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Forget Burial: HIV Kinship, Disability, and Queer/Trans Narratives of Care Paperback – November 13, 2020
by
Marty Fink
(Author)
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Finalist for the LGBTQ Nonfiction Award from Lambda Literary
Queers and trans people in the 1980s and early ‘90s were dying of AIDS and the government failed to care. Lovers, strangers, artists, and community activists came together take care of each other in the face of state violence. In revisiting these histories alongside ongoing queer and trans movements, this book uncovers how early HIV care-giving narratives actually shape how we continue to understand our genders and our disabilities. The queer and trans care-giving kinships that formed in response to HIV continue to inspire how we have sex and build chosen families in the present. In unearthing HIV community newsletters, media, zines, porn, literature, and even vampires, Forget Burial bridges early HIV care-giving activisms with contemporary disability movements. In refusing to bury the legacies of long-term survivors and of those we have lost, this book brings early HIV kinships together with ongoing movements for queer and trans body self-determination.
Queers and trans people in the 1980s and early ‘90s were dying of AIDS and the government failed to care. Lovers, strangers, artists, and community activists came together take care of each other in the face of state violence. In revisiting these histories alongside ongoing queer and trans movements, this book uncovers how early HIV care-giving narratives actually shape how we continue to understand our genders and our disabilities. The queer and trans care-giving kinships that formed in response to HIV continue to inspire how we have sex and build chosen families in the present. In unearthing HIV community newsletters, media, zines, porn, literature, and even vampires, Forget Burial bridges early HIV care-giving activisms with contemporary disability movements. In refusing to bury the legacies of long-term survivors and of those we have lost, this book brings early HIV kinships together with ongoing movements for queer and trans body self-determination.
- Print length214 pages
- LanguageEnglish
- PublisherRutgers University Press
- Publication dateNovember 13, 2020
- Reading age18 years and up
- Dimensions6 x 0.6 x 9 inches
- ISBN-101978813767
- ISBN-13978-1978813762
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Editorial Reviews
Review
"Marty Fink’s Forget Burial is a vital, much needed contribution to HIV/AIDS scholarship. A wondrous cornucopia of theory, cultural artifacts – fiction, ‘zines, video, memoirs, painting, blogs and oral histories – analysis and archival uncovering, Fink’s work here is stunning when it makes connections to movements today. Forget Burial is both an act of superb scholarship and of love." -- Michael Bronski ― author of A Queer History of the United States for Young People
“What histories inter as past, Forget Burial bears forth to account for our present. Extending caregiving as a method, the book examines how early HIV archival narrations of trans and disability activisms resurface in later novels, film/video, and online networks. Whether displaying and eroticizing disabilities, or inventing safer sex, these negotiated HIV interdependencies transform state violence and biomedical stigma into kinships for ‘body self-determination’ that brandish mutual care and institutional access through our unfolding crises.” -- Jih-Fei Cheng ― co-editor of AIDS and the Distribution of Crises
"[A] creative and original study...this book offers historians both useful theoretical frameworks for thinking about HIV/AIDS, disability, and the role of mutual care as well as an exciting collection of sources to learn from." ― Social History of Medicine
"Forget Burial is well worth reading. The most successful parts of this book take the reader inside the kitchens, bedrooms, prisons, art galleries, and hospital waiting rooms where people laughed, fought, loved, and sometimes died together. Fink makes a strong case that the early years of the HIV epidemic provide models for living joyously and communally despite the myriad ways capitalist institutions leave individuals to fend for ourselves. In the process of “unburying” the stories of historically marginalized people, Fink rightly and eloquently depicts disability as a generative force." ― H-Net
“What histories inter as past, Forget Burial bears forth to account for our present. Extending caregiving as a method, the book examines how early HIV archival narrations of trans and disability activisms resurface in later novels, film/video, and online networks. Whether displaying and eroticizing disabilities, or inventing safer sex, these negotiated HIV interdependencies transform state violence and biomedical stigma into kinships for ‘body self-determination’ that brandish mutual care and institutional access through our unfolding crises.” -- Jih-Fei Cheng ― co-editor of AIDS and the Distribution of Crises
"[A] creative and original study...this book offers historians both useful theoretical frameworks for thinking about HIV/AIDS, disability, and the role of mutual care as well as an exciting collection of sources to learn from." ― Social History of Medicine
"Forget Burial is well worth reading. The most successful parts of this book take the reader inside the kitchens, bedrooms, prisons, art galleries, and hospital waiting rooms where people laughed, fought, loved, and sometimes died together. Fink makes a strong case that the early years of the HIV epidemic provide models for living joyously and communally despite the myriad ways capitalist institutions leave individuals to fend for ourselves. In the process of “unburying” the stories of historically marginalized people, Fink rightly and eloquently depicts disability as a generative force." ― H-Net
About the Author
MARTY FINK is an assistant professor of professional communication at Ryerson University in Toronto, Ontario, Canada.
Excerpt. © Reprinted by permission. All rights reserved.
