A Gathering Of Voices: LGBTQ+ Activists Talk About Pandemics Past & Present

Over half of the population of the United States and almost half of the UK population has received at least one dose of a COVID-19 vaccine. Case counts and virus-related deaths are dropping by the day. And as we look toward the end of the pandemic, I’ve started to have a recurring fantasy. In my dream, it’s 2023, and the first multi-million dollar COVID-19 film is making its debut. 

In cinemas around the nation, audience members tiptoe between aisles, gingerly balancing popcorn bags, sweets, and drinks as they settle into their seats. The energy is one of buzzy anticipation. The film has been touted as an epic of herculean proportions. It’s only loosely biographical, but the pre-screen reviews have breathlessly detailed how the writers and directors coordinated and consulted with several public health, governmental, and non-profit organisations to detail the sheer magnitude of the pandemic, and the ineptitude that was to blame for the needless loss of hundreds of thousands of lives domestically and millions worldwide. The film sources from post-pandemic indictments and investigations, and the trailers have claimed that it will provide viewers a“never-before-seen” look into the horrors of the COVID-19 pandemic.

The film begins, and the audience is introduced to beautiful and exceptionally chiselled Asian American actors in the roles of Wuhan scientists. Their subtitled conversations give the film a veil of internationalism, despite its ultimately overwhelming Americentrism. One storyline in the film focuses on an inner-city Latinx character, whose life spirals out of control as his family members succumb to mysterious symptoms. I can picture the close-up perfectly: the character’s tear-streaked face, watching in horror as an exhausted physician takes his mother off of a ventilator. Sniffles will echo through the auditorium, and in a few months, the young Latinx actor will definitely be nominated for Best Supporting Actor awards. There are likely a handful more POC character actors sprinkled throughout the film. However, the majority of screen time will be usurped by white veteran actors playing Trump, Pence, Fauci, Birx, Redford, Biden, Cuomo, Newsom — plus the fatigued physicians, pharmaceutical CEOs, Ivy League-educated epidemiologists, zealous anti-maskers, and voracious journalists that round out the rest of the cast. 

In my daydream, the film has the pacing of And The Band Played On (1993) and the character development of Dallas Buyers Club (2003), two widely acclaimed movies about the HIV/AIDS pandemic. It also has the same narrative trappings of white-washing a global pandemic that disproportionately affected Black people, Native American people, brown people, poor people, and immigrants. And The Band Played On was based on the commercially lauded 1987 book by white journalist Randy Shilts. The film adaptation had a white director, screenwriter, executive producer, and music composer, and a principal cast of four white men and one white woman. A decade later, Dallas Buyers Club (2003) fails to improve the optics. The two films are part of a canon of portrayals that centre whiteness in the “early days” of the HIV/AIDS pandemic, ignoring the fact that by June 1984, the CDC reported that 50% of all pediatric AIDS cases were among African American children. In 1986, a Morbidity and Mortality Weekly Report found that Hispanic/Latino individuals had a mortality rate that was 3.5 times higher than their white counterparts, during a time when survival outcomes were already very poor. 

This matters. There is tremendous power in story-telling, and our collective memory is malleable and transient. The popular media recountings of the HIV/AIDS crisis are an extension of the medical racism that informed response to it and are directly correlated to the outcomes of communities whose members are still affected by HIV today, almost exactly 40 years after the first case of the “mysterious disease” that would eventually be known as AIDS was published. In 2018, Black and Latinx Americans accounted for 69% of new HIV diagnoses in the U.S. Among gay white men, robust public health initiatives focusing on PrEP and PEP; legislative support to prevent discriminatory practices due to HIV status; pharmaceutical pressure to develop antiretroviral therapies with minimal side effects; and a monopoly over HIV-related narratives have allowed HIV to be rendered a chronic disease. But among communities of colour, HIV remains a silent pandemic. 

Similarly, Americans are witnessing the distortion of COVID-19 narratives in real-time. There was a palpable shift within the national response and the public framing of the virus once data revealed that minority groups were most likely to die and most likely to lose their employment during the pandemic. Now, imagine these same narratives five, 10, 20, and 40 years in the future; imagine the figures who will be remembered — and the faces who will be forgotten. In my recurring daydream of the first COVID-19 blockbuster, nothing has changed. But it doesn’t have to be that way. 

