“Intersex (per InterACT) is an umbrella term for differences in sex traits or reproductive anatomy. People are born with these differences or develop them at a young age. Genitalia, hormones, internal anatomy, or chromosomes can develop in many ways. The problem is, children’s bodies are often changed for them because of shame and stigma. This includes surgeries to create a vagina, reduce a clitoris, move a urethra, or remove testes. Most surgeries happen before the age of two. [InterACT has] worked with many of the world’s top human rights organizations. All agree: surgeries to change sex traits must be the individual’s choice.
I’ve shared my story often as an intersex person, from the car crash before I was born that led to my parents’ discovery that I am intersex to when I first came out in front of the Texas legislature at age 27. I’ve also shared experiences from my adolescence and some stories that led me to make the decision to go public about my identity in the first place.
But there’s a big gap in between when I was born and my teenage years that I’ve spoken about only in broad strokes—feelings, emotions—because, to be honest, a lot of my childhood is pretty hazy. I’ve heard this is common for trauma survivors; with PTSD, there are a lot of memory gaps and timelines or the order of events get confusing. Plus, when you’ve been fed the story of how you should present yourself to society by a bunch of doctors, it’s hard to pinpoint what actually happened vs. what you’ve been led to believe.
Dredging up the details of my early years is an important resurrection for me. Bringing to life a lot of what’s been pushed deep into a vault—or tomb, if you will—will help solidify who I actually am, as I own my true narrative as opposed to the one created for me or what I told to myself and others since I was a preteen. Hopefully this rebirth will be cleansing, healing, but it’s gonna be a bit messy, so please bear with me.
Let’s start at the beginning, or before the beginning, when my mom was still pregnant with me. As the story goes, my parents were in a car crash while I was still in the womb and were ecstatic the pregnancy was not terminated in the process. An amniocentesis test the doctors performed afterwards showed I had XY chromosomes—so walls were painted blue, gender specific gifts purchased, and everyone in the delivery room was shocked when I entered the world with a vagina.
I was supposed to be named Charles after my father, his father and my mother’s father—even my mom was named Charlene, a more feminine version of the family name. I guess this was the first time I’d break tradition and forge my own path. They hadn’t picked out any ‘girl’ names, so in a game-time decision, my dad mentioned he’d always liked the name Alicia since they weathered the storm when they lived in Texas, a few hours from where I now reside. So yes, I’m indirectly named after a hurricane—and let’s just say, the shoe fits.
Once my name was decided, a lot of other life-altering decisions followed soon after. Because of the discrepancy between the chromosomes they knew I have (XY) and my genitalia from what’s typically expected, they knew I was intersex—although the term was never used at the hospital and I wouldn’t even hear it for the first time until a quarter-century later. Testing revealed I was born with internal testes instead of ovaries, and in addition to the aforementioned differences in my sex development, my parents were told I had Complete Androgen Insensitivity. Pathological terms like these are used to frame our unique traits as ‘disorders,’ a scare tactic which gives doctor’s leverage to pressure parents into medically unnecessary interventions on our bodies without our consent—like what would happen to me soon after.
The crazy thing is, had my parents not gotten in a car crash that led to the amniocentesis test, my parents wouldn’t have found out I wasn’t your typical XX female until I didn’t get my period a decade later. But as they were aware since birth, actions were immediately taken to normalize me and raise me within the purported ‘sex binary’ which fits easier on a birth certificate. Doctors told my parents their infant child could get cancer in my testes one day—which is true, by the way, for literally any human born with testes—and urged them to consider a gonadectomy to remove my testes. A subsequent hernia repair gave them the opportunity to execute this surgery before I turned one year old; I was forcibly sterilized, or in simpler terms, castrated.
In doing so, they took the hormone-producing organs that would have led my natural development, not just sexually but as a human being. Being insensitive to androgens, or what most consider ‘male’ hormones, my body would have naturally converted the testosterone produced by my testes into estrogen (a pretty cool super-power, if you ask me). Unfortunately, by robbing me of this natural development, I’d have to go on Hormone Replacement Therapy later in life—frequently discussed in the context of transgender individuals—to induce puberty but also to retain normal bodily functions influenced by hormones, of which there are many.
Between when they took my testes and when we induced puberty at the cusp of my teenage years is when things get really confusing. Hormones have a massive affect on memory, or the lack thereof, as anyone’s experienced menopause can attest—so in the absence of regular hormonal release, I actually experienced some phenomena well-known to middle-aged women, but as a child.
