Episode 41: Exploring Intersex Identity
with advocate Erika Lorshbough
Amy is joined by Erika Lorshbough, Executive Director of InterACT, to learn what it means to be intersex, the major struggles facing the intersex community, and how intersex issues are also women's issues.
Our Guest
Erika Lorshbough
Erika Lorshbough is an intersex advocate and activist for civil and human rights. Most recently, Erika served as deputy director for policy at the New York Civil Liberties Union and led the organization’s extremely successful statewide legislative program advancing principles of freedom, justice, and equality. Along with their experience in program and organizational management, Erika brings two decades of heart work in community organizing and social action. Their law and policy experience has spanned the areas of gender and sexuality, voting rights and democracy, economic justice, criminal legal system reform, and the rights of people experiencing detention and incarceration. Erika completed their undergraduate studies in psychology and public policy at UCLA and the Luskin School of Public Affairs and received their J.D. from Brooklyn Law School. In addition to numerous public interest awards and legal fellowships, Erika has been honored as a Rising Star by the Brooklyn Law School Alumni Association, and was named one of the Best LGBTQ+ Lawyers Under 40 by the National LGBTQ+ Bar Association. Erika is a certified restorative justice practitioner, an adoring caretaker of plants and animals (and people!), and a fan of wandering and getting lost from time to time.
Amy Allebest: As a project dedicated to understanding and deconstructing patriarchal structures, a lot of our conversation here at Breaking Down Patriarchy is conversation about the two binary sexes, female and male, and the two binary genders that typically tie to those sexes, women and men. But, as listeners know, there are many, many people who exist outside of these tidy categories. Some people transition between genders and some people embrace non-binary identities. And then there are the 1.7% of our siblings who are born intersex. As it turns out, the population of people born intersex is just about the same size as the percentage of people born with red hair. So, chances are, if you know any redheads, you probably know some intersex people as well. How much do you really know about them and what it means to be intersex? What is life like for our country's intersex community? What are their struggles? How can we help and what can we learn from them as well as we all work together for an egalitarian future? I'll admit I don't have all the answers to any of these questions myself, but that is why I'm so thrilled to be joined today by one of the nation's leading intersex advocates. They're an outspoken activist, a hardworking lawyer, and the executive director of InterACT, the only intersex-led policy organization in the United States. Their name is Erika Lorshbough, and I'm so excited to have them join us today. Welcome, Erika!
Erika Lorshbough: Thank you so much. I'm so glad to be with you.
AA: Erika Lorshbough, whose pronouns are they/she, is an intersex advocate and activist for civil and human rights. Their law and policy experience has spanned the areas of gender and sexuality, voting rights and democracy, economic justice, criminal, legal system reform, and the rights of people experiencing detention and incarceration. In addition to numerous public interest awards and legal fellowships, Erika has been honored as a rising star by the Brooklyn Law School Alumni Association and was named one of the best LGBTQ+ lawyers under 40 by the National LGBTQ+ Bar Association. Erika is a certified restorative justice practitioner, an adoring caretaker of plants and animals and people, and a fan of wandering and getting lost from time to time.
That's a fabulous biography, Erika, your professional biography. I love the “fan of wandering and getting lost from time to time”. I can relate to that. I'm the same! That's also a very, very impressive professional resume. I wonder if you could introduce yourself to us a little more personally now. Tell us where you're from and some of the factors that went into making you who you are today and leading you to do the work that you do.
EL: Yeah, sure thing. Thanks for that. I grew up in Arizona and have lived all over the US, but I've been in New York for about 16 years now. And over the course of my life I have done many things and wanted to do many different things, but since I was a kid, I thought that I would like to be a lawyer. And since I was a teenager, I had a dream about being a civil rights lawyer. And I will say that I took a very long and meandering and probably wandering-and-getting-lost kind of path to get to law school. I actually studied to be a therapist, and the deeper I got into that course of study, the more I came to think about the reasons why somebody ends up in the therapist’s chair. Much of the time, if not most or all of the time, it's not really because there's something wrong with us, it's because we're operating in a society that we're not adapting well to. And I started to think about the fact that a lot of that maladaptivity, it's actually because the society that we live in isn't set up to meet our needs. So I started skewing toward community mental health and I took a Public Affairs and Public Policy minor. And the deeper I got into that course of study, the more I understood that I really wanted to be a part of law and policy reform and social change, and working to build the society that does meet people's needs so that when we need to seek support, we have a better understanding of what the support that we need might be.
I just think there are so many ways that we can use the law as a tool to actually make people's lives better instead of making them worse, unlike some stuff that might be happening right now. So, I went to law school and I worked at the ACLU in New York, NYCLU for about nine years. The dream came true, and when I was there I worked on everything that the ACLU works on, which for someone like me who has a peripatetic brain, it was amazing. I was always learning new stuff and I managed to work on first amendment rights, criminal defense rights, all kinds of defensive democracy work, which feels really useful right now. And an interesting thing I think about, you know, working in intersex rights and intersex law and policy, is that it's exactly that scenario that first got me to think about getting into law and policy reform. As intersex people, it's not that there is something wrong with us, it's that we are operating in a social system that doesn't recognize us or doesn't validate our different experiences.
