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Health Affairs Editor-in-Chief Alan Weil interviews Rice University's Madeline Smith-Johnson on a paper in the October 2022 issue of Health Affairs assessing rates of disability among transgender and cisgender adults.
Each week, Health Affairs' Rob Lott brings you in-depth conversations with leading researchers and influencers shaping the big ideas in health policy and the health care industry.
A Health Podyssey goes beyond the pages of the health policy journal Health Affairs to tell stories behind the research and share policy implications. Learn how academics and economists frame their research questions and journey to the intersection of health, health care, and policy. Health policy nerds rejoice! This podcast is for you.
00;00;00;05 - 00;00;32;20
Alan Weil
Hello and welcome to A Health Podyssey. I'm your host, Alan Weil. The entire October issue of health affairs is focused on the relationship between disability and health. People who are transgender are more likely to experience poor health and barriers to health care services than people who are cisgender, meaning their gender identity aligns with their sex assigned at birth. But the relationship between health and disability is complex.
00;00;33;06 - 00;00;56;04
Alan Weil
So if we want to have a more complete picture of the experience of people who are transgender, we need to know about their disability status as well as their health status. Understanding rates of disability for people who are transgender is the topic of today's episode of A Health Podyssey. I'm here with Madeline Smith-Johnson, a graduate student in the Department of Sociology at Rice University.
00;00;56;22 - 00;01;19;16
Alan Weil
Smith-Johnson published a paper in the October 2022 issue of Health Affairs assessing rates of disability among transgender and cisgender adults. They found that transgender adults have higher rates of disability at younger ages than cisgender adults. We'll discuss this finding and more in today's episode. Madeline Smith-Johnson, welcome to the program.
00;01;20;05 - 00;01;21;22
Madeline Smith-Johnson
Thank you so much. It's great to be here.
00;01;22;22 - 00;01;50;15
Alan Weil
Thank you for joining me in this conversation. So we're talking here, of course, about disability, but there is already a fairly significant literature, some of which we've published in Health Affairs, about health and health status of transgender adults. What can you tell us about health, health care use, access to health care to sort of the health side of the equation when it comes to the comparison between transgender adults and cisgender adults?
00;01;51;04 - 00;02;17;09
Madeline Smith-Johnson
Yeah, that's right. So we know across the board, as the literature has been growing really in the last ten years, especially that transgender adults have poorer physical and mental health outcomes, relative to cisgender adults. And I'll kind of complicate this a little bit, but I want to give the top line answer to your question first, I think, which is that we know that trans people tend to have poorer self-rated health.
00;02;17;16 - 00;02;43;19
Madeline Smith-Johnson
There has been evidence of more disability relative to cisgender peers, more chronic disease and then poorer health behaviors. So this might indicate less resources to coping with stress because we see higher rates of alcohol use and smoking and drug use in some studies. And then, like you mentioned, we also see poorer health care access. So we have high rates of uninsurance in this population.
00;02;43;19 - 00;03;06;02
Madeline Smith-Johnson
We have high rates of care avoidance in the population that does have access. And that's really due to frequent experiences of discrimination and sort of not fitting what health care settings kind of expect to see in a patient. But I think when we're thinking about the difference between transgender and cisgender, on the one hand we have to think about data.
00;03;06;02 - 00;03;41;22
Madeline Smith-Johnson
So what are we measuring and who's the comparison group? There's been a lot of literature on transgender health that's looked at subgroup differences, so differences within the gender minority population. And then there's also a body of literature that's compared transgender adults to sexual minority populations. And so I would say that even though the literature has grown quite a bit in the last ten years, there's some pretty significant gains to be made in terms of the big population level demographic picture of where and why and when do we see these sorts of health disparities.
00;03;42;04 - 00;04;04;15
Alan Weil
So I appreciate you bringing that up. I mean, we do have growing evidence, but it's from a really, really low base. We have very limited data sources that have accurate identification of transgender populations. So there's a lot of work to do on the basic question of health, health status, health access for transgender adults. I completely agree with you.
00;04;05;23 - 00;04;33;23
Alan Weil
You built, however, in a somewhat different direction by instead of going deeper on the health status side, you started looking at disability. And I guess I'd ask, given the disparities that you already just went over with us with respect to health and health care access, did you come in with certain expectations regarding what you would find about prevalence of disability among transgender adults compared to cisgender adults?
