Season 02: Episode 12: Adrian Shanker Transcript

Queer Diagnosis Podcast

Season 02: Episode 12: Adrian Shanker

[Theme music plays]

Interview

Zarya: Hi, this is Queer Diagnosis. I'm your host, Zarya, and my pronouns are she/her/hers.

Srihita: I'm Srihita and my pronouns are also she/her/hers. Our guest today is Adrian Shanker, an LGBTQ activist serving on the Presidential Advisory Council on HIV and AIDS and the editor of Bodies and Barriers: Queer Activists on Health. Hello Adrian, could you please introduce yourself with your pronouns?

Adrian: So nice to be here with both of you. I am Adrian Shanker, he/him pronouns.

Zarya: Hi, could you tell us a little bit about your roots in LGBTQ+ activism?

Adrian: Yeah, LGBTQ activism is interesting because a lot of us grow up without the cultural context around LGBTQ communities around us. I actually was privileged to grow up with some of that context, because I grew up with lesbian moms. I was really aware of the differences in public policy for queer families like mine than the rest of the population from a pretty young age. When I was seven, and my parents got divorced, my dad was able to legally remarry and my mom couldn’t. So I became really aware of the challenges in terms of legal rights and over time I became more aware of the challenges around health inequities as well. I grew up in New York, in a place where there was more social support for LGBTQ people even in the ’90s and I currently live in Pennsylvania, a place that is a little bit further behind but has made enormous strides since then. My work primarily is on the community-based level. I lead Bradbury Sullivan LGBT Community Center in Allentown, Pennsylvania, an organization that I founded that prioritizes arts, health, youth, and pride programs for LGBTQ people, and I'm really passionate about health equity for queer and trans people across the country.

Zarya: What ways did you get involved at a younger age with the community?

Adrian: In 2003, or 2004, former President George W. Bush used an hour of his State of the Union address to condemn families like mine, and to push for a ridiculous and harmful federal marriage amendment. His strategist Ken Mehlman, who later came out, successfully led a fight that eventually won constitutional marriage bans in over 20 states. That was really the first time that I thought “Wow, this is really an issue where we have to be out, we have to tell our stories.” I was in high school, and I was kind of just discovering who I was at around that same time and that was a really formative moment when I remember watching that State of the Union. And by the way, in 2004, when Massachusetts passed marriage equality through the courts, through the Goodridge decision, every major national Democrat condemned the decision except for one which was Barney Frank, openly gay congressman at the time. Everyone else from the Presidential Nominee John Kerry to US senators, all condemned the marriage equality decision saying civil unions were enough. That's not that long ago, we're talking 2004 to 2021, that's within recent reach of our lifetimes. So the context of my activism really came out of that space. And it has evolved since then, to broader discussions around health and wellness because honestly, without our health, we don't have our lives. The moment for marriage equality was really a propulsive moment. And there were valid critiques about marriage equality being the primary focus of the queer movement even at the time, but it was a really important issue for a lot of people. And today, I think that we need to be in a place where we can achieve, we can live our proud lives longer. And the way that we do that is through achieving the unmet dream of health equity.

Srihita: So I feel like that answer really sets up beautifully the motivation behind the anthology, Bodies and Barriers. Can you talk about the inception of that book and what further motivated you to write it or edit it?

Adrian: Yeah, so Bodies and Barriers: Queer Activists on Health is a collection of 26 writings by 26 queer and trans activists from around the world who are telling our own stories about healthcare and the challenging experiences that we've had. And one thing we know about LGBTQ people is that most of us have had challenging experiences with healthcare providers in the past. For some of us, for many of us, actually, it makes us fearful about seeking healthcare in the future. Even for life-saving preventative care, like cervical pap tests, mammograms or HIV tests, flu shots, any of that. Those negative past experiences, we carry that with us as minority stress. And it's really important to me. I'll share a little bit of my own story, and I'm going to read a very short snippet with my own story.

“I'm a full-time queer activist leading an LGBT community-based nonprofit, and it happened to me, too. By “it”, I mean a negative experience with a healthcare professional because of my queer identity. I made an appointment with a dermatologist for a baseline screening for skin cancer. But every time the doctor’s well-intentioned team made me question if I should be there at all. The intake forms were unnecessarily restrictive, biased news programming was on full display in the waiting room, magazines in the waiting room didn't cater to patients like me, and comments from clinic staff display brazen cultural incompetence. I didn't go back for the doctor-recommended follow-up, but I'm privileged with health insurance, access to private transportation, and the ability to take time away from my job to drive a distance for a medical appointment. So I was able to find a new LGBT inclusive dermatologist an hour away. For many other LGBT patients, the geographic barrier to accessing culturally appropriate care from a specialist might be too great a barrier to overcome.”

So that's just a little bit of my own story. This is a collection of stories, and it's really designed to help healthcare professionals and students in health professions hear from the patient perspective because it's so easy to find the peer-reviewed articles that talk about what the experiences of queer people are in healthcare based on numbers and that data is so important, but sometimes it lacks context. And I believe that we need to tell our stories loud enough that even our doctors could hear us.

