Intersex: The I in LGBTQIA

State laws across the country, and now even federal policies, increasingly target transgender people and LGBTQ people more broadly.  Lifesaving, necessary gender-affirming care is being restricted or criminalized. Discriminatory policies and legislation, such as proper identity document bans, restrictions on participation in sports, and “sex definition” laws that police public restrooms, are attacking people in their day-to-day lives. What people may not realize, is that every one of these laws and policies affects intersex people, too, and that is why organizations like interACT are so important. From education to support, interACT is working to affirm trans and intersex folks in the fight to access lifesaving, necessary care. Today In the Den, we’ll  cover some important basic information that will explain intersex conditions, and we’ll talk about how we can better support and affirm the intersex folks in our lives and in our country.

Special Guest: Bria Brown-King

Bria Brown-King (They/She) is a Black, queer, non-binary, and intersex person. Bria is the Associate Executive Director at interACT: Advocates for Intersex Youth. Bria got their start in intersex advocacy in 2018 as an interACT Youth Advocate. In 2019, they became the first openly intersex person to speak about intersex issues on the steps of the Supreme Court. In their current role, Bria facilitates education on intersex issues, works to close the gap in intersex-affirming research and data collection, and serves on multiple advisory boards, representing intersex people nationally and internationally.

Special Guest: Dr. Bonnie Scranton

Dr. Scraton is a licensed clinical social worker, AASECT-certified sex therapist and sexual health educator, and an assistant professor of social work at Central Connecticut State University. She maintains a private practice and serves on a multidisciplinary team at Connecticut Children’s Medical Center, where she supports children with variations in sex characteristics and their families. Motivated by both her clinical work and her lived experience as the parent of a child with an intersex variation, Bonnie's  doctoral research at the University of Pennsylvania resulted in the development of Project LISTEN, a peer support and empowerment program for parents newly learning about their child’s variation. The program is designed to provide information, connection, and support for parents and caregivers, helping families ensure children grow up with agency and ownership over their bodies and medical decisions.

Links from the Show:

• Find the interACT website here
• Intersex Definitions here
• Intersex FAQ here
• Join Mama Dragons today

In the Den is made possible by generous donors like you. Help us continue to deliver quality content by becoming a donor today at www.mamadragons.org. 

Transcript

SARA: Hi everyone. Welcome to In the Den with Mama Dragons, a podcast and community to support, educate, and empower parents on the journey of raising happy and healthy LGBTQ+ humans. I’m your host, Sara LaWall. I’m a Mama Dragon myself and an advocate for our queer community. And I’m so glad to be part of this wild and wonderful parenting journey with all of you. Thanks for joining us. We’re so glad you’re here.

SHAUNA: Hello, and welcome to In the Den with Mama Dragons. This is Shauna, filling in for Sara. And I’m really looking forward to today’s episode. We’ve talked a lot on this podcast about how state laws across the country, and now even federal policies, increasingly target transgender people and the LGBTQ community more broadly.  Lifesaving, necessary gender-affirming care is being restricted and criminalized. Discriminatory policies and legislation, such as proper identity document bans, restrictions on participation in sports, and “sex definition” laws that police public restrooms, are attacking people in their day-to-day lives. What people may not realize is that every one of these laws and policies affects intersex people, too, and that is why organizations like interACT are so important. From education to support, interACT is working to affirm trans and intersex folks in the fight to access lifesaving, necessary care. Today’s guests are Bria Brown-King, a black, queer, non-binary, and intersex person who is the Associate Executive Director at interACT, and Dr. Bonnie Scranton, a licensed clinical social worker and parent of an intersex child. We’re going to cover some important basic information to understand intersex conditions better. And we’ll talk about how we can better support and affirm the intersex folks in our lives and in our country. Welcome to the Den, Bria and Bonnie!

BRIA: Thanks so much for having us.

BONNIE: Thanks Shauna.

SHAUNA: Yeah. Let’s start off with some really important definitions and basic education for those listeners who are unfamiliar with intersex conditions. What is the definition of intersex? And either one of you or both of you can speak to this.

BRIA: Yes. Intersex refers to bodies that express a wide range of physiological variations of sex characteristics and development that might not fit the traditional conceptions about what society perceives to be a “male” or “female” body. And so there are over 40 different intersex variations. And so intersex people could have natural differences in at least one of seven different components of sex. So, for example, a person could have a variation in their chromosomal configuration that is not just XX or XY. A person also might be born with variations in how their genitalia develops as well. A person could have variations in their gonads. This could also, for example, mean having a combination of ovarian and testicular tissue, just as one example. A person could also have variations in their other internal sex organs. This could, for example, include things like being born with, for example, a vulva without a vaginal canal. A person could have variations in how their body produces certain hormones as well as how their bodies respond to the hormones that it produces. So for example, a person could be born with XY chromosomes and have a variation known as AIS, Androgen Insensitivity Syndrome, where their bodies don’t respond to testosterone naturally and the body actually converts it to estrogen. And so these individuals tend to have a very feminizing puberty. And lastly, there are people who are born with variations in their secondary sex characteristics. And so these are the characteristics that tend to come about during puberty. So here we’re talking about things like facial hair and body hair and fat distribution and things like that. And so it is important to know that it’s not always apparent that someone is intersex when they are born. Sometimes it doesn’t become apparent that a person has intersex traits until, for example, they may be going through puberty. But it’s also possible for a person to go their entire lives not knowing that they have an intersex variation.

