Souls Forum: The Black AIDS Epidemic

Marlon M. Bailey and Darius Bost: We have brought this group together because we know that your varying perspectives will produce a robust conversation. Thank you again for your participation, and we look forward to what promises to be an amazing and insightful conversation. We have developed questions and asked Dr. Dana Hines to take the lead on facilitating this conversation.

Dana Hines (DH): How did you come to this work on HIV/AIDS in black communities? And how does your work intervene in historical and/or contemporary HIV/AIDS discourse and politics in black communities?

Jennifer Brier (JB): I have had many different paths into historical work on HIV/AIDS in black communities, and communities of black women in particular.

Growing up on the Lower East Side in Manhattan in the late 1970s and 1980s, my earliest experiences of AIDS (not yet HIV/AIDS), in my neighborhood were about race, class and gender. The men and women on my block affected by AIDS were not the white gay men of Chelsea or the West Village, who I also orbited around as a young, white, not-yet-identified-queer, feminist, but rather they were workers in the street economy–whether in low-level drug selling or sex work–and were regularly caught up in the policing and prison machine of the early drug war. The “get-tough-on-crime” and “just-so-no-drugs” ideology of the Reagan era brought AIDS to my block with a vengeance, and that has shaped my memory of the epidemic in ways that have influenced my work as a historian.

I say that even as I recognize that the other paths to my work more squarely on HIV/AIDS in black communities–I am currently working to co-create a living women’s history of HIV/AIDS with about 40 women living with HIV/AIDS, the majority of whom are black–have been as much about my own failure to fully account for anti-blackness in my own published work on the history of AIDS and Infectious Ideas as it has about my memories of growing up. The book is now 10 years old, and the distance has allowed me to see it as a corrective in some ways: I wrote it as an intervention to a literature I read as largely ahistorical. The distance has also shown me the corrective that needs to be applied to my historical work: a centering of how anti-Blackness and Black organizing and cultural work have always defined the epidemic and therefore must be at the core of the historical assessment of HIV/AIDS.

Johnnie Ray Kornegay III (JRK): It’s such a vivid memory for me. In 1985/86, I was in third grade, and my teacher Ms. Shelly asked us to pick a newspaper article to read as part of a lesson. I chose an article about AIDS. I don’t recall the context of the article specifically, but I do recall the focus on death. I remember thinking that folks shouldn’t have to die because they are sick. I have been connected to this work my entire life just about. When AIDS became part of the global consciousness, I was about 4 years old. In 1996, I volunteered briefly for a local, grassroots community organization the Chester AIDS Coalition. I also became a certified HIV education trainer by the American Red Cross at the time.

So, for my entire adult life, even though I have not always formally worked in a field with an HIV specific focus, I was always doing this work in my personal life, with friends and family. My current work intervenes in the historical context by telling the stories of how Black folks worked and died to take care of our community during the darkest days of the epidemic in the 80s and 90s. There were so many folks, regular everyday folks, who did work all throughout our communities. That foundation has to be protected and celebrated. That soil must be tilled.

My current work seeks to interrupt the, often stigmatizing, discussions about HIV and its impact on Black gay men, by injecting truth, honesty, care and beauty through photography. It does this by centering Black gay men living with HIV and their stories. I can’t explain it, but I can only describe it as I have to be sure I’m taking care of those working with me. I also do this through my work as Mobilization Director for Counter Narrative Project. We build power among black gay men and work in coalition and solidarity with all movements committed to racial and social justice. We often hold space through forums, and use media to share our stories.

