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PLEASE NOTE: This is a minimally-edited transcript that originates from a program that uses AI.

Anita Rao 0:00
The first time I learned about biological sex was a ninth grade science class, and my early takeaway was that it comes down to genetics. Either you have XX chromosomes and you're biologically female, or XY chromosomes and you're biologically male. And while that first science lesson made sense in theory, as soon as I stepped out of the classroom, reality painted a different picture. I heard about Olympic athletes whose sex was being questioned because of their hormone levels, and even the fine print of the textbook from that same biology class stated that there are folks who are born with X, X chromosomes that may have a penis or X, Y that may have a vagina. So while science often boils sex down to a binary, our real, lived bodies and experiences counter that narrative. This is Embodied. Our show about sex relationships and your health. I'm Anita Rao, up to 2% of the population is intersex folks with combinations of sex traits that fall outside the binary, and while their bodies are often talked about in the realms of medicine and sports, more and more intersex folks are starting to share their experiences on their own terms.

Hillel 1:20
My name is Hillel, and for me, what being intersex kind of means is sort of diverging from the sex binary of male or female, whether it's gonadally, chromosomally, hormonally or as in genitalia, it also involves having to go through many obstacles, pretty often, along with people just being ignorant about how your body works and generally a lack of information and resources that are geared towards you.

Anita Rao 2:01
That's 18 year old Hillel. We'll hear more from him later on, and from a doctor and the parent of an intersex tween. We're going to spend this hour examining one big question, what can we learn from intersex folks and their families about challenging the sex and gender binary and what's at stake for people's health if we don't to start us off. I'd like to introduce Dr Suegee Tamar-Mattis. She's a board certified family medicine doctor and a former medical advisor for interact, an advocacy organization for intersex youth. Hey, Suji, welcome to embodied.

Suegee Tamar-Mattis 2:36
Thank you. I'm glad to be here.

Anita Rao 2:38
So I want to start by unpacking this idea that many of us in western science classes have been taught that biological sex is a binary and I'm curious for you as a physician and as an intersex person, when you first came up against the limitations of this understanding of sex?

Suegee Tamar-Mattis 2:57
You know, I think that many Ways in science that sometimes things have to be simplified to be able to like, start teaching it right. And yet, at the same time, there's also been this decades long attempt to erase intersex people from existence, this desire to ignore the gray areas in life and to ignore history, because intersex people have always been with us. You can find statues of intersex people from the Roman times. We know that in very early writings in Judaism, there's mention of intersex people and where intersex people can pray. They pray with the women. Do they pray with the men? Or how do they inherit? And is more an issue of modern times that this has been sort of glossed over and erased.

Anita Rao 3:47
I love that you take us back to a deeper history and point out that this idea of a binary is very Western. Has really come from this medicalization of bodies, and it does not help us understand the nuance of the gray, which when it comes to intersex, there are so many variations of what an intersex body can look like. I kind of set it up as this umbrella term that encompasses a variety of conditions, but I'd love for you to help us understand this big variety within what it can look like to have an intersex body, and maybe some common examples.

Suegee Tamar-Mattis 4:24
So when you're looking at fetal development, there's a lot of things that happen in the development of the reproductive tract and of the external genitalia and the internal reproductive organs. And for the majority of time, there's all these different things go a certain way that give you the typical looking male and female genitalia. But of course, there's genetic differences that can cause different routes of development of the genitalia, where you could have somebody who has x. Chromosomes, and they develop testes. Testes develop in the abdominal cavity, and then later during the fetal development, they drop down into the scrotum, and you can have certain genetics that will prevent those cells from getting the testosterone signaling that allows them to start moving and migrating down into the scrotum, and you end up with a baby that has internal testes and externally can look very, very typically female. It's called androgen insensitivity. You can also have a very typical looking male fetus that's born that does have XX chromosomes, and there's all sorts of ways that people can be intersex in between, so that you might have a baby that has very large clitoris, or a baby that's very small penis, or many of these other variations in between.

Anita Rao 5:58
So I want to pause you there, because you helped us understand that there are so many moments in someone's life when they might be come aware that they are intersex. If they aren't born with obvious genital differences, they might not find out about some of those hormonal things until later in life. I know a lot of folks are probably more familiar with how this shows up with testing for Olympic athletes, who might discover in testosterone tests for the first time that there is something happening in their system that they weren't aware of. But there are folks who do learn about it early, and there has been a lot of focus and conversation in recent years about what happens when a baby is born and they are born with so called ambiguous genitalia, and how this is then presented to parents as a decision to be made. So I'd love I know that you've done a lot of research on these surgeries. You have really documented how intersex adults who have gotten surgeries feel about them. Could you help us understand how these surgeries are currently operating in our health system and what the medical rationale has been for them.