Refinery29 brought together several LGBTQ+ activists — some of whom lived through the HIV/AIDS crisis or work in that space now — to reflect on what COVID-19 revealed about the existence of medical racism. Their conversation explores how the nation's history with HIV/AIDS influenced the public health response to the 2020-21 pandemic, and what lessons about protecting our most vulnerable communities still haven’t been learned. 

Above all, the roundtable is a gathering of voices with a promise to remember the truth about the lives disproportionately lost to COVID-19 in our memories, the stories we tell, the legislation we enact, and the art that we create. — Dalí Adekunle is a health director at the Family Health Centers at NYU Langone, and a writer for TheBody, a HIV/AIDS resource

Phill Wilson, the past president, CEO, and founder of the Black AIDS Institute: On a personal level… there was a lot of deja vu. My grandmother used to say, when white folks get a cold, Black folks get pneumonia. The real drivers of viruses and pandemics and endemic disease are poverty and isolation and lack of access. So when those first cases started to come out and white folks were getting the plague — it was really a nightmare using that same metaphor — what are we going to get? AIDS always, from the very beginning, disproportionately impacted people of colour, both globally and nationally. And what I see happening is a repeat of that now. 

Then, there’s the isolation. The whole LGBTQI [community] back then was founded on creating a world where individuals didn't have to feel like they were the only one. And COVID-19 kind of globally threw us all back into that isolation. I found that it was a year of triggering for me. It was a dramatic pulling me back to the AIDS pandemic in 1983 and 1984 when people went into the hospital, they were isolated, and corpses came out. People were afraid, people were dying without their families and friends. At every turn it's like, Wait — I've been here before. 

Sean Strub, the executive director of the Sero Project, a US-based network of people living with HIV, the founder of POZ Magazine, and the mayor of Milford, PA: Early on when people were dying locally, that was very much reminiscent of a time in the [HIV/AIDS] epidemic when you'd see somebody on Monday and two weeks later they'd be dead. That happened in our town with a neighbour four doors away from me, and there were several of those. 

Nala Simone Toussaint, founder of Reuniting of African Descendants (R.O.A.D.), a trans-led, grassroots initiative that seeks to mobilize individuals to work collaboratively to transform queer and trans communities in Africa through cultural exchange and leadership development: In the intersecting identities of Blackness — or Indigenous-ness, or brown-ness — and queerness, COVID only revealed how people are often treated during a pandemic or epidemic. When we think about oppressed groups of folks who don't have access to housing, who don't have access to healthcare, and who have food insecurity, what happens is that those folks are often left to die or are used as scapegoats. 

When we think about when HIV first became a conversation, LGBT folks were often at the centre of the conversation. But, when you looked at Black and Brown communities, the conversations were not happening, and blame being placed on those communities. But, there was no infrastructure to help support them [in having those conversations]. I'm seeing a repeat in that aspect. There's a shaming of ‘You didn't get the vaccine!’ Or: ‘How come you didn't get the vaccine?’ No one is leading from empathy. It's like these groups of people are messing up. So I don't think it's [just] COVID, I think it's an extension of what we've already been seeing.

Anne-Christine d'Adesky, a journalist and activist who reported on HIV/AIDS from the earliest days of the epidemic: I think on the ground, there was such an awareness that this was, as all pandemics will, going to run along existing systemic inequities: racial, economic, rural, women. People I'm associated with tried, to the degree they could, to do triage with regard to that — and tried to restructure networks that they had in order to pivot and build upon the existing infrastructure of HIV. COVID very quickly illustrated the degree of knowledge, the infrastructure, [and] the resources that [came from] HIV. The lessons were brought forth immediately, including an enormous pressure on the Trump administration, a lot of knowledge at a granular level with regard to the development of vaccines, the need for community oversight. 

