11 Living in an Intersex Body
Anonymous
My body has hair.
Of course there’s the hair on top of my head, my feminine crown, that I spend hundreds of dollars dying, cutting, washing, restoring, maintaining. That’s the good hair. There’s also the bad hair.
Just inches south of my cherished hair is my most reviled hair: my beard. This is the hair that fills me with dread, contempt, confusion, self-doubt, and anxiety. Will anyone see it today? Will they take a second look, trying to figure out if what they thought they saw is really there? Will he feel it when he touches me? Will it make him want to stop?
I spend hours trying to achieve the female body. I shave everywhere. Everything. But it always comes back. Sometimes I’ll find a new hair poking out of my skin like it’s being expelled by my disdain. It shows up unannounced, leaving me to wonder how long it’s been there and who may have seen it. Did he notice it? Did he feel it? Did it register in his mind, a reminder that I’m different, that my body is different, that he must make alterations in his definition of sexy to accommodate my body?
I live my life in an intersex body. Categorized by society, my driver’s license, and first glances as female, my body exists in between. I was 20 when I was diagnosed with Polycystic Ovarian Syndrome (PCOS), an extremely common endocrine disorder. My body makes more testosterone than considered normal, enough to increase my risk of certain cancers, decrease my fertility, and cultivate the dreaded hair amongst other symptoms.
This is not the experience of all intersex people. There are many ways to have an intersex body. Intersex is a term that describes individuals who are born with ambiguous sexual characteristics that do not fit within typical male or female definitions. This can include differences in chromosomes, hormones, and genitalia. Intersex individuals face unique challenges throughout their lives, including the medicalization of their bodies, psychological distress, and stigma and discrimination from society.
One of the most significant challenges faced by intersex individuals is the medicalization of their bodies. Often, intersex infants undergo genital surgeries shortly after birth to make their genitalia conform to typical male or female standards (Karkazis, 2010). These surgeries are often carried out without the informed consent of the individual or their parents and can have serious long-term consequences, including loss of sensation, difficulty with sexual function, and negative impacts on mental health (Karkazis, 2010). Additionally, there is growing evidence that these surgeries are not necessary and do not lead to better outcomes for intersex individuals (Horowicz, 2017). In fact, many intersex individuals report feeling violated and traumatized by these surgeries and the medical system that enforces them.
One intersex advocacy group, InterACT (@Interact_adv on Instagram) features intersex individuals’ lived experiences and their causes. They fight for an end to unnecessary corrective surgeries at birth, better medical care, and more awareness of these issues. One of these advocates, Sean Saifa Wall, recently gave an interview with NPR. He described his surgery this way:
“Essentially, I referred to it as a castration… I wish that someone would have asked me what I wanted to do. I wish someone would have explained to me in the language that I can understand at the time of being a 13-year-old child. This is what’s happening with your body. (Macaluso, 2023)”
The medicalization of intersex bodies is rooted in the idea that there are only two sexes and that any deviation from this binary must be corrected. This approach is harmful to intersex individuals and ignores the complexity and diversity of human biology. The medicalization of intersex bodies also perpetuates the idea that intersex individuals are abnormal and need to be fixed, which contributes to their stigmatization and discrimination in society (Karkazis, 2010).
Growing up intersex can be a challenging and isolating experience. Intersex individuals often face stigma and discrimination from society, as well as from their own families and healthcare providers. Many intersex individuals report feeling like they do not belong in either the male or female binary, leading to a sense of confusion and distress (Diamond & Garland, 2014).
I was very lucky to find my PCOS doctor, an extremely knowledgeable and empathetic professional. But many are not so privileged. In 2017 I created a facebook group called Qpcos in an effort to find more people like me: queer people with PCOS. Surely I couldn’t be the only person grappling with the symptoms of PCOS and the medical community that sought to reshape my body into a more recognizably female product. I was right. Soon there were over 1000 people in the group sharing tips and resources on how to live with a different body. The group is made up of all types of queer identities including cisgender women, nonbinary people, transgender men, lesbians, bisexuals, pansexuals, etc. Some embrace the symptoms, growing their beards and chest hair out proudly. Others compare laser hair removal experiences and favorite razor brands. Some of the most heartbreaking posts concern fertility. Some folks are trying to conceive, seeking answers to balance their hormones and become pregnant against the odds. Some, conversely, are sick of being treated as baby-making machines despite their natural infertile chemistry.
