Intersex Activist Alicia Roth Weigel is Fighting for the ‘I’

Of all the letters that encompass the LGBTQI congregate, perhaps the least understood, on the most basic, general level, is the “I.”

Sure most LGBTQ people are aware of the term “intersex,” and recently our ever-expanding rainbow flag has incorporated a circle within its design, calling out, with the equivalent of a vibrant, triumphant shout, the intersex community’s bold purple and yellow colors. But there is also a frequent misconception that the intersex community and the transgender community are pretty much one and the same. While there is often crossover they are distinct.

An illuminating, magnificent new documentary, Every Body, distributed by Focus Features, hopes to reconcile that lack of understanding. The film, which had a limited run in theaters over the past few weeks and will soon make a broader move to streaming and VOD, is a gripping, deeply involving, and richly illuminating introduction to the intersex community.

It sheds light on some of the greatest issues facing intersex people, as well as the nuances and complexities of their individual situations. In general, however, the commonalities are focused on with laser-sharp veracity. Lack of choice. Traumatic sense of shame. The inability to find one’s footing in an American society dominated by the rigid — and false — notion that there are only two gender imperatives: Male and female, no further discussion, please.

“It is possible to be a biological female and have testes,” says Dr. Katherine Dalke, part of NIH’s Sexual and Gender Minority Research Group, and herself a member of the intersex community, in the film. “It is possible to be a biological male and have a uterus.”

Alicia Roth Weigel, one of the movie’s principal, charismatic three subjects — along with River Gallo and Sean Saifa Wall — defines intersex with streamlined clarity during a recent Zoom conversation.

“It just means that you’re born with a body that doesn’t fit neatly into that male or female box on a birth certificate,” she says. “Sometimes it can be your chromosomes, your hormones, your external anatomy, your internal reproductive organs. You’re born with some sort of physical traits that don’t align super neatly with a male or female box. So you might have a lot of typically ‘female’ traits and then some male traits.

“For me,” she continues, “I have XY [male] chromosomes, but I also have a vagina. It’s just breaking that notion that the male and female boxes on our birth certificate are reality — when the reality is really way more diverse than that.”

“You can’t use this word unless you use it in the full phrase that I’m giving you,” says Julie Cohen, Every Body‘s director. “Alicia is relentless in the best possible way. When she’s fighting for something, she is not giving up. She will just keep at it with just a sense of fun and spirit, but just a seriousness of purpose. She is not messing around.

“I think part of it — like with the other people in the film and the other sort of leaders among intersex activism –- has to do with their childhood experiences,” she continues. “If you’re in a situation where you feel like you aren’t being advocated for, you sort of learn to advocate for yourself. And if you’re a strong person, which the people in the film all are strong people, you’re going to start advocating for yourself and others. But just if no one else is fighting the fight for you, you’re going to fight the fight for yourself. And that’s what Alicia does.

“Also, by her own description, she was compensating for struggles with her own self-esteem. Because there was so much shame surrounding being intersex for her and because she really was told like, ‘You don’t really want to share this information, that is not going to go well for you.’ So because she kind of internalized that message as there’s something wrong with you, she wanted to prove herself very hard. She really struggled to prove herself. So the way that she was going to do that is like, ‘Oh, what if I’m the best at school, do a zillion different extracurricular activities and athletic events?’ She becomes a superstar student, a superstar athlete, beautiful naturally, but going to trouble to always look her best. She was just trying to convince herself that she had self-worth when that was a little bit of doubt because she felt so pained about being intersex.”

Cohen is the acclaimed and accomplished documentarian who, frequently with directing partner Betsy West, has made some of the most popular and powerful documentaries of our times, including the Oscar-nominated RBG, My Name Is Pauli Murray, Julia, and Gabby Giffords Won’t Back Down.

Every Body is a solo outing for the filmmaker, but the stamp of her prior work is woven throughout the piece, the way in which a topic is explored with humanity, intense depth, and wide-eyed accessibility. Every Body is a steady stream of poignancy and profound purpose, as it not only explores the plight, but the fight, of the intersex community.