Introduction: Taking Care
Having a Good Time Getting this Disease
In the summer of 1990, HIV activist and sex work organizer Iris De La Cruz performed a daring act at the New York University (NYU) Medical Center. With the support of fellow activists, she strategized to enter unnoticed into the hospital rooms of people living with HIV. Her campaign began in the middle of the night. When everyone was sleeping, and the hospital staff was otherwise engaged, De La Cruz proceeded toward the occupied beds. Undetectable until the following morning, the effects of her plan were set into motion. De La Cruz silently proceeded to decorate all the IV poles with pink ribbons and balloons, so that “[e]veryone woke up to party IVs" (112). As De La Cruz reflects, “I had a good time getting this disease and I'm going to have a good time dealing with it." De La Cruz’s narratives—which circulated in queer community newsletters, grassroots feminist publications, and activist videotapes—"reframe” (Hallas 3) HIV not as a “site of shame” (Erickson 42) but as a site of community formation. This book begins with a hospital surprise party to bring HIV histories and contemporary disability movements together. I return to early HIV archives from the 1980s and 1990s to foreground stories of caregiving. These archives uncover how early HIV caregiving narratives continue to expand how we think about bodies in the present.
I wrote this book to learn more about the work of HIV activists like De La Cruz who died of AIDS in the 1980s and early 1990s. These HIV narratives transformed how I understand my own body, my experience of becoming disabled, and how I give and receive care. In sharing this project with my communities and with my students, I realized that many young people are deeply interested in these legacies but have little access to these narratives about HIV. I began this research in 2006 when at age twenty-three, I became keen to understand more about my own chosen families and our histories as queer and trans people. My intention was to create an opportunity for a generation that lost lovers, friends, and family to AIDS to pass down their experiences to those like myself who are continually looking to this older generation to make sense of our own bodies and our relationships to sexuality, to gender, and to HIV. This book’s central argument is that literary and archival narratives of HIV caregiving offer a model of disability kinship that supports ongoing sexual and gender self-determination into the present. I wrote this book for my generational peers and for youth who do not yet have access to early HIV narratives. This work reflects my own desire to connect with the older generations who fought by learning about how I am personally impacted by their experiences of love and loss.
HIV and Disability
In this section, I consider how early HIV narratives redefine cultural understandings of disability in the present. I return to caregiving narratives by activists including De La Cruz in order to reframe disability not as a problem with individuals’ bodies but as a problem of institutions failing to care for the self-determination of disabled people. In countering narratives of pity and victimization, caregiving reframes HIV as inspiring how we might “love each other and support each other” (Shakur “To My People”) in response to state refusal to care about HIV. As HIV activist and artist David Wojnarowicz famously declares, "I know I'm not going to die because I got fucked in the ass without a condom or because I swallowed a stranger's semen. If I die it is because a handful of people in power, in organized religions and political institutions, believe that I am expendable" (230). HIV narratives including Wojnarowicz’s autobiography replace stigmatizing stories about disability with narratives of disability as the outcome of structural access barriers. As Alison Kaefer observes of the process of describing disability,
Collective affinities in terms of disability could encompass everyone from people with learning disabilities to those with chronic illness, from people with mobility impairments to those with HIV/AIDS, from people with sensory impairments to those with mental illness. People within each of these categories can all be discussed in terms of disability politics, not because of any essential similarities among them, but because all have been labeled as disabled or sick and have faced discrimination as a result. (11)
In widening the definition of disability to address discrimination, Robert McRuer also argues that disability studies should include HIV activism as a central part of its public histories. By claiming early HIV activisms as part of early disability movements, McRuer advocates for “broadening, in public, our still-fluctuating sense of what disability history might be” (“NAMES” 54). Drawing overt links between disability and HIV resists assimilationist and capitalist politics by leveraging “productively unruly bodies” (McRuer “Critical” Investments” 236) toward confronting ableist normalcy, increasing access to public space, and building anti-racist coalitions (McRuer 236, 230, 226; Linton 162-63; Sandahl 50; Stockdill 62; Farrow “When My Brother Fell”). By regarding HIV as a disability, the caregiving activism to meet access needs, counter stigma, and to connect individual body problems to larger struggles for anti-racism, healthcare access, and decolonization links ongoing histories of HIV activism to broader transnational movements (Bell et al. 439; Hobson Lavender 3; Hobson “Thinking” 205). Early HIV archives can be connected to ongoing queer and trans disability movements to support the self-determination of those who fail to conform to body norms.
These coalitions that link HIV and disability are, however, not without accompanying tensions. Alexander McClelland and Jessica Whitbread contextualize how some people living with HIV are reluctant to identify HIV activism with disability activism and its histories. McClelland and Whitbread identify the “past and existing tensions” (87) of framing HIV as disability. They illustrate that for people living with HIV, many of these conflicts “are unresolvable and, for some, highly personal” (87). They maintain, however, that understanding HIV as disability helps to address the criminalization of HIV non-disclosure in our contemporary moment (80). Citing disability activist and theorist AJ Withers, McClelland and Whitbread argue for the utility of reading HIV as disability in order to counter biomedical narratives and forms of state control that attempt to construct the “responsible” subject living with HIV as one who complies with able-bodied, “healthy” norms (92); McClelland and Whitbread analogously regard people living with HIV and other forms of disability as agents in resisting this process of state intervention toward self-defining “what it means to live with HIV in the contemporary context” (McClelland and Whitbread 85; Arsenault 2012; Chevalier and Bradley-Perrin 2014). Considering HIV as disability also emphasizes the points of connection for all bodies marked as falling outside of medical norms. While some activists argue that disability can be understood as a positive and valuable form of diversity in the human condition, others have argued that disability is not always experienced positively because living with a disability can be the source of suffering, death, and pain (Wendell 23; Mollow 76; Baril 60; Crow 61).Experiencing disability, further, does not always result in care. In fact, experiencing a lack of care when already vulnerable is what might cause our bodies to become disabling. Yet, disability creates opportunities for care and for feeling positive about body differences, even though—because of ableism and access barriers—it is not often experienced as such. HIV narratives can restore value and agency to bodies marginalized on account of being disabled. I therefore revisit early HIV caregiving archives alongside ongoing disability narratives that refuse to render certain bodies as expendable.
