June 14, 2024
On this episode of Talking Pediatrics, we are focusing on the “I” of LGBTQIA, which is the intersex community. It is estimated that about 2% of people worldwide have intersex traits and that there are around 40 different ways that people can express intersex traits or come to identify as intersex. Our guest Ly Baumgardt (it/he/they) is the intersex coordinator at TIGERRS and shares their expertise on how health care teams can best care for intersex patients..
Transcript
Dr. Kade Goepferd: This is Talking Pediatrics, a clinical podcast by Children’s Minnesota, home to the Kid Experts, where the complex is our every day. Each episode, we bring you intriguing stories and relevant pediatric health care information as we partner with you in the care of your patients. Our guests, data, ideas and practical tips will surprise, challenge, and perhaps change, how you care for kids.
Welcome to Talking Pediatrics. I’m your host, Dr. Kade Goepferd. During Pride Month in June, we celebrate the LGBTQIA+ community and all of the uniqueness and diversity within our community, which includes many of our patients and their family members.
On today’s episode of Talking Pediatrics, we are focusing on the I of LGBTQIA+, which is the intersex community. It is estimated that about 2% of people worldwide have intersex traits and that there are around 40 different ways that people can express intersex traits or come to identify as intersex. Joining me today is Ly Baumgardt pronouns, it, he, they, who is the intersex coordinator at TIGERRS, leading the adult intersex peer support group, creating resources for the local intersex community and their allies, and creating and training healthcare workers on how to best care for intersex patients.
Welcome Ly, it’s a pleasure to have you on our podcast.
Ly Baumgardt: Thank you so much.
Dr. Kade Goepferd: Really excited to have you joining us today. So I’d like to start with, first, there are probably people listening who don’t know what TIGERRS is, so I’d love to have you tell us about TIGERRS, and then tell us a little bit about your work there.
Ly Baumgardt: So TIGERRS stands for trans, intersex, gender expansive revolutionary resources and services, which is a bit of a mouthful, but TIGERRS are big, so no worries. What we do is we have programs for trans, intersex and gender expansive youth, five to 12, which is Little TIGERRS, and then 13 through 19 is Teen TIGERRS. And we have intergenerational events for people of all ages, all identities. One of those is Mondo Queer Beach Party, which is my favorite. We do that three times in the summer. And we also have the adult intersex support group. So that is peer led.
And then the youth programs are also youth led, and only run by intersex, trans, and intersex facilitators. So the youth are always in community, and those are youth led. So the youth will say, “We want to go to the science museum,” or, “We want to spend the day building Legos,” and we find ways to make that happen.
Dr. Kade Goepferd: For those who are not a part of the trans, gender diverse, or intersex community, can you talk about that importance of having those peer spaces and that type of peer support for kids who identify as intersex, or have other gender or sexual diverse identities?
Ly Baumgardt: I think that when you are in spaces in your life where you have to be the ambassador for your community and explain yourself over and over and over every day, having spaces where you don’t have to explain yourself, and you don’t have to represent a whole community, you get to just be a kid, are really important, because a lot of these kids are made to grow up really fast. They know that in a lot of places their government doesn’t like them, or they are in situations in schools, or with family that isn’t very supportive. So when they’re in spaces that is entirely meant for them, they get to just be a kid and they aren’t made to grow up too soon. They get to play, and talk about silly trans, and intersex, and gender expansive things, and make jokes that they don’t have to go over.
And that’s really needed, especially having mentors with your same identity that you can ask questions. And also seeing people, your identities having a future. A lot of these kids, I don’t think can imagine a future where they are happy, and healthy, and thriving, because they don’t see that anywhere. And so having mentors who they can ask questions on how to get to that point is really important.
Dr. Kade Goepferd: So we’re really going to talk a lot today about the intersex community, and intersex children and young adults, but I’d like to maybe just start with that word intersex. I think that many people who are practicing medicine are probably familiar with that word, but can you define that term for us, and maybe a little bit of how it came to be or where it comes from?
Ly Baumgardt: Intersex is a variety of sex variations that are atypical from what we would consider typical male or female sex. And you might be more common with DSD, which is disorders of sex development, but intersex people don’t really like that. There’s some older people who are intersex who might identify with it, but for the most part, especially younger intersex folks, you won’t see intersex people using that term because intersex people don’t view our variations as a disorder, just as a variation. So you might hear variation in sex characteristics or differences in sex characteristics as kind of a way to change the DSD acronym while still keeping the letters.
Dr. Kade Goepferd: Can you tell us a little bit more about that term intersex and where that came from?
Ly Baumgardt: A lot of people think of intersex people as hermaphrodites, and that is the word that used to be used for us, but that is considered a slur in the intersex community, and it’s also not medically true for humans. Humans can’t be hermaphroditic. You can use that for animals. It’s just not people.
So intersex is exactly just inter and sex. It’s not a third sex. There’s over 30 intersex variations. And intersex conditions don’t just affect sex characteristics. It also affects bone density. It can affect deafness, blindness, balance issues, cognitive disorders. It can cause the skin webbing. Intersex variations affect so much of the body, and while it primarily can affect sex characteristics, I sometimes feel like intersex is sort of a misnomer, or people focus on the sex characteristics part only, when instead of thinking of it as a holistic approach.