Zarya: As someone who's been a lifelong advocate for the community, I just want to thank you just as a member of the community, for the work that you've done. What inspired you to write this book now?

Adrian: I was a student at George Washington University in the LGBT Health Policy and Practice graduate certificate program and I could not find any published literature, at the time, that centered LGBTQ healthcare consumer experiences as a tool that we can utilize to retrain the healthcare system. And let's be clear, we must retrain the healthcare system to prioritize the lived realities and experiences of LGBTQ people. We are not achieving the dream of health equity. It's an unmet dream for all minoritized populations, including LGBTQ people. A big piece of that is that our stories have not been heard by the people providing care. So a lot of times we have these well-intentioned providers, and I really believe that, well-intentioned providers who don't realize the barriers to care that are literal stumbling blocks before LGBTQ patients. And I hope that current students in health professions, our future healthcare professionals, really think differently about what it means to provide care for LGBTQ people. I hope that students in health professions today, when they enter medicine, social work, counseling, psychology, or wherever they end up, that that they do so with a framework that says patient-centered care means we actually have to listen to our LGBTQ patients, and then we have to take action to improve the care based on what we've heard.

Zarya: So in one of our earlier episodes, we were talking with a medical student who actually said that oftentimes these well-intentioned physicians as you mentioned, they go in with the intention of wanting to help their patients in every way possible. But when it comes to the queer community, in particular, they're not always sure whether they have the right language, they feel uncomfortable broaching the topic of how do we get care for patients. So how do you see your book fitting in with that need of connecting providers with the language that they need to help their patients?

Adrian: Yeah, I would even go further and say that a lot of clinicians don't even feel comfortable asking about sexual orientation and gender identity. The basics, right? We want to be asked, we're asking to be asked because, without the data about our lives, we are not going to receive equitable healthcare. We will not be asked about the appropriate screenings, preventative screenings that our bodies need, and it's so important but so many clinicians are uncomfortable asking or asking the follow-up questions that would give even more information, questions about behavioral risk that might be higher for certain things in the LGBTQ community. One example of that is Hepatitis A. We have Hepatitis A outbreak in many states. Hepatitis A is spread through oral-fecal contact. We often think about it as hand washing in restaurants. So let's be clear, we can all get behind people should wash their hands. If we've learned one thing from COVID, it's hand hygiene, right? So there’s no question there. But sometimes we also see that when more than two-thirds of the new Hepatitis A infections are among queer men maybe it's not about hand washing, maybe it's sexually transmitted among queer men and not all the public health approaches to that are inclusive of that knowledge. I actually asked my primary care doctor, “Have you talked to your queer male patients about getting the Hepatitis A vaccine?” He's like, “No.” Well, why not? And he said, “Well, I hadn't thought of it. It didn't come up.” This vaccine wasn't available before 1999. So most queer adults haven't been vaccinated for Hepatitis A and there's literally a vaccine that could protect us. And Hepatitis A is no joke, right? There’s a vaccine, let's get this vaccine out there. You got to ask your patients, but in order to do that, you would have to ask questions about sexual and behavioral risks. That may be uncomfortable to ask about sexual practices for patients, but it's necessary in order to provide the right care that our bodies need. So my book, Bodies and Barriers, encourages that these stories be told because it's never appropriate for a doctor to ask their patients to teach them. It is appropriate for our doctors to hear patient stories and learn from them on their own. And that's what this book does, it compiles stories. It opens the door to ask to learn more stories, but it doesn't put the onus on the individual patient to teach their provider. It puts the onus on the provider to put more continuing ed time into LGBTQ health, to be the provider that all of us, queer and trans people need.

Srihita: I love that you use the word “retrain” because I think sometimes when people are talking about how to better serve patients that are in minority populations, it can come down to additional training or almost like adding stuff. But I think the word “retrain” sort of implies that there needs to be a fundamental restructuring in the way that health care providers interact with patients, and I think that's a really important point to keep in mind. So you kind of touched on this, but what specific impact do you hope to see your book make and on who?