This book focuses on HIV in particular in order to better understand the sexual and gendered narratives attached to disability more generally. What I refer to as the “early” period of HIV begins in 1981 when HIV was first observed clinically in the US, and ends in 1996 when the availability of antiretroviral drugs (to those with medical access and other forms of privilege) upset narratives of HIV as necessitating death; much work, however, has troubled this timeline of HIV history, as numerous activists and scholars have noted that just as the existence of HIV unquestionably predates 1981, so too are countless lives affected by HIV along lines of race and class in ways that have not improved since 1996 (Kerr 2016; Robinson 9; Reid-Pharr ix; Gremk 105). I look to early responses to HIV rather than to broader instances of community-based caregiving; while I could also investigate queer and trans community responses to other crises in other historical periods, I am particularly interested in how early HIV narratives specifically offer models of anti-conformist, gender fluid, anti-capitalist, anti-racist, and sex positive possibilities for reframing disability. The generational meanings connoted by the terms “HIV” and “AIDS” are also reflected at a linguistic level within my own writing. Unless I am explicitly discussing the syndrome “AIDS,” I generally use the term “HIV” rather than “HIV/AIDS” to discuss the virus, its activisms, and its cultural meanings. While the term “HIV/AIDS” is the iteration of this acronym with which readers might be most familiar, I have decided to untether “HIV” from “AIDS” in my own usage to signify a shift across time, as “HIV” without “AIDS” marks a linguistic shift toward focusing not on the “pastness” of AIDS histories (Juhasz and Kerr 2014) but rather to emphasize HIV’s ongoing meaning for people living with the virus in the present. This contemporary use of the term “HIV” instead of “HIV/AIDS” is a linguistic decision that can be controversial. Some people prefer the term “AIDS” to refer to activist histories, and some prefer the term “HIV/AIDS,” using the binary to separate HIV from AIDS without excluding the lived experience of either. Activists including Benjamin Ryan, however, prefer the use of the term “HIV” to counter institutional uses of the term “AIDS” in ways that erase the ongoing daily realities and activisms of people living with HIV today (2015). The use of “HIV” over “HIV/AIDS” is thus intended as a linguistic move that roots these histories of AIDS as ongoing into HIV’s present. In place of the term “people with AIDS” (PWAs), I use the term “people living with HIV” not to exclude people with AIDS from this category but because this term “HIV” feels useful as a linguistic refusal to locate these narratives as existing only with AIDS or only in the past.
Chosen Families and HIV Kinships
This section positions HIV in particular and disability more broadly as opportunity for queer and trans kinship. As someone who came of age with narratives of my own gender and sexuality as being inextricably linked to HIV stigma and sexual risk, I have always longed to transform these very narratives of pathologization into opportunities for finding family and exchanging care. Early HIV narratives offer my generation a way of understanding how our own queer-ness and trans-ness—and that of the chosen families we form to sustain us—is shaped by HIV and activist responses to it (Marcus 192; Sedgwick 184; Foucault 54; Delany “Gamble” 140, 169; Elman 318; McKaskel 230; Sears 97; N. Nixon 128; Grover 23; Black and Whitbread 4). I understand HIV “kinship” as different from simple “care” because while people can receive care in ways that are not necessarily connective, early HIV activism created what Mia Mingus terms “access intimacies” (2017). As Mingus outlines, access intimacies are a “tool for liberation” that “tap into the transformative powers of disabilities” (2017) by bringing people together precisely because of the connections disability affords (Mingus 2017; Erickson 46). In forming these kinships in response to state violence, early HIV narratives offer this model of caregiving as forming these anti-capitalist, anti-ableist kinships toward transforming access. In sharing this research with younger generations than mine, I also hope to model how HIV caregiving in particular has much to teach us about queer and trans survival. I apply HIV histories to contemporary narratives about gender and disability: rather than striving to cure disabilities and eliminate bodily differences, HIV narratives offer queer and trans models for taking care of each other when we experience institutional harm.
This book thus places early HIV archives in conversation with contemporary texts to present an ongoing model of queer and trans kinships that form in response to disability. “Queer” and “trans” are constantly evolving terms that when applied to the 1980s and 1990s may be anachronistic. Our present lens for understanding sexual and gender classifications differ from the ways in which these identities were understood historically. However, these umbrella terms are also useful for investigating how early HIV narratives influence contemporary understandings of these categories themselves. Juana Maria Rodriguez identifies that HIV is not only connected to intersecting oppressions on the basis of race, class, gender, and sexuality but that these dynamic categories of identity are shaped by the differences and affinities called into relief by HIV and its activisms (Rodriguez 47; Gould 215; Hobson 193; Chen 196, 61; Stryker 133; Gould 260; Johnson 148; Muñoz 68, 151; Carroll l18). Quo-Li Driskill further identifies that while historians have identified “queer” as emerging in the late 1980s and early 1990s out of political movements including HIV activism, two-spirit scholars have noted that “queer” has its formation not in the twentieth century but in the pre-colonial practices of indigenous communities prior to contact with white settlers (71).