Dr. Kade Goepferd: I’d like to talk a little bit about how the medical system has, and can, and could interact with intersex young people particularly. So let’s start with historically, how have we as a medical system approached intersex children?
Ly Baumgardt: So the United States approach to intersex people really got big and started with a doctor called John Money. He was a psychologist. And it started with a case called the John/Joan case where there’s an endo sex. So there were two endo sex twins and there was a botch circumcision on one of the twins. And so Dr. Money said, “Why don’t we raise the one with botched circumcision to a full surgery, put this child on hormones, and raise this person as a girl. Change schools. Don’t let this child know what happened to them. And raise the other one as a boy, and we’re going to prove that socialization and surgery is going to change this kid’s gender.
And this kid was named David Reimer and grew up and just was not identifying as a woman, would stand up in the school bathroom. And then teenhood was like, “I’m going to harm myself if I’m not allowed to live as a boy.” And then the psychologists who were on the team that were not Dr. Money said, “You know what? We’ve got to tell this kid what actually happened.” And then it came out that David Reimer had gone through this botched circumcision and was not born an endosex female. And John Money never reported that David did not fully identify with womanhood. And so Dr. Money reported that it went perfectly, it went well and it worked when it didn’t.
Unfortunately, both David Reimer and his twin who were subjected to some experimentation by Dr. Money both committed suicide. And that was also never reported on by Dr. Money. And that became the medical standard on how we care for intersex patients, despite the fact it wasn’t done on an intersex person, and also it was a massive failure. But that became the standard in how we care for intersex kids, is medical intervention at birth, hormonal intervention when they hit puberty. And that is extremely harmful. We have so many stories of intersex people coming forward later in life saying that it was harmful and this isn’t the way to go.
Dr. Kade Goepferd: What you’re describing is that based on one person’s experimentation, based on a medical error, an unfortunate sort of surgical outcome, has led to a history in medicine where we attempt to sort of correct infants, and in most cases, infant’s or children’s genitalia to fit a more typical appearance. Is that what I’m getting?
Ly Baumgardt: Yes, absolutely. A majority of these surgeries are entirely cosmetic, and those surgeries can wait until a child can say what they identify as and what they would like for their body.
Dr. Kade Goepferd: And I would imagine that there are parents who are nervous about not assigning a gender identity to their child when they’re born, so not being able to say, “My child’s a girl, my child’s a boy,” and the doctors are offering them a path toward that definitive or binary identity. What would you say to people who say that it is psychologically alleviating to be able to assign a binary gender identity to an infant?
Ly Baumgardt: I would say it’s alleviating for the parents and not the child, and we should be putting the child first. There is this sort of misconception of if we don’t do surgery, the child’s going to be confused about their body. But I think it is more confusing for intersex people to grow up knowing that adults had done surgery on their body before they got a chance to know what their body is, and there’s more confusion of, “What would my body look like? Is this how I want my body?” and regret from that, not getting to know yourself. I think that that is where more regret comes from.
Dr. Kade Goepferd: So relative to the way that the medical community interacts with intersex infants, and children, and young people, you referenced the UN letter and the WPATH guidelines. What would be your recommendations for us as a medical community in terms of how we approach intersex young people?
Ly Baumgardt: There is a group in the United States called interACT and TIGERRS also does a lot of the trainings, but interACT has a bunch of guides for doctors on how to care for intersex patients. One of them is just thinking holistically, like, what is this variation due to the body? So one of the biggest issues that intersex people face is bone density issues and bone health. And that will be looked over or they’re not told because the main focus that some doctors will have is normalizing their sex characteristics, which isn’t as important for many intersex people as, “Hey, my bones keep breaking. Something seems wrong there.”
So focusing holistically, how does this variation affect them? Listening to a patient, listening on one, their pronouns, preferred name, what care outcomes the intersex person wants, just a lot of asking and communication, and not making the intersex person feel like they are in a freak show. That sounds really bad, but so many intersex people have the experience where they’re treated as a medical anomaly and doctors will tell their colleagues, “Hey, come into the room. Look at this strange body with me.” And that really makes intersex people feel ostracized, and othered, and like they’re broken, but intersex people aren’t weird. So even if this is something that you haven’t encountered before, being upfront with your intersex patient saying, “Hey, I haven’t worked with someone with this variation. Let’s go over how we can get you resources, and what you would like, and what you need in terms of privacy.”
Dr. Kade Goepferd: What would you recommend for folks who are maybe parents, or primary care providers, or people who aren’t going to be necessarily making the medical decisions when it comes to interventions or not interventions for intersex young people, but just supporting them to thrive as kids and young adults?
Ly Baumgardt: So one of the things that I recommend is just little posters in doctor’s offices, like with a little flag or a little sticker. I have a giant stack of stickers I got from interACT. It is straight up like six inches stacked stickers that say, “I stand with the intersex community,” because many intersex people have a lot of trauma around medicalization, making something that is very visibly like, hey, this is a safe place, is super important.
