A new report from the National Academies of Sciences, Engineering, and Medicine says that more Americans identify as lesbian, gay, bisexual, transgender, queer, intersex, or other nonbinary identities than ever before, but significant gaps remain in data collection and understanding of their well-being. That reality has significant implications for not only the current state of HIV care and services for LGBTQ people, but also the future evolution of those interventions.
“We’re simply missing some of the data that would allow us to fully understand the well-being of sexual and gender diverse populations,” says Charlotte J. Patterson, a professor of psychology at the University of Virginia and the co-chair of the committee that wrote the report. “Better data will enable better services and stronger policies to improve the lives and health of LGBTQI+ people.”
Entitled “Understanding the Well-Being of LGBTQI+ Populations,” the report includes sections on the legal system, public policy, stigma, civic engagement, physical health, and mental health, among other topics. To learn more about the report, I spoke with two members of the committee that created the report: Tonia Poteat, Ph.D., PA-C, M.P.H, and Marlon M. Bailey, Ph.D.
This transcript has been edited for clarity.
A Deep, Detailed Report on LGBTQ Needs, Priorities, and Achievements
Terri Wilder: Dr. Poteat, I’d like to pose my first question to you. In 2011, the Institute of Medicine of the United States National Academies of Science, Engineering, and Medicine published “The Health of Lesbian, Gay, Bisexual, and Transgender People,” which was a landmark report about the health of this population. By mid-2020, the report had been downloaded more than 15,000 times, and had been used by researchers, educators, attorneys, health care professionals, government workers, journalists, community groups, and many others.
What was the task set for the committee that you and Dr. Bailey served on for the recently released report, “Understanding the Well-Being of LGBTQI+ Populations”?
Tonia Poteat: The task was much broader than the 2011 report. One way that it was broader is that it expanded the populations that were included in the report. We were charged with reviewing data on people with differences in sexual development, sometimes also called people with intersex traits. That included that population under the umbrella of who was included, as well as people who—based on their identity, their behavior, or their attraction—could be seen as lesbian, gay, bisexual, or transgender. So that’s one way that we broadened what we were doing from the 2011 report.
Additionally, we looked not only at health, but multiple aspects of well-being, including civic engagement, community, law, policy, demography, families, educational settings, culture, religious institutions—really a broad swath of well-being. And a goal with this broad population and the broad topics is to review the existing evidence and identify future research needs.
Wilder: Dr. Bailey, my understanding is that this report came to be after a year of discussion—and, like Dr. Poteat mentioned, information gathering, review, and probably a lot of deliberating among the committee members. What were some of the overall key messages that the committee really wanted to convey to the reader in this report?
Marlon M. Bailey: Well, first, a lot has happened since the last report on LGBT health that we published in 2011, and Dr. Poteat just spoke to.
In 2015 the U.S. Supreme Court extended marriage equality for same-sex couples. And this year the Court ruled that Title VII of the Civil Rights Act protects against discrimination in the workplace due to sexual orientation and gender identity. This report wanted to really capture some of those major shifts in the politics and the conditions under which LGBTQ+ people live.
Secondly, the LGBTQ+ population in the U.S. is vastly diverse, in terms of race, ethnicity, sex categorization, gender and sexual identity, religious belief, social class status, and more. So, this diversity also brings complexity. This report really sought to capture for the reader much of the complexity of the SGD [sexual and gender diverse] population.
Third, even though we have made advancements since 2011, particularly in the legal arena, LGBTQ+ people continue to experience and suffer disproportionately from discrimination, exclusion, stigma, violence, and intersectional forms of oppression.
Finally—and I think this is what is really important about the comprehensive nature of this report—is that it captures the advocacy, activism, and agency of LGBTQ+ populations who work on their own behalf, who work to secure social justice. Much of the achievements that have been made have been made because folks are in the streets; folks are fighting for their rights and organizing; and actually engaging in the electoral process.
Those are some broad points that I think the report conveys to readers.
“Sexual and Gender Diverse”: Finding Inclusive Terminology
Wilder: Dr. Bailey, throughout this report, the phrase “sexual and gender diverse identities” is used to describe individuals who identify as lesbian, gay, bisexual, transgender, queer, intersex, or nonbinary—or who exhibit attractions and behaviors that do not align with heterosexual or traditional gender norms. I’m curious about that phrase being used, and if you could provide some insight.