Trans Legacies and HIV Archiving
Forget Burial re-centers the work of trans women whose contributions to HIV histories have been frequently underrepresented both within mainstream retellings and within queer archiving practices. In the 1980s and 1990s, trans women supported other trans women living with HIV and responded to the needs of their communities, which were not addressed by “queer” HIV activists (Page “Odofemi”; Mackay “Trans” 23). Morgan M. Page critiques canonized HIV activists including Vito Russo for trying to prevent Sylvia Rivera from speaking during an early 1970s Pride demonstration in New York City, excluding trans women of color from movements that trans women of color ignited via the Stonewall Riots. Rivera’s work in the 1970s undertook a critical form of caregiving with the creation of Street Transvestite Action Revolutionaries (STAR) with Marsha P. Johnson as a form of care work to support and to house trans youth (Rivera 72). Che Gossett references the work of Tourmaline that re-centers these legacies of deliberately excluded Stonewall veterans—trans women of color—within HIV histories. Gossett reminds us that Johnson, leader of the gay liberation movement and the Stonewall riots, was “living with HIV and also cared for those close to her who were living with HIV, many of whom died during the onset of the AIDS epidemic” (22). This early work of trans women is often excluded from HIV archives, an exclusion which continues to impact contemporary queer and trans community formations.
This project therefore looks not only for what is present in the HIV archive but also for what is missing. Archivists and scholars including Steven G. Fullwood, Kate Eichhorn, and Ann Cvetkovich identify the unpaid emotional labor of caring enough to collect, house, and look after archives across time and space (Cvetkovich 8; Eichhorn 14; Fullwood 48, 52; Sawdon-Smith 2008; Carlomusto et al. 2016). Jih-Feh Cheng also uncovers the labor of collective HIV activist video makers in caring for their footage to create cultures of memory, police accountability, and caregiving that support direct action (86). The HIV archive thus also holds the potential to structure cultural production and labor collectively around forms of exchange that undercut capitalism (Eichhorn 10, 14-15; Cheairs et al. 6, 11; Hartman 228). While some HIV histories have been effectively preserved, others have become “degraded” (McKinney and Meyer 2016).[i] I thus revisit HIV archives not only to analyze what one might find there but also to interrogate absence, taking care to question which caregiving testimonies have not yet been sought out (Köppert and Sekuler 2016; Youngblood 2016; Fullwood 52). Cait McKinney traces the ongoing impact of revisiting untold historical narratives of HIV. In “Can a Computer Remember AIDS?” McKinney discusses the HIV archiving process, identifying how, “as archival logics order cultural memory, they render certain ‘AIDS of the past’ intelligible, often at the expense of others.” Telling and re-telling easily accessible stories can obscure the violence of erasing histories that are harder to find. Ted Kerr outlines how the HIV cases from 1981 that are often narrated as marking the beginning of HIV in North America obscure the legacies and access needs of communities that were affected by HIV decades before this historical moment. Kerr identifies that the media and medical professionals’ inability to notice or care about HIV until it began affecting white subjects creates a limited narrative of HIV that continues into the present: “we keep repeating the history we think we know to be true, the one that starts in 1981. But this is not the history of HIV/AIDS; it is the history of our response to HIV/AIDS.” Kerr reminds us that telling narratives of these histories in the present “is powerful because it shares stories about the AIDS crisis that inform the world we live in now.” Thus rather than recreating what Chris Bell terms “White Disability Studies” (275) by retelling the same—white-dominated, trans-exclusionary, already-told—histories over again, this book follows the advice of British Visual AIDS curator, historian, and photographer, Ajamu, who reframes HIV archiving as a dynamic process that “coincide[s] with other moments across time, space, Diaspora.” As Ajamu asserts, “how we think about archives is not what we go to but it’s what we bring with us. How do we bring ideas of pleasure, passions into archival work?” In attempting to answer some of these questions, I return to HIV archives hoping these disability legacies “can be lived and imagined a little differently” (Titchkosky 10) through a framework of mutual care. While care is not the only outcome or only possible reading of the archives I revisit, I center caregiving in order to preserve the work of those who were lost, as well as the ongoing care that is taken in “remembering and not remembering” (Varghese 2016), “to shovel dirt upon dirt upon dirt to bury all the dead” (Robinson 76), as survivors continue to mourn, to memorialize, and to forget (Robinson 75).
Taking Back Care
Care is a central thread across this project that brings together early HIV activism with contemporary disability kinships. In this section, I attempt to define care with the same openness and flexibility with which care can be given. Through early HIV narratives, I imagine an ongoing anti-racist, anti-assimilationist model of queer and trans care that disability movements can draw on to confront the access barriers created by capitalism. At its best, care can become a reciprocal process that forms queer and trans intimacies and familial connections as is evidenced by the activist responses to HIV (Bell et al. 439; Black and Whitbread 4). These HIV narratives, however, also uncover disappointments about inadequate care and the harm that occurs when care fails. HIV narratives thus further expose the ways in which capitalism and neoliberalism, racism and colonial violence, and anti-queer and anti-trans violence create barriers to giving and receiving mutual care (Bell et al. 455; Farber 181). While care giving is essential for those whose access needs are not otherwise met by institutions including biological family and the medical system, this book thinks through the feminist possibility of care taking, of taking matters of body self-determination into “Our Own Hands.”[ii]
This book revisits these narratives of queer and trans intimacies that formed when care was denied by the state. The failure of the state in providing adequate care for people living with HIV reflects broader systems of gendered racism perpetuated by capitalism (Singleton 51; Hobson “Thinking” 205). While grassroots queer and trans community care became necessary because of state neglect, the (albeit often inadequate) state systems that (can) exist to provide paid caregiving for disabled people eventually became available to people living with HIV. The shifts in care from grassroots supports to state systems reflects the complexities and limits of providing care through capitalism (Hobson “Thinking” 206). Emily Hobson, a historian of queer U.S. and radical movements, further links HIV activism and its histories to the ongoing “neoliberal replacement of the state by non-governmental organizations (NGOs)” (Hobson “Thinking” 206).
