“Thinking with Care” in the Archives of the early AIDS Crisis

By Jennifer Ansley

In his introduction to Melancholia and Moralism: Essays on AIDS and Queer Politics, the late Douglas Crimp reflects on what he calls “the turn away from AIDS,” which he argues is not only the result of a turn toward gay respectability politics that emerged following the early years of the AIDS crisis, but also “the overwhelming [effect] of cumulative loss”—an attempt to seek relief from the ongoing tragedy of AIDS, particularly by those, who as a matter of life and death, have been forced to respond to it.[1] At the same time, he argues that AIDS “showed anyone willing to pay attention how genuinely ethical the invention of gay life had been” and he celebrates, as we should, the gay and lesbian community mobilization that built AIDS service organizations, demanded government funding for research, expanded treatment options, fought institutional forms of discrimination, and invited media coverage of the crisis, but also the politically organized response of a “community whose theory and practice of sex made it possible to meet the epidemics most urgent requirement: the development of safe sex practices.”[2] As Deborah Gould adds, the ambivalent “constellation of feelings” produced by the crisis—shame, pride, anger, fear, and so on—shaped LGBTQ+ political organizing from the earliest years of the crisis to the present.[3]

I spent most of Pride 2019 in New York, not parading or partying or visiting the many public exhibits dedicated to the 50th Anniversary of Stonewall, but rather, in the Brook Russell Astor Reading Room at the New York Public Library, which holds the records of historically significant activist groups and AIDS service organizations that include ACT UP NY, Gran Fury, Gay Men’s Health Crisis, and the People with AIDS Coalition, and I found that being with these records in the context of Pride exacerbated my own ambivalence about the celebrations outside. I not only identified with the concerns of Myrl Beam and others that the corporatization of Pride has resulted in the erasure of multi-issue queer politics, but I was also struck by the fact that in the “turn away” from AIDS, we’ve forgotten not only the community-based victories that Crimp names, but the degree to which, for many, the organized political response to the AIDS crisis was also a more general call for access to meaningful, affordable, and affirming healthcare for intersecting populations of queer and trans people, people of color, disabled people, and incarcerated people—a call that has yet to be sufficiently answered.[4]

In the decades since Crimp’s essay was first published, there has been renewed interest in the cultural history of the early AIDS crisis as evidenced by the public exhibits and events such as those organized by Visual AIDS; multiple documentaries, inlucluding Jim Hubbard and Sarah Schulman’s United in Anger: A History of ACT UP, which builds on their work as co-curators of the ACT UP Oral History Project ; public forums such as ACT UP’s “Thirty Years of ACT UP/ NY: Hidden Histories and Voices, Lessons Learned”; and numerous scholarly projects that challenge received wisdoms and highlight historically marginalized experiences of the crisis.[5]  I went to the archives in the conext of these public and scholarly discussions with the question of what we might still be able to learn from the past as we continue to grapple with insufficient access to healthcare resources for marginalized populations. I asked: How might we transform the “turn away” from AIDS  into a “turn towards” that can help us understand not only how to better address the ongoing AIDS crisis, but also, what can we learn about how to take better care of ourselves and each other in the context of multiple intersecting public healthcare challenges?

Among the collections I was most interested in were those from the People with AIDS Coalition (PWAC). The People with AIDS Coalition’s New York Chapter was created in 1985, following the National Gay and Lesbian Health Conference in Denver in 1983. It was at the Denver conference that activists first articulated what came to be known as the Denver Principles—the founding principles, not only of PWAC, but of the gay and lesbian community’s political response to AIDS more generally. The Denver Principles famously begin by stating: “We condemn attempts to label us as ‘victims,’ a term which implies defeat, and we are only occasionally ‘patients,’ a term which implies passivity, helplessness, and dependence upon the care of others. We are ‘People With AIDS.’” The statement then goes on to define the rights of PWAs to—among other things—receive healthcare free of discrimination, to enjoy satisfying sexual and emotional lives, and to be at the center of their own healthcare decision.