Bailey: Back to my previous point about the vast diversity of the LGBTQ+ population: We wanted to recognize that and be as inclusive as possible, but also be able to signal the way that many identities—and categories of identities, of sex, gender, sexuality—are ongoing. It also reflects the ways in which communities are crucially choosing to identify themselves in ways that are not always captured by the LGBTQ+ moniker.
Third, as a sort of scholarly endeavor, we wanted to be able to, on the one hand, capture the diversity of experiences; while, on the other, be able to write about this vast diversity. In some ways, it’s a moving target, where the ways in which people are identifying themselves is constantly changing over time. So we wanted to be able to capture that effectively—and communicate ideas in the report on behalf of communities—in a way that the reader could understand and follow, and where we wouldn’t exclude conventions and sectors of the population.
Wilder: Dr. Poteat, kind of piggybacking on what Dr. Bailey just said, the intersex community was included in this report. I don’t often see the needs of this community being addressed in reports. I’m wondering if you could talk about some of the important messages in the document about the intersex community.
Poteat: I think one of the biggest messages we found is that there’s very, very limited population data available. Most of the research that’s been done with intersex populations or people with intersex traits has been focused mostly on surgery and surgical outcomes, and very little on the health and well-being of this population as a group. I think you’ll find throughout the report, no matter what section we’re in, we conclude that we need more data on people with intersex traits.
In the health section, in particular, we wanted to pull together the data that’s available on the effect of elective genital surgery on children with intersex traits. And what we found is that the data exists that it’s detrimental to their health and well-being to be subjected to elective genital surgeries before they have an opportunity to participate in decision-making and provide consent.
So, those are the two major things that we found related to intersex health.
Wilder: Throughout the document there’s this call for enhanced data collection on sexual and gender diverse individuals. You both have kind of spoken to why this is important, but: How do you make that happen?
Bailey: In one way, this report is a call, a charge, and a guide for more data collection; using interdisciplinary approaches to better capture the diversity of the LGBTQ+ population, and all of the complexities of the conditions under which we live. And this is also a call for funding agencies, universities, colleges, nonprofit organizations, and community-based organizations to collaborate; to support; to bring resources to bear; to actually undertake and conduct research that would capture much of what we do not know.
We learned a lot producing this report. There is a lot of information. A lot has happened over the past several years, but we still have a long way to go, and there’s still a lot that we do not know.
Poteat: I wouldn’t be a good public health person if I didn’t also add that, on all of the national population-based surveys: including questions around sexual orientation, gender identity, and intersex traits would go a long way in filling some of the gaps.
The Continued Effects of Stigma on Sexual and Gender Diverse People
Wilder: Dr. Poteat, I want to talk about stigma and the impact that it has on the physical and mental health of sexual and gender diverse people. The term “weathering” is sometimes used specifically to describe the stress that affects the bodies of people of color and increases their overall health vulnerability. I’m wondering if you can talk about the impact of stigma, and if you think there is a kind of weathering that can happen among the LGBTQI+ community.
Poteat: The short answer is: Yes, absolutely.
The longer answer is: Related to what Dr. Bailey said about our desire to have inclusive language, what we find when we look at different silos of research, we’ll see terms like “weathering” when people are talking about the physiological impact of stigma on people of color in the U.S. And you’ll see terms like “minority stress,” or “gender minority stress,” or “sexual minority stress.”
Well, we’re talking about essentially the same concept being applied to sexual and gender diverse populations. There is evidence for both the social impact and the impact in the body of experiences of stigma.
Wilder: Can you give me a specific example of what that means?
Poteat: I can give you a really depressing example, unfortunately.
One of the things that we know is that there is an incredibly high rate of suicide among transgender populations in the United States, and among LGB youth in the United States. Part of what happens is that people are exposed to negative, stigmatizing social messages around what it means to be LGBT. And, in addition to having barriers to employment and barriers to education related to that, it also becomes internalized. And people have to marshal resources to survive, to be resilient.
But it takes a toll on the body, an actual physiological toll on the body. I can nerd out on you, if you’d like. But—
Poteat: OK. I’m doing one of these studies right now, looking at how stress hormones in our bodies change in response to chronic, continuous stress—which is what the experience of racism, homophobia, transphobia, does to a person—and how those changes in how our stress hormones behave have implications for not only our mental health, but also our physical health. Cardiovascular disease, diabetes—all of those things are increased by exposure to chronic dysregulation of our stress hormones.
The Impact of Community Engagement on LGBTQ Wellbeing
Wilder: Like I mentioned earlier, this is an incredibly detailed document. I think it’s 359 pages—not to intimidate anyone, it’s just so detailed and has so much robust information.
