October 26th is Intersex Awareness Day, the anniversary of the first protest against medical harm to our community in the United States. And we've come a long way since that day in 1996, but I’m still not surprised to hear that many queer allies don’t yet have a solid concept of what exactly it can mean to have an intersex body.
Sex works in many layers. Intersex people’s layers don’t all fit together in the usual ways. Each of us somehow deviated from one of the two usual paths of human sex development, because we’re very creative in that way!
Almost 2% of people worldwide have some type of intersex difference. That means that somehow, something in our genitalia, chromosomes, gonads, internal sex organs, hormone production, hormone response, and/or secondary sex traits developed differently. That also means that you almost certainly know someone who is intersex, whether they’ve told you so or not.
Heavy medicalization of our bodies has kept a lot of us in the dark. It has also created some misconceptions that prevent more intersex people from realizing and celebrating this part of themselves.
Here are some top myths that I hope our queer allies from other letters will help us bust.
1. Intersex people have ‘both’ parts, or are ‘both’ sexes.
The truth is, it’s complicated. Sex is a series of traits on spectrums, and there are many ways human bodies can develop. Having both a penis and vagina is not one of them. I believe that our movement’s definitions over the years have accidentally helped cement this idea. For example, we often use language such as “traits that are not ‘typically male’ or ‘female.’” What does that mean?
“Male” and “female,” in the sense of sex, are common terms describing packages of traits. They are also not trans inclusive when tied to certain ideas about anatomy! A majority of intersex bodies have more minor differences compared to these usual two packages of traits. For example, a person may be born with mostly aligning anatomy, but missing a few parts, such as a uterus or testes.
An intersex person may have aligning internal anatomy, and hormonal differences that cause differences in secondary traits like breast development or facial hair. They may be born with mostly aligning parts, but a difference like a large clitoris or micropenis. This is because the same tissue in humans grows to become either a clitoris or penis.
Depending on hormonal influences, there are also plenty of sizes inbetween. Likewise, the development of the labia vs. scrotum, and vaginal length, are also spectrums. This is usually when doctors want to do surgery to “fix” our natural anatomy.
2. Intersex people all have genital differences at birth, and all have had surgeries.
Not all intersex people have genital differences at birth, not all intersex experiences involve surgery, and not all intersex medical harm is surgical. Many intersex people find out they are intersex by way of hormonal differences as a teen. Plenty of us are put onto hormones or puberty blockers at young ages, based on what some doctors think is appropriately “masculine” or “feminine” development.
Of course, intersex people can have dysphoria too! If someone doesn’t want the hormonal changes their body naturally produces, they must be able to make their own decisions.
3. Intersex people all have nonbinary gender and want third gender ID options.
Intersex people can have any gender. Having an intersex body and a nonbinary gender are often conflated in the media. Some intersex people have nonbinary gender. Some do not. We’re just like any other group in our diversity of expression.
Some counties are beginning to introduce laws allowing for third gender or nonbinary IDs. Sometimes this includes options to register intersex infants as a third option. These kinds of law can be dangerous for intersex people. Being forced by the state into a third category can motivate more intersex surgeries on young children.
Many intersex advocates, myself included, would much rather see the removal of gender markers on ID documents altogether.
4. Intersex people are all feminine or androgynous.
There is very little intersex representation in the media, and most is still created by non-intersex people. Even still, a certain type of intersex person is overrepresented: she is a white, thin, able bodied, slightly androgynous but undeniably feminine woman with a “terrible secret.” This isn’t a coincidence. Often it’s a plot twist.
Intersex status cuts across race, ethnicity, class, and gender, but as we see in movements that do so, those with the most privilege tend to be overrepresented and given larger storytelling platforms. It takes work to push back against this and tell all kinds of intersex stories.
In reality, intersex people come from all backgrounds, and many are masculine and/or assigned a male gender at birth. There is also a dark history behind why we see more feminine intersex people: early surgeons joked about it being the “easier” surgical assignment for infants.
5. All intersex people with a specific medical diagnosis are one gender.
There are over 40 medical diagnosis terms that describe different combinations of intersex traits. Increasingly, some medical groups lobbying against intersex autonomy have attempted to splinter the community by medical diagnosis.
At one legislative hearing, urologists argued that while they might not immediately perform a clitoral “reduction” procedure on an infant with XY chromosomes, they could confidently do so on an infant with XX chromosomes, because chromosomes are an “indicator” of gender, and future women are assumed to all want a small clitoris.
Another common intersex surgery is moving a working urethra, to make it open at the tip of a penis. This highly risky surgery is done out of the assumption that all people with penises will want to pee standing up, whether or not they grow up to be cisgender men. Medicine still carries deeply flawed, not to mention transphobic, assumptions about bodily traits and gender. Intersex people pay the price.
This is evident in who is told they are intersex by medical professionals, and who is not. Those with bodies mostly aligned with one path of development are less likely to hear the word.
6. Intersex people can’t have sex, get pregnant, or have children.
Many intersex variations include mostly typical internal reproductive anatomy. Everyone is different. There are intersex people who can have periods and carry children, and intersex people who can produce sperm. There are some who can’t. There are intersex people who find out they have both ovarian and testicular tissue after having given birth.
Infertility is a very painful part of intersex experience for many people. For some people, disclosing intersex status can often also mean disclosing infertility status or medical trauma. Respect that these are difficult and private conversations.
7. Intersex only affects young people.
The push to surgically “fix” intersex people gained popularity in the 1950’s. Since then, this protocol has created not only traumatized children, but traumatized adults with nowhere to go. While it’s easy to find medical attention for erasing the intersex traits of children, adults with scar tissue, trauma, and hormone management needs are rarely able to find competent and sensitive care, even in trans-competent spaces.
There is a serious need in the community for doctors to treat adults who were intervened upon. Referrals to any providers are usually grassroots and word of mouth, since it’s rare to find acceptable treatment even in large metros.
8. Intersex people don’t belong in the LGBTQIA acronym because we are a ‘medical thing.’
“Depathologization” is a fancy term that means accepting something as a natural human experience, instead of a medical problem to fix. Nowadays, LGB people are for the most part depathologized in mainstream U.S. culture. It is taboo to express the outdated view that being gay is a psychological disorder for doctors to cure. Bans on “conversion therapy” programs for minors are sweeping the country state-by-state.
Conversations about transgender depatholigization are more nuanced. Being transgender itself is of course not a psychological problem to solve. We also need to make sure that trans people can access the affirming care that they need, within the broken and for-profit medical systems that we have today.
Just as being LGB or T is not a mental disorder, having an intersex body is not a physical disorder. Intersex bodies have always complicated the lines between gay and straight relationships, cisgender and transgender existence. To avoid having to think about this, it was always easier for systems to erase us. Medicine labeled us all as disordered. It’s up to us to reclaim ourselves and help others to do the same.
Hans Lindahl is the communications director for interACT: Advocates for Intersex Youth.