Adrian: So I think that a book like Bodies and Barriers can make three really clear impacts. The first is behavioral change. For LGBTQ people to learn that, yes, there are health disparities in almost all areas of our health where LGBTQ people are experiencing worse health outcomes than the majority of the population. No, that is not our fault. We’re living in a society where these health disparities exist because of pervasive barriers to care and sometimes outright discrimination. And yet, each of us can make decisions about our bodies that can lead us to probably live longer. So things like tobacco cessation or for people that organize pride festivals, to make the festival smoke-free, decisions that we can make as queer and trans people make our communities and us as individuals, healthier. The second is clinical changes. So helping clinicians improve care; everything from the waiting room to the intake forms, to actual clinical visits, medical expertise, and cultural expertise. So all of it is together, that we actually need to demand that of the clinical spaces. So we need to demand clinical changes and that's part of what this book does. And then the third area is policy or structural change, both from insurance companies, from health networks, and also from the government, not only like HHS or state department of health or local departments of health. That's a part of it, but also school boards that make decisions about comprehensive sex education and public schools all across the country. That is part of health equity. If we don't teach queer youth about their bodies, how are we going to expect them to know things later? So this is all connected. We learned during COVID, policy change includes data equity, it includes the ability to get basic information about a rapidly spreading virus that is unique to our situation, like how New York City and also Pennsylvania put out sex during COVID guidances during the pandemic to help people make risk-aware decisions about their bodies. So that's a policy change, right? And policy change takes many forms. We don't need to only think about policy change in terms of lobbying or lobbyists. We can think about policy change in terms of an insurance company deciding that they're going to equitably cover fertility treatment for lesbians, which is not ubiquitously covered right now. Or we can think about policy change in terms of a health network deciding to start collecting sexual orientation, gender identity data, and their electronic health record. Or we can think about policy change in terms of a rural school district ensuring that they're offering comprehensive LGBTQ-inclusive sex education to all their students.

Zarya: I'm gonna be honest here, Adrian, I kind of wish we had spoken this morning because I was talking to a physician and they asked me why is there such a major focus on LGBTQ+ resources all of a sudden? I was doing my best to explain it, but it just wasn't right. I guess the way I was explaining it didn't seem like a big deal to them. But I kind of wish I had everything that you could say and just say it to them because I feel that way it would be a lot more impactful and hopefully, coming from somebody who has been working on it for a long time, obviously, this is something that's important.

Adrian: I’ll actually give you my answer to that. So here's what I would say to that person. If I was in a snarky mood, I might have said something like, “Well, actually, all of a sudden other people are listening.” Queer people have always had healthcare challenges. And actually, we've always spoken up about it. This isn’t new, queer people, intersex activists have been speaking up about ending intersex surgeries for decades, trans people have been speaking up about insurance coverage for gender-affirming care for decades. Gay and bi men, queer men have been talking about sex education and protective factors for HIV for decades. Maybe right now, we're in a moment where more healthcare providers are actually willing to hear these stories all of a sudden.

Zarya: Yeah, the “all of a sudden” got me because I've heard that argument. I will talk about the podcast pretty openly. But you can definitely see that people, even with going to information sessions, people are not prepared to answer the question of “What LGBTQ+ resources do you have for medical students?” And it's crazy, not crazy to me, per se, but I grew up in an era where all I know is pronouns. All I do is talk about SOGI data, as you were talking about, so it’s so weird to think that there was this whole generation before me that's never addressed this or if they were, no one was listening, as you're saying. It was just that nobody was paying attention to it at this time, especially the people who should be paying attention such as the people who are choosing our medical students in the future, but I'm not here to argue with admissions committees. Returning to policy, what do you do in your role in a Presidential Advisory Council on HIV/AIDS in the Biden Harris administration?

Adrian: I would say it's an enormous honor to be asked to serve. The Biden-Harris administration from the President to Vice President to Secretary Becerra at HHS, Assistant Secretary of Health Admiral Rachel Levine, have all made it very clear that health equity is a goal that we have to strive for throughout health challenges, including HIV/AIDS. Fighting for health equity is a passion of mine as well, and I am so excited to be part of a team that is working towards ending the HIV epidemic. It is within our reach, at least in the United States. And it feels like we're at this moment, where we have a president who's very supportive and we have a Department of Health, the US Department of Health and Human Services, that's very supportive. This administration is, in my opinion, moving in the right direction. And that doesn't mean there's further we need to go, there obviously is, and that's what this advisory council is here to do - to continue to provide recommendations throughout the administration about how we can end the HIV epidemic in the United States.

Srihita: What perspective do you find that you bring to this council and how does your very long list of accomplishments help you do this role?

Adrian: Well, one thing that I think is relevant to my service on PACHA, which is the acronym for it, Presidential Advisory Council on HIV AIDS, but I'll just say PACHA going forward to keep it shorter. I come from a community-based organization and in a state that is more rural than others, understanding the needs of rural LGBTQ communities, small cities, LGBTQ people in underserved areas; coming from a community center perspective, we're one of the places where people turn when they have questions. They don't often call a national organization, they tend to go to their community center or their local aid service organization. So coming from that community-based perspective, I think, is one area. And another one is that I've worked a lot on LGBTQ health, and we should not conflate LGBTQ health and the health needs of people living with HIV or HIV prevention. Those are overlapping but they're separate. And yet at the same time, we know that LGBTQ people do have some unique needs around HIV prevention and care. And that comes from a long history, a long and storied history. And that doesn't mean it's the only population with unique needs. It's one population with unique needs when we're addressing HIV/AIDS. An example of unique needs that I am referring to is if we're going to talk about HIV research, how come so few clinical trials include trans men? Trans men were never included in the PrEP trials, for example. So that's a unique perspective that as a community-based organization serving the LGBT community that I might have in my mind.

Zarya: Looking at this when you were younger, did you have any idea that you were going to take advocacy to this level?