I remember having hot flashes, trouble sleeping, and depression as early as the age of 5; my parents attribute all this to a recurring, undetected bout of strep throat, but after hearing the shared experience of other intersex folks like me, I now know this was much bigger than a simple bacterial infection. I do have memories of my mom doing the best she could to counteract these negative effects—letting me watch Flipper in her bed at 4 a.m. on nights when she had to work early the next morning, sending me into school with ‘bravery donuts’ only to receive calls I’d have to be picked up and taken home a few hours later—the list goes on. I don’t blame my parents, who always acted on what they were told would keep me safe and healthy; I do blame a toxic societal stigmatization of intersex identities that compels doctors to make decisions that are in fact the opposite of do-no-harm.
My next memories of being intersex are in fifth grade, when two kids made fun of me for having a deeper voice and saying I sounded like a boy—a natural rasp that, thankfully, men have found very sexy when I got older. My mom said she was also stopped in the grocery store once by a fellow parent admonishing that ‘secondhand smoke kills,’ after assuming my raspy voice was resultant of a bad habit my parents never partook in. The thing is, though, these same kids also made fun of my shiny blue Saucony sneakers for being weird (I loved them!). Kids make fun of others for being different in any capacity; the solution is to raise our kids to respect others and diversity of thought, existence, and presentation—not to operate that diversity out of existence. And as for the parents who approached my mom, a healthy dose of mind-your-own-business, or simply live-and-let-live, does the trick.
My being intersex continued to shape many life experiences, like the most traumatic period for most folks: junior high. I remember when I was in middle school, we were separated by gender before all of our sex ed classes. I’d go with the girls, and they’d start talking about our periods — which I’d never get, and about the experience of having a baby — which I’d never have. The shame and isolation I felt led me to such an extreme state of anxiety. In hindsight, I now know these to have been full-fledged panic attacks (ex. when I passed out in the classroom). I started carrying around tampons, which I’d never need, to reinforce the lie that I was in fact ‘normal’ whenever a friend asked for one.
Fast forward to high school and my first serious boyfriend, when I had to break the news I couldn’t have his kids. This was long before I was comfortable saying I’m intersex—or had even heard the word to explain my life condition. I explained it in a different way. I said I was genetically unable to have kids, completely avoiding the fact it’s because I have XY chromosomes or didn’t have a uterus and ovaries, out of fear I’d scare him off. Of my serious boyfriends I’ve had in the past, one of them was fine with it, loved me regardless and was willing to make this work. But one of them ultimately wasn’t. All my friends would tell me, and I’d tell myself, if anyone can’t accept me for who I am and work within the confines of who I am as a person, then they’re not worth my time and love anyway, but it can be tough to believe. And wouldn’t it be great if we could share these experiences with other folks who experience infertility, rather than having to suffer in silence?
Speaking of hurting alone, punctuated throughout all these experiences were frequent doctor visits, the hardest and most painful memories to dredge up. One of them, we chose the cup size that would best fit my frame and make me a ‘beautiful woman.’ Quite a few of them furnishing me with and teaching me how to use a dilator, to prepare my blind-end vagina (i.e. not leading to reproductive organs) for penetrative sex with what doctors assumed would be someone with a penis one day. And even at least one where I was put under anesthesia—also dangerous for the development of young brains—to be ‘observed’ by doctors, like an animal in a zoo. The closest analogy I can come to the feeling was my triggered response to Eleven’s storyline in the popular show Stranger Things…feeling like a lab rat is not a common child experience, and certainly not a fun one to have to go through alone.
All of these experiences share a common thread of feeling like a freak and going through it in isolation. These feelings were so strong, they kept me living in secrecy for 27 of my now 30 years, until I broke the silence—another story for another time. Here I focus on my childhood to raise awareness of our community, and the violations we face, so other kids might have it better than I did. If we educate all people about the beautiful diversity of our humanity, including intersex folks, from an early age, then intersex children can grow up feeling unique rather than ashamed; special, not stigmatized. As I write this today on Easter, I’m reminded that Jesus in fact believed all human beings to be created in the image of kid—intersex kids, too.”
This story was submitted to Love What Matters by Alicia Roth Weigel of Austin, TX. You can follow their journey on Instagram. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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