Angelique Harris (AH): When I was in college, I had a close friend who had AIDS. Interested in learning more, I served as a teaching assistant for a course called AIDS in Societies. I was fascinated by the sociocultural constructions of HIV, particularly within Black and queer communities. I was interested in how HIV/AIDS was constructed within different communities and exploring why some groups were considered more “at risk” than others. In graduate school, I planned to study sexual risk-taking behaviors among Black gay men. However, at the urging of my dissertation committee to expand my work and make it “sociology” focused, I began to examine institutional perceptions of homophobia and stigma associated with HIV within Black communities. I found that the research often pointed to the Black Church as the root of these stigmas and discrimination without noting and examining the churches who were welcoming and affirming to LGBTQ groups and promoted AIDS education and awareness. This led to my work on AIDS in Black churches and my understanding of sociocultural constructions of health, illness, and disease. As such, my work focuses on how HIV is constructed in Black communities and how, based on these constructions, groups work to address the health issue within marginalized communities.

Dagmawi Woubshet (DW): I discovered the poetry of Essex Hemphill and Melvin Dixon, and the films of Marlon Riggs and Isaac Julien in the late 90s as a graduate student. Their work had a profound impact on my sense of self and the direction of my scholarship, and would be the seed of my dissertation and later book, The Calendar of Loss, on the art and politics of mourning this generation of gay artists engendered. Their work was my gateway to thinking about HIV/AIDS in black communities in the U.S. While working on this book, I spent a year in South Africa researching how artists and activists were dealing with the HIV/AIDS crisis. Also, around the same time, my aunt started the first HIV/AIDS testing and counseling service in the Ethiopia, and through her work, I began to follow closely what was happening in Ethiopia at the time. So, for me, I guess, thinking about HIV/AIDS in black communities has always meant thinking about black communities expansively, here in the U.S. and internationally, particularly in Africa. Along with this black international outlook, as a humanist, I have been committed to showing the interface between art and politics—both the way in which HIV/AIDS fundamentally altered our artistic and cultural conventions of mourning like the elegy, the obituary, and the funeral; and also how HIV/AIDS fundamentally changed our politics of sexuality and race.

Linda Villarosa (LV): I wrote my first story about HIV/AIDS for Essence Magazine in the mid-80s, when the disease was still called GRID—gay related immune deficiency. I was a very young inexperienced journalist, surprised to get such a big assignment. I interviewed a black woman in the Bronx, who had been infected with this strange new disease, along with her baby. By the time the story ran, the mother and her baby had died. I later found out that several other writers had turned down the story. I assumed this would be a “one and done” situation for me as far as covering this scary disease. Surely, this plague would be over shortly; there would be a solution.

In 1994, I edited an Essence cover story about Rae Lewis Thornton, a Chicagoarea woman who was living with AIDS. Now, the disease had taken hold in the black community and was affecting African-American women disproportionately. Again, I thought to myself, this will be over soon; there will be a solution.

In 2004, I wrote two front-page stories for the New York Times about black women and HIV as well as the high death rates among African-Americans—despite the advent of anti-retroviral medication. I thought to myself, this has got to be over soon—now there is a solution. But, in fact, after 1996 when the new medication saved so many lives, the epidemic became disproportionately a disease of African Americans.

Marisa Miller (MM): As a black trans woman being at the table, being invited to the table versus not being invited to the table, has been something that I have had to determine what that looked like. A lot of the invitations were because I showed up, and it became apparent that I needed to be in parts of the conversation. But when we talk about politics we would be remiss if we didn’t talk about what the political climate looks like now and why historically we are here today. Historically, trans people have been erased from the very beginning. So why are we so alarmed now when Donald Trump has done it so blatantly and so racially? We have always had to fight for job rights, we have always had to fight for equity, we have always had to help others decide what bathrooms we go to. Going to the bathroom was never a problem for trans people until other people decided that we had issues. I mean we have always fought. But this is nothing new. This is becoming new because systems that say that they are affirming are being challenged for allowing these actions to go on. This has been a fight that we have always had so when you talk about politics that’s why there are often trans people that don’t understand or care to understand why voting is important. Why should we involve ourselves in that voting process when people aren’t taking the time to explain the process, because people don’t take the time to explain that process to people. When we really talk about bringing people to the table, when we really talk about engaging black people, we have to look at it from a historical context. Black people have always been at the back end of the conversations so just because some of us have achieved forms of education doesn’t mean that others have. We have to continue to educate at the community level if we are talking about community work.

