Published in April this year, AIDS and the Distribution of Crises “engages with the AIDS pandemic as a network of varied historical, overlapping, and ongoing crises borne of global capitalism and colonial, racialized, gendered, and sexual violence,” according to the Duke University Press website. “Drawing on their investments in activism, media, anticolonialism, feminism, and queer and trans of color critiques, the scholars, activists, and artists in this volume outline how the neoliberal logic of ‘crisis’ structures how AIDS is aesthetically, institutionally, and politically reproduced and experienced.
“Among other topics, the authors examine the writing of the history of AIDS; settler colonial narratives and laws impacting risk in Indigenous communities; the early internet regulation of both content and online AIDS activism; the Black gendered and sexual politics of pleasure, desire, and (in)visibility; and how persistent attention to white men has shaped AIDS as intrinsic to multiple, unremarkable crises among people of color in the Global South.” Duke University Press has made the book available for free as a downloadable PDF until June 30, 2020.
To learn more about this new book, Terri Wilder, M.S.W., spoke with editors Jih-Fei Cheng, Ph.D., Alexandra Juhasz, Ph.D., and Nishant Shahani, Ph.D. Cheng is an assistant professor of Feminist, Gender, and Sexuality Studies at Scripps College. He has worked in HIV/AIDS social services, managed a university cultural center, been involved in media production and curation, and participated in queer and transgender of color grassroots and nonprofit organizations in Los Angeles and New York City.
Juhasz is a distinguished professor of film at Brooklyn College, City University of New York. She’s been making and studying AIDS activist videos since the mid-1980s. And, in this decade, she’s been engaging in cross-generational dialogue with AIDS activists and scholars about the recent spate of AIDS imagery after a lengthy period of representational quiet.
Shahani is an associate professor in the Women’s, Gender, and Sexuality Studies program at Washington State University. His research and teaching interests are queer theory, transnational sexualities, and gender studies.
Terri Wilder: Congratulations on your new book. Let’s just start out by talking about what inspired you to publish this new book.
Nishant Shahani: I think, first, for us it was a way to try and offer a sort of social and political barometer of signs in the current state of the pandemic, both politically and academically. I think you can say there was a sort of perverse insistence that served as the inspiration for the book, where we wanted to discuss HIV and AIDS at precisely the moment when it is framed as belonging to the past. I think somewhere in the book we call this a national fiction of democracy, right? Which serves the tools of U.S. empowering global capitalism.
So, I think the question became: How do we understand AIDS as a matter of durational difference? That is, still currently being experienced with different intensities and different contexts in communities? Sort of more broadly thinking of a way to link the vastness of AIDS to its present and futures.
Alexandra Juhasz: I would add that another inspiration for the book was the cross-generational AIDS activism scholarship and art that has been very important to me in later decades of the crisis—that is, sharing information across and between generations to make those connections; and also, interpersonally, but also historically, and to mark different emphases and needs across the long duration of HIV/AIDS in our culture.
TW: Great. Your book is titled AIDS and the Distribution of Crises. Can you talk about what this title means and why you decided to name the book that?
Jih-Fei Cheng: Sure. I’ll make an attempt.
My recollection and understanding of how this title came about was our desire to think about the HIV/AIDS pandemic as unending. And the way to foreground that is to think about it as a set of crises; not an individual crisis. AIDS can be thought of as a culmination of a certain historical moment, if we want to think about the ’80s and early ’90s. And it is also a result of much longer historical traumas, which you named when you described the book, such as colonialism, the development of racists and racism, heterosexism and patriarchy, Global North/Global South conditions; and also to think about the emergence of queerness as a politics and as a theory that has enabled a cross-section between scholar, activism, and art.
So, for us, Crises has been a way to think about AIDS as both an overlap of these multiple crises; but also a way that AIDS itself and its historical emergence around the ’80s and early ’90s has continued to be a template or format for reintroducing crises. This density of crises is a way for us to think about the very impacts amongst different communities. And our desire was to think about those communities that often are left out of the conversation when we think about AIDS as only one historical moment, starting in 1981, around this notion of a white gay man who was dubbed Patient Zero.