Suegee Tamar-Mattis 7:06
So, you know, let me just start with saying that it's not recent. It's I started working with Cheryl Chase, who started the intersex Society of North America in 1994 I started working with her in 1995 and we were incredibly naive at that point in time, because we had all these people who had such bad outcomes from these surgeries. And all we thought we needed to do at that point was to let surgeons know, hey, the outcomes aren't good. We need to stop doing this. And we kind of thought we get the word out there and this will stop. And, you know, here we are, gosh, how many years later. And no, this is not stopped, except for a few hospitals in the United States and some countries like Malta and a few other countries that have also prohibited the these surgeries from happening. Well, they're basically the rationales are not based on science. They're based on fear. This is all based on John money's John Jones case that happened back in the 60s where they had twin boys that were born. One of them had a really bad circumcision accident, and John money got a hold of these kids, and it's like, here's how we can figure out if gender is nature or nurture, and to do that, we're going to turn this boy into a girl, and then we'll see. And so he started publishing all these papers that showed how great this female identity took with this kid. And everything was great. And so he just said, gender is by nurture. It's not nature. And then he turned to intersex children and said, oh, so we can fix these mutated looking children, or these odd looking children, and we can fix them, and it will be fine. So the adult who was in the John Jones case came forward back in the 90s and actually said, Look, no, this did not go well. I thought my gender assignment, I felt like I wasn't a girl. All this research was falsified. So basically, this whole concept of how to create gender that's been put upon the intersex children and intersex babies was based on falsified research.

Anita Rao 9:27
So you mentioned this idea of fear and a fear based approach, and I would be curious to know how you would advise parents who are maybe in that moment where they're hearing the fear based message, potentially, from a physician that says, look, the risk is that if your kid doesn't get this surgery, they may grow up and they may not look the way that a girl is supposed to look, or they may not be able to have a certain kind of sexual relationship. And it's based on a fear of a. Potential future, assuming that the kid identifies with a certain gender. There's, there's a lot of assumptions, but they're in that moment when a parent is, you know, dealing with a newborn baby, and there's so much new information, like, it can be a lot to take in. We're gonna hear Eric's perspective a little later. But from, from your perspective, as a physician who's looked at this on a much bigger scale, I guess, like, what is the message there? The reframe there of thinking about the surgical decision and how it affects an intersex person's lifespan.

Suegee Tamar-Mattis 10:32
You know, parents are given this hard sell that there's no other option you have to do this, and that if you don't do this, your child becomes suicidal, and we can just do this little fix and it'll be fine. But here's the truth, you know, if people don't have surgery when they're adults and or even like older children, and they can actually make these decisions, that is totally a great plan. I think that's what we should be doing, because then at that age, especially once you like, hit adulthood, it's so much easier to visualize the nerve bundles and be able to preserve function, and you're also working for something that that's this person wants. Maybe they're going to keep them just the way they are, but if they want to have something different, then they have options. If you do surgery at such a young age you are removing tissue, you will actually take those options away from children as they get older, raising a child with a gender that might be wrong is not as hard to fix as trying to change your genitals to something you want after you've lost them.

Anita Rao 11:36
As Suegee said, The Story of medically unnecessary surgeries on intersex children is long, complicated and honestly, pretty messed up. I didn't know much about it until a few weeks ago, when I started researching for this episode. I watched the 2023, documentary every body, which tells a story of three intersex people and their journeys to adulthood. What became quickly clear to me in that film is that this history is something that even some intersex folks are just learning about for the first time. As we've also touched on in the first part of this conversation, intersex bodies are highly varied, and getting appropriate and affirming medical care doesn't stop at birth. We'll get into breaking the silence around intersex identity and providing support for intersex youth into their adulthood with Suegee just after this break.

This is Embodied. I'm Anita Rao. We're constantly getting signals about what it means to be masculine and feminine, and we explore that messaging a lot on embodied but in addition to how that conversation implicates gender, it's also relevant when it comes to sex. Intersex bodies, those with traits that don't fit into a binary definition of male and female, illuminate that sex also isn't just two things, the realization that your body doesn't align perfectly with the binary. Can Happen to intersex folks at many stages of life, and when it happens later on, the discovery can shed light on things that once didn't make sense. Take this story from Sam about looking back on puberty.

