"Intersex is a beautiful thing": Despite having surgery forced upon her, this activist found healing

"Anyone who's like, 'Well, I've never met an intersex person,' I can guarantee that you have," says author and advocate Alicia Roth Weigel. "You just didn't know it." To all superficial appearances, Weigel seems like a cisgender woman. Yet when her mother was pregnant with her, the doctors told her to expect a son, because the amnio test showed the presence of XY chromosomes. But Weigel, like millions of other people around the world, was born intersex. And after undergoing surgery for what doctors at the time referred to as a "disorder of sex development," Weigel spent a childhood full of procedures and monitoring — and believing she had to be cautious in how she understood and explained her own body. 

Now, however, she's one of the most visible intersex individuals in America, speaking out against invasive bathroom bills, working to keep the I in LGBTQIA+ from standing for "invisible" and sharing her own story in her cheekily named new memoir "Inverse Cowgirl." 

 The physical sex traits that we're born with from hormones, chromosomes, internal reproductive organs, external genitalia, all of those things are also not always binary," Weigel explained during a recent Salon Talks conversation. "They don't always fit neatly into a male or female box on a birth certificate." Weigel opened up about her "inadvertent" coming out during a Texas legislature senate hearing, what progressives get wrong about allyship and how she got the place where she can say, "I'm now really proud to have this body."

This conversation has been edited and condensed for clarity.

For those who don't know what the term intersex means, tell me about what makes you and millions of other people around the world unique.

Intersex is exactly what it sounds like if you break the word down. We are born intersex, between the sexes. In this day and age, people have started to understand that sexuality is not binary. You're not only gay or straight; there's a whole spectrum in between. Folks are starting to come around to the fact that gender is also not binary. You're not only a man or a woman, there's also a beautiful spectrum in between. What society is just starting to learn is that sex is also not binary. So, the physical sex traits that we're born with from hormones, chromosomes, internal reproductive organs, external genitalia, all of those things are also not always binary. They don't always fit neatly into a male or female box on a birth certificate. 

For me, what that meant is I have XY chromosomes, which many people associate with being a boy. But I was also born with a vagina. Instead of having a uterus and ovaries on the inside, I was born with internal testes. If sex is a spectrum, my body was born a little bit closer to the center of that spectrum. I have aspects of both. People don't understand how common that is. We are around 2% of the world's population, the same percentage of the world that is born with red hair or green eyes. Anyone who's watching this like, "Well, I've never met an intersex person," I can guarantee that you have and you just didn't know it. 

Perhaps they didn't know it because unfortunately, a lot of intersex people undergo surgeries without our consent either in infancy or in our childhood that push our bodies one direction or the other. They try to force our bodies to fit into those binary boxes on that very first piece of paper that parents receive when you're born, a birth certificate. What we are advocating for as a community is rather than force-altering a body to fit on a piece of paper, you could just change the piece of paper. We exist; our bodies are born this way. We are not mythical, legendary creatures. We are certainly not monsters. We are human beings just like the rest of y'all. The first step is really raising visibility of our community and our existence in general. That's what I hope my book will be a part of doing.

You talk very candidly about what you went through — the gonadectomy, the monitoring and the observation that you had to go through your entire childhood. This is not uncommon, and people don't realize that this is happening to millions of people around the world. Tell me about how your family was told you had a "disorder."

Intersex is the term that we prefer as a community because it doesn't pathologize us, it doesn't refer to us as a problem. Prior, we had been referred to as having "disorders of sex development," or DSDs. The issue with that terminology is it in[plies] that there is an issue with how we are born that needs to be fixed. My body was fully functional when I was born. The reason that I look the way I do, that I present so femme outwardly is because despite the fact I was born with testes, my body does not absorb testosterone. My testes would've produced testosterone, but my body would have urinated some of that out, and the rest would have converted to estrogen. I would've developed totally naturally on my own. 

The doctors told my parents that I could get testicular cancer and they recommended removing my testes. If you put yourself in my parents' position and you have a newborn baby and you're hearing your child could get cancer, of course you're going to do whatever is in your power to prevent that from happening. Unfortunately, that was not the full scenario. That message was not inaccurate in that I could have gotten testicular cancer, but anyone who is born with testicles could also get testicular cancer. What the real picture shows is that as someone with complete androgen insensitivity syndrome, which is my intersex variation, my risk of getting testicular cancer was only somewhere between one and 5% — at some point, much farther down the line in adulthood. This cancer never happens in childhood. 