AJ: I would just add an emphasis, or perhaps continue the conversation, by looking at the word distribution. So, Jih-Fei mentioned a density of crises; but there’s also a distribution of the singular crisis-es, temporally and spatially. So, we were very interested in plotting how the crisis is unique and specific if networked in different spaces and different times—particularly spaces and times that have not seen the same amount of critical, or political, or economic, or cultural attention. So, the Global South, for instance, or within rural communities in the United States—that would just be two examples.
But another brilliant example from our colleague Viviane Namaste is amongst patients in Montreal as a distinct community—if you start thinking about the crisis there, it is very specific, and then, new questions and new traumas and new solutions arise.
NS: Just to quickly follow up with even more examples in terms of this question of distribution: Framing the book around the question of distribution, we can think of, for example, how intellectual patent regimes of multinational companies like Novartis or Gilead preempted production and access to low-cost generic drugs in the Global South. But it also allows us to understand how the emergence of, for example, fascist regimes in the Global South, such as the project of Hindu fundamentalism in India, for example, distribute the crises of internal colonialism and sectarianism within nations.
So, I think this allows us to continue the conversation around AIDS in important directions, and perhaps ask new kinds of questions. For example, how might the occupation of Kashmir and the lack of access to health care compound the crises of AIDS? So, I think distribution as an analogical tool allows for an attention to the sort of fractured logic of globalization of AIDS, which is a central investment in the book.
TW: In the book, Jih-Fei organizes a conversation on the past, as Alexandra tackles the future and Nishant initiates his group’s thinking on globalization. What made you decide to focus on these three areas?
AJ: I’ll start this answer. I think that the areas are ways, again, to put a framework that is both spatial and temporal—a spatial and temporal logic on a long-changing, but nevertheless present, set of traumas, indignities, violences, and human responses. So, that would be the answer to that.
And then, also, I want to acknowledge that in dispatches, which are what those sections are called, we were very interested in speaking to people who aren’t only academics, but who are also activists and artists, so that internally inside the dispatches, we had a variety of languages and practices that really represent a much more diverse expression of the ways that human beings over decades have responded and continue to respond to the crises of HIV/AIDS.
TW: In the preface of the book it poses the question, “In which moments are the historical, cultural, and political contexts of AIDS erased, repackaged, incorporated into, and wielded by U.S. empire?”
That question really stuck out to me. And I wonder if you could just talk about what was the meaning of this question. What did you want the reader to think about?
NS: I think each of these ideas—the historical areas of AIDS—its repackaging, its incorporation—is worthy of its own distinctive response. I think in terms of incorporation and packaging, we were interested in, for example—and I think some of your other questions referenced this—how is AIDS narrated through these hagiographic tales of white heroism? How are the interests of pharmaceutical companies indistinguishable from the interests of the U.S.? I think one of our dispatch contributors, Ian Bradley-Perrin, points to how PrEP [pre-exposure prophylaxis] trials by Gilead were conducted by the assistance of the U.S. military in Nigeria. And decades later, populations in Dharavi, which are slums in Mumbai, will be providing populations for clinical trials of the Trump-touted hydroxychloroquine. Right?
I think we wanted our readers to think about some of the continuity of these legacies into our present by asking that question.
TW: I want to talk about something that you just brought up. Over the past decade, it feels like more than maybe in the past, discussion is frequently taking place in regards to the way in which the historical documentation of the United States, and in particular, the AIDS epidemic, has been realized. So there have been critiques of this documentation, often related to whitewashing and the “white male heroism.” And these are really particularly prominent focal points in analysis—specifically, in academic and activist circles.
Can you talk about what whitewashing and white male heroism means as it relates to the AIDS epidemic, and the historical documentation?