“We all felt very safe with Julie from the beginning,” says Weigel, who uses the pronouns she/they. “It also helps that she has such an amazing track record of producing these incredible films in the realm of gender equity and political activism. But she also just very much put us all at ease personally as well. Now we all refer to her as Auntie Julie. She’s become an auntie to us.”

Cohen hopes the movie helps to shed light on a community that is, in its own way, starting to emerge into its own within the LGBTQ spectrum.

“This is an issue where I think the bulk of our audience is starting out from a baseline of really minimal knowledge,” she says. “It left us having to be, I think, a little more expositional than you would normally be in a documentary.”

The understanding — and cultural impact — of the intersex community is slowly changing in society, thanks to efforts from the 33-year-old Texan Weigel. Every Body‘s focus is only on one aspect of the intersex community’s fight — that of the medical community’s rush to surgical judgment and fixes, pressuring parents that there is something dramatically wrong with their children that needs to be immediately fixed.

Ironically, some of the very same surgeries and hormonal therapies performed on intersex infants and children are the same procedures several Republican-led states are attempting to deny — or have, in some instances, successfully denied — to transgender minors and adults, even as those same bills contain “exceptions” for procedures to force an intersex child to fit inside the gender binary.

It’s an alarming double standard, but one that, with illumination, may help to eventually abate the hypocrisy and transphobia running rampant in GOP legislatures and latently lurking behind the assumptions and biases of society at large.

“Some of the harshest, most meanest, worst anti-gay, anti-trans, and anti-intersex — to the extent that people are thinking about intersex people at all — some of the worst behavior is really just the last gasp of the side that’s losing the battle,” says Cohen, providing a portal of hope for the future. “Younger people are much more open to an expanded view of gender. Even younger conservatives are much more likely to support gay rights than their parents were. The notion that some kids are trans and some kids are non-binary and some kids are intersex is making more sense to younger people who are hearing this.”

Weigel is, understandably, more circumspect.

“I think it was Maya Angelou who said ‘learn better, do better,’ and that’s how we can progress as a society,” she says. “It’s really when people dig their feet in and entrench themselves in what is wrong, purely out of a desire to be right, then that’s not helping anyone.”

METRO WEEKLY: Watching Every Body, I shamefully realized that, over the years, we’ve done very little coverage of the intersex community at the magazine.

ALICIA ROTH WEIGEL: Not just you. Pretty much everybody.

MW: I felt guilty after watching it and thought we have to do more as a publication and as a community. And Every Body is a great starting point to learn more. Intersex is a topic that, even within the LGBTQ community at large, isn’t fully grasped by everybody. So how do we change that? Let’s start there. What needs to be done to start the wheels of change so the rest of the community understands what’s at stake for the Intersex community?

WEIGEL: Honestly, I mean, I think watching this film is a good start because there is very little generalized awareness and there’s a lot of overlap with the rest of the community. There’s also a lot of stuff that is specific to the intersex community that is hard to spell out in however many characters are allowed in a tweet.

And so, what I love about the movie is that it really paints the full picture in a way that we haven’t been able to, both in our online activism or even when I’m speaking at a rally. Having a full hour and a half to not only explain technically what intersex means, but then to show what it means. Because I think when people hear about us, maybe they’re like, “Well, why does that even fall within the queer spectrum?”

MW: Why does it?

WEIGEL: I think there are many ways. So we have a lot of overlap with the trans community and many of us are on hormone replacement therapy. Many intersex people are trans because they were shoved into the wrong box via surgeries as a kid, and then have to transition to the gender that actually aligns with who they are later in life. So there’s a ton of overlap with the trans community, but also with the queer community, because we are raised in the midst of so much shame that many of us don’t come out until later in life.

I would say the stigma and shame actually go quite a bit deeper because, with a gay or lesbian or bi person, or even a trans person, you don’t know that about their identity until they can self-identify at some point. But with intersex kids, you often know from the moment they’re born, because sometimes it’s externally visible.

When that happens, the shame and stigma starts from day one. What I like to say is we’re buried even deeper in the closet. We’re buried not only by society, but we’re often buried by doctors as well. Doctors, I think, tend to be really revered in society and people look to them as infallible, which — as we know, there’s bigotry and bias in any type of human, in any sort of profession, doctors included.