AA: Yeah. That makes so much sense. That's so important to highlight the structural problems. Because I think in a lot of these oppressive structures, individuals are made to feel like they're the only ones, they're the problem, if they're struggling then it's a personal problem. And it diverts the attention from the actual problem, which is so often systemic. Thanks for sharing that. Before we get into more of the meat of the episode, if you can define some terms for listeners who are not familiar with this area, and maybe even define the term intersex. What does it mean to be intersex? Where do intersex traits come from? What do those traits typically look like? If you could kind of orient us to this whole world that listeners might not be familiar with.
EL: Yeah, sure thing. We all come into any conversation with a different level of understanding, and there's no shame in not understanding something we haven't had an opportunity to learn about yet. So just at the very basic level, “intersex” is just an umbrella term for many different variations in a person's physical sex traits. These are innately occurring variations. We used to say that intersex variations are something that you're born with, and that is true, but it doesn't necessarily mean that your intersex variation is visible or detectable at birth. So there's that. And when we're talking about variations in sex traits, we have to kind of define like, what are sex traits? What are we talking about when we talk about sex characteristics? A lot of intersex variations arise from genetic differences, but basically speaking, you could have differences in your chromosomes, in your hormones, either in terms of hormone production or hormone response, or both. And the kind of intersex traits that I think people are most familiar with are differences in a person's visible, external reproductive anatomy, but you can also have differences with regard to your internal anatomy, other reproductive organs, such as the prostate can develop differently. So there are all sorts of variations. People can look very different in terms of how their same variation might manifest for them.
And it's interesting because intersex bodies are very exoticized, but in fact this kind of variation happens all throughout nature. And as you said when you started, it's actually not that rare. We have kind of started to move away a little bit from red hair and green eyes, which are both relatively apt proportionally as analogies, just because they're a little Eurocentric. Every population in the world does give rise to individuals with red hair and green eyes, but not at a consistent rate. So a lot of the time we'll talk about it like, for example, if you take the whole global population of intersex people and invite them to a conference, a) what a fun conference it would be, and b) the number of people there would be similar to the population of Japan or Mexico.
AA: Oh, wow.
EL: That's a good way to give people a sense of it, you know?
AA: Yeah, yeah, yeah.
EL: Japan and Mexico in particular, there are other countries that are near there, but each of those nations has one of the largest cities in the world in it. Mexico City and Tokyo are right up at the top of the list. So it gives people a visual to understand that intersex variations are relatively common.
AA: Yeah. Thank you so much for pointing that out, and I'll shift my analogy when I use that. Because I was so struck by the red hair example, but that is very Eurocentric. And that's crazy about Japan or Mexico, that's a really great way of illustrating that. I wonder too, maybe you can just tell me if I'm correct in understanding. I imagine that if a baby is born with external genitalia that are obviously intersex, then the parents and the doctor will know immediately, right? But I think from what you said and from things that I've read and seen even in the media, that some intersex characteristics won't manifest until various stages and sometimes much later in life, right? If it's differences in chromosomes or if it's differences in internal anatomy that sometimes a person can go through life not realizing they’re intersex until later and discover. Could you talk about that a little bit?
“if you take the whole global population of intersex people ...the number of people there would be similar to the population of Japan or Mexico. ”
EL: Yeah, absolutely. Everything that you say is true. The most commonly understood forms of intersex involve, you know, babies born with genitalia that have developed in a way that they're not perfectly all the way on the feminine development side of the spectrum and they're not perfectly all the way on the masculine development side of the spectrum. And I think a lot of people, for as smart as we are, I think a lot of people really don't even have a basic understanding of sex development and the fact that it's all the same tissue. And when we're developing, you start in kind of a neutral state, and then with certain influences, you'll start to develop masculinization or virilization if that's the way you're gonna go. I personally was born with slightly virilized genitals, but not enough for anyone to be like, “Oh ho! This baby is intersex.” So, lucky me. One of the things about my background was that I lost both my parents when I was 18. And in hindsight, I look back and I think that there are a lot of physical traits that I have, the way that I build muscle, my overall body shape, there are some things that make me think that my mom might have been born the same as me, that she might have been built the same as me. So my story is a pretty good example of one way it works out, which is that by the time I was six or seven– and I grew up in Arizona, and we were running in the sprinklers naked and I had, you know, seen other young kids' bodies and I understood that my body was a little bit different. Again, not in a way that anybody was raising a hue and crying about, but when I was just a little older than that, probably seven or eight, I started to undergo precocious puberty that was both feminizing and virilizing.
AA: Oh, interesting.