Adrian: I've always believed in activism as a way to create social change. I've been an activist my entire life. So I mean, yes. But I didn't always know that I was going to be an activist around health equity. I didn’t even know what health equity was. I remember during the early years of the Obama administration, healthcare was on everyone's minds, and it was the conversation of every presidential debate. And all the candidates were talking about healthcare from different perspectives, of course, and I remember kind of thinking, “When are they going to talk about other issues?” It just wasn't the issue that I was personally motivated to address as a college student, as an undergraduate college student. I had the privilege of being on my mom's healthcare plan. And I knew that the Affordable Care Act would be important, but I didn't quite understand the gravity of it. And, a number of years later, we've seen the impact of the Affordable Care Act, that so many people have the ability to stay on their parent’s plans till they’re 26, for the ban on charging women more than men for the same exact coverage, the essential health benefits that make it really accessible to receive preventative cancer screenings, HIV testing. We've seen section 1557 which mandates non-discrimination for insurance companies and healthcare providers for LGBTQ patients. The Affordable Care Act has been game-changing. That was public policy in action. That was activism in action. I would actually believe it really didn't go far enough. I would actually say that it was game-changing and it could have gone further. And we have more work to do to achieve that unmet dream of health equity. But we can also remember like I remember getting a quote for health insurance before the Affordable Care Act and it was a very different situation. It was much harder to get. You had to go through medical underwriting. They would charge you more if you had preexisting conditions or deny coverage in general. That made it really hard to access care. And if we're talking about barriers to care, access to insurance is a clear indicator of care. And for LGBTQ people, it's not the primary indicator. There are other indicators like access to a doctor that feels LGBTQ-welcoming, for example. For me, activism that got the Affordable Care Act where it was is a really important thing to remember, like how much activism was there. And today when we look at Medicare for All activists, we can see that same passion and the same enthusiasm for creating a healthcare system that works for all of our bodies. When we look at nonprofits like RIP medical debt, they're wiping out medical debt for low-income people all over the US. We see that passion for making sure that people don't go into debt to get the care their bodies need. It is activism that drives changes in our healthcare systems. And that activism is something we have to harness. This book, Bodies and Barriers, is about harnessing that activism, especially from queer and trans voices into one easy-to-read book. That just gives a really clear example of where we are now and where we need to go.

Srihita: You talked about the accomplishments of the Affordable Care Act and I think we would be remiss if we didn't ask you which of your accomplishments are you most proud of and why.

Adrian: I'd say a couple. Starting an LGBT Community Center in Allentown, Pennsylvania, Bradbury-Sullivan Center has a huge impact on our community locally, and it's a huge source of pride and joy that I was able to be the founder of that organization and bring it to the point where it is now. But another one is we sued President Trump three times to stop his anti-LGBTQ rules from going into effect. By the way, we won three times. We sued to stop the Denial of Care Rule that would have invited healthcare providers to discriminate against their patients based on certain procedures that they didn't want to provide, including trans care and abortion care, and HIV-related care. We sued to stop the rollback of section 1557 to protect non-discrimination in health care. And we sued to stop President Trump's racist and sexist ban on diversity training for federal contractors. We won all three times and that's a source of pride. And, one other one is I think during the COVID pandemic, me and my organization really mobilized to ensure that LGBTQ people were able to be treated equitably during the pandemic. And for example, under our former secretary of health, now US Assistant Secretary for Health, Admiral Rachel Levine, we’re able to make Pennsylvania the first state to collect sexual orientation, gender identity data for COVID infections. That was huge. We were able to get Pennsylvania to adopt sex during COVID guidance to provide risk awareness information for all Pennsylvanians including LGBTQ companions. We were able to make sure that people living with HIV were in the first phase of vaccine distribution in our state for phase 1A, and I believe we were the first state to do that. So I have a huge sense of accomplishment around the tireless work of health activism because it is very niche and it's not front page news. But it is absolutely activism that impacts all of us. And I'm so inspired by the health activists who have come before me, people like Peter Staley and Sean Strub, the ACT UP activists, and the Treatment Action Group activists who literally put their bodies on the line to change our healthcare system and demand that people living with HIV and AIDS were given access to life-saving medical treatment. I'm inspired by activists like Michael Scarce, one of the earliest anal health activists, and people like Kate Kendell in our movement today who litigated marriage equality, and Supreme Court Mary Bonauto who litigated marriage equality. I’m inspired by activists who come before me as well. And I think that the next generation of queer trans activists, I hope that we can center health equity in a way that we can actually achieve it. It doesn't have to be an unmet dream. It can be a dream that we actually strive to meet.

Zarya: And also, there is one point that you brought up that I don’t think I've ever heard mentioned in reference to the LGBTQ+ community, and that's abortion care. I've never once heard those two things paired. And I'm not sure, am I the only one, Srihita? Have you ever heard people talk about abortion care in relation to the queer community?

Srihita: Uh, no.