JFC: If we think about AIDS and the U.S. response to it, especially if we correlate that to the present response of the U.S. to COVID-19, we might begin to see some historical cycles around the way that the United States as a global superpower has also been the site of producing the very crises that become pandemics, such as HIV/AIDS and COVID-19.
What often happens in the moment of crises, there’s an urgency to repair that which has already existed. There’s a presumption that this is just a waystation, a momentary problem we’re experiencing. We just need to go back and fix the structures that are in place to make sure that we keep moving forward, in terms of progress.
So, we oftentimes look towards those with the most access to these institutions, whether it be medicine, health insurance, being able to get the government’s attention. We oftentimes heroicize and lionize those people who can very quickly access and maneuver institutional resources. And oftentimes that does give us the immediate repair that we are looking for to stem the pandemic in some communities. And that is oftentimes those communities which, again, have a level of access, or a closer proximity, to institutional stability.
So, getting bio-medications, getting biomedical technologies, or getting medications has oftentimes been equated with ending the earlier part of the AIDS crisis. So, for instance, around 1995 to ’96, treatment activism within AIDS social movement was able to garner, was able to help to work with pharmaceutical corporations to gain—to get—new medications on the market. And that was an amazing, heavily impactful, momentous part of AIDS organizing. But that also meant that suddenly people began to believe that the crisis was over because certain people with access to medications were surviving.
And that’s not true for most communities of color and the Global South, especially when we look at women of color and queer and trans people of color. We’re doing that again in COVID-19.
We are looking towards an immediate biomedical solution—which is important. I will never, ever say that those aren’t important moves. But what we forget is that we are in the place we are, with HIV/AIDS and COVID-19 as overlapping viral pandemics, because the structures do not work. So, to only focus on biomedical technologies is to merely repair a system that’s already not working for the Global South and people of color in the United States and North America.
NS: And just very quickly, I remember when doing research on an essay I was writing on the whitewashing of AIDS in the documentary How to Survive a Plague—I remember coming across AIDS activist protest poems written in the late ’80s, referencing U.S. wars in the Middle East, right? So, something like, “We’re dykes and fags and we’re here to shout. Desert Storm, get the fuck out!” Right? In reference to the occupation of the West Bank, Palestinian self-determination; the U.S. complicity with the Israeli military.
So, when AIDS has been told through a lens of, you know, white male hagiography in texts such as The Normal Heart or How to Survive a Plague or Dallas Buyers Club, I think we lose track of the sexual genealogies and we frame the end of AIDS through arrival points of pills dropped into bodies.
So, Jih-Fei discusses this point in his work on AIDS memory. And Alex has talked about this in her essay of, I think, “Forgetting ACT UP,” right? When she suggests that remembering can be the occasion of dis-remembering, right? That these can actually operate in the same performative vicinity.
AJ: And then I would simply add two things. Criticizing a depiction of the history and ongoing response to AIDS as problematically whitewashing and heroicizing gay white men does not preclude the fact that they were heroes. So, I will say there was heroic, and continues to be heroic activities by gay white men. And we acknowledge it. We thank it. We thank them for it. We understand their human suffering and the toll that was played in that community. Those men are our friends and our allies.
Our work is additive and reparative. It is to say there has also been heroism elsewhere and continues to be heroism elsewhere. It’s not to deny every single person who has suffered and also fought. So, heroicism, say, in the Native American communities in the United States, who Andrew Jolivette writes about in our anthology, for whom the suffering and trauma that they must engage in with courage and compassion starts from a different moment in history, starts from different villains, and continues historically in that way. So it is embodied and enacted with a different beauty, their heroicism.
In relation to whitewashing, I’m a white person, and there are lots of white people who have engaged actively and have suffered actively in the history of AIDS. However, the disproportionate violence, trauma, suffering, and numbers of this crisis has been enacted onto Black and Brown people, and continues to be so. Whitewashing means that we are not allowed to hear and see those stories, that they are not remembered, that they are not told—that those voices are not included, which are the majority experience of this ongoing pandemic and its related crises.