EL: My family were kind of doctor avoiders, but one of the things that will draw differences in someone's sex traits to folks' attention is usually around the time of puberty. And one of the things that's relatively common with some intersex variations is precocious puberty. The differences haven't been detected at birth, and now I think we're much more likely than we were a generation ago to detect those differences in terms of, for example, a baby who's born with XY chromosomes but appears typically like a girl. But a generation ago, that baby would've been born and people would be like, “Hooray!”, spank it on the butt, “It's a girl! Pink balloons for everyone!” I guess we didn't really quite do the gender reveal party in the same super intense way that we used to do back then. So some people know from birth or their families know from the time they're born, and some people will find out around the time of puberty, either because it starts early, pubertal development is happening in a way that is unexpected for the child's body type. Or sometimes puberty wouldn’t start at all. There are similar sex variations where either hormone production or hormone response is such that no pubertal development will start. I would be willing to bet at this point that especially because our understanding of intersex is broader and more inclusive, that it used to be– this is just conjecture, but I would be willing to bet that most people find out in adolescence or pre-adolescence in the case of early puberty.
So there are plenty of intersex variations. I did not know I was intersex until much later and I kind of looked back and added everything up. I had only been seen for that precocious and virilizing puberty and was prescribed sex steroids. And I think I took it for about a week, and again, my family is kind of like, “eh, medicine,” and it was never a thing. I grew up the way I grew up and I wasn't terribly medicalized other than that. And since we'll get into it for sure, that's one of the reasons that I feel almost called to do this work, is because I haven't had a lot of the really terrible, stigmatizing, hypermedicalized stigmatizing experiences that a lot of my friends and colleagues have had. So it feels easier for me to put my skin in the game and say, you know, “I was left to grow up as I am, and everybody deserves that.”
So, on top of experiences like mine, there are folks like my predecessor at the organization, her story is very public, she’s written a pretty successful memoir about it, and she did not find out about her inner sex variation until her forties. She was trying to have kids, and that's how she found out. That's how she found out anything about it at all. And other folks can live their whole lives and never realize. Again, as medicine gets more modern and in ways perhaps a little more intrusive, I think it'll be less and less likely for people to go their whole lives without knowing that they have some kind of difference. And then I think most of the controversy now that exists is actually in terms of defining what should or should not be considered intersex. At InterACT, we take a broad view that if you have innately occurring differences in your sex traits, we consider that the same as intersex or consider “intersex” the word for that. And we also understand that lots of folks in the community don't like the term, or if they feel like it's been too stigmatized or feel like intersex people have been treated badly for being intersex, they may not identify with it. And that's okay, too. We all have different concepts and language for who we are, and we're entitled to that.
AA: Yeah, thank you. And thanks for sharing your story with us. That's so, so important for people to be able to hear stories, but of course I would never want to put you on the spot, so thank you for that generosity. I'm curious if you've heard the series on the show Radiolab called “Gonads”. Have you heard that series on Radiolab?
EL: No. But it sounds like something I should listen to.
AA: Yeah, I think it is, and I would be curious to hear what you think of it. But that was, for me, one of the most eye-opening and kind of world-blowing-apart episodes, just because I learned so much about how all humans are formed in utero, and the crazy interesting interplay of everything that goes into creating our bodies. But one personal story that I took away from that episode was from a champion runner from India who didn't discover that she was intersex until she was winning all these races. And I think when they were, they may have been testing her for steroids or something, but she was getting blood tests and they discovered a very, very high level of testosterone and she discovered that she had testes and not ovaries and didn't know that. So just speaking to your point about the very, very different ways that people can learn that they themselves are intersex and then what that means, but that personal story of her sharing her experience was, I think, so powerful for a lot of listeners listening to Radiolab.
EL: Truly fantastic.
AA: Yeah. Yeah.
EL: And I know the runner you speak of, and I don't know her personally, but her name is Dutee Chand.
AA: Yes.
EL: And she's one of a few women of color from the Global South who were elite athletes and were featured in a film called Category Woman, which is a documentary about the experience of intersex athletes. If I'm not mistaken, all three of the athletes who were featured in that film all found out about their differences because of compelled sex testing.
AA: Yes! I'm remembering more details, and she found out from the newspaper instead of from her own doctor, I think! Oh, it's horrible the way it was handled. I'm sorry to interrupt you, but yes.
EL: No, no, it's okay. It's one of these things, especially because in our culture the sexes are reinforced enough as this incredibly important thing about who we are and what our access to things in the world around us is and should be. And there are other cultures around the world where that difference between what men and women are allowed to do and get, whether or not non-binary gender could be a thing at all, that difference can be so much more intense in other cultures around the world. As rough as we can have it here in the US as intersex folks, my team and I will talk about it as a matter of policy, we're in a tough position right now for sure. We were making a lot of gains before, but those gains have all been walked back. So we're really focused on state and local legislatures, medical associations, those are the places we're doing our best work right now.
But it's wild to think that at least in the US, violence is usually not committed against us. We're appearing different in any way. I will say that some parents, when they're told that they have a baby with an intersex variation on the way, they may also get counseled about whether or not they want to terminate that pregnancy and stuff like that. So, we do still deal with some of the… I hate to use the word “eugenics”, it's such a strong word, but it's applicable certainly around the world, and a little bit still here in the US. Just because I think doctors are aware that parents have cultural influences and biases and some parents really get freaked out when they hear about their baby having any difference. Still, I feel really grateful that here in the US it's not such a matter of violence. And there are places where folks with more apparent intersex differences really can't even participate in society. And I know it's kind of hard to feel sorry for elite athletes, they're such a world apart from most of our lives, but I think we can really all relate to the kind of experience that those three women had. Finding out this very core, fundamental thing about yourself, a) because you had to undergo sex testing that you didn't want to undergo, and b) that you had to undergo that sex testing in the first place simply because you were excelling in your sport and people were suspicious about that. I could go on and on about that forever, but we have a lot of ground to cover, of course.
