In our brave new world of social media, safe spaces and Caitlyn Jenner, it’s easy to forget that there are still thousands of voices being silenced. How could there be? We’re queerer than ever, trans visibility is at its highest in history, and gay marriage is steadily becoming a globally – and legally – accepted norm. The internet has blessed us with bigger platforms and amplified our voices, meaning that many minority groups are now finally being given a chance to share their stories.
Of course, it hasn’t really worked out that way. Despite younger generations generally being more progressive and accepting (only 48 per cent of Americans aged between 13 to 20 claim to be completely straight), there are still countless groups being left out of our conversations. The most glaringly obvious of these – given our current obsession with binary norms and gender-fluidity – is intersex people.
The term ‘intersex’ isn’t a widely used one. More commonly (and wrongly) referred to as hermaphroditism, it describes people whose sexual anatomy falls between the classic boundaries of male and female. It covers a raft of conditions, ranging from the external (ambiguous genitalia, micropenises, enlarged clitorises) to the internal (hormone imbalances and missing organs). In many scenarios, the symptoms are so varied that science is still too stumped to give them a diagnosis.
Despite these conditions seeming singular, they’re actually surprisingly common: with one in every 2,000 of us being classified, in some way, as intersex. So why aren’t the experiences being discussed more widely? And why is there still such a strong sense of shame and secrecy surrounding the symptoms? “Many doctors encouraged me to keep silent about being intersex,” explains Amanda, who was diagnosed with Partial Androgen Insensitivity Syndrome (PAIS) at the age of 13. “They said it for my own well being. To a degree, I understand that. The world is hostile to intersex bodies.”
Because our society is hard-wired into viewing these conditions as negative, Amanda’s experiences are no anomaly. More often than not, every effort is made to ‘correct’ these slight biological differences at birth – with babies being subjected to irreversible surgeries that can, in some cases, echo the brutality of genital mutilation. Consequently, when you talk to intersex people about the things that need to change, acceptance and visibility are always top of the list. “Intersex bodies are the epicentre of so much violence,” continues Amanda. “This violence is embedded in our medical institutions; the protocols, determined decades ago, continue to have an unprecedented hold on how physicians ‘treat’ intersex bodies. Change is happening, to be sure, progress is occurring, but at a pace that is simply not fast enough.”
Unfortunately, thanks to North America’s growing right-wing conservatism and anti-LGBTQ legislation (see: North Carolina’s ‘Bathroom Bill’ and Mississippi’s ‘religious liberty’ law), this pace seems to be slower than ever. In an attempt to stop it coming to a total standstill, we caught up with three intersex 20-somethings to hear their side of the story.
HANN, 24, CALIFORNIA
“I was born with gonadal dysgenesis, which is a fancy way of saying that some of my reproductive parts never formed. My body doesn’t naturally produce oestrogen or testosterone. Externally I look female, although I have no ovaries and XY chromosomes. The gonads are the organs that, depending on hormonal influences, turn into ovaries or testes in the womb. Mine never developed either way.
I found out about my condition at about 15, since it was taking too long for puberty to start. Without ovaries, it never did. I was an awkward child (a pre-teen goth) and this didn’t help at all. I started hormone therapy because I wanted to be feminine, and because without ovaries to produce oestrogen, my bone health was in jeopardy. I started puberty at 16, working up to higher dosages of hormone patches normally (reserved) for menopausal women. I went in the opposite direction. Now I just take regular birth control pills for the hormones.
I’ve thought about gender binaries a lot, whether or not I identify as queer or non-binary. I’m intersex, and I don’t always feel like just ‘female’ alone describes me. I’m straight and cisgender, so I don’t know if I belong under ‘queer’. My presentation and orientation fit in with what most people would think of as ‘female’, even if my body doesn’t. Right now I usually say I'm an ‘intersex woman’ or ‘intersex female’. The entire experience is something that is a part of my life, though it isn’t always at the top of my mind. It’s a bigger part of some people’s lives than others. I love being intersex. I’ve always thought it was my own special quirk, even when I first found out.
Society needs to learn to separate sex, gender, and sexual orientation. Everyone will be a lot happier and healthier for it. We need to understand each of the three to allow everyone to be themselves, wherever they fall on each spectrum. My advice for other young intersex people? You are unique, and that’s amazing. You’re not alone. Intersex people aren’t rare, they’re just invisible. That’s changing. Find other intersex people. They will love you and support you no matter what.”
“The diagnosis put a lot of things in perspective... Why was I experiencing same-gender attraction? Why did I feel averse towards becoming a woman ‘when I grew up’?”