Therefore, we don’t understand it properly. And we all suffer from that—white people, Brown people, people of color—if we don’t understand the complexity and density of the experiences and history of this crisis. And that is the problem with whitewashing: We all suffer.
TW: I saw very clearly throughout the book, describing how feminist women of color, trans people of color, are not recognized—they’re silenced, they’re ignored—and yet, have contributed so much to knowledge.
I teach a class and have my students read Cathy Cohen, Audre Lorde, and others. And, you know, I want the world to read what they’ve written; especially want folks who might not have access to these, kind of, white towers of academia. I guess I’d love to hear your thoughts on a little bit more about why is it so important that folks read what they have to say, in terms of current and future activism?
NS: I think the question of who gets to narrate history and from whose perspective it is written is sort of fundamental and profound to our understanding of the past and future. A book that I teach almost every semester in my LGBT studies which are resources are Dean Spade’s Normal Life; he talks about how pretty much any understanding of social change needs to get rid of top-down models of how power operates. That the most valuable forms of social change will always start from below—that they’re not simply bestowed on vulnerable populations from above, through settled colonial systems of law or, you know, state projects like elections.
So, you know, states get that social change trickles up and not down. And understanding AIDS from the experiences of women of color or trans people of color, indigenous communities, becomes, I think, the most profoundly ethical starting point of analysis and activism, because it allows us to consider the most fundamental conditions of vulnerability, rather than just sort of a single issue of discrimination.
JFC: I want to throw in a little bit of personal experience here, of how I arrived at this conclusion, as well. You know, when I was in my early 20s, working at the Asian Pacific AIDS Intervention Team in Los Angeles—this was in the late ’90s, early 2000s—the crisis, what we called the AIDS crisis, was presumably over because of antiretrovirals that had hit the market. But in the communities I was working with, that was certainly not the case. Women of color, trans people of color, undocumented people, people who were dealing with drug addiction—these were communities that were still being devastated. And I lost community members and colleagues and friends because of it.
Those are stories that may never be told, because they’re not usually heroicized when people pass, or when the work that they do doesn’t get to appear on a major documentary film; or, because the conditions that they’re suffering are very difficult to represent in a mainstream narrative about AIDS that doesn’t simply talk about what it means to run out into the streets and to be recorded, and to be at the table in which you could just speak to the top officials of U.S. government work, or top corporate executives.
And that’s not to say that that work isn’t important. But I realized, as Nishant was saying, that there are many people whose work, especially women of color and queer and trans people of color, will not be remembered for these things. But the work that they did was, in fact, examining our structures of power and the violence that they generate in a way that actually would allow us to see ways of healing and moving forward all together—not simply through piecemeal or trickle-down economics and politics.
TW: I want to close by talking about the idea of ending the AIDS epidemic, particularly in the United States where, in certain geographic areas of the country, money and resources have been invested from a public health perspective. It tends to focus on increasing access to HIV testing; connecting people diagnosed with HIV to care with the goal of viral suppression; and striving to make sure that every person has access to PrEP, in particular.
Why do you think some people are upset about end-of-AIDS stories?
AJ: Right. Yeah. I think there’s two places I’d like to begin this conversation. One is that I think the phrase is not the end-of-AIDS stories; but the end of AIDS.
And those are different things. I have a problem with a political project that says that there will be the end of AIDS on X date, and that, you know, people will name that date. Because it is very clear to me that even if we could get to a place in a specific date in our lifetimes where there was suppression of the infection internally in individuals’ bodies and the transmission between people, we would still have people alive in great numbers who have been impacted by the loss of family members, lovers, and friends, whose communities have been ravaged by the crisis, whose personal histories and bodies have been affected by the crisis, who are taking medication—whether that be PrEP or other cocktails—that have, themselves—what’s the word I want? Side effects, and other effects that then go on over the course of a person’s life to make them sick in other ways.