So, yeah, I think watching the film is a really good place to start. Then from there, follow the stars in the film [on social media], because we often are posting about other intersex organizations and intersex individuals. By following us on an ongoing basis, they can continue to learn rather than this movie just being a one-and-done situation.

MW: It’s interesting how you bring up shame and hiding. When I think about it, that’s a binding force in the LGBTQ community. All of us, at some point, are hiding something, we’re ashamed of something. That’s our bond, really, as a community.

WEIGEL: Well, I think our bond is that we have all chosen to free ourselves of that. I mean, there are people who might be gay in terms of their persuasion or might be trans, but not out. But I think the binding force between all of us who identify with the community is that we have all made the choice to free ourselves of that shame and stigma and claim our identity with pride.

MW: You just gave me a whoa moment. That was a great answer. There are gay men who complain about the trans community and, to a lesser extent, the intersex community, saying, “This is what’s keeping us from getting rights, this is holding us back, this part of the community. Why does the ‘T’ have to be there? Why does the ‘I’ have to be there?” How do you respond to that kind of statement?

WEIGEL: I think that when certain communities start to advance in terms of claiming their rights, there’s a natural inclination many people have to then pull up the ladder behind them. I think it’s all driven by a scarcity mindset. People are afraid that if we include more people or more voices or more issues, we will confuse people or it will detract from our own ability to gain rights. I just severely and strongly disagree with that because I think, if anything, the more people that we pull into our community — the greater numbers we have and the more of a united front that we are — the more angles we have to support our community.

So, for example, since you brought up gay men, or gay folks in general, feeling that sentiment — the gay community has had to fight conversion therapy. We do as well, as intersex people. Rather than using psychologists or electric shocks, our conversion therapy is surgeons using scalpels to try to convert our identity out of us.

And so, I think the more that we can really lean into our commonalities, the more we are able to speak for one another. Then we’re not in these individual silos, because those who seek to oppress us benefit from us being divided because it’s easier to conquer us. The more of us that there are who are all parroting the same messages, the harder we are to ignore and the harder it is to speak against us.

MW: I think it’s also internalized homophobia.

WEIGEL: Totally.

MW: The people who say these things just seem to have dug their heels in even deeper over the years.

WEIGEL: All of our issues feed one another. So, for example, there are a lot of people, conservative people or bigots or whatever, that don’t want to accept any facet of our community, any of the letters. I honestly think that when gay or trans people fight for us, they’re not only fighting for us, but they’re fighting for themselves because the intersex issue — I have found this living in Texas, a very red state — can sometimes be an entry point for people. Because with us, we have physical differences that you cannot deny. You can see it in our bodies. And for some people, seeing is believing.

If I’m able to say to someone, “Well, I am born with physical traits that are in between male and female,” they’re like, “Okay, yes, we can’t deny that.” I’m like, “So if I’m born with physical traits that are in between, and your brain is also a physical part of your body, how would it then not extend — that if someone is born with physical body parts that are in between — that they might also feel internally in between?” Then they’re like, “Well, yeah, that makes a lot of sense.”

I think there are examples like that between all of the different letters. I think people look at allyship the wrong way, like it’s a favor to people, when really they need to understand that if we all learn enough about each other’s issues to where we can speak proficiently to them, then we’re all actually assisting one another. It’s in our own self-benefit to speak for one another.

MW: There are so many variations within the intersex community, the scope is so large. It feels very complex.

WEIGEL: Only if you are looking through the lens of medicine. Our community has been defined by medicine, and that’s part of what we’re trying to move away from. Just like being gay used to be considered a disorder — they used to try to treat people out of it. Then they were able to de-pathologize the gay community and be like, “It’s not a disorder. It’s just a way of being.”

Then the same thing had to happen with the trans community. Being trans was considered a disorder until much, much, much more recently, where within the past few years, it was removed from the DSM [Diagnostic and Statistical Manual of Mental Disorders], which is the book that defines psychological disorders. By de-pathologizing it, by moving it out of the medical realm, then it enables it to become an identity.