SHAUNA: That’s awesome. Bonnie, do you have anything to add?

BONNIE: Yeah. I’d love to add that I think one of the things that we don’t learn in school is that after an egg is fertilized and in sort of embryonic and fetal development that an embryo that will go on to become a person, sex determination and sex differentiation are separate processes and that when cell division starts, we actually end up having all of the component parts that we would possibly “need to have” to go down a more expected male or female path. But that those processes are different. So it’s a really complicated and very complex process to get to a sex determination and a sex differentiation like the ones that we typically would expect. So I think we see it over-simplified in the media or oversimplified on social media, XX is a girl, XY is a boy and that’s not true specifically. But it’s also just much more complex. So there’s a lot of different things that need to happen in a cascading fashion. So it’s just a lot more complicated.

SHAUNA: Yeah. Do we know what causes intersex conditions?

BRIA: Yeah. Some potential causes of intersex traits could include things like just random genetic variations and changes in, like I had mentioned earlier, the number of sex chromosomes a person has. As well as gonadal differences, for example in my case, prenatal exposure to an unusual level of sex hormones. Or, as I mentioned earlier again, different responses to sex hormones. So intersex traits in and of themselves are not life threatening although they are sometimes associated with other serious medical symptoms such as Congenital Adrenal Hyperplasia, and Turner’s Syndrome for example. And so I can talk more about those variations if folks are interested.

SHAUNA: Yeah. We can get into a few of the more common. Are there more common intersex conditions like maybe names and kind of what they are so that people, when they hear it, they’re more familiar with, “Oh. I know that’s an intersex condition that I should be aware of.”

BRIA: Yeah. Absolutely. And before I forget I’ll mention that interACT has a variations glossary on our website so folks can find that at interactadvocates.org. But I’ll just mention one of the variations that I brought up earlier, one of the common variations, AIS. And so, again, someone could be born with XY chromosomes and their bodies could have varying levels of insensitivity to androgen including testosterone. And so it seems that their cells don’t respond typically to the testosterone that they produce. And so, like other variations in sex characteristics, AIS is a spectrum. And so there are subcategories of AIS, for example, Complete AIS. And so people with Complete AIS have no response to androgens and are typically born with a vulva, a clitoris, usually a shorter than typical vaginal canal and undescended testes. Typically in adolescence they will develop breast tissue and other features that are typically associated with an estrogen puberty. Like I said, the body’s natural conversion of testosterone to estrogen. And there is partial AIS. And then there are people who are also born with Mild AIS and so have a mild response to testosterone. Another common variation, which is actually my variation, I was born with Congenital Adrenal Hyperplasia, also known as CAH. It’s actually one of the more common intersex variations that unfortunately, oftentimes ultimately leads to early non-consensual surgeries on intersex children. And so CAH is a group of different but related genetic variations that affects the enzymes that allow the adrenal glands – which are located right above the kidneys – to make specific hormones that help regulate the body’s function. And so people with CAH don’t consistently produce the amount of cortisol it needs to, which is the body’s way of regulating responses to things like stress and sickness. And aldosterone which helps regulate levels of potassium and sodium. And so, as the body’s way similarly, in the case of AIS, the body is always trying to find a way to correct itself and regulate itself. These individuals tend to produce a higher than typical levels of androgens such as testosterone to help the body compensate. So in my case, I was born with XX chromosomes, but I naturally have a high level of testosterone. And I had a puberty that I would say was both masculinizing and feminizing. So I also had precocious puberty, so I was going through puberty at a really early age. I think it was about 2nd grade. So I was developing facial and body hair. At the same time I was developing breast tissues and having my first period. And it was all happening at the same time. It was very confusing. I did not know what was going on. So there are, like I said, these subcategories. So there’s Classic CAH, there’s Salt Wasting CAH, there’s Nonclassic CAH. And so I won’t get into all of those. But like I said, the variations glossary can be found on our website. Another – I’ll just mention one more – another common intersex variation is Gonadal dysgenesis, and so this refers to a group of also different variations that affect the development of the gonads before birth. And so a person could have Complete Gonadal Dysgenesis. And so in this case, a person born with XX or XY chromosomes and gonadal tissue that hasn’t fully developed into testicles or ovaries. This is known as a Streak Gonad. These individuals are generally born with a vulva and a vagina and will usually not develop secondary sex characteristics at puberty as their streak gonads don’t produce hormones. Again, because everything is a spectrum, a person could have partial or mixed gonadal dysgenesis as well. So those are some of the common variations.

SHAUNA: I feel like with the biology of the human body, there are so many potential differences and mutations and changes. And I feel like you’ve touched on a few of them. But I love that you have a glossary and we’ll put that in the show notes so that people can go and get into it because I’m sure we could talk about any one of these variations at length. But I think the important take-away for our listening audience is that there are so many ways that bodies can be different. Bonnie, do you have anything you wanted to add to this?