Adrian: People of all genders can need and can have abortions. And so often the reproductive justice movement frames abortion care as a women's health issue. And it absolutely is a women's health issue. And it's also an issue for people of all genders who may need access to abortion care in their lifetime. So I believe that LGBTQ people should incorporate access to care and all forms, access to primary care, access to HIV care, access to sexual health, education, and health literacy, access to cancer care, and yes, access to the ability to make risk-aware and informed decisions about our bodies, including when it comes to reproductive health, the decision to become a parent and the decision to terminate a pregnancy. So access to abortion care, for me, is central to access to care more broadly. And the barriers to abortion care are political barriers. There are also geographic barriers caused by political barriers. But we look at what's happened in Texas, for example, that's a geographic barrier to care that's caused by politics, where people who can afford it, who can access private transportation will be more likely to be able to access abortion care than the people who cannot access their own private transportation or cannot afford to cross state lines. So we see the interaction there. And I think when we talk about who's left behind by these barriers to care, we know that that includes communities of color, it includes trans communities, LGBT communities, more broadly. It certainly includes lower-income communities and the multiple marginalized intersections that we look at are more likely to be left behind by these barriers to care, including the barrier to abortion care. By the way, Planned Parenthood is also one of the primary sources of healthcare for LGBTQ people. A lot of folks don't know that. So the political attempt by some people on the right, to defund Planned Parenthood, which was really not about abortion services in general because Planned Parenthood doesn't receive any federal funds for abortion services at all, but what they do receive funding for is family planning, HIV prevention, things like that. And LGBTQ people rely on Planned Parenthood across the country as a service provider. So we should recognize that those attempts to defund Planned Parenthood, are attempts to defund LGBTQ-inclusive access to care.

Zarya: I found something that comes up at the forefront of when I think of LGBTQ+ healthcare. It comes more along the lines of, especially with the physicians that I work with, they think more about STD testing more than anything else. I think that is definitely a shortcoming of the system.

Srihita: Because we were talking about how during President Obama's campaign, and then obviously his eventual presidency, healthcare became this really big issue and we've seen this further increased politicization of abortion care and transgender care, I was wondering if you think that healthcare being a more hot button political issue has sort of fed into certain types of care becoming a more hot button political issue, or if it was maybe the other way around, or if they kind of parallel each other?

Adrian: I mean, I think that, politically, access to abortion care has always been a hot button issue, regardless of anything else, but I think if we look at Build Back Better and the Infrastructure Bill, and how we've seen debates in both of these that have to do with health care access, whether we're talking about prescription drug pricing or whether we're talking about Medicare expansion for the states that haven't done that. There are components that deal with health equity within these non-traditional healthcare bills. And that's actually been where some of the greatest debate has centered. It's hard for me to understand who can go to Washington with this goal set on not making prescription drugs more affordable? Or like, who's against that? But there's a whole industry against it. When we looked at expanding Medicare to include dental coverage, there was a whole lobby group against that and it was dropped from the bill. We see that repeatedly in our political system. Michael Fine, who is the Secretary of Health in Rhode Island, and he's a family practice doctor, and he's the author as well of Health Care Revolt, which is another amazing book, highly recommend it, he says that we don't have a healthcare system in America, we have a health sales system in America. And if we wanted a healthcare system, we would prioritize care over profit. And I actually completely agree with that. I think that we do need a system of care where we can actually receive care without a profit motive. That doesn't mean doctors don't get paid, by the way. It means that the current system where fees are negotiated between insurance companies and physician groups, and then, patients just have huge bills is not a way to ensure health equity. So maybe a better way to achieve health equity is by changing the system entirely. Of course, that might be more revolutionary than simply resolving some of these more immediate barriers to care.

Zarya: But didn't you say earlier that the dream was there that means we can achieve it? Aren't you going back on your own word there?

Adrian: No, the dream is there and we can achieve it. We just have to work for it. A lot of these problems or social problems are fixable. The problem is in terms of barriers to care and access to care, and cheap and health equity. I don't know how realistic a Medicare for All system is in the next decade or longer, but I do feel like we can actually work to fix the problems of health inequities when it comes to accessing care, even within the current healthcare system. I used to say when I gave book talks that we have a broken healthcare system and someone corrected me quoting Brene Brown, which I love. They were like, “Well, like Brene Brown said that it's not broken, it was built that way.” Well, yeah, it was built that way. That's right. But even within that built that way system, we can still, I believe, address these barriers to care.

Srihita: So I mean, we've kind of touched on the idea of the dream of health equity. So I guess, to do a little visualization exercise, could you describe what an ideal experience would be when seeking care?

Adrian: Yeah, I'm actually gonna quote one of the authors of Bodies and Barriers who answers that question, I think, better than anyone. Robin Oaks, who is a bisexual activist in Boston, wrote about bi experiences with healthcare professionals, and she answers the question, “What do we want?” She actually quotes a March 2016 issue of The Advocate. A writer in the advocate in that episode said,

“I'll see my doctor in a few weeks for a routine visit. I'm glad to have my provider talk about my sex life openly, freely, and without judgment. I'll get the results for my routine HIV and STI test from my last appointment. I’m confident the results, whatever they may be, will be delivered with care and compassion. At the end of the day, that's what any bisexual person any LGBTQ person and any human being deserve. Access to an affordable, non-judgmental medical provider who will offer and provide tests as requested and needed without wincing or clenching when we are honest with our providers and ourselves.”