And there will be a moment when—I’m sure of it—where these will be memories. And then we will still need the stories. So the end-of-AIDS stories will be very important to us. Because we will remember that over some number of decades human beings had the strength, and will, and power to eventually scrub that virus from their cultures, and from the world. However, everything that exacerbated that virus, which is now exacerbating COVID—poverty, racism, homophobia, structural inequalities—still remains. So, a new virus enters this world and then its stories need to be told. We will learn from how we ended AIDS, hopefully, how we can not just knock out a virus but how systemic changes that keep viruses alive disproportionately in certain communities and certain bodies themselves need to be transformed and changed.
NS: So, if I could just add to that. A year ago, I taught an undergraduate class. I think it was called something like Sex, Race, and Reproduction in Global Health Politics. And I remember making just a pretty offhand comment about PrEP and PEP [post-exposure prophylaxis]. And several of the students in my class are nursing majors. Several of them identify as queer. But not one person had heard about PrEP. And I say this, not as a way to focus on lack of awareness on the part of my students, who were very engaged and very bright, but to focus on how there is still a significant gap between biomedical discovery, on the one hand, and awareness and action as to health care, on the other.
You know, one of the essays we mention in our introduction—Linda Villarosa’s piece on the high rates of HIV among gay and bisexual Black men in the U.S. South. She talks about how Black America never got that far. Right? She talks about the men she encountered as appearing to have stepped out of the early years of the epidemic, about—you know, what she calls—they look like they come from a present that looks like a past. Right?
So I think some people are upset about the “end of AIDS” because it simply focuses on the question: End for who? Whose lives are discounted in such narratives? And then, what does such a discounting reveal about our very understandings of which lives matter, of which lives are worthy of care? And since we’ve been referencing obviously connections to COVID, this reminds me of a statistic that is being repeated quite often, that now there have been more COVID-related deaths than during the Vietnam War.
And while I think it is usefully drawing attention to the magnitude of the issue and, you know, genocide as it connects to the U.S. government, this statistic focuses on U.S. soldiers, right? The loss of Vietnamese lives do not even enter the frame, or the consequences of U.S. militarism. So, I think, our historical choices reveal a lot about our understanding of which bodies we frame as worthy of grieving, or even worthy of understanding who we consider as human to begin with.
JFC: I agree with everything that Alex and Nishant have said. What I’d like to add is that when we think about viruses, we oftentimes use the language of war and policing. And that isn’t simply a metaphor. Susan Sontag has already written extensively about the problem with illnesses and metaphors, including AIDS and Its Metaphors. These come across as metaphors in the way we talk about them. But what they are is also a way to think about the virus itself as the problem, when the virus, as Alex has said, and as Nishant has also mentioned, is revealing to us the vulnerabilities, the structural vulnerabilities and biases that make certain communities, especially Global South and people of color, the site of the ongoing AIDS pandemic—and now COVID-19—and other epidemics and pandemics.
If we look at the history of viruses, we also then have to understand that viruses are a result of longer histories of agricultural and colonial labor on plantations. And I think this is a problem, when we think only about ending HIV/AIDS, we don’t understand that viral pandemics actually emerge from massive human resource extraction projects. And the result of viral pandemics amongst humans—again, as I said before—tends to shape solutions only to save humans. And these biomedical solutions only then can be accessed by certain humans who get to exercise human rights. So that’s oftentimes, like I said before, white, cisgender, presumably heterosexual men, with money and access to institutions.
If we indeed look back at the history of colonial labor plantations, colonial plantations, and racialized and gendered labor on those plantations, we begin to see that viral pandemics actually emerged from a longer history with capitalism, wherein we produce racial ethnic categories through native displacement and disconnection, Black enslavement, other forms of people of color who are used for labor in agriculture. And then we end up dismantling ecosystems that actually have served to protect a vast number of different lives—and they’re not just humans.
So, I can go on and say more about that. But I don’t want to veer this off into a different conversation. But I think we need to really step back and ask: Is ending AIDS really the way to imagine the radical transformations that are necessary to end viral pandemics, and also ecosystem dismantling? If ending AIDS were the solution, then we wouldn’t have something like COVID-19.