00;04;34;08 - 00;05;03;23
Madeline Smith-Johnson
I would say I did, but there were several possibilities that I foresaw. So I'm really interested in gender disparities writ large and thinking about disability like I do in this paper, more along the lines of functional limitations. So asking people to self-report, which of their daily activities they have serious difficulty with is a really interesting case in health disparities literature, because most of the literature looks at cisgender men and women usually just calling them men and women.
00;05;04;02 - 00;05;27;06
Madeline Smith-Johnson
And we find or see often that cisgender women have higher rates of morbid conditions. So illness writ large. But these, a lot of these patterns tend to sort of level out with age. You can think of the idea that the health challenges that come with age, if you live long enough to get to a certain point, eventually come for everyone.
00;05;27;28 - 00;05;52;02
Madeline Smith-Johnson
So on the one hand, I thought maybe age will level some of these health disparities that we see in the transgender population. And maybe there will be a bit of a gap in the younger or especially middle age cohorts, but we'll sort of see it closed at the elder stage of my analysis. But on the other hand, I think it's interesting to think about how, especially in an analysis like this, which is cross-sectional.
00;05;52;02 - 00;06;14;06
Madeline Smith-Johnson
So I'm not following people over time, the way that the disparity for older people that I capture is a snapshot of a particular cohort. And so these are people who lived during a particular social context and what it means to be an older trans person might very well be very different from what it means to be in your twenties as a transgender person.
00;06;14;06 - 00;06;35;25
Madeline Smith-Johnson
We can think about the Stonewall generation and sort of the strides in LGBT acceptance broadly that they might have seen, but also the stress that would accompany that type of life. And so the health burden that could accompany that as well. So that's sort of the argument for seeing extensive disparities at the oldest age of the spectrum as well.
00;06;36;02 - 00;06;53;07
Madeline Smith-Johnson
And then there's sort of like a pet project in it. For me as well, where functional limitations are sort of an interesting case in that we don't see the disparity between men and women level out as they get older. And so I was just really curious where transgender people fit into that previously established pattern.
00;06;53;22 - 00;07;24;12
Alan Weil
Okay. Well, I like the different dimensions of analysis you're looking at here. So just as you gave us sort of the top line on health, why don't you give us the top line? What did you find in the aggregate with respect to the differences between transgender and cisgender adults when it comes to functional limitations, disability, and then a little bit of these the regression results where you start looking at other factors as you discussed.
00;07;24;25 - 00;07;51;14
Madeline Smith-Johnson
Absolutely. So the top takeaway is that transgender adults have higher rates of disability than non-transgender men and women. So cisgender men and women at every age group. And it's also the case that the gap widens a bit as you go across the age categories. So the older, the more disparity we see. And so this is speaking after I've introduced control.
00;07;51;14 - 00;08;14;28
Madeline Smith-Johnson
So I control for things like socioeconomic status, demographic characteristics, like whether you're a racial minority or you're married, and then certain health behaviors like smoking and drinking and obesity, because these are all factors that we know might predispose certain groups to have higher rates of disability. So I wanted to know all that held equal. Do we still see this sort of disparity?
00;08;15;11 - 00;08;39;17
Madeline Smith-Johnson
And it was it's actually quite shocking to see. I mean, they at the youngest ages have about 20% chance of disability, which is nearly double that of cisgender men. So that's around 2025. And there's a 40% chance of reporting any functional limitation at the oldest age group. So you can think around 75. And again, this is more than double what we see among cisgender men.
00;08;40;27 - 00;09;04;22
Madeline Smith-Johnson
And so the interesting thing is, as I move from the baseline model that just looks at sort of the association between gender, age and disability, and I start adding controls for things like socioeconomic status and whether you're a racial minority, for example, trans people in my descriptive statistics or just in my sample, were more likely to be a racial minority.
00;09;05;00 - 00;09;37;28
Madeline Smith-Johnson
They were more likely to be low income and only have a high school degree. So I know that these things matter, but as I introduce them, they do sort of reduce the gap, they reduce the size of the disparity, but they don't erase it completely. And so even after we control for sort of the things in life that predispose you to disability, there's something else unmeasured going on and that could be care avoidance, which I don't have measures for in the surface or other types of things that I'm happy to get into.