Research has shown that the psychological impact of growing up intersex can be significant. Intersex individuals are more likely to experience anxiety, depression, and post-traumatic stress disorder than the general population (Diamond & Garland, 2014). This is likely due to the stigmatization and discrimination that they face, as well as the trauma associated with medical interventions (Karkazis, 2010).
I remember as a child looking at the other girls and wondering why my body didn’t seem to work as easily or perfectly as theirs. Why were my periods so debilitatingly painful? Why was I tired all the time, especially after eating? Why does my body pack on weight so easily, yet still crave more and more food? I know now that the increased testosterone and insulin-resistance caused by PCOS made my body function differently. As an adult I’ve learned to live with my body in balance, to support its needs in ways that are healthy, and try to forgive the criticism I’ve hurled at myself.
As is also true for the transgender community, this is a challenging time for many intersex people. Across the US legislators are proposing regulations that will limit intersex children’s access to sports and other opportunities. The binary understanding of biology and sex is limited and inaccurate. In her book, Sexing the Body: Gender Politics and the Construction of Sexuality, Dr. Anne Fausto-Sterling explains that labeling a person as male or female is a social decision. It is not rooted in a biological reality (2020).
The medicalization and problematizing of intersex bodies became a larger part of the mainstream discussion in the mid-20th Century by western scientists like Dr. John Money (Fausto-Sterling, 2020). Dr. Money said that intersex children were, “unusual in some aspect of their physiology, not that they constitute(d) a category other than male or female.” In other words, intersex children were biological mistakes that needed to be corrected by medical intervention. This view ignores the possibility that biological diversity can exist without threat to the individual or decreased quality of life. Only when we impose colonialist notions of gender binary do we require intersex people to mold themselves against nature.
Dr. Fausto-Sterling imagines a new approach that doesn’t seek to coerce people into predetermined categories, but instead values the idea of gender variability. This, she asserts, “permits ambiguity to thrive” and moves us away from the harmful binary (2020, p.101).
Today I will take a shower and shave my beard for the umpteenth time. I’ve tried tweezing… too painful and time consuming. I’ve tried laser hair removal… didn’t work and the tech tried to give me unsolicited weight loss and medical advice. So instead I shave, preserving my female gender euphoria for another day. The hair on my thighs grows darker and fuller, the hair on my head wanes thinner and grayer. The testosterone coursing through my body remains unchecked. In the 15 years since my diagnosis my body has changed, but my mind has changed even more. Now I’m aware of my distinct privilege in mostly being perceived as a cisgender woman. Not to mention my white, able-bodied, and straight-passing privilege as well. My awareness has expanded to understand the complexity of gender, biology, autonomy, and who gets to decide who we are. I don’t know whether I’ll reach full radical acceptance of my body as defined by Sonya Renee Taylor in her 2018 book The Body Is Not An Apology. She says, “Radical self-love is not a destination you are trying to get to; it is who you already are.” There is no more work to be done. It is who you already are. I’ll deal with the challenges of my hormones for the rest of my life, but I’ll never resent my body in the same way.
Discussion Questions
What makes a woman a woman? What makes a man a man? How did you first learn these definitions?
How do you maintain your gender identity? What is your daily gender maintenance routine?
Have you ever been accused of not being manly enough, or womanly enough? Have you accused someone else? How would you feel if you no longer fit into your current gender identity?
How do you challenge your current perceived gender identity? In what ways do you not fit in?
What, if any, are the benefits of recognizing gender? What, if any, are the challenges of recognizing gender?
How have systems or institutions impacted your understanding of gender? If you haven’t experienced this, how might you in the future?
Is your gender identity important to you? Why or why not?
References
Diamond, M., & Garland, J. (2014). Evidence regarding cosmetic and medically unnecessary surgery on infants. Journal of Pediatric Endocrinology and Metabolism, 27(5-6), 427-433.
Fausto-Sterling, A. (2020). Sexing the body: Gender politics and the construction of Sexuality. Basic Books.
Horowicz, E. M. (2017). Intersex children: Who are we really treating? Medical Law International, 17(3), 183–218. https://doi.org/10.1177/0968533217726109
Karkazis, K. (2010). Fixing sex: Intersex, medical authority, and lived experience. Duke University Press.
Macaluso, J. (2023, April 11). Where gender-affirming care for youth is banned, intersex surgery may be allowed. NPR. Retrieved April 14, 2023, from https://www.npr.org/2023/04/11/1169194792/some-states-that-ban-gender-affirming-care-for-trans-youth-allow-intersex-surger
Taylor, S. R. (2021). The body is not an apology. Berrett-Koehler Publishers.