Following from the values named in the Denver Principles, PWAC’s projects included Newsline, the first and only publication exclusively by and for people living with AIDS. While the New York Native and Gay Community News are often cited as among the publications to act as a community resource for information about the disease, Newsline stands out as a nationally-circulating information source that centered the voices and experience of PWAs, and yet, few scholars have engaged deeply or meaningfully with its contents. This is, perhaps, explained by the fact that in a period of  intense medical uncertainty, Newsline acted less as a news source (except to the degree to which it reprinted news articles from other publications), and more as site for practical information sharing among people with AIDS, an emotional outlet, and a forum for community-centered debate. Susan Chambré points out that, indeed, Newsline (which would go on to be disseminated via computer bulletin boards) predated more elaborate forms of community-based information dissemination that emerged with the expansion of the internet.[6]

Newsline’s radically open community-based model of publication makes it difficult to discern a coherent narrative of the crisis from within its pages; rather, one finds often colloquial essays that represent a “constellation of feelings” –above all the sense of overwhelming desperation and grief in a moment when the ongoing loss of life seemed the only certainty—and even as  individual pieces, the essays aren’t always written in ways that allow one to clearly identify a single argument or message. For example, in one article titled “Consumerism, Appliances, Telemarketing and AIDS,” Larry Bee offers advice for PWAs and their caregivers about ways to make meal prep more efficient, the benefits of investing in a VCR, and the suggestion that when feeling isolated, one use telemarketers and 411 operators as sounding boards.[7] Meanwhile, in “Hope Springs Eternal,” Douglas Lewis shares his initial elation at falling in love and his subsequent grief over this belief that the man he loves doesn’t love him because he’s HIV positive.[8]  Across issues, the contributors—most of whom were not professional writers—debate the closing of the bathhouses; the efficacy of AZT; the benefits of positive thinking, visualization, and meditation; the cause of AIDS (during a period of intense speculation, when not everyone agreed that HIV causes AIDS); and a whole host of experimental treatments for the disease, often backed by personal anecdote. Meanwhile, Newsline’s editorial policy makes clear that “the articles in this publication are for information only and do not necessarily constitute an endorsement of any health or exercise regimen or general program or event,” and indeed, if we can discern anything from the pages of Newsline, it’s the deep alternating anger, fear, anxiety, shame, grief, love, and pride that inflected people’s experience of and response to the crisis.[9]  

As both the AIDS crisis and the distribution of Newsline expanded, it’s editorial policy also meant, however, that it also included news, information, and experiences relevant to the most marginalized PWAs, including women of color, people with disabilities, and those who were incarcerated, whose experiences are most often missing from the historical record, and which emphasize the degree to which the fight against AIDS was a more general fight for expanded access to healthcare for marginalized people. For example, Newsline often carried fliers for Sister-to-Sister, a network of self-help groups specifically for Black women with AIDS and/or their infected children; announcements regarding safer sex trainings for people with disabilities; information requests from the AIDS & Disability Action Project; and letters from prisoners and news from the Prisoners with AIDS-Rights Advocacy Group (PWA-RAG), which resulted in “Prisoners Perspectives” eventually emerging as its own sub-section of Newsline [10] [11] [12]

As a queer-identified scholar born in 1981, the same year that news of AIDS began making headlines, I’ve grown accustomed to neater historical narratives of the crisis, ones that typically begin and end with Gay Men’s Health Crisis and ACT UP, and that forget the viruses’ ongoing impacts, particularly in poor communities of color.  But as I pored through issues of Newsline, which articulates the emotional experience of the AIDS crisis in ways that are less easy to resolve into a well-defined story, my understanding of the crisis shifted from a distantly observed history to feelings of grief over a massive loss of life that has produced limited structural change in the ways we provide care for the most vulnerable among us, and in that grief, Newsline troubled, in particular, the more heroic narratives of the AIDS crisis that we find ourselves inclined to celebrate during Pride.

But Newsline, in its roaming but deep articulation of the emotional experience of the early AIDS crisis does, I think, begin to offer an answer to the question I was I after—of what it might take to “turn toward” and learn from the AIDS crisis as we struggle to address multiple ongoing health crises in our communities that include, but are not limited to, AIDS. 

In her book Matters of Care: Speculative Ethics in More than Human Worlds, Maria Puig de la Bellacasa points out that the very etymology of care “includes notions of both ‘anxiety, sorrow and grief’ and ‘serious mental attention.’” While caring might motivate “serious mental attention,” particularly in the context of scholarly work, it also risks leading us into anxiety, sorrow, and grief that makes it difficult to sustain. In other words, when we care, we always experience a degree of vulnerability and in that experience of vulnerability, there’s always the temptation to turn away. 

Rather than seek resolution, however, Puig de la Bellacasa argues for a “politics of care” that doesn’t strive to “keep our knowledge untouched by anxiety” and the possibility of inaccuracy.  Instead, she argues, “thinking with care”—producing knowledge that cares—is about allowing ourselves to be touched, rather than observing from a distance. This way of thinking she goes on to write, is necessary in order to acknowledge and expose our historical, social, and environmental entanglements and interdependent relationships with other beings (for better and for worse) in ways that have the power to transform relations and practices of care, and with them, the worlds in which we live.[13] And I would add that, as we learn from the pages of Newsline, in the archives, “thinking with care” requires that we be present with a range of potentially contradictory feelings that include grief, anxiety, shame, love, and pride, to name a few, and to resist the urge to smooth out the contradictions, conflicts, and rough edges lest we lose sense of the complexity of our fundamental interdependent entanglements with each other.