BONNIE: When I’m talking to families about these differences, it’s also really important to know that we all have a very different base-level understanding of human biology. So kind of trying to work with a person's initial understanding of how things work. The buckets for me that sort of help organize my thinking are there are certain things that are chromosomal. So like Bria was saying, XX and XY. In those variations, people could have two X’s and a Y. People could have an X with the other chromosome missing altogether. So there’s a lot of different sorts of chromosomal things. But that’s again, that’s not the whole story. So there are genetic things where people can have different genes that are translocated. You can have one gene that typically is in one place show up somewhere different. You can have something that’s deleted that’s usually there. So there’s a lot of different ways that – For example, you could have a person who has a phallus who’s also XX. You could have somebody who’s got breast development like Bria was saying at puberty who’s XY –  So it’s just there’s a lot that needs to happen and there’s a lot of possibility for things to happen a little bit differently.

SHAUNA: Maybe avoiding the reductionist idea of male and female, right?

BONNIE: Yes. I think humans like to over-simplify so that we can think that we understand.

SHAUNA: Yeah. We like our boxes that we can just check.

BONNIE: Yeah.

SHAUNA: How common are intersex conditions?

BRIA: So intersex people make up about, we say .5% to 2% of the population. And so just for some additional context if people are wondering, that number is pretty wide in range partially because of the disagreements over what “counts” as intersex. So you’ll find that there are people who have variations in their sex characteristics that don’t use the term intersex to describe their experience. But when we consider variations like people who have hypospadias for example, people who have PCOS for example, that percentage becomes a lot higher. And so we are not that rare. That’s over 120 million people. We’re mostly just still invisible. And so we do still experience a lot of erasure. And so a lot of what needs to happen, I think, is just educating people on our existence and the fact that we’re here.

SHAUNA: You were talking about your early puberty and all of the things that you were going through, Bria. I’m like, that’s a lot for a child, that’s a lot for a young person, especially if you don’t have resources or vocabulary or any of those support systems in place. That can be a really difficult thing to experience.

BRIA: Yep. It was. People had questions and I did not have answers for them.

SHAUNA: Yeah. I would love to talk more about . . .

BONNIE: That’s right.

SHAUNA: Oh, go ahead Bonnie.

BONNIE: No, no. I was just going to say, we’ll talk about this in a minute, but that’s where I think as a parent I noticed over the years that when parents have more information and more support we’re then in a much better position to support our children no matter what age they are when we learn that they’re intersex. So I think it’s important for families, really, to have the resources they need to understand what’s going on and to actually access the care they deserve and the care that’s actually equipped to give them that support.

SHAUNA: Absolutely. That channels nicely into my next question. I would love to hear more about interACT, how it started, how you got involved, what the organization does?

BRIA: Yeah. For sure. And so interACT is a national intersex advocacy organization. We were founded in 2006, so we’re going to be celebrating our 20-year anniversary this year. So that’s exciting. And I like to mention that we were founded by Dr. Anne Tamar-Mattis who is not an intersex person. And I like to mention that because I think it speaks to the amazing things that our allies can do and that you don’t have to be an intersex person to be an ally and do these amazing things. And so we work to empower intersex youth and advance the rights of all people with any variations in their physical sex characteristics. And we do this through advocacy, public engagement, and community connection. And I got involved in interACT in 2018 as a youth advocate myself in interACT’s Youth Leadership and Development Program. I think I was just on Google and I googled intersex and a Buzzfeed, a video popped up titled I think, “What it’s like to be intersex.” I think it has over 5 million views at this point. And it was the first time that I saw live intersex people, intersex people of color at that, so people that looked like me. And they were laughing and they were embracing their bodily differences. And I didn’t know that that was something that was possible. For so long I felt so much shame around just being different. And so that led me to finding interACT because a number of the folks involved in that video were affiliated with interACT in some way. And so I saw that interACT had a youth program. At the time, I was a youth. And so I applied. And I got accepted. And then a week later, I was in a Hangout Meeting with Pidgeon Pagonis, who was featured in that Buzzfeed video that I had found just a week prior to that. And so next thing I know, a year after that, I was interACT’s communication intern. I had my opportunity to do public speaking for the first time. And before getting involved with interACT, I hadn’t really talked much about my variation or openly about being intersex and had the opportunity to make a little bit of history that year in 2019 – it was October 2019 – by becoming the first openly intersex person to speak about intersex issues on the steps of the Supreme Court. And at the time, this was during the Bostock v Clayton I believe. And I was speaking about why intersex people deserve to be protected from workplace discrimination. And things really just took off from there. The following year, in January of 2020, I got hired on as interACT’s Program Coordinator. And the rest is history. Seven years later, I’ve been promoted to Associate Executive Director. And so I just feel really grateful. A lot of what we do here is advocating for the rights of intersex people. And we do that at all levels, federal, state, and local. And so also what we do is a lot of educating the public, lawmakers, the medical community, anybody who’s willing to listen, on intersex issues. And supporting the next generation of intersex youth leaders is a big part of what we do at interACT as well.

SHAUNA: That is a journey. That’s awesome.

BRIA: Yeah. Thank you.

SHAUNA: Bonnie, how did you get involved with interACT?