AA: Yeah, yeah. Well, my next question I think is really connected to what you were just talking about. We can and should feel grateful, if things could be worse and they're not, then that's something to feel grateful for. But I do know that even in the United States, I believe, like you said, it's gotten better and then worse and probably two steps forward and back throughout history. But I'm wondering if you could share some intersex history with us, how intersex people have lived historically. Because that will lead to the question, why was the creation of “intersex” necessary? What were things like? And I think you mentioned that your case was possibly better than some even here in the United States because of the way your parents and your community chose to handle it. So can you walk us through some of the history?
EL: Yeah, absolutely. It's hard to answer the question of what happened when a baby was born detectably intersex before probably about the ‘50s. In the mid-20th century, a particular doctor, who I won't name because I'm so sick of saying his name, but all of this is very easy to find online. A particular doctor devised a theory that whatever a child's sex at birth or whatever their sex traits were like – we didn't really have any understanding of the genetic nature of intersex variations or anything like that at that time – that you could basically, rather than letting nature take its course, you could nurture and rear a child into the gender that you, as a parent, preferred with the support of doctors. So one of the techniques for conforming a child or a baby's body to the preferred sex has been surgical interventions. So in the case of a girl with XY chromosomes, who's born phenotypically female that I mentioned before, ordinarily, girls with those kinds of intersex variations are born with internal testes. So the first thing that will happen is as soon as surgeons are permitted to, and you'll see in medical literature that they actually recommend doing this as early as possible, so we're talking about as early as six months of age, they'll begin surgically altering a child's body to make it appear more in alignment with the sex assigned at birth.
It's relatively rare that there's such a degree of ambiguity that doctors and parents wouldn't know which way to go anymore. We have other information available from perio type testing and whatnot. So people will make a decision. Nobody really gets assigned intersex at birth. That's one pretty common fallacy that I can dispel right now. But if a child is observed to be intersex, then throughout the end of the 20th century and well into this century, the practice was to take every available measure to “correct” that child's body – for the audio-only listener, I’m putting big scare quotes up – “correct” the child's body to make it appear more typically male or female. If a child did have ambiguous genitalia, that would involve genital surgery. And one of the points I'd like to make about these practices, like they sound kind of ghoulish, just without even understanding any more about it, but in the context of like the American legal system, most states ban female genital mutilation, which is clitoral cutting. One of the most common procedures that's still done to this day is a clitoral recession or reduction, where basically a baby with a variation more like mine might be born with a large clitoris, and still too frequently, we would argue, that baby's clitoris will be cut down and reshaped, often before they're two years of age. So if we look at US law around female genital cutting, there's literally no other circumstance in which you could do this to a child's body, to the body of any person who was not able to give their own consent to the procedure. But there's an exception. There's an exception in the laws of these states for when it's considered medically necessary.
Another example is the gonadectomy that I mentioned. A lot, a lot, a lot of intersex babies and children that are subjected to surgery have their gonadal tissue removed. Similarly, in the United States, we have an intense history of forced sterilization, and particularly on populations that are deemed lesser in some way by the government, the medical establishment, whatever it might be. And it's another misconception that folks have that intersex people are all infertile. In fact, under the broad definition of intersex that we and most of our community embrace today, most probably are actually fertile and capable of having children unless they have been subjected to sterilizing procedures. And similarly, because of the history that we have here in the US, and actually true in many places around the world, there is virtually no place in the United States that you can perform a sterilizing procedure on someone who does not have the capacity to consent to it on their own behalf, either without a court order, without a judicial order, if at all. In many places it cannot be done, even if a judge orders it, unless that child is a child with intersex variations. If that person is a child with intersex variations, there's no legal barrier that exists in the US. And when I put that into relief for people, I mean, this is how I know I'm getting through, because people's faces just fall. If that's not discrimination and if it's not sex-based discrimination, then I don't know what to call it. As a civil rights lawyer, it's so evident. We treat this one class of people entirely differently than we treat everyone else, and like radically differently. On different ends of the entire legal and policy and medical spectrums.
AA: Yeah. And in ways that affect the person's real life, their actual body, their life choices, permanently, without their consent. My face fell when you told me. I'm shocked. Wow.