With us, we are doing the same thing. We have been defined by medicine as having disorders of sex development [DSD]. But for a lot of us, there’s nothing actually wrong with us. We have fully functional bodies — they just happen to be a bit different. So, we, for that reason, are really trying to de-pathologize our community to be like, “No, this isn’t a disorder.” Because when it’s not a disorder, it becomes an identity that you can claim with pride, and that makes it easier for people to find one another.

When you de-pathologize intersex and you focus less on all the individual variations, you focus on really what it means, which is, in a nutshell, that sex, as we define it by physical traits, is a spectrum, just like sexuality and just like gender identity. Just like some people are not fully gay or straight, they’re somewhere in between, some people don’t identify as a man or a woman, they’re somewhere in between, it’s the same with us as intersex people.

I think what reinforces that it’s a spectrum is that even non-intersex people also have sex traits on that spectrum. Some men that are not intersex can grow a lot of facial hair and some men can’t grow any facial hair. Some non-intersex women have big breasts and some women have small breasts. Any trait that exists, exists on a spectrum.

Once you pull it out of the medical terminology and you think about what the word means, which is intersex, it just means between the sexes. All we’re trying to say is that the boxes aren’t as rigid as you think they are. A lot of people like to tell you that the two rigid poles are the only options, when there are millions of people around the world who prove that that’s not true.

MW: One thing the intersex community seems to be fighting for are people who haven’t been born yet, or who are newly born intersex but then who have choice imposed upon them. You’re fighting for their right to make their own choice.

WEIGEL: That’s why I also fight for abortion rights and I also fight against sexual assault. I am for sex work and against human trafficking, because the most important thing that exists in life is choice. If you don’t have choice, then you’re a slave to circumstance. We all deserve choice. We’re not saying that intersex people should never get surgery. We’re just saying that they should have a choice in the matter. Everyone should have choice and autonomy over their own decision-making. Otherwise we don’t have freedom.

MW: What do you feel is the right age for someone to make that choice?

WEIGEL: I don’t know if I can put an exact age on it, and I would honestly think it might differ country by country or society by society, because a lot of places around the world are different in terms of how they raise people on maturity levels.

So I don’t want to put a hard and fast cutoff on it, but I think that just by doing this cultural work that we’re doing helps people understand that delay is okay. I don’t know what exact age it’s going to be, but there’s going to be an age where that person is able to be like, “Hey, I know what I want for myself,” and that is the right age, whatever that age may be.

So I don’t want to restrict anything to a specific age cutoff. I think it’s more like it certainly should not be infancy because infants can’t even speak words, let alone be part of a decision-making conversation. I think just this idea that delay is okay, and having these conversations with your kid from the beginning of “This isn’t something you need to be ashamed of. This is just how you’re born and we celebrate you and we love you.”

If you’re raising a kid like that, rather than “This is something we have to hide and suppress,” then that kid is going to be able to make a better-informed decision much earlier than they would if they’re like me, and didn’t even know there were other people like them until they’re 26 years old.

MW: It seems like it’s going to take time, because it’s a trickle-down, isn’t it? It has to funnel to the parents from the medical community who have to say, “Look, this is the way your child was born. What we recommend is that you wait until here. They’re not in any medical danger. This could be performed when they’re 10 or 16 or whenever.” Unless there is something medically urgent about it.

WEIGEL: Exactly. Exactly.

MW: It’s ironic, and the movie points this out. I mean basically they’re passing laws that are disallowing gender assignment surgery for adults, and yet they’re just —

WEIGEL: They’re doing the exact same thing on intersex children without consent.

MW: How screwed up is that?

WEIGEL: Well, it just shows that they’re lying, that they don’t think that they’re actually protecting anyone, like they claim. They have called these gender-affirming surgeries and puberty blockers and hormones — they’ve referred to them as child abuse and Nazi war crimes. It’s like, “Well, if you really think it’s child abuse and Nazi war crimes, why are you okay with forcing that on certain children?”

MW: You were already an activist, but did you have any doubts about doing the film?

WEIGEL: I didn’t have any doubts about working with Julie. I was actually supposed to make a different film a few years prior with a different, really well-known journalist who has a film production company. I ended up backing out of that project because it ended up feeling very icky and exploitative. It is, unfortunately, not uncommon for the intersex community to have to exploit themselves or feel really icky about certain questions and topics and things.