BONNIE: Well, I’m a former board member. And I think my interest in being involved comes – Bria sort of alluded to this, but just to put a finer point on it – I think the idea of demedicalizing people’s variations while also acknowledging that for some people some medical complexity are things that need to be taken care of on an ongoing basis, is really important because I think it’s very easy and maybe even a little more comfortable for medical providers to think about this with strictly a medical lens. And when I think about our family’s journey, we learned about my child’s variation when she was 14. We had a little bit of a preview when she was about one and a half, but we didn’t really know what was happening so we didn’t have the full sense until much, much later. But I think there’s such a small sliver of someone’s life that happens in a medical setting and then everything else is out in the world. And so those are the places where I think sort of the support, the camaraderie, I think it’s fair to say – Bria you probably agree – that none of us who are in this community doing work on these issues does it by ourselves. You know, we need to lean on each other for peer support. We rely on each other for moral support, for taking over when someone’s energy is lagging, taking a step back. And I think just remembering that, yes, there’s a medical component to this, but that most of it is not medical. Most of it is about how we feel about ourselves and how we can carry ourselves into the world with our true self, not just sort of feeling like we have to hide this part of ourselves that no one can know about. Bria alluded to sort of the shame and the stigma. And that really is the most debilitating aspect that I have found both for children as they grow up, but for families. That can get really entrenched in a family and not on purpose. But just given the world that we live in and the lack of knowledge that we have, I think that for me is really wanting to get the word out about how encompassing this is and how people need to be respected and celebrated no matter what their internal or external body looks like.

SHAUNA: I think that’s such an important thing that you both touched on, overmedicalizing a human doesn’t allow them to be the whole person that they are. And I think that that’s an important take-away of all of this. I’m curious as you’re both talking, is it difficult to find medical providers who are competent in intersex conditions? How hard is it to find? And does interACT have resources to help people to find better care providers?

BRIA: Yeah. I love that you asked that question. The answer to the last part of your question is, yes we do. We actually created a – last year we created this self-advocacy tool kit because of that very thing. We had seen studies. There was a study done from the System for American Progress that just outlined the large percentage of intersex people who were avoiding going to the doctor just to get routine health care due to the fear of being discriminated against. And we knew that that was a thing that was happening because it was being talked about in community. But sometimes just having that data in front of you is just really alarming and eye-opening. I really think it speaks to an emergency in public health care. And it is really hard to find an affirming provider, a provider who’s educated on providing care to intersex patients. And so oftentimes what ends up happening as intersex patients, the onus is put on us to be well informed advocates for ourselves in order to get the care that we need, in order to educate our doctors to get the care that we need. And that’s really difficult especially considering the fact that for so many of us, a lot of the medical information is kept from us. There is a lot of secrecy. I know for me personally, I had a really hard time getting access to my medical records. And so when you don’t really know the truth about what happened to you, it’s really hard to answer certain questions. It’s hard to really advocate for yourself. And so I also think something that I have seen within community is a lot of intersex people are, you will see people getting prepared for their doctor’s appointment and they’ll have binders with all the information that they need to have ready because they are prepared. They know that they’re going to be getting asked questions. And I will say, though, that not everybody’s able to do that. And so I think about the people who aren’t able to really advocate for themselves in that way and the people who are falling through the cracks because of that. I think Bonnie spoke to just the importance of having access to community, I think that is true for both intersex people themselves. I think it’s true for parents and family members. There’s so much shame and secrecy still around the topic of being intersex. And even for me personally, I think about when I had surgery when I was 13 – a lot of us tend to have surgery if we don’t have it in childhood, I’m sorry before the age of 2 which is most common – we tend to have it in childhood. And for those of us who have, it tends to happen over the summer break. And that was the case for me. And so it was really interesting because my friends and family members came to visit me while I was in recovery. And everybody, the first question everybody asked – I don’t know why people ask this question – but they want to know what you had surgery on. And I didn’t know how to answer that question. I was unprepared for that question. I just kind of laid there because I didn’t know what to say. But even my siblings didn’t know what was going on and they lived in the same house as me. And so it was really hard not to internalize that this was something that I should feel ashamed of and not talk about.

BONNIE: Right. As a person who works with families and as a parent myself of an intersex child who’s now an adult, I just so want to go back in time, right, and wrap my arms around the family and around Bria’s care givers and say, “It’s okay to talk about this. It’s actually really good to talk about this. Everybody’s going to handle it fine. Let’s normalize this. Let’s get it out in the open. This is nothing to be ashamed of.” I just so want to have a time machine and go back and try to really support people who just didn’t know any differently, like you said, Bria. I didn’t know it was possible to see people thriving who had variations in their sex characteristics. We need some models to say, “Oh. That person seems fine. I could be fine too.” And I want to go back to something that Bria just alluded to with people going in with these giant binders to their appointments, which kind of goes back to the fact that these sorts of bodily variations, natural variations, often are sort of represented in the artificially siloed medical specialties that our world has decided are important. Different body systems, so endocrinology, urology, gynecology sometimes, genetics, and thankfully as a social worker and as a mental health advocate, we have finally gotten to a point that mental health is part of this and psycho-social support is really a bedrock to this whole process. So I think in terms of finding providers in pediatrics it’s getting easier. People are more interested in learning. Bria and many of us do education, medical education, with up and coming doctors, PA’s of all different sorts of specialties. But I think if you’re lucky enough to live within a driving distance of a metropolitan teaching hospital, you’re probably in pretty good hands. But, of course, not everyone lives that close. And also, our transition to adult care is abysmal right now. Most of the care that’s done for children with variations is done in an inter-disciplinary way, or at least in a multi-disciplinary way, with some teams around the country doing a really good job at doing it interdisciplinarily where they’re all together providing the care at once. But that team model does not translate into adult care at all. And so that can be, even for children who’ve had really good care as kids, they sort of graduate to sort of this open landscape of where do I even start. Or they move to a new city. Or they go to higher education and don’t really know how to manage things far from home. So there’s lots of gaps that people can fall into and that really are not meeting people’s needs at all. There are some people who are starting to look at that transition from pediatrics, to young adult, to adult care. Some places are lucky enough – we have an endocrinologist who’s board certified for pediatrics and adults which is great but that’s really rare. And so I think that’s something I can see in the next 10-15 years being the place where I’d like to see medicine really pay attention. And a lot of it is word of mouth, right? Different support groups have networks where people can post and say, “Hey, I’m in Cincinnati – I’m in st. Louis – I’m looking for a new endocrinologist. Anybody have any names?” But we shouldn’t have to rely on a sort of informal word-of-mouth network for major medical decisions and care.