Hobson’s work challenges us to revisit HIV history not merely to romanticize the past but to connect HIV caregiving to addressing larger instances of racism, commodification, and global access barriers called into relief by paid caregiving, state disability services, and the nonprofit industrial complex (“Thinking” 206). As HIV caregiving theorists including Katie Hogan and Jeanine DeLombard point out, the majority of HIV caregiving labor is underpaid and unpaid and is provided domestically and through the state by queer women and women of color (Hogan 4; DeLombard 351). Moreover, daily experiences of racism, job precarity, and low wages are characteristic of state-funded paid labor within domestic care, nursing, and long-term care institutions (Ryosho 60; Bauer and Cranford 66). An analysis of early HIV caregiving models created in opposition to capitalism thus can thus offer broader ongoing interventions in disability caregiving toward “addressing racism . . . translating personal analysis into collective political action and thus simultaneously transforming both individuals and social institutions” (Ryosho 68). Rather than simply advocating for caregiving without the state or for adopting a caregiving model that is state-run, this book instead aims to transform the state itself for failing to provide care in a non-exploitative way.
As disability justice writer and activist Leah Lakshmi Piepzna-Samarasinha argues in Care Work: Dreaming Disability Justice, DIY models of care from the everyday lives of queer and trans people of color offer alternatives to racist and gendered state systems by “break[ing] from the model of paid attendant care as the only way to access disability support” (41). Lakshmi Piepzna-Samarasinha challenges neoliberal models of caregiving toward the anarchist crip goal of radically “rewriting of what care means, of what disability means” (46) by mapping out queer and trans of color community care webs “controlled by the needs and desires of the disabled people running them” (41). In placing early HIV caregiving narratives in conversation with these contemporary movements, this book revisits ongoing legacies of HIV activism not simply to create a new model of care but to disrupt the labor norms of the capitalism.
Returning to early HIV narratives of caregiving thus offers an ongoing critique of capitalism for undervaluing care work. In The Erotic Life of Racism, Sharon Holland draws on queer and critical race theory to “take care of the feeling” (6) that “escapes or releases” (6) as bodies “collide in pleasure and in pain” (6); Holland understands desire and intimacy as informing daily acts of racism, and therefore urges readers to care about the feelings that this process creates (11). In reading early HIV narratives as offering anti-capitalist, anti-racist caregiving models that value the access needs, desires, and labor practices of communities of color (Lakshmi Piepzna-Samarasinha 46), the queer and trans exchanges of pleasure and pain in these narratives contest the state forms of care and the kinds of racism that state systems—and state caregiving systems in particular—continue to perpetuate. Drawing on Erickson’s queer and trans caregiving collectives, Lakshmi Piepzna-Samarasinha asks “what does it mean to shift our ideas of access and care . . . from an individual chore, an unfortunate cost of having an unfortunate body to a collective responsibility that’s maybe even deeply joyful?” (33). Forget Burial revisits these joys not merely to wax nostalgic about early HIV narratives but to grapple with the contradictions and complexities of community caregiving to dream these anti-capitalist imaginings into the future.
A return to early HIV archives also reframes caregiving as a form of activism. Because caregiving labor is often gendered and unpaid, it can become dismissed as being less revolutionary than now-iconic forms of HIV street protest. This book analyzes novels and other caregiving narratives to re-center many different kinds of care as frontline work. These narratives demonstrate how forming chosen families—as well as transforming how we understand and treat our biological families—has always been a vital response to the failure of capitalist systems in providing adequate support. HIV archives also attest to the ongoing racism of the state, and to community responses to institutional access barriers to care. The anti-black racism enacted through medical access barriers is addressed in a 1986 archival issue of Black/Out, a black gay newsletter published in Philadelphia. In this newsletter, black gay literary anthologizer and editor Joseph Beam, who was living with HIV, writes, “the State (a euphemism for white people) has never been concerned with the welfare of Black people . . . It is not a matter of whether their racism is intentional or unintentional. We die ‘by accident’ daily and the State is a witness who documents that demise.” Beam quotes the poetry of Essex Hemphill to encourage black communities to take health issues into their own hands: “Hemphill writes in ‘For My Own Protection’: We should be able to save each other / I don’t want to wait for the Heritage Foundation to release a study saying / Black people are almost extinct…” The 1986 publication Bebashi: Blacks Educating Blacks About Sexual Health Issues, also published prior to the formation of late-80s movements like ACT UP, already identifies how:
AIDS is a disease, not a lifestyle. And the methods through which it spreads are no longer a mystery or hard to explain. But the socio-political reality is that those who have traditionally had greater access to health care and educational opportunities are those who today are learning how to protect themselves against this disease. And those who are traditionally forgotten are again being forgotten—with tragic, almost genocidal consequences. (2)
Early HIV chosen families formed in response to the failures of biological families and the state (Knauer 162; N. Nixon 128; Greyson 1987; Gillett 9-10; Wolfe 227; Foege 616; Bryan 69; Kramer 20; Denneny 42). This grassroots response to state medical negligence is one in which black, indigenous, and other underserved communities have always created in order to meet their own medical needs (L. Nixon 2017; S. Smith 169; Konsmo 2013; Wilson 81; Yee 22; Oliver et al. 909; Hewitt 9; Woubshet 43). When connected to these long histories of community-centered care provision—and to emerging disability movements—HIV caregiving narratives become part of an ongoing disruption to neoliberal systems that regard each of us as responsible for our own access needs (Clare 9; Derkatch “Self-Generating” 134; Derkatch “Incipient” 6; Derkatch Bounding 185; Geary 4). Using his own HIV test as a visual example of the medicalization of the individual gay male body, Delany expresses frustration with this medical rhetoric of testing through which “health itself is totally and forever denied but rather deferred, test after test after test, until, presumably, death” (140). Delany addresses the cultural imperative toward health by weaving risk into his life’s narrative and by managing it as a calculated component of his relationship to cruising. Delany writes, “I enjoy a certain kind of pleasure. I gamble on getting it” (169). In opposition to such individualist understandings of “health,” HIV narratives of caregiving re-center the gendered labor and the queer and trans communities formed while fighting for disability access.