Books, I think people think that male and female are static categories and they mean the exact same thing, like all female people look a certain way, all male people look a certain way, but that is untrue. We’ve seen that a lot in trans conversations where people are like, “Define a woman,” and they describe one thing. And it’s like, “Well, what about women who can’t give birth? What about women with PCOS, and so they have a beard?”. A lot of intersex community is just breaking those categories down and saying, “Hey, there isn’t really categories. There’s just a wide spectrum.” And so acknowledging that spectrum and treating it like it’s normal.
So even if an intersex person comes to you and they’re like, “Is this abnormal?”. It might not be the most typical, but it’s completely normal. And giving them resources for community. There is a national support group called InterConnect, which is lovely. They do conferences every two years, I believe. And that was the first time I got to be in big intersex community. And that’s where I learned that intersex people actually are supposed to be taking hormones differently from endosex trans patients. And that is all community knowledge. And so understanding that there’s going to be community knowledge that the medical community just might not be as caught up on because intersex people know their bodies better than anyone else. And so if you have an intersex person in your life, giving them spaces to be around other intersex people, and learn from people who understand their bodies on an intimate basis.
Dr. Kade Goepferd: Are there examples or stories that you might want to leave us with of times when things have gone really well for an intersex young person at the doctor’s office, or in an encounter with a medical care provider that could be examples for how we could do this really well?
Ly Baumgardt: Unfortunately, no. There are two hospitals in the country that have said that they will stop doing one or two surgeries on intersex, Infant Lurie Children’s Hospital has stopped doing clitorectomies, and Boston Children has stopped doing clitorectomies, and I believe vaginoplasties on intersex children. Most of these surgeries are done at a medium of 11 months old, and so they have stopped doing those surgeries, which is great.
It’s not enough. We should be following in their footsteps. Intersex activists have led protests outside of these hospitals, and we’ve heard those stories from intersex activists, and that is the closest I would say that we’ve really gotten to intersex people having a good experience. In all of the support group meetings that I’ve run, and spaces I’ve been in, I haven’t heard positive experiences yet. And maybe people are just holding those experiences really close to the chest because they’re really emotional and hard.
But I will also say these identities have existed for so, so long. So I am a Jewish person. And in Jewish culture, there were originally six sexes and now eight sexes that are recognized. And we have midrashes, which are like essays from the third century talking about intersex people. So intersex people have always existed similarly to two-spirit identities, which is different for each tribe. It’s not just a monoliths, but many tribes had specific roles for intersex people. So knowing that these intersex people existed forever historically without being seen as deformities is something that I think we can draw from in modern times. Knowing that intersex people used to be considered sacred or especially beautiful is really important for making sure that intersex people don’t see themselves as deformed. They see themselves as a part of a long, beautiful part of human history and experience.
Dr. Kade Goepferd: Anything else you’d like to leave us with before we close today?
Ly Baumgardt: Last two things. One, the intersex flag is a yellow square with a purple circle. And the purple circle is to symbolize that intersex people are whole, which is very interesting because there’s a couple of religious groups that specifically see intersex people as being their own soulmate, and I think that that’s really beautiful.
And then my favorite piece of trans and intersex solidarity, is I was running a trans, intersex solidarity group for a bunch of students, and I had two deaf students in the room. And my bio mom is hard of hearing, so I know a little bit of sign. And I asked the student, “I know the sign for transgender, but what is the sign for intersex?”. And the sign for trans and intersex are extremely similar. They’re right in front of the chest. The sign for intersex is I to X, and the sign for trans is beautiful in front of the heart, which is where the intersex sign is signed. And I think that that’s really beautiful trans intersex solidarity, just a reminder that we are so similar, and our communities are a Venn diagram with a really big middle circle. And just reminding that we will get liberation together. It will happen in our lifetime. A better world is possible.
If you are looking for resources for trans, and intersex people, and gender expansive people that’s local, our website is TIGERRS, T-I-G-E-R-R-S.org. We have a 80-page resource directory on local trans resources everywhere across the state. It is not just the metro, and we also have resources for intersex folks. It is open to people who are questioning if they have an intersex variation, who need to get a diagnosis, are not sure if they have one. So if you are questioning, if you have an intersex variation, come on by.
My email is [email protected]. We have resources that are, “Hey, I’m questioning if I’m intersex. I need a booklet.” There is also interACT. If you Google that, please Google interACT, A-C-T, all caps, intersex. And there’s InterConnect, which is a support group.
Dr. Kade Goepferd: Thank you, Ly, for joining me today. It’s been a pleasure having you on the podcast.
Ly Baumgardt: Thank you so much.
Dr. Kade Goepferd: Thank you for listening to Talking Pediatrics. Come back next time for a new episode with our caregivers and experts in pediatric health. Our showrunner is Cora Nelson. Episodes are produced, engineered and edited by Jake Beaver and Patrick Bixler. Our marketing representatives are Amie Juba and Krithika Devanathan. For information and additional episodes, check us out on your favorite podcast platform or go to childrensmn.org/talkingpediatrics.