BRIA: Can I say something funny about that, add to that, Bonnie.

SHAUNA: Yeah.

BRIA: So I had been seeing an endocrinologist for 17 years. And there were a couple years when I had turned 18 and had a full-time job I ended up losing health insurance for like two years. And by the time that I got health insurance back, I wanted to go see my endocrinologist again, I was 18 – at least 18 at that point – and she told me that she couldn’t see me anymore. And I didn’t understand because I didn’t know that there was a difference between pediatric care and adult care. I thought she just didn’t like me. And it was really challenging because no one ever explained to me and it didn’t really make sense. I had been seeing her for 17 years. Why can’t I see her again? She wasn’t that great of an endocrinologist, but I was familiar with her. And so I just wanted to mention that. I also, speaking about health care, I had Medicaid at the time and I was living on Cape Cod and it was really, really hard to find a provider that took my health insurance as an adult on Medicaid, I’ll say.

BONNIE: Yes. Absolutely.

SHAUNA: Navigating the health care system, when you’re talking about coming in with binders of information, it’s unfair that we as patients have to educate our providers. But sometimes that’s the truth of it. But I was also thinking about the intersectionality of these identities and circumstances that can add difficulty like being a person of color, being on Medicaid. There’s all these things that make accessing quality care even more difficult. And so it’s important that we have – like you said community and word of mouth is great – but I love the idea of having a more official way for people to access the care that they need. I think that’s such an important part of being a healthy human. And avoiding care is something we see within the trans community, too. You don’t know what kind of doctor you’re going to get. You don’t know if they’re going to be affirming. You don’t know. It can be really challenging. And so avoiding any kind of care then makes life even harder for people. So I think those are important points that you both brought up, that people should be aware of, that the challenges of finding just basic medical care for the intersex community.  

Can we talk for a minute about terminology? I know there are terms that become outdated and terms that are preferred and I just want to make sure that our listening audience is aware of those. Do either of you want to speak to that?

BRIA: Yeah. I’m happy to start. So just to provide a little bit of context for terminology, so in 2006 there was a consensus statement. And from that statement we got terms like Disorders of Sex Development to replace terms like Hermaphrodite and Intersex. Disorders of Sex Development or DSD, is still the term that’s most commonly used in the medical profession. It can also mean Differences of Sex Development. But it’s important for our listeners to know that DSD is not a term that’s universally accepted, especially not within the intersex community. We find it to be really pathologizing. So terms that you will see, terms like Variations, Sex Characteristics, sometimes you might even see terms like Variations of Sex Development. I think what’s important for people listening to know is that there are a lot of different terms to describe the same thing. And if there are people listening who might have a Variation, I want people to know that we are not forcing anybody to use the term “intersex”. I think that’s something that I find really beautiful about language is that when you find common language – like for me that term was intersex – it got me connected to community where I felt accepted. I didn’t have that before and, accepted across variations. I found commonality with people with different variations. And I was like, “Wow. Listening to you tell your story feels like you’re telling my story in so many ways.” And so I think that that’s the beauty of it. But you might also find that people don’t use any of these terms. Some people just know the specific medical term, for example like Klinefelter Syndrome or Turners or something that they were diagnosed with. And so what I like to tell people is, one, it’s important to meet people where they are. We’re not here telling people that they have to use the term intersex. I know that the term itself can feel very politically charged. But I want people to know that we are here to advocate for them whether they want to use the term intersex or not. I think the term that’s becoming more widely adopted is “variations in sex characteristics” because it’s more inclusive.

BONNIE: I would agree with that. And I think my priority would be, like Bria said, to make sure people know that they’re included. Because if we’re talking about a group of bodily experiences that are already marginalized, the worst-case scenario for me would be for people within that group of folks to feel further excluded. Then you’re even feeling more isolated. So I think the broadest, most descriptive thing, word, would be something like “variations in sex characteristics” which really is just sort of descriptive and not proscriptive and doesn’t leave anyone out and allows people to identity themselves however they wish to do that while still having a space for them to have their needs met and for them to have the support that they are looking for.

SHAUNA: Yeah. I think that that’s important. I have found in my experience like, if you know somebody with an intersex condition, with a variation, what do they prefer? If you actually know somebody, ask them what they prefer, what language they like to use and then try and use that. That feels like a common courtesy that we can offer all of our friends.