And that's from Samati Niyomchai who wrote that on March 15, 2016, in The Advocate. It's the close of Robin Oak’s chapter about what bisexual people want from their healthcare providers. Similarly, one other very quick quote here is from Liz Margolies, who founded the national LGBT Cancer Network. And Liz wrote,

“I wonder sometimes what it will be like for me to have cancer? Will all my professional work and resources and research serve to make my cancer experience less stressful? Is forewarned forearmed? Will I be bolder in my demands for the respect and care I want from both my providers and the healthcare system? What if I'm forced to choose as many are, between using the best doctor (who's an asshole)? Or the young, less experienced queer doctor? What will I do? Most probably like everyone else, I'll wing it. I'll bumble, I’ll cry, I'll be afraid and I’ll forge on. One way or another. I'll lean on my friends for support. I'll be tired, I will be angry, I will experience cancer like I experience the world - as a woman as queer and as white. My experience will be gendered. My experience will be mine.”

So I think that what we're talking about what do we want for our healthcare system? Everyone will answer that question differently. I really like those two quick quotes from the book because they share first the utopia about the health care visit. And then the second one shows the more realistic, in terms of what we can hope for in terms of our own experiences when we find ourselves experiencing a certain health challenge.

Zarya: So turning back time a little bit, what would you say to your college self if you had the opportunity to talk to them?

Adrian: I would say that you don't even know how important the Affordable Care Act will be. Also, I went six years without going to the doctor, four years in college, and then two years after, and a lot of that was, looking back, based on some of my own barriers to care, some barriers that were preventing me from seeking care. And if I had an ear infection, I went to the Campus Health Center, but I didn't get a physical. I wasn't getting blood work done. And there's a sense of invincibility that a lot of college students have, but I think that we need to create a culture where accessing health care is not something we do just when we're sick. We access health care to prevent us from getting sick, and it won't prevent all sickness at all times, but we go to seek care for wellness. Not just when we're sick, and I would have told myself that's the value of going for a physical, that's the value of preventative care. That’s literally what preventative care means. And like many college students, I didn't think about it that way. And in retrospect, and the way I think about it now, the way I interact with my healthcare, my own healthcare experiences now is very much about “I will go for preventative care.” We take our cars for preventative maintenance. Why don't we take our bodies, right? Our bodies deserve quarterly HIV testing. Our bodies deserve an annual physical. Our bodies deserve an annual optometrist visit and a bi-annual dental checkup. These are things our bodies actually deserve. And we shouldn't deny that care because we can't afford it. Because we should have a system where cost is not a barrier. And we shouldn't deny it because we can't find it or that we're scared we’ll be judged because healthcare should be offered in non-judgmental manners to all of us, including the queer and trans people among us.

Srihita: I think on that note, I want to say thank you to Zarya for making me go to the doctor that one time I fainted because I didn't think it was a big deal, but she was like, “No, you should go” and that was smart because something could have been wrong and I also want to say thank you to you. You're incredibly good at what you do. And I hope that you know incredibly good you are at what you do. And thank you so much for taking the time.

Adrian: One strategy I recommend to people when they are fearful of going for care is to go with a group. Bring a friend or bring a couple of friends. If you don't want to get that cervical pap test because of negative past experiences, or fear of being misgendered, bring your best friend who is your strongest advocate, who will before you even get into the room, go up to the receptionist for you and be like, “I'm here with my friend. Their pronouns are this, get it right.” Bring your advocate with you. Bring your friend with you, or a family member, whatever it is. But don't delay the care because it is really important to make sure that all of our queer bodies get the love that we deserve for our bodies.

Zarya: Are you familiar with MMIs?

Adrian: I'm not.

Zarya: So MMI’s are the multiple mini interviews that they give you for medical school and one of the questions that come up is usually about the Affordable Care Act. So I'll see you for my mock interviews for medical school, right?

Adrian: Yeah, I wasn't aware of that term. So I'm not a doctor and I've never gone to medical school. And in some ways, when I started doing healthcare activism, I was like, “Are people gonna take me seriously? I'm not a doctor. And in some ways when I do a lot of training for clinicians, and there is a value in clinicians hearing from people that haven't gone to medical school. But to be honest, I don't know what it's like to be a med student since I've never been one.

Zarya: But I will say this much, I think you've said a way better answer about the Affordable Care Act than I've heard anybody ever say and I've listened to I think 400 people give this answer about the Affordable Care Act. I think that maybe it's not too late to go back to med school. You know what I mean, Adrian? No, but genuinely, thank you so much. This conversation is awesome and in case anybody didn't get the memo please get Adrian's book. It's wonderful. Adrian, do you mind repeating the name of it and where can you find it?