By removing my testes for some theoretical future, very small risk of cancer, that also put my body into hormone withdrawal because they were taking my hormone producing organs that my body needed to function properly. That has necessitated that I take hormone replacement therapy, similar to what transgender individuals take, but not to affirm any gender presentation purely because my body needs hormones to survive. All of our bodies need hormones to survive. Hormones determine a lot more than your cup size or your facial hair or the tenor of your voice. They affect a lot of your internal bodily functions. By removing my testes in infancy and forcing my body into hormone withdrawal, that was leeching calcium from my bones. I found out in my early 30s that I now have osteoporosis, which is something that you think of usually with post-menopausal women or older, elderly individuals. That's very common for intersex individuals because they were trying to fix something that wasn't broken in the first place, they created problems for me.

That is one piece of what I experienced as a kid, the medical, physical fallout from my surgery. In addition to, and honestly more impactful in my life, is the psychological and the emotional harm of being told that you are inherently a problem because of how you're born and that you should never tell anyone because you'll be made fun of and you'll never find a good husband one day. The way that you internalize that as a kid is like, "OK, I'm inherently [un]lovable simply for existing." So intersex people, we end up creating this whole facade, this whole story, this lie that we tell to people because there's so much stigma surrounding our bodies that we don't want anyone to ever find out that this is how we're born.

I know this is also common, I've talked to a lot of my intersex friends about this. A lot of us who date men, at some point, we have to tell them we're not going to be able to bear their children. A lot of us have told these people that we had childhood ovarian cancer and they removed our ovaries and so we are infertile. Because of this weird, incomplete information that doctors feed to our parents and all this homophobia and transphobia that conditions us to believe that we're not lovable if we actually shared the truth of who we are and the truth about our bodies, we end up concocting this crazy lie that we were walking around with childhood cancer. 

Our main argument is there's nothing inherently wrong with us in the first place. We're all born with bodies, each and every one of us. Anyone who's listening to this conversation is born with a body. Why should we be conditioned to feel so much shame simply for being born into the body that we were born into?

I have reached a point where I'm now really proud to have this body and I want to help other intersex people who were born the way I was, not have to spend so many years of their lives as I did living in this deep closet where they're feeling shameful simply for existing. Intersex is a beautiful thing, and I hope that's something that comes across in my book.

In your book, you call out those of us on the side of the aisle who think of ourselves as progressive. You call out certain aspects of the LGBTQIA+ community for not recognizing, not welcoming, not including because the intersex community might be "confusing," that it might muddle the waters in some ways to advocate for this really significant population. I want to ask you about that, about that ignorance or misplaced advocacy that you've seen from people who one would expect to be your allies.

In this current climate with rampant attacks on the transgender community, there is certain messaging used by the left that unintentionally might harm the intersex community. For example, when we're fighting these bans on transgender care for trans kids, there is this message that's often touted that, "Oh, surgeries don't happen on children. This only happens on adults." 

It is true that gender-affirming surgeries do not happen on trans children, but they do happen on intersex children without our consent. Whether they be vaginoplasty or gonadectomies or all of these surgeries that transgender people might elect to have with their consent at some point as lifesaving care to help them affirm their existence, those same exact procedures are often forced on intersex kids who are not only not old enough to participate in that decision making. Most of the time, we're not even old enough to speak.

To sterilize me as an individual, before I'm old enough to form words, obviously, I am not a consensual participant in that conversation. The World Health Organization, the United Nations, all of these multinational organizations, they define these surgeries as torture. They call it intersex genital mutilation. A lot of the advocacy community has caught up, but unfortunately, here in the United States, I would say the LGBTQI+ community has not quite caught up. I think it's because when we come in and start advocating for our rights and for our needs by saying, "Hey, we need a seat at the table. We should not do surgeries on children without their consent," there's this fear that that muddles this message surrounding transgender children. 

I want to make this very clear to folks: the same bills that target transgender kids and say, "Don't offer gender-affirming care to transgender kids" all contain specific written loopholes that say you can continue to force the same care on intersex kids who have not asked for it. What this shows is that the legislation is not based in science, it's not based in logic, it's not based in what's healthiest for children, which is what they're claiming is the root of this legislation. The root of this legislation is trying to force children into what a certain swath of society deems normal. They don't think trans kids are normal, so they say, block this care from them that they desperately need in order to survive. They also don't think intersex kids are normal, so they say, force those same procedures onto intersex kids so that they look more normal to us, so that we can be more comfortable looking at their bodies. And so really, it's the same exact fight that we're fighting. It's just a little bit of a shift in messaging, which is all about people being able to make decisions for themselves surrounding their bodies in a way that keeps them healthy and happy. I really don't think it muddles the message. It just requires us to massage that message a little bit and learn about a new community that has gone completely unheard in the shadows for far too long.

This is a healthcare issue that doesn't just affect intersex people. It affects their parents, partners and families. You talk in this book about how difficult it has been for you to get care, how you have put yourself out there, as you put it, a "long-term guinea pig" for what intersex procedures have done to people over time. This is something that I think a lot of us don't necessarily think about is that someone living in an intersex body needs specific care, and how difficult in our American healthcare system it is to get that care. What can we do to change that?

