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In this op-ed, Maddie Rose explains why intersex people need education free from misogyny, homophobia, and transphobia to fully consent to surgery.
I remember a few things about the weeks after getting surgery to create a vagina: a lot of Rice Krispies cereal, watching shows in my hotel room about people who had won the lottery, and my dad helping me to and from the bathroom for bandage changes. There was also nausea, Ambien nightmares, and heaps of pain. I remember far better the ER visits, and moving back in with my parents after getting very sick in the months following.
What I don’t remember is, at any point prior to the surgery, being told I didn’t really need it.
I wasn’t lied to. I was given the exact thing you are supposed to give a patient — choices. Still, like many intersex people, I underwent invasive surgery to change my body without fully understanding my options. It's not that I wasn't told the surgery wasn't medically necessary — I was. But it’s not enough to be told a surgery isn’t medically necessary if the implication is that it’s socially, sexually, and biologically important to be “fixed.” Consenting to intersex surgery requires freedom from those societal ideals. Instead, I felt backed into a corner by homophobia, misogyny, and transphobia. If I’d known at the time that both sex and bodies can look like so many varied, wonderful things, would I have still made the decision I did?
I have Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome — a rare condition in which parts of the reproductive system begin to develop in utero, but don’t fully form. Some people with MRKH identify as intersex, others identify as women.
My personal diagnosis looked like a series of several tests and unanswered questions before I was confidently told I wouldn’t be able to have sex — at least not until I fixed the “problem” through vaginal dilation or surgery. Doctors suggested I wait until I wanted to have sex before making a decision. Dilation can be a painful daily process that can take a long time to see results, and I’d have to book the specialized surgery way out in advance. When I mentioned that it could take me years to be able to physically have sex after I decided I wanted the surgery because of the length of the process, I got shrugs. Doing nothing didn’t seem like an option, so I started dilation that day, whether or not I was ready.
Many elective intersex surgeries are performed without consent. While intersex conditions are now recognized as common enough to be unremarkable (somewhere between 1-2% of the population), infants are still frequently operated on at birth to create “typical” looking genitals. Medically unnecessary intersex surgeries violate the bodily autonomy of children who may grow up with altered genitals from irreversible surgeries, frequently accompanied by infertility. There’s push now by activists to ban these surgeries at birth, and force doctors and parents to let intersex people make their own decisions as consenting adults.
As someone who was a consenting almost-adult, I know that’s not good enough. Our world is one of misogynistic, heteronormative, and just plain outdated expectations around sex. People can’t freely consent to decisions with only that information to work with. We must be consenting and fully informed adults who are given a complete range of choices, free from societal pressures to conform bodies to rigid sexual and gender expectations.
Being told I wouldn’t be able to have sex until I was “fixed” felt devastating. Systemic misogyny claims that the value of women, and people perceived as women, lies in sexual availability to men. I was frightened that not being able to have penetrative sex meant I wasn’t date-able. For many intersex people, that feeling of worthlessness around sexual availability can fuel difficult decisions.
Sex education that narrowly defined sex as “when the penis goes inside the vagina” — a narrative that was seemingly reinforced by the doctors who told me I wouldn’t be able to have sex when they meant I wouldn’t be able to experience vaginal penetration — meant my education was both misinformed and homophobic. Saying that only penetrative sex is “real” sex ignores the alternative kinds of sex people have been having for forever. Gay people, people with conditions like erectile dysfunction or vaginismus, and probably whoever first invented the vibrator all frequently skip penetration.
I also experienced a healthy dose of transphobia during the process of my diagnosis. On one early doctor’s visit, I peed in cups, had blood drawn, and sat through ultrasounds in silence. After, I was told: "So, you have parts missing. You're missing your vaginal canal. And your uterus. And an ovary. But don't worry, we tested your chromosomes: you're still definitely a girl."
The notion that having XX chromosomes or a uterus is what makes someone a woman is the same backwards logic used by transphobes to reduce women to their genitalia, without wondering if womanhood could mean something so much more. Desperate at the time to be a “real” woman, and to escape the looming thoughts in the back of my mind that I maybe wasn't, I craved the ability to “fix” myself immediately.
After months of dilation with no progress, I decided to undergo surgery after a series of near-sexual encounters from which I fled. It was just before my surgery when I was given a form to sign that I saw the text detailing other options, but it felt too late to reconsider.
The surgery was extremely painful, and I had stomach complications long after. I was bedridden for several weeks, and I had to drop out of my campus housing to get care at home. The intended surgery results were good aside from my scars, but at a heavy cost to my ability to thrive.
With an informed queer-positive sex education my decisions may have been different. Nearly a decade later I know that sex looks like so many different things, so it's not true that I would never have been able to have sex. Penetration isn’t at all necessary — hands, mouths and toys are more than enough to create a fulfilling sex life. Queer people have known this for all of history, but never learned it from a class. Maybe my doctors meant to say “you can’t have penetrative sex without treatment.” But even as an openly bisexual 17 year old, all I’d learned about sex in public school involved penetration.
Additionally, thorough education for doctors on intersex and unique genital conditions, and a consent-focused approach to interacting with young patients is necessary. Imagine if there were extensive literature to distribute, maybe even written by intersex people, and community resources to talk to. Conversations about sex in all its various forms, and the knowledge that genitals don’t equate to maleness or femaleness, could make a world of difference for intersex children.
Imagine a world in which every person on the planet knows about intersex conditions and isn’t afraid of them. Imagine walking into the bedroom with someone without preconceived notions about what their junk looks like, and just talking to see what they’re into and what their body can do. That’s the world that I finally get to live in now that I have embraced being intersex and transgender: one where we can just enjoy the messiness that is sex.
Intersex and transgender people are judged by cisgender standards and expected to conform our bodies accordingly, fulfilling the cisgender dream world where sex can happen predictably and wordlessly. Until the world can break from that hold, we will always be forced to offer an explanation for ourselves before we take off our clothes. Intersex people require freedom from the social demands of what sex, bodies and gender should look like, so that our bodies can be sculpted by us and us alone.