Sam 13:14
Hi, I'm Sam. I'm 26 and I have Klinefelter syndrome, which is when, instead of having X Y chromosomes or X X chromosomes, I have X X Y chromosomes. And I learned about being intersex in college. You know, I didn't really go through puberty very well, like my voice was still really high, and I would go to the gym and just like, nothing would happen, and I would still just not build any muscle. It was helpful to know for that, and it was also just helpful to know for, like, why I didn't have facial hair. So it really helped me with that, because I was just, you know what, what is wrong with me?

Anita Rao 13:59
Supporting inner sex folks to understand their body signals and needs as one part of Dr Suji Tamara Mattis job, she's a board certified family medicine doctor and a former medical advisor for interact, an advocacy organization for intersex youth. So we left off the conversation talking about supporting kids in and parents in that very early stage of navigating having an intersex body in medicine, but as we touched on earlier, some intersex folks don't find out that they have an intersex variety until puberty. So I would love to hear a little bit about your experience working with teens to understand and advocate for their bodies as they're exploring them in the puberty phase, and maybe understanding what it means to be intersex for the first time.

Suegee Tamar-Mattis 14:49
Yeah, I think it can be pretty shocking for a lot of teens to realize that they may be different from from their peers, but also at the same time. Am. Once teens have been able to meet other intersex youth, they really tend to realize that the path that they are walking is also really beautiful and awesome. I think the big key to really raising intersex children are that they are born with apparent intersex differences, or if they find out the intersex differences in puberty, is really to get them to the support groups and get them into places where they can meet other kids that have intersex conditions. This is where you really see this community bloom and begin to produce really strong, really happy children and young adults.

Anita Rao 15:41
For a long time, there has been a lot of secrecy encouraged in medical circles and social work circles around the experience of being intersex, and there are a lot of obviously mental health implications for that kind of secrecy. I'm curious how you see that showing up in some of the intersex teens that you have interacted with.

Suegee Tamar-Mattis 16:02
Yeah, definitely. Intersex teens that had a lot of secrecy around their intersex condition, especially when they were known earlier, have a really basic feeling of distrust from people around them. I think that's why, one of the really important reasons why it's vital to let kids know that they have this condition. And no, it's not always appropriate to, like, tell everybody that you have this condition. It's just the same way about when your kid realizes that they have a penis or they have a vagina. I remember one of my kids. They were really young, and they jumped up at the dinner table when my mother in law was here to announce that they just realized how to pull back their foreskin, and I've learned to retract my foreskin. Let me show you. It's like, no.

Anita Rao 17:01
Not right now, not right here.

Suegee Tamar-Mattis 17:03
Not right now. So, you know, genitals are an issue for everyone, right learning when to talk about them, how to talk to them, about them, or an issue for everyone. And I think this is kind of the issue that comes up with, with raising an intersex child. It's like you are talking about a medical condition, and yet people start thinking about genitals right away, right so I think you just have to, like, of course, just learn how to walk that as any child with any type of genitals is going to learn how to talk about them, if you keep things secret from children, And then suddenly they find out as young adults that is really that is such a betrayal of trust that those kids are going to have.

Anita Rao 17:47
You work with a lot of trans patients as well. You founded a transgender clinic at Santa Rosa Community Health, and you've trained a variety of folks in gender affirming care. And I would love for you to help us understand some of the healthcare needs, I guess, some of the parallels and some of the divergences in healthcare needs of trans teens and intersex teens, which can sometimes get conflated in conversations about gender affirming care.

Suegee Tamar-Mattis 18:17
Exactly, yeah, it gets conflated a lot in conversations the trans community was there back in the mid 90s, when we first started becoming a community, and we didn't have enough people that were able to like be out at that time, and we didn't know the political ropes. The trans community was really there to help us learn how to run politics as a community and to seek our rights as a community. I do think the appropriate place to care for intersex young people and children as well as adults is actually through the lens of transgender care. One of the important things that we do in transgender care is that when we're working with trans young people, you have to do the reversible steps first. First, you do the social transition that you know the kids are comfortable being socially in the gender they want to be. And then when they get older, you do hormone blocking so you can, like, hold that off until they're ready to start puberty. And then you could do the right puberty when the time is correct, and you don't do surgery until those kids are 18. I think that there is some leeway in there, but we're not, you know, nobody's doing transgender surgery on like six year olds, whereas they are doing intersex surgery on six year olds. So I once again, I think that you really need to do the reversible things first. I think that pediatric endocrinologists have really failed the intersex community in many, many ways. You'll find in most universities where you have pediatric trans. Clinic, those same pediatric endocrinologists who are helping those young trans kids form their their gender identity and helping them become who they are, are also working against the intersex children becoming who they are, and are allowing and helping these irreversible surgeries and treatments to happen, and I think that that is where we really are losing the care that we need.