Reflecting on my own experience of grief in the archives, I also think of Donna Haraway’s reminder that “Grief is a path to understanding entangled shared living and dying; human beings must grieve with, because we are in and of this fabric of undoing. Without sustained remembrance, we cannot learn to live with ghosts and so cannot think,” and it’s those moments in the archives that we can’t quite “make sense” of, that provoke our grief, where ratherthan turning away from details that trouble a clearer, cleaner narrative, we have an opportunity to “think with care” in the way Puig de la Bellacasa imagines.[14]

AUTHOR BIO

Jennifer Ansley is faculty in the Thompson Writing Program at Duke University, where they teach writing-intensive seminars on themes in Queer Cultural Studies. Their scholarship in both Writing Studies and Queer Cultural Studies is united by questions surrounding cultural discourses and pratices of care and caregiving. Ansley’s book manuscript in-progress, tentatively tiled Feeling Queer: The Institutionalization of Care & Safety, examines how intersecting populations of queer and trans people, disabled people, people of color, and the elderly have used writing and storytelling to imagine non-normative kinship and caregiving networks that support their survival. Their scholarly and creative non-fiction work has appeared in New England Quarterly, Scalawag Magazine, and Crabfat Magazine.

[1] Douglas Crimp, Melancholia and Moralism: Essays on AIDS and Queer Politics (Cambridge: The MIT Press, 2002), 8-9.

[2] Crimp, Melancholia, 16

[3] Deborah Gould, Moving Politics: Emotion and ACT UP’s Fight Against AIDS (Chicago: The University of Chicago Press, 2009), 64.

[4] Myrl Beam, “Against the Rainbow,” Abusable Past, 25 July 2019, https://www.radicalhistoryreview.org/abusablepast/?p=3180

[5] This scholarly work includes not only Deborah Gould’s Moving Politics: Emotion and ACT UP’S Fight Against AIDS, but also, Jennifer Brier’s Infectious Ideas: U.S. Political Responses to the AIDS Crisis (Chapel Hill: Univeristy of North Carolina Press, 2003); Roger Hallas’ Reframing Bodies: AIDS, Bearing Witness and the Queer Moving Image (Durham: Duke University Press, 2009); Tamara Giles-Vernick, Didier Gondola, Guillaume Lachenal and William H. Schneider’s “Social History, Biology, and the Emergence of HIV in Colonial Africa” (Journal of African History 54.1, 2013, pp 11-30); Trever Hoppe’s Punishing Disease: HIV and the Criminalization of Sickness (Berkeley: University of California Press, 2009); Christina Handhardt’s “’Dead Addicts Don’t Recover’: ACT UP’s Needles Exchange and Subjects of Queer Activist History” (GLQ: A Journal of Lesbian and Gay Studies 24.4, 2018, pp. 421-444); and an upcoming special issue of the Radical History Review that addresses the ongoing AIDS crisis.

[6] Susan Chambré, Fighting for Our Lives: New York’s AIDS Community and the Politics of Disease (New Brunswick: Rutgers University Press, 2006), 37.

[7] Newsline, July 1989, Box 45, Folder 1-3, People with AIDS Coalition Records. Manuscripts and Archives Division. New York Public Library. Astor, Lenox, and Tilden Foundations.

[8] Ibid.

[9] Newsline, August 1989, Box 45, Folder 1-3, People with AIDS Coalition Records. Manuscripts and Archives Division. New York Public Library. Astor, Lenox, and Tilden Foundations.

[10] Newsline, July 1989, Box 45, Folder 1-3 People with AIDS Coalition Records. Manuscripts and Archives Division. New York Public Library. Astor, Lenox, and Tilden Foundations.

[11] Newsline, August 1989, Box 45, Folder 1-3 People with AIDS Coalition Records. Manuscripts and Archives Division. New York Public Library. Astor, Lenox, and Tilden Foundations.

[12] Newsline, December 1989, Box 45, Folder 6-9 People with AIDS Coalition Records. Manuscripts and Archives Division. New York Public Library. Astor, Lenox, and Tilden Foundations.

[13] Maria Puig de la Bellacasa, Matters of Care: Speculative Ethics in More than Human Worlds (Minneapolis: University of Minnesota Press), 90-93.

[14] Donna Haraway, Staying with the Trouble: Making Kin in the Chthulucene (Durham: Duke University Press, 2016), 39.