Improving Health Care for Trans Youth

SHANOOR SEERVAI: Bills targeting LGBTQ+ people are under consideration in state legislatures across the country. The proposed changes would make it more difficult for transgender people to access health care in many states, and it is already a challenge, particularly for trans youth. What could be done to support trans and nonbinary teens seeking care?

I’m Shanoor Seervai, and on today’s episode of The Dose, we’re bringing this question to Austin Johnson, an assistant professor of sociology at Kenyon College. He’s also the research and policy director at the Campaign for Southern Equality, an advocacy and direct services organization. We’re going to talk about gaps in the data, his research on the health and well-being of LGBTQ+ people in the South, the extremely fraught policy landscape, and more.

Dr. Johnson, welcome to the show.

AUSTIN JOHNSON: Thank you so much for having me, Shanoor. It’s great to be here.

SHANOOR SEERVAI: Let’s start this conversation with what’s critical to your work and work in the field right now — data. Data on the health of trans people are not robust but do exist. Can you explain what data are available and then we’ll talk about what’s missing?

AUSTIN JOHNSON: Yeah, absolutely. So as you mentioned, there is a dearth of data, or at least good data, on trans people, especially in the U.S. where trans people have traditionally been seen as deviant in terms of medical science and something to understand from a dominant perspective or a problem to be solved within institutions. And in recent years, we’ve seen trans people themselves in academia, myself included, or in other institutions, kind of take charge of data collection and the conversation around what kinds of questions do we need to ask surrounding trans experience, and to what end? Is it a problem to be solved within trans experience or is it a problem to be solved within institutions who are unprepared to welcome and include trans people?

SHANOOR SEERVAI: What did you find in your own experience, you mentioned, as a trans person? What needs to shift?

AUSTIN JOHNSON: Yeah. So as a young trans researcher, young trans student, I found myself drawn to research that was focused on understanding trans people as I was trying to understand myself. And largely what I found was negative problem-based research that kind of got my experience wrong and got the experience of those folks I was close to in my community wrong, or it just didn’t land right with me. And so I really wanted to figure out how to ask questions that improve life chances of trans people versus trying to explain our life experiences to people who didn’t get it.

As a young researcher, I found that my experience as a trans person and other folks’ experiences as trans people were really depicted in monolithic terms — as if we were all the same, we all had the same concerns, the same medical issues, the same issues accessing medical treatment, the same desires to access medical treatment — and it really painted our experience as a solitary, single-issue community.

And what I’ve found both as a trans person and as a researcher, is that our community is as diverse as there are people in it. And so, as you see my research and others in the community, we really try to draw attention to that diversity while still focusing on the real institutional, interactional, and individual issues that trans people face while not kind of boiling it down to a simple story that can be digested by the public.

SHANOOR SEERVAI: And are there studies, mechanisms, infrastructure in place for you to gather and analyze the data you need to get at some of this diversity you describe?

AUSTIN JOHNSON: In some ways, yes, and in some ways, no. As a sociologist by training, we’re encouraged in graduate school to seek out data that exists, do secondary analysis of large datasets to see how trans people fare and maybe census data or large data around health and well-being or education. But what I’ve found and what others have found is that no one asks people in those datasets if they’re trans, so it’s really hard to know what’s going on. And so I have really worked to gather my own data and I partner with nonprofit organizations throughout the country, but primarily in the U.S. Southeast where I’m from, to really go to the community, get the data that I need to answer the questions that I have. And I’ve been lucky enough to do that with Campaign for Southern Equality among other organizations.

But in addition to that, the Center for Applied Trans Studies is a really great organization that brings together trans scholars from around the world who were doing this kind of work and really centering our understanding of trans experience in the data collection process. And so there has been, in recent years, a lot more data made available that I would say is more accurate, more useful, and more sensitive to trans experience.

SHANOOR SEERVAI: And to the end that this data would lead to more meaningful health care and health interventions, what is key? What’s really needed right now?

AUSTIN JOHNSON: We really need to understand trans people’s experiences on their terms. I think we’ve been inundated with news items, legislation, even academic conversations in some ways, that center hysteria in a lot of ways around trans youth and the dangers of gender-affirming health care. But when you really look at community-based data, the danger is in demonizing trans youth and alienating trans youth from medical care, from social support, whether that’s their peers or their teachers or their doctors or their families. And so what we need to understand not is how to limit resources for trans people in order to satisfy the fears of dominant society, but really how to address the key issues that folks face, which is institutional alienation — whether that institution is your family, your school, your health care provider, your faith institution — and how to address the issues that arise from that.