DH: What is the status of the HIV/AIDS pandemic among Black communities? What do you see black communities doing to withstand, fight against, and end the HIV/AIDS pandemic in black communities?

(JB): The first thing I think of when I read this question is that the AIDS crisis is not over. I would go even further, however, to suggest that there is no single AIDS crisis. AIDS is a set of crises (see the forthcoming collection, AIDS and the Distributions of Crises from Duke University Press, that several writers in this issue have pieces in), a syndemic of crises that have persisted over four decades because of historical and systemic structural violence. I would also underscore the “not over” part by saying that it is not for lack of trying, especially among Black communities, who have imagined and sought to make concrete some of the most innovative models for making AIDS truly over. Here I think about the work of the people no longer on this earth like Marlon Riggs and Essex Hemphill and organizations like the Counter Narrative Project that seek to show how poetry can save your life. I also see how the Positive Women’s Network, one of the organizations featured in film “Nothing Without Us: The Women Who Will End AIDS,” seeks to activate women living with HIV/AIDS, paying particular attention to women of the African Diaspora and the Global South, whether on the African continent or in the southern United States.

When I look closer at my own current work to build a living women’s history of HIV/AIDS, I am struck by how long Black women have been minoritized and invisibilized by people interested in the history of HIV/AIDS. In a piece I published in the Oral History Review in 2018 (doi:10.1093/ohr/ohy003), I give lie to the claim that black women were ever “the new face of AIDS.” Instead, I detail that Black women, were among the first people living with and dying from HIV/ AIDS. Some of the earliest public health reports documented that Haitian-origin women were four of the first thirty-four cases of AIDS among Haitian immigrant communities in the United States and that an additional three women, only one of whom was identified as Haitian, bore children with “unexplained cellular By 1990, AIDS was the leading cause of death among African American Flash forward to 2013: one in four people living with the virus were women (287,500) and sixty percent of those women living with HIV/AIDS (WLWHA) were African American (it is not clear from the data where Haitian-origin women fit in this more current

Equally important in answer to the question is that Black women long-term survivors, defined as people who have been living with HIV since before the existence of protease inhibitors that effectively allow people to treat the effects of HIV, must be at any table where we talk about how to withstand AIDS. That is because they have done it. They have survived AIDS and some have thrived. They have done so by imagining and realizing ways to fight against the medical industry and neoliberal state even as those entities seek to withhold or ration care to people defined as deserving of it. Homing in on the experiences of Black women living with HIV/AIDS also means that you are looking at the intersections of so many different crises and struggles of our contemporary moment, whether you are thinking about mass incarceration and abolition, reproductive justice, or the evisceration of the welfare state.

JRK: Hmmm, what’s the status of the pandemic? Well, to put it short, it’s still here. HIV isn’t leaving us anytime soon, I’m afraid. I am confident that we’ll see a vaccine or cure in my lifetime, but when … well, that I don’t know. Within the Black community conversations about HIV are siloed into public health spaces, HIV focused spaces, LGBTQ spaces and community health centers that have a way of pathologizing poor Black bodies. In these spaces, HIV is discussed, but what I know is that the conversations about HIV are still taboo. When I stood on the outside looking in, I had to find the conversations about HIV. It wasn’t like the 80s and 90s when everyone had a red ribbon on at an awards show, or rappers and singers were making songs that directly referenced HIV, or painters painting through their pain related to HIV. Now, you have to be looking for information to find it.

AH: The pandemic has not impacted the many members of Black communities equally. The hardest hit groups are Black queer men and Black trans and cis women, basically, people who have sex with men. It is important to note that Black communities and groups have taken active steps to reduce the impact of the pandemic. There are Black AIDS service organizations all over the country working to eradicate the pandemic. What’s especially noteworthy is the number of HIV/AIDS education, awareness, and activism efforts lead and organized by Black women. When I first began my work on AIDS activism in Black communities, I quickly noted the number of Black women involved in community AIDS awareness efforts compared to their male counterparts. My interviews with the dozens of Black women AIDS activists I have spoken to throughout the years note how high infection rates in Black communities as well as their desire to help “save the race” (as one of my respondents noted) was at the root of their activism efforts.