I have seen people tremendously mobilised, as they were in the period of the ‘90s. In Black Lives Matter, we saw tremendous mobilisation of trans and queer younger leaders. Those folks, making the connections between the epidemic, COVID, and other inequities. So I feel like a lot of intersectional, intergenerational conversation and organizing has taken place, and there's a fair amount of white ally work that reflects lessons learned from the ‘90s and the aughts with regard to HIV.

Blair Imani, an author, historian, and influencer with a background in reproductive health: One thing that I think has been interesting is the shift in compassion. Seeing that period of time when people felt [COVID] was equal opportunity, and everybody is going to be affected equally — and seeing the immediate rebound when, ‘Oh, turns out it's actually going to be harming the most vulnerable? I'm going to continue to be reckless and not wear my mask because I don't actually care about the humanity of other people.’

D'Adesky: There was a time when everyone felt vulnerable, and that is very different from the early AIDS epidemic. All the way throughout and to this day, a lot of Americans never felt any particular reason to feel that afraid of contracting HIV. 

I also think it's really important to see how the epidemic was politicised and how science itself was so attacked and politicised. That really affected our response — differently, I think, from the HIV and AIDS epidemic. Not that there aren’t parallels, but I think the way [COVID] was politicised meant that some of our prevention messages didn't work in the same way, and I think that's really important to think about. I feel like we have failed to really understand why people are not picking up vaccines often. It's just like we failed to understand for a long time why people didn't want to use condoms when they certainly knew what the condom was and what condoms could do for prevention. We took years to get the messages for HIV nuanced [enough] to target communities where they could be received. And making [COVID] prevention literally an affiliation with a particular political party has made it very difficult [to do that].

Toussaint: I think that that's a stretch for me, when I hear [d’Adesky] talk about condoms, prevention, and vaccination. For Black and brown folks, who often had their bodies used as test objects, yeah, there will be a hesitation on folks getting access to vaccination, without the proper resources that implement [consideration of] how they've been treated historically — in research, who is at the table, how that research is being utilized, and so on and so on.

Wilson: I think that both of you are right. The very reasons why there was resistance — and it was huge, around things like condoms and things like testing, all of those things — are the exact same things we're hearing today about vaccines. When people have been systematically excluded, there’s a lack of trust that happens no matter what the intervention and no matter how simple the intervention may seem. So the reality of some of the barriers we faced around getting people to use condoms [during the HIV crisis] are literally the exact same words that I certainly am hearing around COVID-19. How you start will determine how you end, so if you don't acknowledge people in the beginning, if you don't design systems that respond to people's lived experience and their reality, it's very difficult to recover from that.

Secondly, I can speak from the Black experience — for Black people and especially so for Black queer people — unless we are explicitly included, we are implicitly excluded. So you can't get a pass by saying that vaccines are just available. If you really look at the data, the challenges that are preventing Black and Brown and marginalised people from getting vaccinated is not vaccine wariness, it is access. Where the vaccine wariness is coming in, those are white folks. So now we're being blamed for something that really is not predominantly us. Yet the narrative is still all about medical mistrust by Black people. Of course that's a reality, but the data does not suggest that that's the primary barrier that's keeping us from being vaccinated.

Kate Barnhart, the executive director of New Alternatives, a resource centre dedicated to the care and well-being of lesbian, gay, bisexual, transgender, queer, and HIV+ homeless youth in New York: We're really struggling for access for our clients, who are almost all Black and brown queer kids. Homeless youth are not going to wade through the whole crazy website process to get appointments. In fact, our clients almost never are able to do any kind of appointments because they're transient. So we normally provide drop-in services. So we've been trying to get the vaccine to our space so that people can drop in and get it. And it has been such a struggle. The Department of Health here in New York City... are only just turning their attention to these pockets of the community that haven't been reached. They're only doing that now, and that is just ridiculous and infuriating.

Strub: A lot of what's being said resonates with the experience we've had here in Pike County [in Pennsylvania]. We're only 75 miles from New York, but it's a rural county. There's a lot of poverty in the county. We've been arguing we need more clinics, we need them in different places, we need them at times when people who work can go to them and so on. We did a clinic at our local Catholic church parish hall. We filled it and of course we got a number of undocumented people, who are comfortable going to a church to get vaccinated, weren't going to go to the county communications complex, which is the prison and the sheriff's office and everything else. We did some survey research, and we found [out of the people who were eligible but hadn’t been vaccinated], for one-third [of them], it's just simply about access. The way the county was doing it, you had to take a half a day off work and have a vehicle to go get vaccinated. So that's what we're dealing with here.

