Theorizing Agency: New Directions in Research on HIV/AIDS Activism

Abstract

Theorizing Agency: New Directions in Research on HIV/AIDS Activism Jallicia Jolly (bio) Evidence of Being: The Black Gay Cultural Renaissance and the Politics of Violence. By Darius Bost. Chicago: University of Chicago Press, 2018. 192 pages. $82.50 (cloth). $27.50 (paper). Let the Record Show: A Political History of ACT UP New York, 1987–1993. By Sarah Schulman. New York: Macmillan, 2021. 736 pages. $40.00 (cloth). Remaking a Life: How Women Living with HIV/AIDS Confront Inequality. By Celeste Watkins-Hayes. Berkeley: University of California Press, 2019. 336 pages. $85.00 (cloth). $29.95 (paper). To Make the Wounded Whole: The African American Struggle against HIV/AIDS. By Dan Royles. Chapel Hill: University of North Carolina Press, 2020. 332 pages. $95.00 (cloth). $29.95 (paper). The fourth decade of the HIV/AIDS pandemic on the heels of the COVID-19 outbreak has prompted an undoing of our sense of self and community in relation to illness and inequality. The responses to these two historic pandemics have not only laid bare preexisting racial, gender, sexual, and structural inequities but also illuminated the perennial silences and erasures that have long marked HIV/AIDS in the United States. The initial responses to the pandemic in the 1980s focused on the experiences and needs of white cis-gender gay men, whose influential mobilization was widely documented in mainstream political activism, media, public discourse, and public health interventions. Since then, mainstream HIV/AIDS research has focused heavily on microlevel behavioral risk factors that inform biological susceptibility to HIV transmission, neglecting the histories of marginalization and structural violence that have long facilitated the exposure to social vulnerabilities and slow [End Page 169] death. This emphasis on individualized risk in HIV research and traditional public health interventions coupled with public discourses and media narratives that stigmatize LGBTQ and Black communities as active transmitters of HIV reinforced the homophobia, structural racism, and institutional sexism that has undermined effective approaches to the pandemic. The advent of medication and technology has catalyzed the transition of HIV/AIDS from a “death sentence” to a “chronic illness,” which has produced new social, political, and cultural realities. Of course, for as long as HIV/AIDS has existed, the labor of feminist and queer communities of color to highlight the racial, gendered, and cultural dynamics of disease and state violence have upended linear narratives of HIV/AIDS progress. Alongside the direct action, consciousness raising, and coalitional work of the leading HIV activist group, ACT UP, Black organizers cultivated grassroots collectives to offer communal care for the sick and dying, marshal resources to advocate for their strategic interests, and amplify their overlapping concerns for basic resources, rights, and recognition. In particular, Black feminists and Black gay and lesbian communities—scholars, activists, community leaders, artists—have mounted radical challenges to racism, state violence, and the politics of respectability by foregrounding the humanity, lives, sociality, and political labor of Black people. When we consider the backdrop of this radical activism in Cathy Cohen’s incisive reflections on the HIV/AIDS crisis, neoliberal policies, and conservative ideologies implemented by the Reagan and Clinton administrations, we see a fuller picture of the racial, gendered, sexual, and structural contexts of the pandemic. Cohen’s often-quoted analytic category of “punks, bulldaggers, and welfare queens” describes the historical marginalization of subjects—lesbians, gays, transgender and bisexual persons, single mothers, and state aid recipients.1 As Jafari Allen notes, these subjects are marked not only as “unruly would-be subject citizens, but also as outside cultural boundaries of belonging and care.”2 Decades later, Black, feminist, and queer scholars and organizers continue to build on these intellectual and activist legacies while embracing the radical potentiality of HIV/AIDS activism to transform the HIV/AIDS pandemic and US culture as we know it. The review essay maps this emergent wave of scholarship on the racial, gender, and cultural stories of HIV/AIDS, as well as the political and social dimensions of the evolving landscape of HIV/AIDS activism represented by recent publications from Sarah Schulman, Dan Royles, Darius Bost, and Celeste Watkins-Hayes. These works signal an expansive generation of HIV/AIDS research that foregrounds alternative political and historical...