BONNIE: The one place I would say that might not be the case is if you’re interested in doing any research, you’re going to have to use search terms that you may not prefer to use in your daily speech. And I would say that having one foot in advocacy and mental health and another foot in medical, I think there are a lot of pediatric teams at least that have embraced “differences in sex development” which of course still has the lingering DSD feeling around it. And then some are even changing their websites and things to say “Clinic for Variations in Sex Development” or variations in sex characteristics. And then they’ll be more specific about who they see. So there’s some movement. And I think the reason for that is people like Bria and people who came before her and people who will come after her, to really think about listening to people with lived experience. Right? So when Bria tells their story, someone who’s a medical provider listens to it and says, “Oh, wow. That’s really a good – Oh wow. I never thought about it like that.” Or when they say, “I went to my pediatric endocrinologist and that person said, ‘I can’t see you anymore.’” They realize, “Oh, I really need to be explicit about what we can and can’t do here in our doctor/patient relationship.” So I think people’s stories, people’s bravery in telling their stories, whether it’s Buzzfeed or a podcast like this, I think that’s one of things that really does make an impression on the medical community because I do think that they’re – well most of them, many of them – are paying more attention than ever before.

SHAUNA: Yeah. I want to talk, briefly, about nonconsensual medical interventions for intersex folks and what the harm, what the consequences of that is, because a lot of times when we see anti-trans legislation around health care there are exceptions like parents are still able to – at least in my state – parents are still able to make decisions for their intersex infant. And so I want to talk about that for a minute. And either one of you can start.

BRIA: Yeah. So when we say intersex surgeries, or IGM which stands for Intersex Genital Mutilation, or nonconsensual surgeries, we’re referring to things like vaginoplasties where you’re creating or lengthening a vaginal canal. Or referring to hypospadias which is a surgery to relocate the urinary opening so that it’s at the tip of the penis. We’re talking about gonadectomies, removing the gonads, reducing the size of an enlarged clitoris or completely removing it. or changing the labia, the appearance of the labia or scrotum. And all of these surgeries are surgeries that are not medically necessary and oftentimes performed on children before the age of two years old. And so oftentimes, before they’re too young to meaningfully participate in the conversation happening about their body and are not able to provide informed consent. And these surgeries are being performed based on assumptions about a child’s eventual sexuality, a child’s eventual gender identity, how a child might choose or not choose how to use their bodies one day. And so, just to give you an example, something that I was told – and once I got connected to community, I found out that many of my peers were told – is that we had to, for example, have a vaginoplasty so that we’re able to engage in heteronormative penovaginal penetrative sex with our husbands one day. And when it comes to things like hypospadias repairs, so relocating the urinary opening so that it’s at the tip of the penis, that is a surgery that is performed on children so that they’re able to pee standing up. So these are not life-saving procedures. They are not medically necessary and, again, often performed based on a lot of assumptions, a lot of harmful assumptions, and oftentimes require multiple follow up procedures to correct a previous surgery.

BONNIE: I would say the only times really that something is medically necessary is if a child is not able to void, either urine or feces, or if an infant has or a child has – like Bria was mentioning earlier – Salt Wasting CAH when there is an actual adrenal crisis which requires medication daily, or occasionally when there is a gonadal malignancy or there’s a very high percentage chance that there will be one. But that needs to accompany many, many other factors to go into that decision. So again, we’ve gotten away from that and things like Complete CAS and that’s based largely on the movement of people who have CAS saying that their puberty was wonderful and that they have the hormones they need. And then there are some people who have CAS whose gonads sort of stop really producing any high level of any hormone, of testosterone. And that’s bad for bone health and things like that. So there’s a lot of ancillary questions that need to be answered. But I think the large majority of the things that Bria talked about – all of the things Bria talked about – are not life-saving. And so when you talk about consent, especially if it’s on a young child or a baby, that gets into how informed is the consent and how consensual is the consent. And there are places around the country that are really starting to do some very robust decision-making processes. And some of those involve speaking with someone who has both experienced a procedure and also someone who has not. And that’s still not ideal. But I think just throwing a piece of paper at someone and saying, “Do you understand the risks?” and “We need to do this.”  is not really informed consent. There’s an interesting study that people always refer to in which medical students were playing the roles of parents. And they were presented with a child’s case in a very medicalized way and then a very de-medicalized way. And the percentage of those “parents” who chose a surgical path versus those who didn’t was starkly different depending on how they were instructed or taught about what was happening with their child. And so I think we know that that’s human nature. I think parents want to do the best they can and if a doctor’s telling them this is what we need to do, how many of us would say no if a doctor’s telling us that this is what’s going to be the safest, best route for our child. So that’s a big area of research and interest too.

SHAUNA: Yeah. Thank you.

BRIA: And I just wanted to add that, just to clear up a misconception that we are not anti-surgery at interACT. We are pro informed consent and pro bodily autonomy. And just to further clarify, if a surgery is required so that a child is able to menstruate and urinate properly, that’s medically necessary. Right? But while a surgeon is down there, you don’t just perform a clitoroplasty or vaginoplasty is essentially what we’re saying.

BONNIE: Exactly.

SHAUNA: Perfect. Thank you for that. I would love to touch on the impact and erasure of intersex identities in legislation that targets trans folks and the stigma around intersex identities.