If you see the film about my work in the intersex movement "Every Body," you'll see it centers on the surgeries that we experience non-consensually as children.That makes a lot of sense because when people hear about it, I think they're alarmed. It brings them into our cause and helps them understand the urgency of the fight that we are fighting. Unfortunately, something that's not talked about enough, but is equally dire of a situation is the utter lack of intersex-competent care for intersex adults. We already have a lack of competent care for intersex children. That care is focused on hiding who we are, not keeping our bodies healthy. That being said, at least there are some doctors and clinics that specialize in care for intersex children. But once you hit 18, once you age out of pediatrics, you're left completely high and dry. There's just nothing. 

There are a few providers across the United States who have seen enough intersex patients that even if they don't claim to be experts, they will say, "Hey, I've treated enough patients that I can help you." I have run surveys with intersex individuals across this country, and in Texas, we have found that intersex individuals have to travel at minimum 50 miles to find doctors who have any idea what their bodies might need. Most of them have to access via telehealth. There's one individual that we spoke to who literally flies to Japan simply to see a doctor who has any idea what her body needs. So in light of all of this, I partnered with a group here in Texas called Texas Health Action who run Kind Clinics across the State of Texas. These are LGBTQI+ affirming clinics that offer everything from STI testing to gender-affirming care for trans folks to HIV care.

I helped them develop an intersex care offering because while our bodies have a lot of overlap with the trans community – in terms of what we need, in terms of, for example, hormone replacement therapy – there are also some really unique features such as bone density issues like with my osteoporosis. I worked with Texas Health Action. We created a specific intersex healthcare offering for intersex Texans that we just launched on Sept. 1. First and foremost, I want Texans to know this is available, so you should check out Kind Clinic and you can finally find a doctor who is able to meet your needs. 

I don't want this to be the only intersex clinic in the country, I want this to be the first of many. I want to see LGBT clinics across the country. I want to see sexual health and wellness clinics across the country, and I want to see women's health clinics because a lot of intersex people are women. I want to see all of these clinics updating their standards of care, their standard operating procedures to better serve the intersex community, and I am here to work with any of those clinics who would like to learn how to do that.

Not everyone has had to go through what you've had to go through, but all of us have a moment in our lives where we have to be honest, and we have to be brave, and there may be something really painful on the other side of that. Maybe it's just, "I need to be true to myself and I need to tell the world who I am." How did you do it and how do you offer a message of maybe a little hope and support? 

I actually did this backwards. I became so wrapped up in the attacks on my transgender friends that I ended up coming out inadvertently in a Senate hearing at the Texas legislature for the first time. Only after coming out in that hearing to try to protect my transgender friends, did I process what that would mean for my life to be out as an intersex individual, what that would mean for my family relationships, for my friendships, and just for me in terms of understanding myself and my identity and how I operate in the world. 

It was only after I came out very publicly as an advocate that I really started doing the internal work to process and learn to really love myself, to unlearn everything I had been told about myself and truly learn who I am, not who I've been told to be, not who society has deemed to be normal or appropriate, who I really am as an individual. 

There have been many things that have assisted me in that process. Definitely talk therapy, definitely the use of certain plant medicines and fungi. I am really heartened to see the conversations and actually a bipartisan effort by Dan Crenshaw who's a Republican legislator here in Texas with AOC who's about as far on the opposite side of the aisle as you can think of from Dan Crenshaw. But they have joined forces to fight for FDA trials on the use of psilocybin to treat PTSD, which is what's found in mushrooms, and that has been hugely instrumental in my own journey. Everything from plant medicine to talk therapy, to movement, learning how to move my body through running and yoga in a way that helps me feel really strong and powerful and at peace with myself has been really instrumental in my journey. And forging real, honest relationships with people who know and love the full me.

That was probably the hardest piece. Whenever any of us needs to own who we are in a way that we fear might drastically alter our relationships in our lives, which are arguably the most important thing to any of us, it can be really scary. I won't sugarcoat it ,and I'll say that sometimes relationships do fall by the wayside. But those relationships were based on false pretenses. They were not loving who that person really is as a person. What ultimately made me decide to come out was the decision that I wanted to be loved because of who I was, not in spite of who I was. I didn't want to have to apologize for my existence anymore when my existence is not hurting anybody else, and it's not an issue in the first place.

I hope people will read the book because it's a long and complicated journey. But I do think beyond the politics, beyond the healthcare, beyond the issues of body autonomy and all the other things that this book speaks to, above all, I think this is a book about healing. From the first page to the last page, it really shows all the different ways that I have found healing and I have found peace and contentment in myself and that I have learned to love myself. I hope that those lessons might benefit anyone, intersex or not.