Revisiting HIV archives thus also offers an ongoing narrative of queer and trans responses to state medical violence into the present. These narratives reframe disabled bodies as inspiring the formation of kinships rather than as “sites of shame” (Erickson 42). De La Cruz’s autobiographical accounts of leading some of the first ever support groups for women living with HIV, of decorating hospital rooms with birthday paraphernalia, and of hosting (and also writing about) HIV Passover Seders exemplify this narrative reframing: De La Cruz depicts her own experience in the hospital not as a source of shame but as one of gay-famous celebrity sightings and mutual support. In the camp tradition of celebrity gossip, she reports, "well, low and behold! The guys hanging out read like a Who's Who of the HIV community. Sitting in the middle of all the madness, holding court, was my very own Newsline editor, Phil. And he was surrounded by some very impressive people, like the activists Vito Russo and Damien Martin and some other guys that aren't gonna talk to me 'cause I didn’t mention them here" (111). Inverting the stigma of recognition, De La Cruz identifies the opportunities for queer friendship and sexual affirmation that can be found in the hospital ward. Contesting cultural representations of disability as a desexualized site of shame, De La Cruz creates community-driven forums to express desire for bodies living with HIV: "I'm going to kick off a new idea in the Newsline; it's going to be called the hot PWA of the month. So, if you have any photos of yourself or your buddies to send them in with a paragraph or two about yourself, we'll run it.” Inverting mainstream media narratives of stigma and contagion, De La Cruz cautions to “please make sure you have at least minimal clothing on, (although I'd be more than happy to accept nudes for my own personal use) because the Newsline doesn't need an obscenity suit." In building community via the “hot PWA,” De La Cruz’s work speaks back to narratives that position disability as antithetical to sexual desire. As Loree Erickson argues, disability holds the potential to bring queer crip bodies together “to create and find places where we are appreciated and celebrated for the very differences that are often used to justify our oppression” (42). Drawing on Erickson’s work, I lean into the possibilities for caregiving to be sexy and connective rather than necessarily isolating, underappreciated, or an inevitable source of burnout. De La Cruz’s claiming of the NYU Medical Center as a sexualized, queer social scene in the early 1990s speaks to the work of contemporary disability activists like Erickson and Withers who sexualize the “pleasure and shame” (Rees 112) of medical waiting rooms as cruising zones and make porn about wheelchairs in order to—like the HIV activists who preceded them—locate their queer crip bodies as prompting collective resistance.
Just Drop My Body on the Steps of the F.D.A.
In this next section, I consider my own relationship to early HIV kinships, in spite of the fact that I was too young in the 1980s and early 1990s to become part of this movement. Upon first entering the HIV archives to begin this project over a decade ago, I was not initially searching for stories about doing the dishes, listening, and food preparation. When I became an HIV activist in my 20s in the first decade of the 2000s, I was not expecting that my primary role in HIV community would be in doing the dishes, listening, and food preparation. What I was searching for in my HIV work—both as activist and as academic—was for stories of how the system fails to support queer and trans people. In learning how many of these stories are really about care, it became apparent that caregiving is also the organizing principle of my own work. This research not merely points to the beauty and power of care but also makes unavoidable the failures and disappointments of becoming vulnerable with and to others. HIV archives capture moments when care becomes transformative against stigma and isolation but also when it does not. Caregiving narratives actually foreground the limitations and pain of bodies, of mourning, of burnout, of selling out, and of stories that remain forgotten, buried, and unresolved.
