of experiences with pathologization, some people like myself with Turner syndrome and other chromosomal, genetic, hormonal, and sex organ variations choose to identify as intersex, in prideful opposition to the idea that one’s body must fit within the confines of “male” or “female.” While many assume us intersex people are outliers, over 1 in 100 people are actually born with what could be classified as interesex variations — that’s about as common as being born a twin, or with red hair.
While the silly comments about my name made by my doctor following my delivery were harmless — I love having an androgynous name — many intersex babies whose anatomical features differ from the sex binary are subjected to dangerous, medically uncessesary, life-altering surgeries. These surgeries aim to align their bodies with features typical of either “boys” or “girls,” before they are old enough to be involved in the decision-making process themselves. As an intersex person who feels fortunate they were not forced to undergo such operations, I feel the need to to amplify the voices of those more marginalized within this community, who have a simple message: Let intersex kids be.
In an interview with the HPR, Sean Saifa Wall, for example, says he got involved in intersex activism out of necessity. “I was a part of the trans community,” he explains, “…at the time, there wasn’t a lot of intersex activism [withnin the LGBTQ+ community], and the intersex activists were predomidantly White. It was hard for me to relate to them.” So, in 2017, Wall founded the Intersex Justice Project, with the goal of highlighting connections between the fight for intersex justice and various other movements focused on bodily autonomy and integrity, such as the disability justice movement and Black queer liberation. “I live for a day,” says Wall, “when innocent people are not pathologized, when the variations in our bodies are seen as normal and treated with respect.”
In 2020, the largest study to date on intersex people in the United States was published in PLOS One, and the results were alarming: Of the 179 intersex people examined, about 1 in 4 reported an income below $20,000 a year, an unusually high number had been diagnosed with depression and/or anxiety, nearly 32% reported having attemped suicide, and 43% described their overall health as “fair or poor” — compared to just 17.7% in the at-large population. Many of the study participants had been subjected to non-consensual surgeries as infants, and the health disparities experienced by the intersex population are believed to be related to the adverse outcomes of those surgeries.
While many who defend genital-“normalizing” surgeries argue that they benefit children and their families by preventing inferred body and/or gender dysphoria and psychosocial distress, no evidence supports these claims. In fact, the effects of such surgeries often prove to be, themselves, stigmatizing, and are almost universally traumatizing — so much so that in 2013, the United Nations’ Special Rapporteur’s report on Torture urged nations to outlaw them.
Fortunately, many within the medical realm are beginning to listen to intersex activists who speak out against the dangers of these life-changing, medically unnecessary operations on minors unable to consent to them. In October 2020, Boston Children’s Hospital, a Harvard teaching hospital and the largest children’s hospital in the state of Massachusetts, became the second hospital in the United States to ban clitoral and vaginal surgeries on intersex infants, following a similar decision by Chicago’s Lurie Children’s hospital earlier that year. More recently, in July 2021, New York City Health & Hospitals — the largest public healthcare sytem in the United States — placed a ban on “all medically unnecessary surgery on Intersex [children] … until the child is of an age to assent/consent.” Yet, meanwhile, in my home state of California, a bill aiming to ban surgeries on intersex children until they are at least 12 years old and can partake in the decision-making process themselves was stalled in committee for the third year in a row, as its author says proposed amendments would exclude many intersex children from protections.
It is relieving to see powerful institutions and organizations beginning to recognize the harm intersex individuals have been experiencing and pointing out for years. The steps taken so far to mitigate this harm will prevent countless intersex kids from having to endure the emotional and physical pain exprienced by so many who lived to tell their tales today, but they are only a start. It is important to recognize that the violence medical institutions have inflicted upon intersex people is just one instance within a long history of pathologizing traits deemed “deviant” by those in power; homosexuality, for example, was categorized as a “mental disorder” in the diagnostic and statistical manual of mental disorders until the mid-1970s.
As Wall says, “This work feels like it’s in vain sometimes. We’re confronting an establishment that’s very well-funded and very unaccountable. But [fighting for intersex rights] is so vital. 50 or 100 years from now, there will hopefully be a brilliant community of intersex people who will not have experienced any interventions — people who will be very proud and grateful of those who came before them and took a stand.”