Dr. Bailey, you contributed to several sections, much like Dr. Poteat. One of the interesting sections to me was about community and civic engagement, which you alluded to a little earlier. But I’m wondering if you can talk a little bit more about that section, and some of the key messages and conclusions.
Bailey: Yeah. One of the things that we found is that civic engagement includes participation in electoral politics—both in terms of voting and running for office, etc.—but it’s not limited to this. So we decided to expand the definition of what that civic engagement means.
We had some panel discussions, and we had an open forum, where community-based organizations from a variety of causes came to talk to us about what civic engagement means to them and the kind of work that they do.
We began to think about activism, and advocacy, and organizing—and how these practices have historically, and in our current time, been crucial to social justice achievements within and beyond electoral politics and policymaking and government practices. And we found that it continues to be essential to current achievements and current efforts around social justice today.
We also found that cultural events, such as gay pride events, are also a form of civic engagement, which is why we talk extensively about gay pride events, and I wrote a section on Black gay pride events—because they are a form of engagement in mobilizing communities around affirmation, but also around issues that are confronting LGBTQ+ populations.
Finally, community-based organizations [CBOs] that serve our populations are also a form of civic engagement. Because a lot of the community-based organizations that are LGBTQ+ CBOs are not only doing work around HIV prevention and gender and sexual health, but around voting, and around elderly issues, and providing services that are often not captured in other rounds of service provisions for LGBTQ+ people.
I think this portion of the chapter, in terms of civic engagement, was really important for defining how LGBTQ+ populations engage in their communities and help to effect social change on their own behalf.
The Current State of LGBTQ Health and Research
Poteat: Dr. Poteat, you contributed to sections related to health. And I guess I’ll pose the same question to you: Can you share some of the key messages and conclusions in those sections?
Poteat: We had so many! I’ll try to make it succinct. There were two chapters devoted to health: one was sort of an overview of sort of health conditions; the other was around health care utilization and access.
In the first chapter, we had four main messages we wanted to get across. One was what we’ve already talked about, that sexual and gender diverse populations experience many disparities or inequities in physical and mental health, and that those are not evenly distributed by race and gender and other characteristics.
We also concluded that there are major gaps in the research, which we’ve already talked about. And I think some of the important conclusions are that the data indicates that these inequities are driven by stigma, prejudice, and discrimination. They’re not intrinsic characteristics of sexual and gender diverse people; they are caused by those social forces. We talked about weathering and minority stress, and we wanted to make sure that that conclusion from the data was really clear.
And, of course, we noticed that there were those main gaps in intervention research, in particular. There is a larger body of data, summarizing the problem, describing the problem, and sometimes theorizing mechanisms; but less data on what to do about it, and research that really focuses on interventions.
In the health care utilization access chapter, we found that welcoming, affirming, and culturally responsive care was really important for the well-being of sexual and gender diverse people; that gender-affirming care—including puberty-delaying medications, mental health services, hormone therapy, and surgeries—are important for the health of transgender people; that conversion therapy to change someone’s sexual orientation or gender identity is harmful; and that elective genital surgeries with intersex traits is dangerous to their health and well-being.
Why Are More Young People Coming Out as Trans?
Wilder: The report states that increases in LGBT identification are more pronounced in younger age cohorts. A Gallup analysis shows that virtually all the growth in the proportion of the U.S. population identifying as LGBT between 2012 and 2017 can be attributed to increases among those born between 1980 and 1999, often called the millennial generation. The proportion of that group identifying as LGBT was 5.8% in 2012, and 8.2% in 2017.
Additionally, the report states, “The prevalence of transgender identity is also slightly higher in younger populations, although age differences are less pronounced than for sexual orientation. Estimates from the BRFSS [Behavioral Risk Factor Surveillance System] show that 0.7% of both 13-to-17-year-olds and 18-to-24-year-olds identify as transgender, compared with 0.6% of those aged 25 to 64 and 0.5% of those aged 65 and older.”
I recently had someone tell me that they thought it had become “trendy” for young people to come out, and to particularly come out as transgender. I was shocked they said this, and I absolutely don’t think a person coming out is about being “trendy.” I would love to hear your thoughts on the data and this comment that I heard.
Poteat: Yeah. Unfortunately, I have also heard comments like that.
I’d say, just to address the “trendy” comment, and then the data comment second: We have a 359-page report documenting the negative experiences of sexual and gender diverse people. I don’t think anybody’s experience with coming out has brought them accolades and great benefits. In fact, what we see is people exposed to greater stigma and discrimination, and that then leading to poorer mental health and poorer physical health outcomes.