LV: As I tried to show in my NYT magazine story, America’s Hidden HIV Epidemic, the HIV/AIDS epidemic disproportionately affects young black gay and bisexual men, and is centered in the South. Black communities are expected to fight the disease ourselves—as in Our People, Our Problem, Our Solution—but the continuing epidemic is a national problem and should be treated as the crisis and emergency that it is and long has been. Fighting HIV/AIDS starts with tackling the deep structural issues that caused the epidemic in the first place, starting with discrimination and inequality.

I think we need to honor, celebrate and support the work that’s already being done on the ground, beginning with the Saving Ourselves Symposium as well as My Brother’s Keeper in Jackson, Mississippi and other Southern nonprofits that are directed toward queer men of color and transgender women. The people in these groups are resilient, creative, engaged and determined to take care of themselves and each other.

MM: I think that one of the most powerful things that continue to happen within the black community is we weren’t dying as progressively before, and I think that when we stopped dying as progressively people begin to get hope and involvement. When people begin to really get involved, and I would say me being from Indianapolis and that particular area and the TGA that was in that particular area and the Ryan White services and us being able to have those cycle social groups. Brothers Facing It Together at that particular time and Brothers United that was one of the things that saved my life. That was one of the things that gave me the ability to be around other individuals who were living with the same, because I was living with HIV then it wasn’t living with me I was living with it at that point. And I think that others think that made black people in the movement more progressive, historically, was that the Nate Rush’s and the Tom Bartenbach’s and the Mike Wallace’s and Larry Jemison’s, those individuals in particular were doing the work in Indianapolis early on when someone tested positive. You know they made sure that one way or another you got connected–they were going to call if you were involved. So, I think that if I look at it from that perspective that we have had a long fight to be as involved as we are now. Now we have the perfect opportunity with ending the epidemic by 2030, and we know that the community has to be a part of this particular plan. It’s in writing and a lot of the leaders understand that the only way that we’ll end the epidemic which means the amount of new infections per quarter–we know that we have to engage communities of color. So here’s the time that for the black folks to take the top.

DH: What are some of the most pressing concerns for black communities who are the most vulnerable to HIV? From your perspective, what is most needed to end the AIDS pandemic in black communities? We talked about some of them; we talked about some of the institutional barriers. Again, what are some of those factors in addition to social inequality that would make black people more vulnerable to HIV?

LV: To end HIV/AIDS in our community, we need a concerted effort, but, instead, the opposite has happened. Late last year, President Trump disbanded the White House advisory council on AIDS. At his state of the union address he vowed to end the epidemic in 10 years, with no details or funding. The community needs to hold the government’s feet to the fire.

DW: I agree with Linda that a concerted effort is necessary to end the AIDS pandemic and that the recent moves by the Trump Administration are alarming indeed. For instance, Trump’s proposal to slash the funding of PEPFAR would have devastating consequences on black people in the global south; as the ONE campaign recently reported, that cut could lead to “nearly 300,000 deaths and more than 1.75 million new infections,” a toll that would be disproportionately felt by people living in Africa.

AH: The most pressing concerns for those in Black communities in the U.S. North America who are most vulnerable are discrimination (racism, sexism, misogynoir, biphobia, transphobia, and homophobia) and poverty. And of course, discrimination and poverty lead to a lack of access to health care and health-based resources, housing, employment opportunities, etc. Importantly, these issues are intersectional in nature, requiring a multilevel and varied approach. Unfortunately, as Linda and Dagmawi suggest, this current presidential administration has certainly been a challenge and further encourages us to continue to rely and focus on non-profits and non-governmental support. As such, substantial funding, as well as a real commitment from governmental organizations, pharmaceutical industries, and researchers to study the impact that HIV has for those most vulnerable, would have a great impact on these rates.