I revisit these HIV narratives not just in spite of the fact that I was not involved, but precisely in response to this knowledge gap in my own generational experience: how am I impacted by this legacy of community care that I am not able to personally know? In connecting early HIV caregiving narratives to gender and sexuality in the present, I revisit a portrait of Wojnarowicz that continues to circulate across print and digital platforms.[iii] Photographed by Bill Dobbs at an ACT UP protest of the Food and Drug Administration (FDA) in 1988, Wojnarowicz sports a denim jacket with a pink triangle on the back. Printed in DIY (do-it-yourself) large white block letters on the back of the jacket, the bold script scrawled loudly across Wojnarowicz’s body relays the message “if I die of AIDS – forget burial – just drop my body on the steps of the F.D.A.” The imperative here is not to forget “my” individual burial but rather to embody a collective refusal by people living with HIV to “disappear quietly” (Wojnarowicz 230). Wojnarowicz showcases the power of his own sick body and even his corpse in forcing a homophobic system to care about HIV (“Wake Up Queers” 1992; Feinberg 264). I play—in this book’s title and in its content—with the narrative meanings of “burial” to address the ongoing state violence that marks certain bodies as undeserving of access to care (Nguyen 4; JH Jones 109; Herndl 555; Cohen 36; SL Smith 5; 113; Washington 400; Crimp 133). Unburying these narratives of loss directs accountability toward institutions that devalue the survival of bodies that do not conform. Archives of caregiving also “forget burial” by preserving across generations the narratives of those who have died (Gill-Peterson 280; Castiglia and Reed 9; Arriola 2014; Hilderband 307; Woubshet x, 24).
Although it remains tempting to affirm the pervasive narrative that older queers are responsible for dispensing these histories to a disappointingly apathetic younger audience (Finkelstein “Silence=”), this simplified assumption of disconnect between generations is often inaccurate; such narratives of disconnect obscure how HIV caregiving and its historical preservation is already happening—and has always been happening—across generational lines (Barnhardt 13). Juhasz and Kerr identify the utility of “rubbing the past up against the present” to consider what out-of-circulation media mean to young viewers in current contexts (2014). Juhasz calls this process “queer archive activism” (320), which refers to using video edits and one’s own presence within the footage to “remember, feel anew, analyze, and educate, ungluing the past from its melancholic grip, and instead living it as a gift with others in the here and now” (326). These material archives also connect HIV activisms of the 1980s and 1990s with digital disability movements of the present. I therefore “forget burial” and unbury archives to ask how HIV histories offer disability kinship models that continue to support queer and trans body self-determination.
Bringing these HIV histories into the present necessarily emphasizes generational differences in lived experience, as well as barriers to witnessing trauma across generations. Visual AIDS curator and artist Nathan Lee and artist and writer Carlos Motta create dialogue to address these intergenerational challenges of attempting to access HIV histories as younger queer men. Lee and Motta discuss PrEP in the context of their own relationship to HIV. Writing to Motta, Lee recognizes,
I will never know what it means to live through the AIDS crisis. I will never watch all my friends get sick and die. The enormity of that experience is a kind of black box I cannot access. And that is something I’ve realized that I increasingly need to respect and account for in all my words and thoughts.
When I began my research for this book in the mid-2000s as a graduate student, my objective was to learn how to talk about HIV activist legacies in a way that could bring that experience of death and loss into a contemporary context. I thought that by studying hard and performing well, I could transmit the traumatic experiences of queer activists preceding me to my own generation, and that would make for an exciting research project. At the end of my oral exams that would qualify me to begin work on my dissertation, I awaited the remarks of a panel of legendary HIV activists (now also distinguished English Professors), who all frowned at me from across the examination table. In a display of tough love, which I now understand as a (very New York City) act of care, my mentors clarified my central problem: “Marty, it is clear from this exam how much you love literature and how much you love to read, but you know absolutely nothing about what it was like to live through those years of the AIDS crisis.” I learned in this moment that my project could never be about understanding HIV across generations. I realize now that I will never be able to comprehend what it means to live through (or die in) this period. I also learned from writing this book that my retelling of these archival stories will always be inaccurate precisely because I was not there. My decision, however, to nevertheless investigate this archive comes out of a persistent desire from my own generational experience of trying to make sense of what HIV is and how HIV activists, many of whom have died and I will never get to meet, change the way I continue to understand myself. The act of revisiting HIV archives of the 1980s and 1990s is, as Eichhorn acknowledges, “not . . . to recover the past but rather a way to engage with some of the legacies, epistemes, and traumas pressing down on the present” (5). In attempting to understand the present through this revisiting, I hope—as Lee and Motta advise—to continue to “try to grasp where the contours of my experience are structured by the limitations of my experience.” As Eichhorn reminds us, “a turn toward the archive is not a turn toward the past but rather an essential way of understanding and imagining other ways to live in the present” (9). Similarly, Cvetkovich outlines, the project of uncovering HIV activist histories is as much one of building an archive as it is of examining one (8). In unburying HIV archives, I reframe my own generational understanding of queer and trans kinship, of caregiving, and of disability in relation to this legacy of loss.