So, I think it’s not accurate, to put it mildly, to say that people coming out is related to being trendy. Because how people are then treated after they come out has significant consequences and disadvantages in our current political and social environment for their health and well-being. So, lay that “trendy” comment to rest, hopefully.
I think that there is a really straightforward explanation for why we see these differences. Dr. Bailey has already pointed out that we’ve seen a significant difference in legal protections and social acceptance of sexual and gender diverse populations over the last 10 to 15 years. If you grew up in the 30s and the ’40s, and your identity was solidified in a time where you could go to prison; you could be involuntarily hospitalized; you could be subjected to torturous treatments because you came out—then of course you’re not going to come out later, right?
But if you’re a younger person and you are coming out in a time where you can get married, and it could be legally recognized; in a time where you may have some legal protections at the workplace—then you might be more willing to share your identity for a research poll, and even more likely to acknowledge and accept it within yourself. And that is the reason I think we see these cohort differences around identity.
Religion and LGBTQ Inclusiveness/Exclusiveness
Wilder: Dr. Bailey, I have this perception—I’m from the South—that religious institutions are historically stigmatizing towards the LGBTQ+ community. When I was looking over the report, I noticed that there was a section about religious institutions. I’m wondering if you could speak to why that was included, and what was the focus of it.
Bailey: We were really concerned about capturing the complexities of community—both the challenges to community, and how community mobilized in various capacities, including as part of institutions, to actually fight for more inclusion—and how some of those institutions have changed to be more inclusive.
We found that religion is one of the core features for many communities. LGBTQ+ populations are not an exception to that. So, what we wanted to do was counter this notion that religion, from a community standpoint, is inherently adversarial to SGD populations. And we found that there are far more nuanced and complex experiences that we wanted to capture.
What we also wanted to do was expand our presentation of what religions, religious practices, and institutional religious practices LGBTQ+ populations were either included in or not. So we thought to not only talk about religious institutions, but also spiritual practices that are not necessarily associated with what we see as institutions: native and indigenous spiritual practices, African diaspora spiritual practices. We also had a presentation during one of our forums and panel discussions about queer Muslims.
We also wanted to think about a range of Christian institutions and practices: There’s a variety of inclusions and exclusions. We wanted to illustrate that not all religious institutions, particularly Christian institutions, are totally exclusive or excluding LGBTQ+ populations, or are not tolerant. There’s a range of different kinds of religious institutions, historically and during our current time, that include, in different ways. And that has been because LGBTQ+ populations, within the religious arena, have pushed for these institutions to be more inclusive.
Now, we still have a long way to go. There’s still a lot of religious institutions that do not affirm and include LGBTQ+ populations. But there are a lot more than we think, and we sought to capture that in this section.
A Diverse Set of Report Funders
Wilder: How did the Tegan and Sara Foundation get involved? I think it’s amazing that a Canadian indie pop band got involved in this report.
Poteat: Before the year or two of meetings and deliberations and data collection and consolidation of the report, there was probably a year or so of fundraising efforts. As you can imagine, this was not a free undertaking; lots of people’s time and effort were involved in this. And many organizations were approached.
In addition to the Tegan and Sara Foundation, there was Robert Wood Johnson. There was the Gilead Foundation. There was the NIH Office of Sexual and Gender Minority Research. The TAWANI Foundation. Multiple organizations helped to fund it, and many, many more were approached and were not necessarily available.
I think the really great thing about the Tegan and Sara Foundation is if you go to their website, they state pretty clearly that their mission is to improve the lives of LGBTQ+ women and girls, and that mission is founded on a commitment to feminism and racial, social, and gender justice.
Indie pop bands can use their platform to do amazing things. I think the Tegan and Sara Foundation is committed to doing that.
An Opportunity to Teach a New Generation About Greater Inclusiveness
Wilder: I’d like to close with an open-ended question about anything that you think is important that we haven’t discussed regarding the report.
Bailey: I think this was a very, very important endeavor. It’s a very important report for not only LGBTQ+ populations or SGD populations, but everybody, because it really comprehensively provides this story about a large portion of our society.
Sometimes the media provides these little episodic snapshots of very complex conditions and communities and populations. This report really provides a comprehensive picture, a nuanced picture.
I think it will also be very useful for universities and teaching—I plan to teach from it—and the government institutions that are really interested in not only training people how to do more research, to collect more data; but also how to create policy to help improve the lives, again, of not just LGBTQ+ people or SGD populations, but everybody in this society.