D'Adesky: I think one of the lessons from the AIDS epidemic that still hasn't been learned is that a tool itself — a vaccine, a product, a condom — is not a solution. It is part of the solution, but if you don't address the hurdles that get in the way of people's access, they're not going to be able to use it. And I think that's the lesson again being learned, implemented, needs to be talked about.

Wilson: We have to be careful about this notion of access. Access is not that everybody who wants to get a vaccine can get a vaccine. Access is not just that there are enough vaccines available. Access is about trust. If I don't have the availability of someone that I trust, then I don't have access. If the messengers don't look like me… In California, no one would think to do anything without having it in Spanish and some Asian languages. But there’s linguistic language and there’s cultural language, [and] no one seems to care about cultural language. You and I may both be speaking "English" but we may not be speaking the same language and you certainly may not understand me and I certainly may not understand you. If you don't speak to the historical trauma, then you're not talking about access. 

Barnhart: Yeah, I was so upset early on when the first public service announcements came out and they were both white, older men of Italian heritage. I was like, what? This is not going to reach anyone young. It was just a very very narrow perspective. And I searched high and low for materials or anything that would speak to our young people and it just didn't exist. So we just had to create our own, in-house. We just went grassroots with it.

Imani: The Jamaican Ministry of Health, I believe it was, did an excellent musical PSA [for the Zika virus] that was about ‘Turn over the drums, get rid of water, protect babies, protect pregnant women,’ and it was hilarious and it became a meme and people were sharing it like mad. That is education. But there is this perception that if it's scientific, it has to be inaccessible.

Strub: I really believe that the whole AIDS denialism movement was driven in large part by a shutting down of a legitimate discussion about a whole range of issues related to the virus, [such as] transmission [and] treatment, all of which are complicated and nuanced. But they get distilled down, very often, to public health [messages] telling people this very sort of patronizing thing. [You can] actually engage people where they're at rather than overgeneralising or oversimplifying — because people have really good bullshit detectors. They know when somebody's trying to get them to do something rather than to actually address the concern they might have.

Barnhart: One thing that we've learned during the AIDS crisis and carries over to this day is the importance of the harm reduction approach to things. As opposed to just this black and white, do it or don't. The harm reduction approach is a lot more individualised and a lot more flexible. And I think that is more effective.

Leo Rocha, a production coordinator at Vice (owned by Vice Media Group, which also owns Refinery29) and a documentary filmmaker: Something that I've seen working on this documentary about Pedro Zamora [a well-known Cuban-American AIDS educator, who died from AIDS in 1994 following a season on MTV’s The Real World] is the importance of having a familiar face on these issues. Pedro was a lot of people's first time ever seeing someone on screen who had AIDS and was Latino and gay, and that had a huge impact on people. So, I think also just connecting that back to COVID, when people see somebody that they know, like a friend or a loved one, being like, "Hey, I had a positive experience with this vaccine," that's probably going to help change people's minds.

Mataoe Aiden James Nevils, a transmasculine sex educator, harm reduction specialist, and community health advocate: The thing that I would offer as a piece of advice for anyone wondering what to do or how to get involved or how to help communities that are disenfranchised and already marginalised, is to ask those communities that are disenfranchised and marginalised what we actually need. A lot of times there are people making decisions without actually going to the people and saying ,"Hey, we see that you may be affected by this, what will it take so that you're not affected by it?"

Wilson: I would add that in addition to asking us what we need, the most important lesson is for most of the people who are asking that question to get out of the way. If you really want to address access and utilisation, you must understand that... nobody can save us but us. And any initiative that is actually responding to the needs of any [group of] people has to be led by those people. Of course, at the core of these efforts is making sure that the infrastructure exists for people to take care of themselves. I think that's the most important lesson that we learned in the AIDS epidemic. Unfortunately, it is a lesson that has to be retaught apparently over and over and over again.