Anita Rao 20:31
I would love for you to close on any ways in which you're seeing young folks in the intersex advocacy space encouraging a new a new frontier, if at all, for, for what it looks like to live outside of and beyond this binary, anything that they have kind of taught you.

Suegee Tamar-Mattis 20:53
The intersex youth are amazing. And especially considering, considering that doctors used to say, and still say, that intersex children can't know who they are, because it'll destroy them, but knowing who they are, actually, for all these kids that I've seen have really energized them. This is like, developed a really strong communities, and now we're seeing like intersex children who are going to medical school and are going to make these changes happen, intersex children becoming attorneys. We're seeing intersex children becoming psychiatrists and therapists, and this is where we're going to see this change in the world that we need to see. One of the hard things, though, is seeing these young people that have had surgery and are still dealing with the after effects of this and and having to look those kids in the eye and say, Look, you know, I've spent so much of my life trying to keep this from happening today, and it has happened anyway, and I'm so sorry. And those are the reasons that I keep doing this work and I keep speaking up about this.

Anita Rao 22:04
Dr Suegee Tamar-Mattis, thank you, yeah, thanks so much for sharing all of that and for the conversation.

Suegee Tamar-Mattis 22:12
Oh, thank you. Thank you so much for having me on here, and thank you for doing this really important topic on your program.

Anita Rao 22:21
Suegee has been on the front lines of intersex activism for decades, connecting with other intersex adults, kids and their families, the community is really well connected, which means that she knows some of the parents who've started to speak out about their own experiences. One of those parents is Eric Lohman. In August, 2012 he and his wife, Stephani were preparing to have their fourth child. Like many parents, they didn't expect the baby to be intersex, but unlike many parents, they did know what intersex was, and knew that if it came down to it, they wouldn't consent to any surgery. That is the context that their child, Wade was born into Wade, who is now 12, has an intersex variation called Congenital adrenal hyperplasia, or c a h. It's a genetic condition that affects the adrenal glands and how they produce key hormones your body needs to function. Having c a h meant that while Wade was born with XX chromosomes, his genitalia was different from what his parents and doctors expected. I sat down with Eric Wade's dad to talk to him about the ins and outs of raising an intersex child, from raising him female until Wade decided on a name and pronoun change four years ago, to all the ways his tween years have been both different and sometimes exactly the same as his peers. We started at the very beginning, when Eric and Stephani were in the delivery room and plunged into a whole new world of medical decisions and parenting.

Eric Lohman 23:53
I mean, I really describe it as a drastic shift from sort of celebratory, exciting. Wade as our fourth child. So, you know, we're before and we kind of knew what to expect. And then it shifted to very scary, pretty quickly and very suddenly, the medical staff were clearly very anxious and nervous. Stephanie, my partner, wasn't, obviously, able to see right away what Wade's body looked like, but I could, because they had held him up for me to see, and many ultrasounds that we had before that, or one or two had suggested that he had no penis. And so we, like many other parents, were preparing to raise him as a girl. I was actually scared in the delivery room that they were going to take weight out and perform a surgery right there before I'd had a chance to talk to Stephanie about any of my concerns, so she could tell pretty quickly that there was something wrong, something concerning. They wanted to bring in a specialist right away, within the first couple minutes, and they'd taken weight across the room to do an examination. And and I went to watch, basically, I had actually put myself in between the the door and everybody else, in case they had tried to take them out of the room, so that I could just ask some questions and things like that. Like it was pretty scary for me. I remember being very panicked, and it was overwhelming. There was a physician that came in who was on call, examined Wade and had basically said, you know, sometimes this happens, sometimes people have a child, and it's not quite clear if it's a boy or a girl, and some tests will be needed, possibly the result of a genetic condition that that is actually quite dangerous, and we should be on the lookout for that. So Stephanie said something like, I don't care about that stuff. I just, you know, I want my baby. And they brought weight over to her, where, you know, we took pictures and we cuddled, but at that point I was, I was pretty anxious.