00;09;38;17 - 00;10;04;10
Madeline Smith-Johnson
But I think it's just really remarkable that in the surface, which is a dataset that has pretty robust controls for especially socioeconomic status, and there has been this previously established finding that trans people tend to be poorer and tend to have fewer access to resources like education. We would still see this health component kind of striding out in the final results.
00;10;04;25 - 00;10;41;18
Alan Weil
So you find this really large and quite disturbing difference. You've got a little bit into some of the reasons we might be seeing those results. I'd like to dive deeper into that. We'll do that after we take a short break. And we're back. I'm speaking with Madeline Smith-Johnson about the higher rates of disability among transgender adults than cisgender adults.
00;10;41;18 - 00;11;09;08
Alan Weil
Before the break, we looked at the top line, which isn't just that the rates are higher, but that even after controlling for various demographic characteristics, health behaviors and the like, which we know are correlated with disability, those differences remain, which suggests that there's something systemic going on that is not about those other characteristics. Now I realize that in any analysis you only have so much data available.
00;11;09;08 - 00;11;30;03
Alan Weil
There are so many, only some variables you can include and many that are not there. But this is exploratory work. You're building a field of knowledge here. And so there's not a whole lot to go on from a data perspective. But as you noted at the outset, we have a fair amount of data around health and health care access and use.
00;11;30;18 - 00;11;45;17
Alan Weil
So as you look at the results you found in your work and you've alluded to some of these at the earlier stages of our conversation, can you say a little more about what you think is going on and why you think it's that?
00;11;46;05 - 00;12;11;03
Madeline Smith-Johnson
So as I read the people who have come before me and started to discover various disparities, especially in physical health, I think about it according to two sort of components or two levels. The first is what I already alluded to the stigma and discrimination that trans people experience over the course of their life. So this is also known as minority stress theory.
00;12;11;03 - 00;12;36;06
Madeline Smith-Johnson
And it's the idea that being exposed to constant, both interpersonal and institutional stigma. So going to the doctor and having your doctor misunderstand your gender identity or outright refuse you care versus the types of policies that we might think of that are stigmatizing, like not being able to have your correct gender representation on your passport or your driver's license.
00;12;36;06 - 00;13;02;26
Madeline Smith-Johnson
Those all add up and they create a stress response over the life course that can result in some of these chronic conditions and even potentially impact the body so much that you have excess disability. So that's one reason I will say, though, that it's harder for me to make sense of this gap solely through minority stress because of what we see at the youngest ages.
00;13;03;09 - 00;13;30;08
Madeline Smith-Johnson
So the idea that the gap is widening, but I will say because I'm only looking at cohorts of people, I'm not able to say whether it's sort of the accumulation of stress over one person's life increasingly sort of brings disability or difficulty. So I'm not able to comment on that, but I do think it's really concerning that this gap is already quite sizable and present at the youngest age group.
00;13;30;08 - 00;13;57;07
Madeline Smith-Johnson
So at age 18, as the youngest age that I capture and this suggests to me that there's something going on beyond minority stress that's predisposing trans people as a category, as a minority group to experience more difficulty in their lives. The only thing I think of at this point that might begin to explain that are the other types of barriers that trans people face for wellness.
00;13;57;07 - 00;14;21;21
Madeline Smith-Johnson
If we think of wellness much more broadly. So on the one hand, you have stigma and that's important. But the second bucket of things is more about material resources and access to sort of those things that help you live well and live longer. Thinking about income, thinking about early education, thinking about social support and the family context and the educational context that you're raised in.
00;14;22;04 - 00;14;53;18
Madeline Smith-Johnson
And so I have seen a lot of literature commenting on the disability gap for trans people, but focusing on older adults and saying, hey, transgender adults are getting to older ages and how are we going to be caring for them? Which is a very important question. But if we already have disability disparities at very young ages, this tells me we need to look further downstream and start to investigate some of the mechanisms that are sort of already pulling behind this group of people.