SHANOOR SEERVAI: And I just want to note that we’re talking about gender-affirming care, but also health care more broadly, which trans people struggle to access. Could you talk about how having more data would help with that?

AUSTIN JOHNSON: Absolutely. So as I mentioned earlier, there’s this kind of monolithic idea about trans people and health care that it’s about gender-affirming services like you just said, and it doesn’t really take into account that most of the time when trans people are trying to access care, it’s maybe for a flu shot or a sinus infection or routine annual checkups. But when we focus so much on the research that does exist on gender-affirming care, we miss out on what’s happening at a primary care physician’s office. Where folks may face rejection as early as the waiting room or in the intake process or when they’re asked insensitive or invasive questions in a routine checkup.

And so more research would give us kind of a more nuanced and more in-depth look at what trans people’s experiences are, rather than only seeing trans care as about the moment of gender-affirming care and not everything that comes before, during, and after that process.

I can count on maybe one hand the number of doctors I’ve talked to about gender-affirming care in the last 10 years, but I regularly see doctors. I mean, we’re in a global pandemic and more looming, and so I’m often interacting with providers and what our data shows and what other folks’ data show, and what I wish there was more of, is what that’s like for us just to get maybe a COVID shot or to ask about monkeypox vaccinations or to talk about general issues like a rash that you have and you need to talk to someone without it being a trans rash. It’s just a rash on a trans person.

SHANOOR SEERVAI: Right. What you said, as well as sinus infection, that’s the same. Everyone’s getting the same COVID shot.

AUSTIN JOHNSON: Right. But you’re treated kind of differently or in my experience and in my data, I see that people aren’t just treated like someone having a sinus infection or a COVID shot. That there’s an extra layer of the trans sinus infection, the trans COVID shot, because regardless of the type of care, there’s always already a gendered interaction. And one of the first ways we learn to relate to people is with their pronouns or how we react based on a gendered way of interacting.

And when I’m in a doctor’s office or a trans person is in a doctor’s office, you don’t want that to get in the way of the sinus infection, diagnosis, and treatment, but sometimes it does. And I don’t think it is intentional. Maybe it is sometimes, but sometimes it’s just awkwardness and people don’t have enough information to prepare for those moments.

SHANOOR SEERVAI: And if they had more information, perhaps doctors’ offices could be trained to be more sensitive to some of these issues and remove these early obstacles.

AUSTIN JOHNSON: Absolutely. And some of the work I do with Campaign for Southern Equality is evidence-based trainings for medical providers and even clinical and administrative staff and medical offices throughout the South, where we talk about how important it is to even have reading material and visuals in your waiting room that depict the folks you’re serving so that people feel comfortable and welcome in that space before anyone even talks to them. And in that case, so if someone maybe misgenders you or says the wrong thing in an exam room, you may feel more empowered to correct them or to suggest a different way of being if there are signals throughout that you are open and you are welcoming to that criticism.

SHANOOR SEERVAI: And so this sort of points towards your work around issues of transnormativity, and that informs the kind of research you and your colleagues do or might want to do in the future. So can you briefly just start by telling us what transnormativity is?

AUSTIN JOHNSON: Yeah, it’s a fancy sociology word for accountability to traditional ways of doing gender and specifically ways of being trans that relies on dominant mainstream narratives that are perhaps accurate for some people but I’ve found mostly kind of off for the large group of the community. And those narratives really are that trans people have this lifelong identification with a binary gender, that there is some kind of innate essential being inside of them that they’ve been pulled toward throughout their life, and that they require some kind of medical intervention to kind of satisfy or alleviate gender dysphoria.

It’s really based on white, middle-class, able-bodied heterosexual norms that assume that when you transition you’re going to be a heterosexual, cisgender-passing person who kind of assimilates into dominant culture. And whether that’s in your sexual practices, your health care practices, your everyday interests, that you will now be unrecognizable as a trans person. And what that does is give messages to our service providers, whether it’s a health care provider or a teacher or someone in our family even, that there’s a way to relate to us that is affirming and right.