Anita Rao 25:51
So what were the surgical options that they presented to you? We talked a little bit earlier with a physician about how there are surgeries that are often presented to parents of intersex kids early on, what were the ones that they were suggesting for you all, and how did you come to the decision that you made to not do any surgeries?

Eric Lohman 26:13
The surgeries that were presented are pretty common. So it was probably day three where we met with the medical team physicians, geneticists, gynecologists, social workers, urologists, the pediatricians and their specialists. It was a room that probably had something around 20 people in it. Wow, a round table, and they walked Stephanie and I in there on day three after Wade had been born and he really wasn't even stabilized very well yet. So we go into this room, and everybody sort of goes around the room, and the endocrinologist is saying, This is how CH is treated throughout life, and these are the kind of medications. And through a lot of this, we got some degree of comfort and some assistance. I feel like understanding what options were, what it would be like for a kid like Wade to be on this kind of medication his whole life. We weren't particularly concerned with the gender and sexuality issues at all. We had talked and I Stephanie agreed with my position and all the research that we read, and was adamant, as well as me, like this is not necessary, especially Wade's condition. Ch, is precarious, and this is a very serious medical condition. We shouldn't be having surgeries on these kids when they're so medically fragile. So I was surprised when we got to the urologist and he had suggested, or presented a few options. The first one, his recommendation was a clitoral reduction surgery and a surgery to create a vaginal opening, and that those surgeries should be done at six months. His next recommendation was just a surgery for a vaginal opening and weight on a clitoral surgery. And I was furious. To put it simply, I was livid. I can remember, you know, my head and face getting red, and just I asked very clearly, why no surgery? Why not having surgery? Was not being presented as an option, and his answer was that he wouldn't recommend that option. The surgeon and I argued a little bit. I think I remember saying something along the lines of, you might be the doctor of vaginas, but you're not the doctor of gender. And he didn't really understand what that meant, or why I'd said that nobody else in the room supported us or came to our aid when we were arguing about this. Even now, it's hard to to understand how this was the position that he was taking and that there wasn't anybody there who, who was there to going to support us, so there wasn't anything productive that was going to happen after that.

Anita Rao 28:47
You used the the term doctor of gender, and I'm curious to talk with you a little bit more about that. Wade was born with clitoris, and you all did raise wade in Wade's early years with female pronouns and by a different name, what were some of the earliest conversations that you and your wife had about gender and the physical body of your kid with your kid?

Eric Lohman 29:16
Yeah, I feel like gender was a conversation with Wade from the very earliest moments. And so our goal was to try to have conversations with Wade that that encouraged him to think about his gender as something he has control over, rather than something that we have control over. So the conversations were about what kinds of clothes he likes to wear, what kind of toys he likes to play with, to just basically create environments that weren't restrictive for him. And the conversations mostly revolved around undoing the sort of gendered way that our society functions right so that he could live and exist in a world in which he had more autonomy and freedom to determine on his own what the. Things mean, and that's a learning process for everybody, right? That's not just for an intersex kid. That means everyone around him has to also learn how their own language is impacting other people, how their own values about gender and sexuality are impacting Wade, whether or not how we split up domestic labor in our house is fair or whether or not it's falling along these gendered lines, it just seemed to impact everything, everybody that we talked to, and it really happened in kind of small ways, right? It wasn't like it took up this huge amount of time or energy. It was more like we were all sort of a work in progress, because making the world hospitable to, you know, an intersex kid requires a lot of work, right? Because everybody to be on the same page. So a lot of the conversations were ongoing, like when he's very small. We couldn't really have complex conversations about gender and sexuality, but we could talk about bodies, right? Because he knew his body was different than mine, and he knew it was different than his mother's body. You know, it was like age appropriate conversations that would help him understand the sort of larger message we were working towards, like, diversity of bodies, diversity of thought, diversity of experiences, so that, you know, we just really didn't want him to feel like he was abnormal, right? That this is we all exist on a kind of spectrum of difference, and his body is different than everybody else's, but everybody's body is different from everybody else's. So as he aged, we started to get more into conversations around like, Okay, well, what does gender look like, right? What does it actually mean? How does it feel for us? There was ricochet effect where we were having the conversation with his older brother, Silas, who is cisgendered and straight. And so those conversations were like helping him understand why bodies are different and want, like how to treat people in a way that assumes that you don't know a lot about their identity or their experiences. And so like how to listen to them and hear them on those positions. So I mean, it really it's a hard question to answer because it seems like it impacted everything.