“as early as six months of age, they’ll begin surgically altering a child’s body ”
EL: It's true. And the medical establishment now knows things that it didn't know before. If you remove the internal testes of a girl who has complete androgen insensitivity, in many cases, the body will convert the sex hormone that it can't use to the sex hormone that it can. So if you leave that child's body alone, she's going to be much better off than if you remove her hormone-producing gonads because they're not the right ones for her body type because, “ugh”. Literally we're doing all of this to kids' bodies because “ick”, and that's the wildest thing to think that people who have learned biology, who are doctors and understand naturally occurring variations in all of our biological systems, to think that they're just like, “Well, what if we just fix the baby's body because ick.” It's this mix of medical and surgical capacity and parental distress. And if you look at the research, there is never any research on– I think maybe the very first longitudinal studies are being done on intersex individuals’ experiences, the research is always on surgeons’ assessments of the outcome and basically the prettiness or appearance of the child's genitals after a surgery. And parent ratings like, “Yes, I think that my child's genitals do look better.” This is not… that ain't it. We're talking about whole human beings who never are permitted to grow their bodies and to become who they are.
AA: It’s bringing up all kinds of questions for me about doing those external, as you said, “corrections”, those external surgeries, but then not taking into account what the hormonal implications are. I guess if you're doing internal surgery, like if you're affecting the gonads, what the implications will be over the course of that person's life and how dangerous that can be. I'm wondering how it's changed over time, because it sounds like it has gotten better than it used to be in terms of people studying it, understanding like, “Oh boy, we really shouldn't mess with that. That will cause long-term harm psychologically as well as physically.” So how has that changed? And then let's put the work of InterACT there on that timeline. Why was the creation of InterACT necessary to ameliorate and to fix some of these things that were going wrong?
EL: Sure. Our organization is turning 19 this year, which is exciting. Our founder is a woman, a lawyer named Anne Tamar-Mattis, who still is in our universe and a wonderful resource and supporter for us. And she got together with other lawyers, with intersex folks around the Bay Area and Sonoma and Napa in the early 2000s. The intersex rights movement in the US really started in that area in the ‘90s. And one of the things I want to mention is that there's often this perception of tension between trans and intersex communities. Because people will say, “Trans people want access to this kind of care that you are talking about, while intersex people don't.” And that's not just a vast oversimplification, like, I hope that I can convey to your audience how deeply intertwined the pioneers of the trans rights movement were in the ‘80s and ‘90s in supporting and helping launch the intersex rights movement. If you ever go back and you see photos of the first public-facing intersex rights groups, there's trans and intersex folks holding those banners together.
And I always tend to argue it's not actually that people want something and people don't want something. What everyone wants is bodily autonomy, what everyone wants is control over their own body of life. And everyone has those rights, which is why it's kind of absurd that parents would even feel like they have to have to make these choices for young people. So, InterACT was founded with the core mission to limit the practice of these medical and surgical interventions before a child has the capacity to make their own decisions. We often say that we're not anti-surgery, we're anti- consent violations. The degree of informed consent that even a parent would really need to receive to be able to make a fully true and informed decision about these surgeries, it is rarely given. And I will say, I want to credit– We have many wonderful medical allies at InterACT, and there is a consensus shift happening inside the medical professions. What we're finding is that there may be a decline in the rate of these surgeries, but what there for sure is, is people taking more steps and taking more time and like adding extra processes before undertaking these procedures.
Anyway, that's still movement in the right direction, but it doesn't give that child their right to make their decision. It doesn't give that baby or three-year-old the time that we argue that they need to develop the capacity to understand who they are, what they want for their body. We make new medical allies all the time, because adult intersex people will go into the doctor and talk about their past experiences. And those doctors are like, “Why did they think a 3-year-old needed a vaginoplasty? What is a 3-year-old going to use a little vagina for?” But it's literally like that. So we came from a traditional legal perspective. The goal, at the time that the organization was founded, was to bring the first lawsuit against the practice, which we did. And it was settled favorably. There have now been multiple lawsuits settled favorably, in favor of intersex individuals who were subjected to really mortifying procedures that they couldn't consent to. And we're talking about incredibly invasive procedures. If you were going to do something like this on an adult, you'd give them a litany of “there will be scar tissue, there will be loss of sensation.” To think that as much as our parents love us and want good things for us, to think that they are really, actually capable of making that decision on someone else's behalf, it's kind of a stretch of the imagination, I think.
AA: Wow, yeah. Thank you for bringing that to the fore. One question I have for you is– I'm just thinking, as a person who has been a child and a person who is a parent, I have four children, I'm just thinking about parents and especially parents who live in very conservative communities, maybe this is completely new to them. I'm thinking especially because I come from a very, very conservative religious context myself.
EL: As I do.
AA: Do you, too? That's remarkable too, that your parents were able to just let go a little bit, or what was it that enabled them?
EL: I legitimately think that I didn't look that different. That's the best explanation I have.
AA: Okay.
EL: And babies’ bodies are so tiny. So, a little bit of virilization and it's not like, “Oh, these are ambiguous. I have no idea what I'm looking at here.” Which wasn't the situation for me and isn't for a lot of people.
AA: Yeah, okay.
EL: Though those are the most common surgeries, I would say at this point, girls with CAH or some other condition or variation that gives rise to genital virilization, they're like, “Let's cut that back and make it look like the pictures in the book.” And there are so many assumptions that go into that, and that's why we're here talking about it in terms of the patriarchy.