MM: I think that the funding became available when people really realized that these people are not going anywhere. We have to address the fact that we need to put funding into it. But if they were really intentional historically then forums and public health entities would have addressed trans people at an earlier date. It wouldn’t have just been male and female and all of the numbers and data and the operational procedures for trans people in spaces would have already been developed. If intersectionality was really recognized, but it wasn’t recognized. We were all recognized as being gay. Men that wore wigs. Until they realized that, well wait a minute. They aren’t just wearing wigs you know it’s more to it. So, those discussions begin to happen and then when funding becomes available then everybody becomes a trans advocate. That’s how the institutional harm continues to take place. You know we had those influencers that began to talk about trans and trans became a conversation and CDC recognized that we needed to be funding these areas. Public health recognizes, you know, now we are talking about people of color, everybody comes to the table. Then when we start talking about non-binary and gender non-conforming, oh my god everybody gets to the tables. When we were already gender non-conforming, when we were already living the lives that we couldn’t live and that we didn’t know what we would call it. So now it becomes a specialty, because the other people–the influencers that are of not of color have said this is something we need to talk about. So, it’s, you know, it happens it is like wearing a pair of skinny jeans, things get trendy and everyone wants a pair.

4. From your perspective, what other modes and sites of social inequality that make black communities more vulnerable to HIV? and how do you observe this playing out in your work?

JB: Scholars, activists, and artists have spent decades detailing and addressing how structural violence disproportionally produces ill health among disenfranchized communities. Examples of this from the area of HIV/AIDS Studies include analyses that link racial segregation, unfair housing practices, and rates of HIV/ AIDS infection, and attention to how criminalizing the behavior of people living with HIV furthers state violence and does not address the ongoing epidemic. We have collectively allowed ourselves less space for how we might develop a theory and practice of structural care? How might we imagine structural care as meeting the force and scope of structural violence? Would this require disrupting the sense that biomedical models and solutions (think: PrEP or testing) are going to end AIDS on their own? How might we map and sustain deeply ethical and humane mechanisms to live with HIV/AIDS?

The State of California has just announced that it will provide 60 days’ worth of Truvada over the counter to anyone who has tested negative for HIV in the last 7 days. I am eagerly following what comes of this, but I also know that PrEP will not mark the end of AIDS by itself. When will a state agree to fill a prescription of supportive housing for all people living with HIV/AIDS? When will we see the work of caring for people living with HIV/AIDS, especially if they are on Medicaid, as a job that deserves a living wage and that in the process we will be intervening in AIDS crises?

LV: Intersecting structural issues that lie just beneath the surface of every health issue, including HIV/AIDS, as well as heart disease, cancer, diabetes, maternal and infant mortality, asthma and so on. The most pressing, of course are poverty and inequality. Homophobia, fear and social disconnection keep people from testing and treatment, and a lack of love and support fuels the spread of the disease.

AH: Exactly as Linda says, intersecting structural issues. And part of the concern here is that because the issues are structural and intersectional in nature addressing the pandemic in Black communities will be difficult (although, as history has shown, not at all impossible) and will need a varied approach. Let’s look at the high rates of incarceration among Black men as an example. Incarceration among Black men, specifically, helps to fuel the epidemic by (for those who have sex with men) reducing the availability of male sexual partners in the community causing a higher likelihood of sharing sex partners, and potentially, disease. This incarceration increases rates of poverty in Black communities by removing a potential earner from the home. This incarceration also puts the men (and their future partners) at higher risk as they don’t have access to safer sex paraphernalia in prison. I could go on and on, and similarly, could also go on about how other structural issues, such as poverty, access to education, etc., impact HIV rates within Black communities. These structural issues limit access to care, resources, and importantly, the opportunities that could reduce infection rates in Black communities.