Anita Rao 32:01
Talking to Eric gives me so much hope about the future of parenting, and we're going to keep digging into his approach of letting his kid take the lead when it comes to gender. We'll continue that conversation in just a second. So please stay with us.

This is Embodied. I'm Anita Rao, today we're talking about the things we can all learn from intersex folks and their families about rethinking sex and gender binaries. We talked with an intersex family medicine doctor who was also an intersex person, and now we are knee deep in a conversation with Eric Lowman, whose 12 year old kid Wade is intersex. I asked Eric how he and his wife Stephanie encouraged Wade to think about gender and self expression in the face of pressures from the outside world, which genders all of us almost immediately into one group or another.

Eric Lohman 32:54
One of the ways that we did that was by having kind of a semi regular check in. And these were sporadic. These were not planned. But, you know, we would whatever be walking the dog with weight, and I would say something like, how are you feeling about your gender? Are you still comfortable using feminine pronouns? Do you still like your name? Do you want something different, right? Do you want short hair or long hair? Like letting him know that these kinds of changes aren't they're not going to bother me, right? They're not going to impact us. If he comes out and says, like, you know what, I want to grow my hair long. And most of the time his answer was always basically the same, which was, yeah, I'm fine. And then one day it just wasn't. And I can remember really clearly when it happened. We were in Florida and we were going to the beach with some family, and there was only two life jackets left to go swimming, and one of them was black and red, and one of them was pink, and the black and red one was too big. It fit his older brother, so he was stuck with the pink one, which everybody at the time seemed like no big deal, but he did not want the pink one. And I could tell the reason that he wanted the red and black one was because he didn't he did not want to be associated with the pink one. So I had talked to Stephanie about it, and she was like, Okay, that seems possible. Let's stop and get a new one for him, a different color on the way to the beach. And then, you know, everything was good and he was happy. And then we started conversations amongst ourselves, like, okay, maybe this is a change that is on the horizon was right around the beginning of COVID where he came out of his room suddenly and said, I want to go by Nigel, was the name he had said. And he was clearly nervous, but also kind of excited. And we were excited. And then we started conversations about what the name would mean and why he wants to pick a new name and whether or not he wants to change pronouns, you know, he really initiated that conversation, and then it became kind of a social, at least a familiar social affair, where we, you know, we're talking to some of his, you know, his brother and sister, talking to his aunts and stuff like that about these changes. And he felt really so. Ported and comfortable in that, in that choice, people were supplying names for him to consider, and so he was talking about, in fact, the name Wade that he picked is because my sister in law suggested that he go by Deadpool like he was a fan of Deadpool. He actually picked Wade because of Deadpool. So yeah, so really, I guess the answer to the question is that the conversation was driven by him, mostly when he felt that there was a need that he had or a desire that he had. I just wanted him to feel comfortable talking to us about it, and so far that's been the case.

Anita Rao 35:37
I want to just make a note here that, like there are plenty of kids who would be born with ch that would decide to continue to identify as a girl as they grow up, there is not obviously, like any kind of direct relationship between being born intersex and changing your relationship with your gender identity. But I wonder for you all, like, how meeting other intersex folks helped you have a more nuanced conversation about the relationship between gender identity and the physical body and kind of begin to separate those two things.

Eric Lohman 36:10
Yeah, that's a fantastic question. Indeed, true. I mean, really, the reason that we pushed back on surgery is because we can't possibly know what this child is going to want when he grows up. Our goal was simply to allow Wade to make choices about his body that he wants, and that may mean surgery at some point, that may mean that he identifies as feminine later on in life, who could possibly know what our diverse population is going to evolve into and turn into and so like we just didn't want to make any decisions that were irreversible, that he could not participate in and consent to. So meeting all of these folks who had intersex variations really illustrated to us the point that we have an incredibly diverse species, that we sort of restrict and pigeon hole into these positions, these identities that are restrictive and unhelpful, and lots of these adults express to us how their life would have been different had they give been given, really a small amount of autonomy over their own bodies, over their own identities. They all pretty much made the case to us that this would have had a profound impact on their lives, on their mental health, on their body image, on their relationships, on basically everything. And so I feel like we owe a great deal of gratitude to them for that, because they really helped us raise wade in a way that we, you know, go to sleep at night knowing that we did our best to make it so that this variation didn't impact his life negatively in ways that were avoidable.