AA: Yes. Yes. And that was going to be my next question, for sure. But before we get into patriarchy, and that is my next question, my heart is just going out to those parents who maybe are truly thinking about it for the first time when it's presented to them. And I'm just wondering if there are more resources for them to chart this really uncharted territory, at least in their experience, to give them support. Like, “This is not as uncommon as you think it is. Here's what's best for the child,” but it is going to be a different road than what they expected. Probably if they, again, if it's never been presented to them and it's so different from their own experience and what they expected based on their religious upbringing, how can they get support to say, “This is what is best for my child. We're not doing this,” to resist that pressure that they might have.
EL: Yeah. There's a wonderful support group for intersex folks and their families called InterConnect, here in North America. Each place has their own version of something like this. They're a wonderful organization. They're highly under-resourced, but they do so much with volunteer capacity and with the resources that they have. We have passed, both in New York City and at the New York state level, legislation to start to have the Department of Health or in the city the DOHMH, create an educational campaign. It's a wide audience, but it's really supposed to be targeted at parents and providers. There's a way that I think in our society, we can kind of lionize doctors and lawyers as people who have all the answers. And both doctors and lawyers are just building on exactly whatever the person who came right before them did. True innovation is, you know, it's another thing that can be a little few and far between.
And I think you're right, and it's natural for you as a parent to think about that. And I think you're right, even outside your personal frame, to focus there, because equipping parents with good information and being like, “Your baby can grow up to be happy and healthy the way that they are,” stuff like that is so important. And if a doctor thinks this is the way to go, the way that we respond to medical authority, if we're not doctors ourselves, and even if we are sometimes, is just to be like, “Okay.” And especially if we're freaked out and we don't know what the future holds. So, a lot of our work that isn't formal legal work is actually about creating resources that intervene in those kinds of, “Well, obviously this is the answer” conversations. It can go from nowhere to there so fast. But the more information that parents and providers, in particular, have, and we do have resources that our youth members write and we publish. “What we wish our parents knew…”, “What we wish our doctors knew…”, we just did last year. “What we wish our therapists knew…”, teachers, friends, we have all these resources for folks in the community. All of them are online and free to print and download forever. So sometimes just a pamphlet, I mean, we're not the most well-resourced organization, but we do what we can to get information into all the places it needs to be.
AA: Oh, that's so awesome. I'm feeling so… I am just imagining myself as a parent in exactly the situation that you described. If I didn't have the information, which I wouldn't have, because I'm learning it right now in real time with you in this conversation, if this had been the case with one of my children, and exactly as you said, turning my to my doctor, “I don't know what's going to be the best for this baby that I love,” and then the absolute horror to discover later that I made a choice that harmed my child.
EL: So many of the parents in our community are doing the dedicated work that they are because they are living with that.
AA: That's just awful.
EL: It's really heartening to see the way that the young intersex folks that we work with, plenty of them are far, far away from their families, but plenty of them are also in their families, being well loved, being affirmed for who they are, even when parents didn't know better a generation ago.
AA: Oh, that's really heartening. And this is great for every listener. I'm sure there are listeners who have been through circumstances like this, but if you haven't, now I'm thinking of myself, anyone that I know in the future, now I have more information. This could happen as a grandma, I could have a grandchild. The more people who know about this and preemptively so that when it presents, it can be like, “Oh, I know what that is, and I'm informed, and I know the best thing to do is A, B, and C. This has been studied, not a big deal.” So, thank you for your work. This is so awesome.
EL: One of the things I like about red hair as an analogy, despite its Eurocentric lean, is that my spouse is a redhead and I'll be like, “Did you know that that's a mutation?” That's my little joke, but it's true. People are like, “What is a mutation? Am I a mutant?” But it's just a genetic difference. So in that way, it's really not that dissimilar. It's just that this strand of DNA went this way instead of that way, and I came out with this crazy red hair that won't take any dye, just does whatever it wants, you know? That's the same. All our bodies are built like that, whether we realize it or not. And we all have some genetic differences. Now that we've really mapped the genome, we all have different stuff going on. It's just that our society is so laser-focused on the cultural and social implications of sex that makes this something that's seen as pathological instead of just a natural variation that occurs.
AA: Yeah. Well, speaking of that laser focus on sex, let's get to that patriarchy question, because that is part of it, right? The patriarchal norms are what set up this whole situation as being pathologized in the first place. Can you talk about that a little bit?
“Your baby can grow up to be happy and healthy the way that they are”
EL: Yeah, absolutely. I think that the way for me to start is not to start with, you know, we've talked a lot about how attitudes were and how this all came to be the way that it is. When on day one of this administration, the executive order, the so-called Defending Women Executive Order came out, it did, or I guess I should say it purported to do, it tried to do many things. And I have gotten rooms full of listeners to agree with me that from now on out we're just going to call it the Dehumanizing Women Executive Order. And here is why. Just as a text, there are so many contexts in which we can see that these attacks on trans women that are happening all around the country, both in policy and in their social environments, these attacks hurt all women and girls. You can see it in sports, because 10 collegiate transgender women exist that are playing sports. Every girl from whatever tiny age a girl starts playing sports in school to the college level is going to have to get cheek swabbed. Literally the most invasive kind of testing that the law protects with the utmost care is your DNA. So girls who are not trans and not intersex get scrutinized when they play sports and they succeed. I love partnering with the National Women's Law Center on this stuff because they really get it. They're like, “This is not good for anyone, and it's very bad for all girls.” Take an under-resourced, you know, girls’ and women's sports sphere and use what little resources there are to pay for sex testing.