00;14;53;18 - 00;15;16;11
Madeline Smith-Johnson
So stigma, on the one hand, is very important. But then the lack of resources to pursue health, the lack of resources to maybe accommodate difficulty if you do have a disability, these are things that resources could really buffer. So do you have social support? Do you have a network of people to draw on? Do you have financial resources to be able to hire assistance?
00;15;16;20 - 00;15;22;27
Madeline Smith-Johnson
These are the types of things that I think of when I see that really durable gap in disability.
00;15;23;20 - 00;15;57;02
Alan Weil
Well, it'll be very useful to do some longitudinal work in this area as you discuss the accumulation of stress and insults on the body. I do have to note, just from a personal perspective, as you describe the difference at the younger and older end of the spectrum, I showed up at my kid's high school yesterday and there was a protest walkout based on some proposed rules by the governor of Virginia with respect to how trans kids are treated in school.
00;15;57;02 - 00;16;41;29
Alan Weil
So I do think the social context is maybe the peer group context is different for younger trans kids than older. But certainly the social pressure and the sense of being part of a sort of broader political forces, you're not exempt from that just because you're in high school. That's my own experience. Just yesterday. But I will draw upon what you said there and ask you about a sentence in the paper where you say transgender adults entered young adulthood with higher odds of disability, which highlights, you said, the need for a life course perspective on disability disparities.
00;16;41;29 - 00;16;48;29
Alan Weil
So we hear a lot about life course, particularly when we're talking about pediatrics, but this is a different context. Can you say a little more about what you meant by that?
00;16;49;19 - 00;17;14;17
Madeline Smith-Johnson
Yeah. So in my context as a sociologist and especially as someone who thinks a lot about aging life course theory or the attention to the life course is more thinking about the social roles that accompany different life stages. So what does it mean to be a trans person with a disability in your early twenties? How does that differ?
00;17;14;17 - 00;17;43;22
Madeline Smith-Johnson
Especially because of the social roles that you're expected to perform from being a queer or trans person with a disability later in life. And so this kind of comes back to what I was talking about in the focus on end of life care and equitable care for LGBT elders and trans elders in particular. And when I'm thinking about life course, I'm thinking both about we need to not silo the study of functional limitations and disability to the elderly.
00;17;44;01 - 00;18;07;24
Madeline Smith-Johnson
So we need to pay attention to this gap among younger trans people who have higher rates of disability. But then we also need to pour resources, like you said, into longitudinal data that allows us to look at a very holistic picture of the different demands that come with different life stages that are not separate from your health status.
00;18;08;15 - 00;18;32;27
Alan Weil
Well, you just mentioned the importance of not having silos. And another dimension here is this is the concept of intersectionality, which maybe not all of our listeners are familiar with, but it does feel like your work is directly tied to issues of intersectionality. Maybe you could say a little about the concept and how it's relevant to the work that you're doing.
00;18;33;17 - 00;19;10;03
Madeline Smith-Johnson
I would love to. I really appreciate you asking this question. It's very thoughtful. So intersectionality is an idea that social identities are multiple and interlocking because social structures and systems of oppression are also multiple and interlocking. And so my paper sheds light on intersectionality in a way because it focuses on age while expanding gender identity to bring transgender people into the conversation and also thinking about disability status at the same time.
00;19;10;03 - 00;19;39;14
Madeline Smith-Johnson
But it does ignore other really important axes of inequality like race. Intersectionality comes from black feminism. So not including race in a study like this is kind of a glaring oversight when you're thinking intersectionally. And then there are other important identities or categories or classes like being undocumented or thinking about sexual orientation. These are things that I try to control for and in a way erase sort of in doing that.
00;19;39;14 - 00;20;00;26
Madeline Smith-Johnson
And so the other thing about intersectionality that's really helpful is it argues we should study people's experiences in their own context rather than comparing them to some sort of baseline and norm, which is kind of the opposite of what I do in this paper. Right? I say there is a gendered pattern between men and women. Where do transgender people fit?
00;20;01;10 - 00;20;32;01
Madeline Smith-Johnson
So a truly intersectional type study, you might say, let's go out into the world and find trans people with disabilities. Let's find them from all sorts of backgrounds. And let's understand how that interlocking identity experience colors the way that they understand what it means to be a trans person, be a disabled person, etc. So because also I'm not really addressing these larger systems of oppression, I'm not studying that as my unit of analysis.