At the time, I was like, “Who are you to back out of this? You have this really well-known journalist who wants to make a movie about you, and you’re saying no. What are you doing, Alicia?” But I’m so glad I did because I went with my gut. Had I not backed out of that, I never would’ve been able to do this project. When Julie came along, it felt different from the very beginning. From the first conversation I had with her, it felt like she was in it for the right reasons, that she really had learned about our community and was shocked and horrified about what was happening, and just wanted to be a part of illuminating that for us.

MW: What was coming out like for you?

WEIGEL: I like to say that I came out backwards because I came out to a legislative body of state senators before I even came out to my own brother. I certainly would not recommend that to folks. But, honestly, it was almost easier to come out to a bunch of strangers than it was to people that I had been lying to for my whole life.

But then even after doing the professional come-out in the Senate and then the personal come-out in my family and networks, it then took a much longer process of truly understanding and recognizing what owning this new identity meant for me.

I still had a lot of internalized self-hate even after I came out. And so, the coming out in the Senate [hearing], it was just the very, very tip of the iceberg. It has taken many years of therapy since then and being in a community with other intersex people, and truly starting to live and believe in what I fought for on that very first day that I came out. It’s an ongoing process.

Unfortunately, because there’s so little awareness of what intersex means, even within the queer community, intersex people have to come out every day. There are a lot of people that hate trans folks. There are very few people at this point who don’t know what trans means. With intersex people, it’s like we have to explain who we are first and then they hate us. It’s like there’s this added step that every single time, even within the LGBTQI+ community, we have to delve into our trauma and our medical history and all of this simply to explain to people what our identity means.

That’s why I think this film is honestly really helpful. It takes some of that burden off of us. It’s like, okay, well, go watch the movie.

MW: Europe takes intersex much more seriously than America.

WEIGEL: Oh, yes. So many places do. Even Africa, for example. These surgeries are banned in Greece. They’re banned in Kenya. There are entire countries that have banned these non-consensual surgeries on children. We’re just really far behind.

I have to be honest that I think Europe takes it way more seriously because, from a certain standpoint, the [American] medical industry stands to profit a lot from doing surgeries on our bodies. And so, in countries with socialized medicine, there’s less of a profit motive to normalize us into one of those two boxes. That could just be one contributing factor.

MW: When you came out to the Texas Senate, you say in the film you called your mother beforehand. How did your mother respond to your coming out?

WEIGEL: It has been an ongoing journey. I think parents of intersex people are victims, too, because they’re not presented with comprehensive and medically accurate information to make a well-informed decision for and with their child. Any good parent wants to do right by their kids and keep their kids safe. And so, for any parent to then, many years later, come to terms with the fact that decisions that they made may have inadvertently harmed their child is a really tough thing to grapple with. And I think there’s a lot of parental guilt that comes with that.

When I first came out, my parents almost viewed it as if I was advocating against them, even though I never blamed them. I always was just fighting for my community. I was never fighting against them. If I blame anything, I blame this society that thinks in such binary terms that doctors and parents feel compelled to make these decisions.

And so, in the beginning, it was a little bit rough. With therapy, my mom was able to more see my side. She has since become a big advocate for our community. But I would say that to any parents of intersex kids who might be reading this — it might not necessarily be an easy process for them either, but there’s a light at the end of the tunnel.

MW: There’s an interesting distinction. As a gay man, I had to come out to my parents. I had to say, “I’m gay,” at some point. With an intersex child, the parents already know it. They are already well aware of the fact.

WEIGEL: So the parents and the doctors are forcing you into the closet before you would even have a chance to self-identify. That’s why I know a lot of people who are openly gay and even openly trans who are not out with their intersex identity yet.

We’ve seen, since the film has come out, so many intersex people have come out. They’ve reached out to me online and some of them have made posts, but even a lot of those people who have come out, they may have already been members of the LGBTQI+ community, but they didn’t feel comfortable claiming their intersex identity because the shame and stigma goes so much deeper. The closet is that much deeper, because your parents know often from the moment you’re born. And so, the layers of shame and stigma are just that much heavier.