AMANDA, 21, WASHINGTON
“My diagnosis was, for a while, Partial Androgen Insensitivity Syndrome, but since reading my medical records and speaking more with my doctors on the subject, it turns out that the diagnosis wasn’t definitive. If anything, it was more of a placeholder because I don’t have the specific genetic markers that warrant a diagnosis. What I do know with certainty is that I was born with XY chromosomes, undeveloped testes, and lacked a uterus and a fully formed vagina. The hormone receptors in my body also don’t fully respond to testosterone, which is why I didn’t develop entirely into a typically male body while I was busy gestating. I don’t get periods, and I can’t carry a child. At this point, it’s hardly a big deal but there was a point in my life where I grieved not being able to have children that were biologically mine.
When I started going through puberty at around age 12, I noticed that I wasn’t unfolding in the ways that I was taught to expect. I had a massive growth spurt, my voice dropped, and my face was pocked with acne – and, much to my dismay, my hips and chest remained boyish.
I was eventually diagnosed with PAIS when I was 13. My mother had taken me to see our family doctor because I had shown her two lumps that were gently protruding from my lower abdomen. I went in, he examined me, and then ordered a host of blood tests and an ultrasound. I was so confused and had no idea what was going on. In January of that same year, under the encouragement of many medical professionals, I underwent a surgery to remove ‘potentially cancerous’ gonads from my body.
The diagnosis put a lot of things in perspective and explained a lot of the questions that were rattling around in my young head. Why was I experiencing same-gender attraction? Why did I feel averse towards becoming a woman ‘when I grew up’? I remember the anxiety that kept me up at night whenever I thought about having to become a woman – I was ten years old, so I didn’t think I had another choice.
I was, for a very long time, very self-conscious about having an intersex body, so there was a lot of anxiety surrounding intimacy because of that. I continue to have apprehensions about my body, and being touched is something that continues to frighten me, no matter how much I might crave it. Being a medical subject has left me with scars, both literal and psychological, and sometimes I find that I react unexpectedly to touch – a vestige of being a young and vulnerable patient.
Seeing people within the intersex and queer communities live authentically as themselves has overwhelmed me. By simply being, they are actively changing the social landscape; their brave existences are both radical and a source of inspiration. They gave me the courage to accept this about myself; to be non-binary was, I think, something that I had always wanted but had no idea how to go about doing it.”
KAT, 23, GEORGIA
“I have Complete Androgen Insensitivity Syndrome. Basically, I have XY chromosomes with a typical female appearance, but no internal female sex organs. I had internal testes, but they were removed at birth because my doctors thought I’d be better off without them. This is stupid because I have to be on HRT for most of my life now, but I deal with what I got.
I found out I was different physically at a very young age. When I was seven my mom explained that I couldn’t have children, but my chromosomes were never really discussed. A few years later I found out my testes had been removed when I was a baby, but everyone referred to them as ovaries and I was told they had been removed because they were underdeveloped and likely cancerous. It was all hard to hear, and in my tweens I didn’t want to learn anything about AIS since it was a major trigger for my depression. I was in denial for a really long time. Even though I had been seeing doctors for this for most of my life, none of them had ever used the word intersex or told me about having XY chromosomes. I actually found that part out on my own at 17, when I was doing research on Wikipedia. Not exactly the best way to learn something like that. It took me a few more years to really come to terms with being intersex and embrace it as part of who I am.
Living in the deep south, the environment is very religious and conservative. Once, in my college sociology class, we were talking about gender across cultures and, being that I was finally open about being intersex, I decided to voice my personal experience. It seemed to go over well until a few girls came up to me after class to tell me that intersex people are just a byproduct of the fall of man and that I am tainted by Satan and bound for hell. It wasn’t so much the statement that affected me, because I don’t believe that, but their vehemence and hatred was so palpable. I found it hard to believe that people I have never interacted with in any way other than sharing a class would form such a strong opinion of my worth as a person based on my chromosomes.
For years and years, I avoided dating. I was so sure that no one would ever want to be with me because of how I was born that I just pushed away most potential relationships before they began. The few relationships I did try to pursue didn’t fare well. I was so closed off and just very much not ready to be there for another person until I had dealt with my shit. Nowadays, it doesn’t affect things as much. I find that when I don’t let it be a huge deal, they usually won’t either.
Young intersex people need to know that – even if things may seem overwhelming and you think you can’t handle all of this – you are strong and you are not alone. We are out here and we love you. Find us, find your tribe.”
All interviews have been edited and condensed. You can find out more about intersex conditions, or help raise awareness, with the interACT youth campaign here.