And when you treat someone as if this is the affirming right way to be, it is kind of putting them on a path that maybe they don’t want to take. Whether that’s gender-affirming care or specific kinds of pronouns or name choice or even career paths. I’ve seen in some of my trans students who come to me and say, “Well, I’m transitioning. I think I should do this kind of career. Do you think that’s appropriate for me?” And they’re not talking about their interest necessarily, but now they’re a man and should they major in education or should they pursue education? And those kinds of things really limit, not only the way others view us, but what we can view for ourselves.

And I see this both in conservative narratives and rhetoric, but also in progressive rhetoric sometimes. So, there’s kind of the right-wing conservative view of the way that gender should be a rigid binary experience. And then I also see this sometimes coming in with these intracommunity practices that police nonbinary identities, police kind of medical transition trajectories, and people who experience detransition in their own life or starting hormones, stopping hormones, using one pronoun, changing that.

And so I think that this is bigger than just kind of a transphobic right-wing agenda, but it really speaks to how we all learn about and see gender. So transnormativity tries to explain that process holistically. But then you also kind of have this role that rubric plays in consolidating diverse sets of social practices and to bite-size monolithic targets for “This is the way you should be” prescriptive targets. Instead of being a trans person who can access medical care, you are not a trans person unless you do access medical care.

And so these standards, maybe while helping some folks and really empowering some people, I think that’s really important, transnormativity is both empowering and that it shines a spotlight on how important gender-affirming care is and empowering people to access that, while at the same time constraining the definition and possibilities for trans people who do not want to access that, kind of invalidating them.

SHANOOR SEERVAI: And so, how did these standards and norms impact funding for research, but also for meaningful care interventions?

AUSTIN JOHNSON: Yeah. So, we were thinking about how you talk about trans access to health care. Transnormativity would immediately center on gender-affirming care rather than how trans people need access to care, broadly speaking. Transnormativity as an ideology, I think — and beyond that, patriarchy, heteronormativity, all of those kinds of biased ideologies that are more prescriptive — really limit how we are able to understand what the issues are, what’s important to trans people, what affects their lives individually, and how we address that.

In terms of research, I think that a lot of . . . and discourse broadly, the way that we talk about trans experience doesn’t allow for ambiguity. And that’s again, on the right and the left, whether you’re pro-trans community or anti-trans community, it relies on a certain amount of assuredness or certainty where there is one way, this is the target, this is who we should support, or this is who we should limit.

And in doing that, it kind of forecloses inquiry into these other more slippery experiences of gender, such as detransition practices. I have colleagues who study detransition experiences who are trans, and they are kind of ostracized within trans circles sometimes as giving fire to these right-wing attacks on trans experience as a phase or as not real in some ways. But that attack doesn’t really recognize that gender, if it is constructed and if it is socially experienced, it is changing for all of us at all times. And how we experience it in one context changes in another.

SHANOOR SEERVAI: So let’s talk about how this is playing out in the policy landscape. The past couple of years have been full of news from around the country and significantly in the South, which you study, about legislative initiatives that would severely restrict the rights of transgender youth. So Arkansas, for example, became the first state in the nation to ban medical care for trans youth. And a federal judge has temporarily blocked enforcement but, looking ahead, where do you think that such legislative efforts will land?

AUSTIN JOHNSON: It’s really scary to think about because when you look at the efforts to limit access for trans youth in terms of health care, gender-affirming care, my mind automatically goes to, “Well, this is a practice round for limiting adults’ access to gender-affirming care.” And we see this in Florida earlier this summer when Ron DeSantis made a comment that they don’t want to stop with youth and they want to stop this kind of harmful treatment broadly for everyone. And so I see this as a long game or a long fight for our community and for people who are sympathetic to access to health care for all people.

I think that when it comes to youth especially, when we look at the mental health consequences of alienation, kind of rejection from family and friends, discrimination and bias, when you have this state-sponsored legislative harassment added onto that, it only exacerbates those mental health problems. And so, I see this leading to greater inequalities for trans people, worse health outcomes for trans people. Even if we’re not looking at access to gender-affirming care, we’re looking at kind of suicidal ideation, higher rates of depression and anxiety, higher rates of youth homelessness, higher rates of violence against trans people, trans youth especially who don’t have the resources to exit harmful situations or kind of go across state lines to get the care they need.