BRIA: Yeah. For sure. I guess for some – I’ll speak to how I believe intersex is involved or included in the LGBTQ+ umbrella just because it’s a question we get a lot. A lot of people tend to be confused. And so I just wanted to share some of my thoughts. I think, first and foremost, it has a lot to do with the shared struggles for the right to exist and be respected, as well as the overlap with trans people and the right to exist in our own gender identity presentation. As wild as that is to say, as well as the overlap with LGBQ in the right to freedom from conversion therapy because we do see these surgeries as a form of physical conversion therapy. But as well as the long historical overlap of intersex, gay, and trans people, really being lumped together in our mistreatment by doctors and by the court system. And that’s been the case for decades. But to speak a little bit more, what I will say is people might be aware of this but I’ll just mention it just in case – I think maybe, Shauna, you even mentioned it at the beginning of the podcast – but trans healthcare bans really do support intersex genital mutilation or IGM. And it’s important for people to know that all of the laws banning gender-affirming care for trans individuals have these so-called intersex exceptions. These exceptions specifically permit the practice of altering intersex children’s bodies, especially their genitals, before they’re able to consent to what surgeons think a boy or a girl's body is supposed to look like. And so just to give you an example when it comes to hormone replacement therapy, a lot of intersex children, as we have been talking about throughout the podcast, are forced to undergo something called a gonadectomy where they have their gonads removed. And when you remove a person’s gonads, you’re removing the organs that allow them to go through puberty properly. And so maybe intersex people rely on life-long hormonal replacement therapy. And so many of these laws may block intersex adolescents and adults from accessing hormones and other vital medical care, even if that care isn’t perceived as being related to a transition. Intersex individuals, who are also trans because that is also possible, are especially impacted such as they, again, need supplementary hormones and request hormones that just might not align with the sex that they were assigned at birth or with their perceived or assumed gender. And so that’s something important for folks to keep in mind. And then, another thing is when it comes to the bathroom and locker room policing. And so the erasure of gender and sex expression and social origin to conform to male and female appearances are really the root cause of the bathroom and locker room goals. And so there really is this endemic of even cisgender, endosex women – endosex meaning non-intersex – being targeted for using the women’s restroom by just people policing them and claiming that they’re transgender. And so this is an issue that affects all of us. And it’s an issue that we should all care about. For me, I also think about this as an intersectional issue as a black woman. And I really see, as a black, intersex women who is also nonbinary – which I don’t think we have time to get into all of my different identities and why I identify that way I do – but I really see this a patriarchal policing of women’s bodies and I acknowledge how it disproportionately affects women of color and the ways in which black women throughout history have been seen as inherently masculine. And it wasn’t that long ago that black women were not seen as women, period. And so we really need to talk about Anglo European standards of beauty that are really rooted in racism and transphobia, inner phobia and classism because these are the standards that society tells us that you have to adhere to these standards in order to claim “womanhood”. And there’s so many others, right? You have to have typical female reproductive organs because now we see a lot of the laws attempting to define sex by reproductive capacity. You have to be able to carry and birth a child, again engage in heteronormative penovaginal penetrative sex. And the list goes on and on and on.

SHAUNA: That was a fantastic little masterclass right there. That was fantastic. Thank you for that. Bonnie?

BONNIE: I don’t really have much to add. I think I agree with you, Shauna, that was a masterclass. I guess the only thing that really bothers me at a very basic level is the argument against gender-affirming care for trans kids is “How could this person possibly know who they are? And how could this person possibly know what they want?” Okay, that’s one argument. But then that same person would be likely to say, “We must tell this infant who they are, surgically, and make an irreversible decision about their anatomy before they can even speak. So here you’ve got a person who’s got sentience, who’s got a soul, who’s got a spirit, who’s got an identity, who wants to flourish and live in that identity. We’re not going to trust that. But we are going to trust our literal 50/50 choice here with this baby and assert this sex and, of course therefore gender identity, onto this child who hasn’t told us anything because they actually can’t say anything yet.” So that really grinds my gears because how can you sit with both of those opinions at the same time because they’re diametrically opposed to each other.

SHAUNA: Thank you for saying that. I’m the mom of a trans kid, and the gender-affirming care saved their life. And I see that every time I sit through a House committee or a Senate committee. So thank you for that. We are running out of time and I could just talk to you guys forever. But I want to hear your advice for parents of intersex children, or care providers of intersex folks.

BRIA: Yeah. For sure, You know, I think in the medical context to start, don’t be afraid to ask questions. That’s something that I didn’t know we were allowed to do. I also didn’t know that I was allowed to say no to uncomfortable examination. Oftentimes you’ll hear intersex people talk about the common experience of having a parade of residents coming in – especially because I was seen at a teaching hospital – having a parade of residents coming in to look at our bodies. And it’s really awkward and we don’t know that we’re allowed to say no to those examinations. And making sure that you’re actually providing informed consent. And in order to do that, you actually need to be informed. I think that, as I mentioned, I think we mentioned throughout this conversation, the reality is that many of these early surgeries are not urgent even though doctors might try to convince you otherwise. And so in terms of just general emotional and I think developmental wellbeing, as we mentioned shame and secrecy, can and does impact children. So I think finding ways to have age-appropriate conversations with your kids about their bodies instead of, like we mentioned, avoiding the topic altogether, is really important. And really helping them build resilience and confidence around their bodies by celebrating bodily diversity and modeling what that looks like for them. I think letting children grow into their identities over time because we all have the right to self-determination. It is important. And just please know that your child is not broken. Your child can thrive and fall in love and I think that love and openness matters more than perfection. But also, it’s really time to challenge our conceptions or misconceptions about what we perceive to be normal. That’s my advice.