Anita Rao 37:41
I want to talk about puberty. It is a time when intersex people may experience different changes in their bodies and their peers. It's a time when some intersex folks first become aware of their intersex variation. What have been some of the distinct challenges of Wade's experience navigating puberty as an intersex person.

Eric Lohman 38:04
Yeah, Wade's puberty has been somewhat varied. So he was on puberty blockers for a year, a choice that was his. He had started to develop a bit precocious puberty is also something that's relatively common with kids with ch once, we had started to notice that there were perhaps some signs of puberty, we started talking to him about it, and mentioned like, listen, we know you identify as a boy, and that's fine with us, but you also have a uterus, so that is a choice that you're going to have to be able to make. And I know that this isn't something that he can easily understand at 10 years old, nine years old when we're having these conversations, and so he would say things like, oh, that doesn't bother me, or I'm not worried about it. And so we were like, well, once he transitioned to more masculine behaviors, we had been more clear about this that like these changes that may come from a feminized puberty are irreversible, or not necessarily irreversible, but the reversing them, if you will, is significantly more difficult, costly, problematic, right? Some of these changes are not necessarily going to be things that you will be able to do anything about, so let's take some time to talk about it and think about it. So he went on puberty blockers for a year. In that time, we tried to have conversations with him, and he was mostly like, it's fine. I'll figure it out near the end of that year, when it was coming time for a replacement, he'd said he didn't want it anymore and wanted to go through a natural puberty so, and you know, we did talk to him and warn him, we've introduced him to other intersex people or people with ch that have expressed like your gender is not going to be something that maybe looks like everybody else's as a result of these changes, Right? You're going to have some feminizing changes and some masculinizing changes. You know, he has high levels of testosterone in his system, for what it's worth, that can cause a variety of different physical and psychological changes and impacts, but overall, he has been in the driver's seat. So puberty is not great for. Any of us. And so we were sort of like, well, if he feels comfortable enough to pursue this kind of puberty, then we've been successful, at least, in creating his own comfort in his own body, and probably are well positioned and prepared for whatever challenges that come along. So that was, I guess, the hope. We always knew that puberty was going to present some challenges. But so far, the worst ones have been what we've had with the other three, which is bad attitude, isolation, you know, the normal stuff.

Anita Rao 40:30
You seem uniquely well positioned and well resourced in terms of your access to information about media and gender and representation and all of these things, and that's so amazing, but I know that's not the case for a lot of other parents of intersex tweens and teens, and I'm curious about like, if there have been any any moments where you have all like you and your wife have felt particularly challenged or unsure about a next step to take, and where you turned for support or resources in those moments?

Eric Lohman 41:06
I would say that the biggest challenges have come from the medical community. As sad as it is to say it that has probably been the arena where we've encountered the most issues, the most number of concerns. For example, early I mean, aside from the surgeon putting a lot of pressure on us for surgery, once you know, we had eliminated that as a concern a problem, then it became Wade's body and his CH which needs managing, and the level of autonomy we wanted to give him over his body for that, and the ways in which it relates to gender. So I'll give you an example. We met with the geneticist early on, discussing like, how, you know, CH is a genetic condition, and the geneticist had come into the room with a resident and wanted to do a physical inspection of Wade. And this is actually quite common. We've had this experience many times with many different doctors, and this is not necessary. This is where, as you mentioned, you know, I'm well resourced and educated on this topic, and that's true, and I'm also pretty protective of my kid. And this also comes a lot from the intersex people who we spoke with as adults, who had mentioned feeling like a lab rat, feeling poked and prodded and like a specimen, as an anomaly, as somehow unique and worthy of everybody's attention and curiosity, and that is incredibly damaging to do to people, especially when what we're essentially observing is common genetic variations in how our bodies Look. Right? So Stephanie had was curious about why this resident needed to see Wade's body, and she had asked, like, what they were doing or what they wanted to do, and they had sort of sheepishly said, Well, you know, she wants to do an inspection and stuff was like, no not doing that. Like, why you're a geneticist, there's no reason for you to look at Wade's body at this point. And you know, these kind of tensions and conflicts happen multiple times. That physician pushed back and had essentially argued that she should be allowed to look at Wade's body because she's a doctor. And we were like, you're not doing that. And ultimately, it's because she was curious, and I know that that's the reason. So if you aren't, I guess, educated about this topic, or if you don't know other intersex people who have shared this experience, then we're much more likely to consent to how the doctors present information, which is why so many of these families consent to surgery in the first place. You know, there's this assumed loss of autonomy for kids who have special medical needs, and especially if that medical need presents in a way that is curiosity for people, and we knew it felt wrong, and so we felt we had to intervene. And again, this continues to be a problem that has not necessarily disappeared.