Adrian: Bodies and Barriers: Queer Activist On Health. It’s available to any local bookstore. I always encourage people to support their local bookstores, especially queer or BIPOC or women-owned bookstores, but it's also available through online retailers. I discourage buying it through the Voldemort of online retailers. But I look forward to hearing what people think of it. It was so great to be here with you all and this was a wonderful discussion.

Reflection

Srihita: Hello, everyone. Welcome to the reflection portion of our episode. Tonight, me, Zarya and our interns, Sofia, and Aaliya join us to reflect on our conversation with Adrian that we just had 15 minutes ago, so we're still very pumped and excited to talk about it. Zarya, do you want to start us off with a story that you were very enthusiastic to share?

Zarya: Yeah, I would, Srihita. Thank you for making that introduction. So the reason I'm so passionate tonight is that last week, I was thinking, I should note something: we've been recording these episodes pretty much for about the same week that I was sick, am sick, whatever the difference may be. So being the great advocate I am for my own health, I went to the doctor's office last week, and by “went to the doctor's office,” I mean that I called my doctor's office and I had a telehealth appointment. So what happened was I asked the doctor to see me, as always, and the medical assistant was taking down my information and they asked me, “Hey, how did you get sick?” And I hope that my parents aren’t watching this or listening to this more so because my answer was that my partner got me sick. Now I said my partner got me sick, right? I didn't say “she got me sick,” or “he got me sick,” I didn't even say “they got me sick.” I just straight up said, “my partner got me sick.” And the medical assistant looked at me and they said, “partner?” I was like “you've never heard this? This is not your first rodeo, my friend? like what is going on here?” And they looked at me like I was from Texas and just came up with this random word, but they were very confused by this word “partner.” I was like okay, by the way, I was very sick at this point so I was just doing my best to get through this phone call at this point. So anyway, they were like, “Okay, I have all your information. The doctor will call you back in an hour.” And I was like, “great!” So the doctor called me back an hour later and they were like, “By the way, how is your husband doing?” And I was like, “My husband?” I'm not gonna lie to you, viewer/listener, I was shocked because first of all, I didn't get to invite my parents to this so-called wedding that they had pronounced me married. And I see Sofia reacting very largely, or sorry, not large, but very active. And I'm not gonna lie to you, I was kind of devastated because here's the thing, right? I never once used he/him pronouns, in fact, I never used pronouns, I kept using “partner.” It was just a little bit of a shock and I felt a little bit disappointed in my doctor. Before that moment, I had never felt the need to disclose my sexual orientation or anything of that sort with my doctor. We have a very professional relationship, so to speak, where they give me the medication, I say goodbye. But it was really weird because they were actually really nice. And so what happened was they said, “your husband,” and I said, “my husband?” And they were like, “Oh, is he not doing well?” And I was like, I didn't know what else to say so I said, “Yeah, he's doing fine.” But actually, my wife back home isn't too happy about it. And that was it. The joke here is that Srihita and I, with the purposes of Con Edison and Spectrum, Srihita is my wife, do you want to add on to anything?

Srihita: I mean, I think adding to Spectrum and Con Edison, also Shake Shack and UberEats Customer Service are very well aware that Zarya and I are wives but that is a much longer story that we do not need to go into. I think the other thing I want to add is Zarya’s partner got her sick, and then she got me sick. So that was going around for a while and I'm really glad that our voices sound better now because it would have been difficult to listen to a podcast of us sounding the way we did a couple of days ago. I think, touching on the patient experience, Adrian shared a quote from one of the stories in the book that he's edited and I felt like chills go over my body when they were talking about what their ideal visit would look like. Because it felt like this isn't some lofty demand. This is just how humans should interact, the idea that you should feel comfortable talking about your sexual orientation and your relationships with the person that is providing you healthcare, with a person that sees you, who has access to your body in ways that very few people do, that is such a basic ask. And the idea that that is the dream and that's the end goal and that we still have all these barriers and obstacles before we get there. I think at the moment, I felt chills over my body but now talking about it, I just feel a little angry or very angry, like that shouldn't be that difficult to do. And Adrian touched on how everything has been so politicized in the way that we access the healthcare system. A little dose of anger is good every now and then just to keep me motivated. That quote really impacted me.

Aaliya: I think what most people, especially people from minority groups really want when they go to a doctor is to be comfortable and that's kind of a lot of what Adrian mentioned. Just everything you said basically came down to being comfortable enough and confident enough in your doctor to go in and ask for help when you need it. Because healthcare should be a basic thing that everyone needs. And as Adrian said in the interview, you get your car checked out every single year, like you should get an annual physical, at least. And one thing that really stuck out to me was that he said that it’s not the patient’s job to educate the doctor or to teach the doctor. And that's so important because I think you should be comfortable enough to go to whatever, your physical, your doctor's appointment, knowing that your doctor has enough information or has enough knowledge about different identities to treat you as a normal person without being confused when you use the word “partner” instead of boyfriend, girlfriend, whatever it may be. That shouldn't be confusing. They should at least have the basic knowledge because I’m sure Zarya felt uncomfortable in the situation and people feel uncomfortable going to just visits and that shouldn't be the case. And I feel like doctors and people in healthcare in general just need to get more educated on these things so that more people actually get healthcare and more people live more fulfilling and healthier, and longer lives in the future.