MM: We know that PrEP works. No doubt about it. Now, the accessibility to PrEP to black communities is something we have to figure out. Cause PrEP is definitely the passage to us– biomedics period, and PrEP being one of those biomedics and use it another way as an antiretroviral service. So, either way PrEP with Truvada on either side will be key to us ending the epidemic. When I say on the ART side, is that people have to remain adherent. You know stuff isn’t going to work if we aren’t working on the other side. So, you know we have to work on both sides, but let me state a question. PrEP is essential to people staying negative, but there’s some other things that we have to figure out: the accessibility to PrEP.

DH: We can’t forget about that because adherence is going to also help to end the epidemic. But what about that percentage of the population who still do not know their status and who for them testing is so fear filled who can’t take that step to get tested? How do we begin to work through that because this is still an issue? It’s still an issue and a major barrier to getting testing. We know that testing is the key to either side of the continuum. Either being on PrEP or prevention or being on Truvada for prevention or being on Truvada as part of your treatment regimen.

5A: Scholars: What gaps still remain in the field of HIV/AIDS studies? LV: There’s plenty of research. We need action.

DW: In the humanities, there is a dearth of scholarship committed to the intersection of Africana and HIV/AIDS studies. The pioneering work of black gay artists in the 1980s and 90 s, as well as the work of contemporary black gay artists, offers an incredible archive and body of work to reorient our thinking; and yet that body of work has not received its due. I think this is in part related to the faddishness of the academy; that somehow studying AIDS in the humanities is a thing of the past and not of the present and at the forefront of humanist inquiry.

AH: What is needed is research examining how Blacks work to reduce rates of HIV within their own communities. Research always shows us as victims as opposed to active working to address the issue within our communities.

5B (Activists): Part of what the special issue aims to do is to promote coalitional politics around the HIV/AIDS pandemic in black communities: how do you see your activist work as contributing to this project? What still needs to be done among activists to advance this project?

JRK: Black communities are doing amazing work to end the epidemic. At Counter Narrative Project, we are often examining, programing and mobilizing around the lives of Black gay men as human beings who live full lives. Our lives just happen to, often, overlap with HIV, as well as racism, economic distress, criminalization, food insecurity, lack of access to healthcare, etc.

I see theater, writing, community work, legislative/political work, protests and films all to end the pandemic in our community. I am saying this recognizing I probably see this, because I am doing it. If I ask someone not connected to this work right now, I’m not sure they’d see what I see. Not because it’s not public, but because of the stigma associated with HIV.

AH: My work is much more academic in nature, and by that, I mean I work to research, present, and publish in this area to provide more education and awareness about how sociocultural factors impact races of HIV within communities of color. As such, I try to contribute to the research that examines how different groups perceive and approach HIV/AIDS. I emphasize that people are already working to address health disparities and inequalities within their communities. Research always focuses on the problems within communities, Black in particular, while ignoring the positive social changes taking place.

MM: “To even get there, we have to do what I said first. We have to be able to –. In order to get to anything that is collective, we have to refine what is individual and how we define refining is with us because nobody will ever be totally fixed. As much as people think and assume people are totally fixed, I mean there will never been a moment of being totally fixed. You know we really want to get to a collective conversation, we’ve got to restart having those individual and intentional conversations in systems and in individuals. You know I often go back to Brothers United and I often even six years later, almost five years later I lay in my bed and still think about what would make Brothers United work, and it’s that– if you keep doing the same thing, you’re always going to get the same results. I think that our lives have become so that “I have all the right answers” to that we will never get to a really certain good place of decolonization, because in order for us to get to decolonization it can’t be all leaders. Somebody has to be the gatherers, somebody has to set the direct–. You know in order to really get there the I’s have to go and have to become the We and how we get there is definitely equity. Money has been the root of all evil and it continues to make people fight and make division possible when we talk about divisions in the trans community, division in the MSM community, division in the black lesbian community or lesbian communities. It’s because funding and power, but how can we empower? We have to learn to empower.”

Acknowledgments

Marlon M. Bailey and Darius Bost would like to thank Kaleb Anderson for their research assistance with the forum.