SHAUNA: That’s fabulous advice for every parent, regardless of who your child is. That’s fabulous parenting advice.

BONNIE: My advice would be to keep an open mind about connecting with other parents as early as possible. I recently finished my doctoral degree. And for my dissertation I was interested in talking to people who had had really positive experiences of support and also people whose parents did or didn’t have that support so we could try to develop a program that would be sort of empowering and socially connected and sort of working on advocacy skills and things like that. And I didn’t actually ask this question, but almost every single parent I spoke with said something like, “I didn’t know how much meeting another parent would change my life until after it happened. And then I couldn’t imagine not having this connection.” I think intersex adults also say that. It’s a pretty common experience. But I think the thing that I noticed, even for myself, is that between learning about my child’s intersex variation and actually meeting somebody was about a two year, maybe one and a half year, span. I’m a little bit shy. I’m kind of introverted. So I wasn’t going to be out in the front looking for support but at the same time, knew that I really would benefit from it. I think what’s difficult is that the onus feels like it’s on you as the sort of new person to know what you’re even supposed to ask which can be very difficult. So what I’ve been trying to work on is some, like a podcast like this, other low  barriers to entry where we can sort of dip our toes in and sort of see what this whole world is about because maybe we didn’t even know it existed. And if we did know it existed, we certainly didn’t think we were going to be part of it. So I think there’s a sort of acculturation to the world of meeting other folks. And I think sometimes – I’ve been wrangling with this idea – I think sometimes even the word “support” can feel a little bit, not pathologizing, but I think people can think, “I don’t need support. I’m fine with this. I’m not, not fine with this. I’m okay.” But the reality is that parenting is difficult and a lot of parents thought, “Oh shoot. Am I going to have what it takes to be a good parent to this child? I wasn’t expecting this.” One of my participants said, I said “What do you think parents need, parents of intersex children should do or should know?” And they said, “All you really need is love and snacks.” And I thought, “Yeah. That is really as a parent, those are like the two key things.” So I think we can all do that. But I think we don’t know how much that resonance can feel just like a salve until you get it. So I think, even if people are shy, even if they’re not sure what to ask, just somehow being connected either passively and then maybe a little more interactively makes a really big difference. And there’s lots of us out here to welcome people with open arms. And so a platform like this is really, really helpful for that. So thank you for having us.

SHAUNA: Thank you for being here. Before I let you go, we ask the same two questions to all of our guests at the end of our episodes. The name Mama Dragons came about out of this fierceness of protecting our LGBTQ+ children. You know, we would breathe fire for them. So my question to both of you is, what are you fierce about? Bria?

BRIA: I am fierce about advocating for my people and bodily autonomy.

SHAUNA: Thank you. Bonnie?

BONNIE: I’m fierce about showing up for other parents who may not have had the benefit of the connections that I’ve had. I benefited so much from some parents who came before me and really helped me. I’m just fierce about showing up and paying that forward whenever I can, whatever time of day, night, weekend, doesn’t matter. I’ll take the time to talk with someone or text with someone or message with someone to help them in that moment.

SHAUNA: I love that. Okay, and our final question of the day. What is bringing you joy? We all need more joy in our lives. Bria, what’s bringing you joy?

BRIA: Yeah. I think joyful movement. We were talking before the episode about I just joined a kickball team. So I’ve been enjoying that. Especially with all the trauma related to my body, just finding any opportunity to do some joyful movement.

SHAUNA: That’s fantastic. Bonnie, what is bringing you joy?

BONNIE: Can I pick three things?

SHAUNA: Sure.

BONNIE: I would say being in nature is always one. Watching my kids become adults and thrive in their own various ways. And in spite of all the difficulty that we are all aware of in the world, I think, five, ten years ago, 2012 when I learned about my child’s variation, this was not happening. The social awareness and the movement, advocacy, community is so much more present. And there’s so much more opportunity to educate and support that that brings me a lot of joy. There are days that are harder than other days. That’s not debatable. But I think, overall, just people’s interest and willingness to learn really brings me a lot of joy.

SHAUNA: That is awesome. Thank you. And thanks everyone for turning in. We have done another episode on intersex conditions in the past. So if you’re interested in more info, check out episode 37, “Understanding Intersex” with Blair Ostler. Thank you again, Bria and Bonnie, for being with us. And I will link in the show notes all of the links to interACT and their resources. And I encourage everybody to check those out. A lot of times you may not know you have an intersex child or you may not know you have an intersex condition until later. So it’s just good information for everyone to know. So thank you, thank you for being with us today. We appreciate your time and knowledge.

BRIA: Thanks for having us.

BONNIE: Thanks, Shauna.

SARA: Thanks for joining us here In the Den. We want to tell you about free, public QPR classes. QPR is question, persuade, refer and it is a powerful suicide prevention training designed to equip you with the skills and confidence to recognize warning signs and respond when someone you love may be in crisis. The training is online, secure, and just two hours long. It’s a small time commitment that can make a life-saving difference. You can register for this training on our website at mamadragons.org.

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