So in that executive order, they do a few really obvious things, and one is they start by defining our sex as a matter of what our bodies are like at conception. At conception, we don't have bodies, we're just two cells fused into one. There literally is no sex differentiation that ever takes place until at least week six of embryonic development. But we know why they did that. They did that so that they could shoehorn a nice fetal personhood referenced into here. And it was not an accident. And how do we know that? We know that for sure because the very next thing they do after nonsensically defining sex as what we've got at conception is to then define people entirely in terms of their reproductive capacity. So if you have the things that should make a girl into a woman with reproductive capacity, then you're a woman. And if you don't have that, I guess you're a dude. That's the third thing. They could come to any sorts of conclusions, but the conclusion they come to is that everyone who's not a woman with reproductive capacity must be a man because that's all there is. That's all that the good Lord made back in the Garden of Eden, so that must be all there is.
This, obviously, is an overt attack on trans women. But what it does, besides what it obviously purports to do, I think is much more concerning. And when you add it all up, it kind of feels like Handmaid's Tale time to me. We're literally in an age where the president– I'm sorry, so many words want to come out of my mouth right now, but where the president is just putting out imperial decrees that say that women are as good as this and we're going to protect them by making sure that nobody who doesn't have reproductive capacity that a woman should have gets to pretend to be a woman. This is bonkers. I feel like that's the example that makes it so obvious to me what it is we're trying to do. The other thing is, if you look at all of each and every one of the bans on gender affirming care that has been enacted into law in the United States, and I think there are 26 or 27 now, each of them also contains an exception that permits what I will generously call sex-conforming procedures, either on cisgender kids, or originally they started as pure intersex exceptions. A doctor is not going to be held liable for doing genital surgery on a child, so long as that child has a verifiable disorder of sex development, which is the common clinical language.
And then the Supreme Court agreed – not all members of the Supreme Court – then they argue, “Well, this is not a sex-based classification, this is about medical purpose. This is blah, blah.” And I'm like, no, no. It's very obvious. It's so obvious. Justice Sotomayor vehemently agreed with the brief that we put into the Supreme Court. You can't say this is just about medical purpose or any of that unless you're willing to admit that the medical purpose that is acceptable to you is to conform a young person's body to their sex assigned at birth, only to their sex assigned at birth, which now increasingly is a matter of policy, and if they get their way soon, really, truly, as a matter of law in most states. Your sex assigned at birth is it. That's all there is. Nothing about your gender matters. They're barely going to be able to get birth certificates corrected if someone just puts the wrong letter on there anymore because they're so paranoid about it.
The entire purpose of all of this is so far beyond making trans girls’ and women's lives miserable. It's so much more, and it's very evident all over the place about getting everyone who's somewhere around the range, we're just going to keep pulling and we're going to keep forcing people into boxes until we just have two perfect little Venn diagram circles, and nary shall they touch or overlap in the middle. Can't be done. Because this is a man and this is a woman. And if you look at a textbook and you're like, “How sexually dimorphic are humans compared to other species?” They're far less sexually dimorphic. There's so much more overlap in the physical structures and the ways that a “typical man’s” and a “typical woman’s” bodies are. We’re not silverback gorillas, which are 800 pounds and they're like eight times the size of a female gorilla. We're not like that. And we know this, we know this in our guts because there are people whose sex might be ambiguous to us when we see them. We have that experience in part because we have been acculturated to have these expectations. And those expectations are also incredibly racialized. This administration wants, Trump wants everyone around him to, he says, “I want them to look like they came out of central casting.” What does that mean? They want everyone to look like this pretty, slim, blonde woman with a very feminine way and bearing, and this big, jacked, alpha male lumberjack guy, or whoever it's supposed to be. Whatever the ideal du jour is. But those two characters, a) they're white. It's not that there's no room for people of color anywhere in there, but they had better be as assimilating as much as they can. God forbid anyone wear or adorn themselves in any way that isn't perfect, white, Judeo-Christian culture. And it's already visible in our cultural sphere. A lot of this started during the first Trump administration. And so much of it is really coming to bear now as they're trying to use the weight and force of the federal government to enforce these totally made up social ideals. Everyone's going to look like, what's it, Wally and June? Everyone's going to look like the Cleavers like 70 years later. Cool. Let's do it.
AA: Yeah, and you're right, it's total fiction.
EL: Nobody fits in those ideals anyway. That’s the thing. The most perfect specimen of white masculinity or femininity. We all got warts, we all got stuff. The warts could be literal or figurative in this case, like everybody's got something about them that they wish was different. I mean, the people themselves don't fit these ideals. It's all so fictionalized. And the purpose of it, I mean, the last government regime that I can think of that paid as much attention to the physical attributes of its people were the Nazis, and I don't use that word very much, but it's the absolute truth. If you're trying very hard to call out differences and be like, “No, we don't want, we don't want,” there are other regimes in the history of the world that have done that. This is not new. It's just way more intense than I think it has ever been in the US.