00;20;32;01 - 00;21;07;12
Madeline Smith-Johnson
I'm looking at the individual level disparities in health. That's another sort of glaring oversight if we want to think intersectionality, because I could take the opportunity to really point the finger to these systems of ableism and ageism and gender binarism, right? The idea that everyone fits into a gender binary, that they're assigned at birth and think about the policies and institutions that come out of that sort of system, that pin people with disability status, queer people at the margins.
00;21;07;29 - 00;21;37;27
Madeline Smith-Johnson
And so that is work that I'm really interested in and I hope to go on to sort of work in is draw the line between that structural and individual component much more clearly. But I do think the paper then raises questions about intersectionality for sure, which is why I'm so glad you brought this up, because I also think there's sort of an ideological and theoretical component where disability and queerness are very hand-in-hand in a lot of ways.
00;21;38;08 - 00;22;07;17
Madeline Smith-Johnson
So we could think about how do you concerns around accessibility of public space, for example, from a disability perspective, align with policies or questions about the way that queerness is embodied in public space. And so I would love to begin targeting the exact policies and institutions that have a role in this, because I think that's where the solutions lie more so.
00;22;08;03 - 00;22;44;07
Madeline Smith-Johnson
And then we can also think about this theoretically where out of disability studies, a lot of people talk about how disability is only constructed against the idea of compulsory able-bodiedness. And that's quite similar to the queer argument, which is that queerness is only constructed in the context of compulsory heterosexuality or compulsory gender binarism. And so the parallels between these two, I think if we can bring them into dialog even more, offers some really exciting options for the parallel effort towards liberation for both of these, all of these groups,
00;22;44;07 - 00;22;44;18
Madeline Smith-Johnson
really.
00;22;44;28 - 00;23;10;11
Alan Weil
Okay. Well, look, if you're glad I asked the question, I'm even more glad I asked the question because I loved that answer. And when you started getting down on yourself for not having adopted a fully intersectional approach, my reaction was there is room for lots of different kind of work in this area, and the quantitative empirical elements that are reflected in your work are essential to understanding intersectionality.
00;23;10;11 - 00;23;35;06
Alan Weil
Even if they are not, per se, the study of intersectionality, which is what you turn to. And since you're a sociologist, I know you have plenty of room going forward to take on those institutional structures to look to move away from a normative frame that puts everything in comparison to social expectations of binarism or other so-called norms.
00;23;35;16 - 00;24;04;01
Alan Weil
That is all work to be done, but that doesn't in any way devalue the quantitative analysis that you did. So please don't be too hard on yourself here. But what I'm also really glad is that you ended by taking a sociological approach with a discussion about the notion that even disability, which is the focus, of course, of our October issue, is really about society, not about the individual.
00;24;04;01 - 00;24;35;15
Alan Weil
It's about how society is structured limits the opportunities for certain people. And that is very consistent with other types of oppression, which are basically the expectation that if you don't fit within the norm, that's on you and your problem to solve or not as you may see fit. But it's sort of invisible to those who follow the norms because they just think that's normal.
00;24;35;23 - 00;25;06;21
Alan Weil
And so I'm just glad you ended not only by not beating yourself up too much here, but by noting that by taking an intersectional approach, we can expand our understanding of disability as well as our understanding of gender and sex. And that's an enterprise with a lot of work still to be done. So that's probably the longest ending I've ever had in a podcast.
00;25;06;21 - 00;25;25;08
Alan Weil
But you prompted so many thoughts with that last question. I'm as I say, I'm really glad I asked. Madeline Smith-Johnson thank you for the work and for explaining it and moving us forward in our understanding of an area where there has not been enough work. And thank you for being my guest on A Health Podyssey.
00;25;25;19 - 00;25;27;24
Madeline Smith-Johnson
I'm so honored. Thank you so much for the conversation.
00;25;30;18 - 00;25;34;24
Alan Weil
Thanks for listening. If you enjoyed today's episode, I hope you'll tell a friend,
00;25;34;26 - 00;25;43;28
Alan Weil
about A Health Podyssey.