MW: Is there anything you’d change about the film?

WEIGEL: I mean, I think Julie did a phenomenal job. The main thing I think that is missing — but it makes sense to me why it’s missing — is just that we have a total lack of adult intersex healthcare in the United States. There’s like a total and utter dearth of medical providers that have any idea how to treat intersex bodies competently.

It makes sense why the film focuses so hard on surgeries, because when this is an introductory level film for people to learn about an issue, it makes sense to pick the issue that is the most horrifying and gut-wrenching because that is going to pull people into our movement. They’re going to be like, “Holy crap. This happens in modern day?” And that’s going to bring them into our fold.

But one thing that is just not talked about enough is how there is no standard of care for healthcare provision for intersex adults. There are very few doctors who are proficient in working with intersex bodies. And so, once we age out of pediatric care, we are often left high and dry. A lot of my work is on that front, working to help build intersex competence within the realm of adult healthcare.

MW: What other challenges face the intersex community that we should all be aware of?

WEIGEL: There’s the childhood surgeries. There’s the lack of adult competent care. Then just the overarching lack of visibility, because the thing is, you can’t solve a problem that no one even knows exists. We’re already working on a lot of policy solutions for everything that we’ve talked about at the local level, at the state level, at the federal level. We’re making good progress in a lot of ways. But we would be able to make progress a lot faster if we had more visibility, because people can’t endeavor to serve a community that they’ve never even heard of.

MW: Do Republicans have a knee-jerk negative reaction to intersex, much like they do with the transgender community?

WEIGEL: So there are two things I would say. One is that the Republicans have learned a lot more about us than the Democrats have, and they have used it to target us — as you see in these bills that disallow trans surgeries but force the same surgeries and hormones on intersex kids. So the Republicans have done their homework. They have just taken the wrong message. The Democrats haven’t done their homework. The Republicans at the very least they’ve learned a lot more about us than the other side has. They just really have done a lot of evil things with that knowledge.

But when it comes to the knee-jerk reaction, honestly, I’ve actually found the opposite. I’ve found intersex to be almost a gateway issue for trans stuff, because when people hear me talk, they’re like, “Well, that makes total sense. You were born with physical parts in between. They shouldn’t force something on you.” And I’m like, “Okay, well, I can no more help being born with physical parts in between than someone can help being born mentally or emotionally in between. We shouldn’t want to help it. It’s not something to be helped. It’s just how we are.” I think starting with us and then extrapolating that outward actually helps bring some people into the fold.

We haven’t had a platform like this movie yet where the culture knows that something’s important. To be honest, whatever party you’re in, you’re most motivated by what your constituents are demanding or what people are asking for. People couldn’t ask for any of this stuff because they didn’t even know that any of it was happening in the first place.

So I do hope to see a change in that regard. I think the reason that Republicans found out about it sooner is because there are well-coordinated networks of organizations that are working on what they call gender exploratory therapy, which is the new conversion therapy. But rather than focused on sexuality, it’s focused on sex and gender.

So rather than saying, “We want to electric shock the gay out of someone,” they’re saying, “We want to therapize the trans out of someone.” Intersex gets lumped into that for obvious reasons, and I think that those organizations that are pushing gender exploratory therapy have found a real foothold in the Republican Party because Republicans don’t want trans people to exist. And so, they’re very happy to parrot that message, whereas they would not find that same foothold in the Democratic Party.

I think it’s really more of a need for us to just educate the public to the point where intersex issues become part of the common cultural vernacular, to where people are talking about it enough that then the Democrats act on it.

MW: Okay, my final question, a very soft one. So how’s your life right now?

WEIGEL: Really busy, but really great. I can’t wait to see what comes out of this movie, to be honest. I think it’s just the beginning. I’m really excited to see — like if you and I talk five years from now — what conversations we’re going to be able to have, and where our movement is at that point.

Every Body will be available on streaming and VOD in the near future. Visit www.focusfeatures.com/every-body/watch for information on dates and upcoming screenings near you.

Follow Alicia Roth Weigel on Twitter at @xoxy_alicia.