Anita Rao 43:50
I would love to end with any message that you would like to share with parents who are maybe in the early stages of supporting an intersex kid, who recently have found out that their kid has an intersex variation, who maybe don't have a lot of connections yet with other intersex adults. Is there a piece of advice that you would like to leave them with about raising a kid to navigate life beyond this, this binary that we've been taught?

Eric Lohman 44:21
Yeah, I would say you're not alone. There are other families who have experienced this. They've experienced the guilt and the worry and anxiety about what they're doing and how to raise kids that are going to be happy and healthy, but like many of the problems we encounter, community is very often the solution. So the intersex adults that I have met since Wade was born have completely changed the trajectory of my life. I really do believe that it wasn't Wade that changed the trajectory. It's the community that we found in support of Wade's life that have changed it because they taught us so much about diversity and about trauma and about. About, I think this dispelling some of the innocence that we had about the medical establishment and their desire to do good that community really helped contextualize what the struggle was actually about. And so for us, it's often been Wade is a pretty normal kid, and the only reason that that is true is because of the really awful things that so many other intersex people in our community have had to endure. And so I felt like I owed it to them to continue to do as much advocacy on this topic as I can, and I owed it to wade to give them that kind of chance to have the same kind of sexual and gendered experience that the rest of us have been able to or many of us, I should say, have been able to enjoy so my advice is to find the community, because that's the best way that you can support your kid.

Anita Rao 45:49
Eric, thank you so much for talking, for this conversation, for sharing your story. I really appreciate it.

Eric Lohman 45:55
It was my pleasure.

Anita Rao 45:58
We've heard a lot from Eric and Suegee about allowing kids to learn their bodies on their own terms and choose who they want to be as they grow up. I'd like to end this episode with thoughts from young intersex people themselves, particularly from the two folks who you met briefly earlier in this conversation, 18 year old Hillel and 26 year old Sam. Here are some of their thoughts about gender identity and how they'd like to see things shift in the medical treatment of intersex folks.

Hillel 46:28
I feel simultaneously sexless and male at the same time. They do remember this one time in eighth grade where I was really nervous and my teacher just told me to get feminine and be less nervous, but I never really managed to do that. So it felt like I was kind of failing at womanhood, even though I still felt like a woman somewhat. But now that I've realized I'm into sex, I realized I'm not failing at womanhood, especially because of the fact that I wouldn't have met the binary anyway.

Sam 47:06
Now I can know that it's okay to feel like you're in the gray area sometimes of not being exactly male or female. I identify mostly as male, but I'm also just okay, knowing that there is a reason that I can be a little bit more female than other guys my age. A lot of medical textbooks list that Klinefelter Syndrome has a bunch of, like, learning deficits. So my doctor originally didn't think I had Klinefelter syndrome because I graduated college, which is kind of crazy, but I just think we've been misrepresented in that way, because medical textbooks kind of exaggerate the spectrum. And always, you know, paint the picture of the most extreme, when in actuality it's kind of a spectrum relating to being intersex. And I think that's common with all of the intersex issues, is that the medical textbooks don't really say that it's a spectrum and that you're on the spectrum. It's just that you are, you have this and you are going to have all of the extreme things.

Hillel 48:21
There's just one server I was in where it's an intersex server too, but it's a little more medical focus, and many of the people there are in med school or studying, makes me feel like there's hope, especially because many of them are going into the medical field, and it also makes me feel more motivated to become a doctor, eventually too, and to be able to pretty much do my dreams, and I feel like I might eventually even write more about My experiences as an intersex person. In that way.

Anita Rao 49:04
Embodied is a production of North Carolina Public Radio-¹ÏÉñapp, a listener-supported station. If you want to lend your support to this podcast, consider a contribution at wunc.org now. Special thanks to Sam and Hillel for contributing to this week's show. This episode was produced by Kaia Findlay and edited by Amanda Magnus. Nina Scott is our intern and Jenni Lawson is our technical director. Quilla wrote our theme music. If you have thoughts or feelings after listening to this episode, we would love to hear them. You can leave us a voice note in our virtual mailbox SpeakPipe, or send us an email. We're at embodied@wunc.org. Until next time, I'm Anita Rao taking on the taboo with you.