As an adult who is middle class with insurance, I have the freedom in some ways to seek out care in other parts of the country and go get that care and do the things that I need to do to access it. But I think about trans youth whose families aren’t supportive and whose families are being told by their legislators that they shouldn’t be supportive, and that in fact, if they are, then they are committing a crime. And I see this leading to a lot of hardship, a lot of unnecessary pain for young people who are already treated poorly.

SHANOOR SEERVAI: And given this environment, for trans individuals who are seeking gender-affirming care or just health care that’s sensitive to whatever their specific needs may be, is it more likely that they would find help and community online or in real life? Does this depend on where you live?

AUSTIN JOHNSON: It definitely depends on where you live. I study social support in trans of mental health, and we see that in some cases, even having access to at least one peer who’s trans will cut the rates of suicidality in half in some cases. So just knowing someone else exists, having this support network, is really great. In states like Florida and other states in the deep South that now have these policies where, if a service provider, whether it’s a teacher or a doctor, knows that someone is having gender identity dysphoria or thinking about themselves in trans or even queer terms, they are required to tell the parent.

And in those cases, I think that it really does reduce in-person social support because people are scared to tell people about themselves, they’re scared to voice this, whether it’s to a friend or an authority figure in their life who might support them. And so people go online and seek that support out, which is great, we have online communities. My first trans friend was on YouTube in the mid-aughts. I got a lot of really great support there, but not a lot of accurate information about my experience. And so, in the absence of in-person support networks and authority figures like health care providers or teachers, you’re getting a lot of information that maybe isn’t as good for you as other people.

And I encountered my first experience of transnormativity in those YouTube spaces, where there was a lot of trans enough rhetoric of, “Who can say they’re trans and who can represent our community in this space?” And when you’re limited in the options for where you can go to get that support, the varieties of your experience that you see are limited as well. And so I think there are definitely benefits to online space. I’m very grateful for the trans YouTube community of the early 2000s. And also, I wish I could have gone to a doctor, a teacher, a parent, a friend in person.

SHANOOR SEERVAI: And that’s where we need to see change at the policy level so that some of these systems are institutionalized. And so, if federal policymakers wanted to expand access to medical care for trans youth, what should they do, both immediately and then looking at 10 years down the line, where some of these state legislative initiatives will land?

AUSTIN JOHNSON: I think that in a lot of cases, state legislatures should stay out of health care exam rooms, generally speaking. And when you look at the statements that are put out by medical associations, whether it’s endocrinology, whether it’s general practitioners, whether it’s mental health providers in the U.S., you see these large national organizations putting out statements in support of health care for trans people. Whether it is gender-affirming care in a very specific way, or if it’s just affirming generalized care, we see that providers are on the right side here.

Providers know what’s good for their patients, what benefits them. And when legislators who are untrained and uneducated or differently educated, they mess things up generally. And so I would say for folks who want to help people, listen to the doctors, listen to the medical providers who are experts on this topic, and find ways to pair them with local organizations, local trans and queer organizations, who are already serving this population.

Find ways to couple institutional support for authority to do what they know — teachers to support youth in the way they know how, doctors to provide care in the way they know how — with local agencies that are embedded in communities, who rely on community-based data, who already talk to trans people, who maybe are trans themselves, to really guide them in kind of identifying the legitimate primary issues for trans people, instead of relying on rhetoric that is either hyperbolic or sensationalist, that invents problems that don’t exist.

And so I would say the way to address it is to make sure you center trans experience, center trans people’s understandings of their health care, their education, their family life, and rely on trans study scholarship that is led by trans people to change your organization. Whether you are front-office staff member at a health care clinic, find ways to incorporate name and pronoun questions into your intake forms. Find ways to include things on your walls that show people you are an asset or you are a resource for them, that you welcome them. And bring folks into your institution that are charged with making sure that everyone you serve feels welcome there, based on trans people’s needs and the information that they’ve helped create.

SHANOOR SEERVAI: Dr. Austin Johnson, thank you so much for joining me on The Dose today.

AUSTIN JOHNSON: Thank you so much. It was great to be here.

SHANOOR SEERVAI: This episode of The Dose was produced by Jody Becker, Mickey Capper, Naomi Leibowitz, and Joshua Tallman. Special thanks to Barry Scholl for editing, Jen Wilson and Rose Wong for our art and design, and Paul Frame for web support. Our theme music is “Arizona Moon” by Blue Dot Sessions. Our website is thedose.show. There you’ll find show notes and other resources. That’s it for The Dose. I’m Shanoor Seervai. Thank you for listening.