AA: For sure.
EL: And maybe a new iteration of it. And it's so much based on sex stereotypes.
AA: Yep. And this is reminding me of what we said at the top of the episode, you said that everybody knows in their own life like, “I don't conform to the ideal in this way.” Or, “Oh no, my child doesn't conform in this way.” So then everybody's thinking that the problem is them or that they're some weird freak because they don't conform to this thing, when actually the truth is that it's the ideal that's the problem. It is the structure that's the problem. It's the laws that are created on this false premise that are the problem. But if everybody thinks that they individually are the problem, then people don't change the laws, they just try–
EL: That's exactly it.
AA: –to do the surgeries or whatever, to do the things to try to make themselves fit the binary, fit the mold. Instead of saying, “No, we need to change the mold because it’s not reflecting reality.”
EL: I'm sitting here and I'm working in a world adjacent to, and now permanently linked, because of the way these laws are written, to the fight to retain access to gender affirming care for younger people. Our work now is intimately intertwined with that work because 99% of the policy measures that impact intersex people in this day and age are overtly anti-trans measures. So every time that is happening now, and it's happening all the time, we have to be paying attention. It's so wild to me how utterly obvious it is, it's sitting right there for people to get, and still we refuse because we're so acculturated into it. It's amazing how fast these kinds of norms and worries really change.
AA: Yeah. Well, sadly I just looked at the time and we're about to time. But I guess one optimistic note that we could leave on is that mores can change in a positive direction too. And we have seen, as you have mentioned in this conversation too, we have seen positive changes in our culture. More information, more data being shared, more empathy, in some circles at least, where people are doing some work to learn beyond their own experience and learn more about their human siblings and create a more just world. So my last question for you is, what are any listeners who are hearing this right now, what we could do to support the intersex community? Are there ways that we can signal our allyship, how we can get involved, either with InterACT or just supporting intersex people in our daily lives?
EL: Yeah, sure thing. We have a ton of resources, including a resource on workplace allyship, resources relating to intersex youth and students in schools. There are a few operating dedicated intersex organizations inside the country. We are one, Interconnect is one. Our friends at the Intersex Justice Project are starting a new project called SLIM, which is about narrative shift, and they're just launching now. And obviously we are always delighted to get even the small amounts of support. One of the things we're doing right now is if you'll donate monthly, even if it's just a dollar a month, I'm doing monthly Q & As with folks to get in touch with the community, and we're in such a frightening time and to answer folks' questions, so there's all of that. The simplest, lowest hanging fruit, I think, is to go ahead and take the extra second to use the longer acronym and use LGBTQIA or LGBTQIA+.
EL: Inclusion, it doesn't change the world by itself, but it's a step towards that. And even if you're just like, “There's literally nothing I can do and I don't have a dollar a month to give to the intersex,” just include us. Similarly, if you look at pride celebrations around the world, every other country in the world is basically fully using the intersex-inclusive progress pride flag. Here in the US, it's a little bit of an uphill battle to get it. There were several federal agencies that flew it during Pride month last year and the year before, and we were happy to see that. That won't be happening now, obviously. But I love it. I have one outside, and sometimes folks will walk by and I'll hear the older folks like, “What is that yellow with the purple circle?” And the kids always will say, “That's intersex.” And I'm like, kids get it right. So those are the simple things, I think. And we have a Get Involved page on our website, at interactadvocates.org/getinvolved, where you can check out all sorts of opportunities. So just get linked up. There's a lot of really great intersex media now. Still the most famous intersex book was written by a non-intersex person and is not realistic in any of many different ways, but there are so many more memoirs and films and all of that now that are made and created by intersex people. So that's a fun summer recommendation.
And just to wrap up on an uplifting note, I was already talking about this, you know, my less fraught analogy was to the ‘50s, which really is when the practices of trying to force intersex bodies to conform began. And culturally, we have all these references to the ‘50s, but we also know what came after. We know what the backlash to the ‘50s and that intense push for conformity to sex ideals and all these other ideals was. We got the ‘60s, we got revolution, we got courts that actually dedicated themselves to expanding civil rights that were written into law by legislatures that knew that the last decade prior had been a mess. So the pendulum does always swing. People get harmed when it swings that way, but I think there's so much evidence, and one of the reasons we do the youth support work we do, there's so much evidence that your response or the outcomes you have after difficult situations is entirely related to the support that you have in your life. I think that just being supportive of folks in your life, you know, we all have to huddle up and link arms. We're definitely all stronger together. We're going to get through this and we'll get more and better on the other side of it. I know it. The way to get through it, I think, is to stay in community and stay supportive of each other.
AA: Hmm. So inspiring. Thank you so much, and those are awesome, awesome calls to action for all of us. Thank you Erika Lorshbough, I learned so much from you today. This was a fantastic conversation. Thanks so much for joining us.
EL: Yeah, thank you for having me. It's been really nice.