Toussaint: Yeah, for me I think my point is validating the voices of the folks who are impacted the most. Hearing what the folks who are impacted are saying. Asking what works best for them, and [giving them] the autonomy to say what works. I think oftentimes we don't value people's voices and their lived experience, and how they are receiving harm. 

D'Adesky: You know that expression that we had early on in the AIDS movement, which is very true: People with HIV or AIDS are their own experts. I think that idea has carried through to today. We have incredible capacity and leadership in our communities. But we still have these very centralized, top-down, trickle-down health systems and resources. So, the extent to which we can bring forward the expertise from our communities is the extent to which we're going to succeed. Because people know very well what they need in their communities and they know their own hurdles. We have to be able to make that expertise visible. And unfortunately that's such a major uphill battle when you're dealing with these institutions that are very profit-driven and that have particular political agendas.

Imani: Queer joy is not just being happy all the time, right? Because that's unsustainable. Queer joy is being able to have levity. Because when we think about oppression, it's this fog that kind of always exists and it's hard to be lighthearted when you're going through so much heaviness. So I think that's what queer joy is — to imagine a reality not just absent oppression, but something new and beautiful that is co-created together outside of these oppressive constructs, where we can just breathe easier.

Toussaint: For me, queer joy is folks having access to the bare necessity, and beyond, and more. To paraphrase Nina Simone, I want all that I deserve and then more, and then some. For the trans and queer people that I support in Africa, their queer joy is having a meal and shelter. Their queer joy is being able to see another day and have breath in their body. Their queer joy is that if they get stabbed and they go to the hospital, that their bodies is being acknowledged as a trans person who is in need of help. Their queer joy is having resources. So when I think about queer joys, unfortunately that joy cannot come out of the act of just dancing and smiling and laughing — it actually comes to sustainability and the life of breath.

Wilson: For me, Pat Parker gave me my definition of queer joy when she said: “If I could take all my parts with me when I go somewhere, and not have to to say to one of them, 'No, you stay home tonight, you won't be welcome.’” So for me, queer joy is being able to take all of me everywhere I go, and for me that's multiple things: That's being a Black gay man living with HIV, but that's also being a son and a parent and an uncle and all of those things, to take them in the room and not to have to leave any of them behind. 

Strub: When I see two 14-year-old queer kids having a great time or holding hands or just being themselves in a public environment — something that was so foreign, so impossible not so very long ago and still carries with it significant risk, especially in rural and conservative areas — it just fills my heart. When I see young kids being their queer little selves and escaping all the burdens and pressures and oppressions put upon them, even if it's just in that moment.

Rocha: I have to echo that as well. I think for me, I'm only 21 years old, but even when I was in high school five years ago it was still a very different world compared to how it is now. So I think now more so for me queer joy is being able to see other young people being able to express themselves and not having to worry about being bullied and stuff like that.

Barnhart: I think mine is similar. I mean, what I've tried to do here and in many other contexts is to create a bubble of safety where young queer people can just be themselves. And when it works, there's just an amazing feeling of freedom and of community. And that's really where the joy comes in.

Nevils: I wanted to echo what Phill said, for me queer joy looks like walking into a space no matter what that space looks like and just having that collective, united sigh of relief. I can finally be myself in this one moment. It's about having the spaces where vulnerability is accepted and liberated and uplifted — for those moments where we can sit back and cry collectively and heal collectively and be in pain but also be in joy and love and kindness together. So those are the moments of queer joy that I hold onto because I literally just found that not too long ago, and I wish that every queer person gets a chance to experience that.

D'Adesky: I loved everybody's answers. I think that one of the things that I associate with queerness is definitely the notion of transformation, which is an ongoing process. So I think for me a lot of the joy is the pleasure I see in people who identify as queer who are constantly bringing creativity and humour, and all the other emotions, pleasure sometimes, sadness, all those things to that transformation. I feel like it just shows me — I don't know, it's not even possibilities, but sort of like the breadth of a continually expanding queer consciousness. I love it. I just love it. And I find so much creativity in just how people live, how they choose to, every aspect of what I consider queerness for me, it's a very transformational and very creative joy.