Sofia: Yeah, Srihita said it wasn't that big of an ask. It's not very demanding, but at the same time, it felt so surreal, because it's not what we're living in. It's not something that we actually experience. It’s the fact that we're actually asking for it that means that we're not there yet. And as Aaliya said, if I go to the doctor, or what Zarya has already experienced, my anxiety would not respond like that. I would just let it slide because I'm not very confrontational. And I feel that I'm not the only one who's like that. So there's a whole lot of people who experience this and they have no power or they have no experience in mitigating the situation or actually just addressing it. And I think Adrian also touched upon patients who are not comfortable with being the ones who actually teach the provider how to treat them. Because as Aaliya said, as patients, you expect that they already know, right? They already know how to treat you, how to approach you, and all that. And I think that it also goes both ways because as Adrian also said that clinicians are also too afraid to ask. They don't want to ask the wrong thing, they don't want to mention something wrong so I think that it all goes both ways. But because right now, everything's very politicized and people are very sensitive and things like that. But Adrian also said that he is not a doctor. And he was very afraid to put out the book because he thought that maybe people won’t take him seriously because he is not a healthcare provider himself, but I feel that there is no better perspective but from patients themselves in terms of healthcare, because we are the ones actually receiving the healthcare. And healthcare is for the patients, it is something you provide to patients. And I don't want to put all the burden on healthcare providers to actually know what they should be doing in every situation. Because it is embedded in our policies, in our structure and I think that is the one that's supposed to change. The entire system is the one that needs to change. If the system, if the policies, if the structure is changed, then all the things, our demands, as Adrian pointed out in his book wouldn't be so far-fetched and wouldn't be so surreal.

Zarya: Yeah, something that I wanted to add on to the idea of Adrian almost undervaluing how much knowledge he has and the significance of that. I don't think it's fair that our medical school curriculums are something that you have to be on some sort of committee or you have to have some sort of a medical degree to give input into the medical curriculum. Because I was asking questions about LGBTQ+ resources in information sessions and it's interesting, I wouldn't expect the answers to that to lie in a curriculum, but oftentimes, the people who are hosting these information sessions would redirect me to the curriculum. And I was like, but your curriculum is missing it, though so who is advocating for LGBTQ+ inclusivity in your curriculum? Well, you have to have someone who is knowledgeable about it, who feels comfortable talking about it. And honestly, it's experts like Adrian, who should be part of that process. But, I mean, it's not like you can put it on the experts to put it to work on every single part, similar to how you said, healthcare providers will not be expected to know how to react or just act in every situation. I also think that there's only so much time and so much energy you can put into initiatives and the people who have this knowledge are working on so many other things that you have to wonder why is there not more attention? If you want to implement policy changes and just start from the level of medical education, we need to have people involved from the get-go when we have medical students. And honestly even in sexual education curriculums here and in elementary school, middle school, high school, I can say honestly, I've never once met-- I grew up in New York City-- in my curriculum, I cannot mention, or cannot even remember any time where we mentioned anything that was not heterosexual intercourse. This is the best way to put it because there was nothing and I'm really happy to say that we had the chance to meet Adrian because I think it is people like this who are gonna keep the fire burning and just gonna keep working hard to inspire people like us who can continue this motivation.

Srihita: I think the last point that I think is really important to make is, Adrian mentioned that the access to insurance was an indicator of care for the general population, but that the access to a professional or a healthcare provider that they felt comfortable with was an indicator of care for the LGBTQ+ population. And so my takeaway from that is that there are people who are not seeking out care because they feel uncomfortable, and that's just unacceptable on every level, everyone deserves to have the resources to be able to take care of themselves whether that means medical education, cultural education, structural policy, and just the goal of health equity, in general, is so important and Adrian spoke to that so beautifully. And we're very, very honored and grateful that we could have this time. And I think with that, we're going to end it. As usual, please take care of yourselves and we'll see you in the next one.

Zarya: Bye!

Sofia: Adios!

Aaliya: Bye!

Zarya: Read the transcript for this episode at QueerDiagnosis.com. Queer Diagnosis is

Aaliya: Aaliya Sayed.

Jess: Jessica Pathmanathan.

KaiQi: KaiQi Liang.

Lara: Lara Castaneda.

Serena: Serena McDaniel.

Sofia: Sofia Peralta.

Jameson: Jameson Coleman.

Srihita: Srihita Mediboina.

Zarya: And me, Zarya Shaikh. Music is composed and provided by Cara Dugan and Adam Fredette. This podcast is supported by listeners like yourself. Our Patreon is patreon.com/QueerDiagnosis rate and subscribe to Queer Diagnosis wherever you like to listen.

This transcript has been edited for clarity. This text may not be in its final form and may be updated or revised in the future.