When I started this project, my first archival visit was to the HIV collections at the New York Public Library (NYPL). In her investigation of the NYPL’s HIV archives, Cvetkovich captures the disconnect between the activist aesthetic of these cultural artifacts and the sterile finery of the NYPL’s reading room wherein much of this archive is housed. The NYPL contains one of the largest HIV archives, housing everything from collective meeting minutes documenting the grassroots organizing of the Women’s AIDS Resource Network (WARN) to activist David Feinberg’s personal cookbook (and pornography) collections. The materials found in the HIV collections expand conceptions of what might constitute HIV “literature” and what might compose a disability “archive.” Cvetkovich maps the various initial locations of the HIV archive prior to its ultimate arrival at the NYPL, where it remains to ensure its continued preservation. She then recounts her experience of accessing the archive:
The classical architectures and huge reading room are imposing, displaying on a massive scale the idea of tradition, which is being invented as well as preserved by the archive. Entry to the manuscript collection is available by special application only to those who have specific research projects; the research room, which is located off the main reading room, feels like a sequestered space for devoted, and slightly antiquated, scholars. (247)
I noted this disconnect most heavily when—upon sitting at this marbled, ivoried, grandiose table of biblical scholars—I opened a box of Feinberg’s porn. The contradiction between the unabashed sexual cultures of HIV activism and the sterilized material history inhabited by the dislocated researcher points to the possibilities for taking these collections out of their boxes and challenging contemporary disability narratives through their recirculation. This archive contains materials including the decoupaged index cards of Feinberg’s favorite gay personal ads, as well as the unpublished “AIDS Journals, 1989-1992,” of New York City-based artist, writer, and sculptor Stuart Edelson. Edelson’s words directed me from the outset of my project to consider the experience of living with HIV in relation to disability. In his diary, Edelson discusses a dilemma he faces when he begins to feel too sick to work (Dyck 122; Withers 11). He writes,
I have a pretty good idea that the amount of money I would have to live on if I went on permanent disability, would be totally inadequate to cover my needs. I would be acquiring a new and worse disease called POVERTY! So I’ve decided to put that inevitability off for as long as I can. Let me embarrass or disgust them all into knowing how mean our system is.
When I first read these words in Edelson’s unpublished diaries, I felt moved to reprint them. To resist investigating this period as a static thing, I turn to HIV archives as inspiring an active process of curation. Rather than reading narratives of HIV activism as already fixed in the past, this book recirculates these archives to offer an ongoing narrative model of community caregiving toward addressing the persistent meanness of “our system.”
Having a Good Time Dealing with It
My methodology undertakes the literary analysis of novels alongside a multitude of other materials including theory, autobiographies, short stories, poetry, and non-fiction writing, as well as archives, oral histories, zines, visual art, video, porn, and digital media. Across the chapters of this book, I close read novels alongside this constellation of materials to reimagine ongoing queer and trans responses to state violence and to the daily pain, grief, and care of navigating disability and death. Although current queer and trans theoretical frameworks for analyzing genders and sexualities did not yet exist in the 1980s and 1990s, their application to these archives inform my observations of how early HIV narratives influence ongoing narrative practices of resistance to ableist, hetero, white supremacist, colonial, and cisgender norms. While some of the contemporary texts I analyze address HIV directly, I argue how even those works that do not engage with HIV overtly can be placed in conversation with caregiving archives to challenge body norms.
In Chapter One, I ask what it would mean to read Octavia Butler’s 2005 vampire novel Fledgling as a caregiving novel about HIV. In re-imagining these queer, polyamorous, undead communities alongside archives of HIV, this chapter provides a framework for reading disability as a powerful site of kinship. Communities of care, Butler’s novel reveals, are not utopias but contain the same gendered and racialized violence reinforced by caregiving narratives themselves. These forms of harm—a caregiving reading of the novel uncovers—can be addressed through Afrofuturist re-imaginings of justice. Through my literary analysis of Fledgling, this chapter also connects contemporary HIV activism to archives documenting the invention of safer sex. This chapter understands community accountability and obtaining consent as forms of caregiving that support autonomy from the state. Butler’s work thus offers disability kinship models toward imagining alternatives to prisons as a community-driven form of care.
Responding to the communal possibilities offered by Butler’s vampires, Chapter Two revisits archival videos, poetry, newsletters, zines, and posters as narrative records of caregiving activism. This chapter recalls trans women’s activist histories that have been excluded from HIV archival collections. Through narrative analysis, I revisit a variety of trans women’s archives to observe the formation of queer community partnerships and fractures via HIV caregiving. This chapter considers the function of HIV activism in building broken coalitions between trans and gay communities, and in supporting trans chosen family formation through the de-stigmatization of disability. In Chapter Three, I move from chosen communities to the biological family as a critical site of care. I place a literary analysis of Schulman’s HIV fiction in conversation with the contemporary short fiction of Casey Plett. These texts together with archival and contemporary writing by activists including De La Cruz, Bryn Kelly, and Sur Rodney (Sur) offer a host of representational possibilities for narrating disability kinships formed in response to family trauma. I read fiction alongside autobiographical writing to consider how the family can become as a site of harm but can also sustain reciprocal care.
Chapter Four then takes up an examination of Rebecca Brown’s narrative strategies for representing the chosen families and queer intimacies that can emerge from caregiving. A lesbian writer whose 1994 publication The Gifts of the Body brought her from independent publishing venues into mainstream media outlets, Brown omits the biographical details of her unnamed narrator in this literary account of HIV care. Reading The Gifts of the Body alongside Brown’s earlier HIV short story “A Good Man” (2003) raises questions of narrative withholding and of why Brown erases herself from her own autobiographically-based text. Through this process of emotional distancing, the narrator actually demonstrates the interconnectivity between bodies that caregiving can create, building queer chosen families in response to HIV. Chapter Five traces this phenomenon again in Jamaica Kincaid’s My Brother, which likewise represents care through the perspective of a conspicuously misleading auto/biographer. This chapter revisits Kincaid’s deceptively straightforward (and deceptively straight) diasporic text, reconsidering the role (and the reliability) of the narrator in the act of giving care. I read this gap between this untrustworthy narrator persona and the author herself as exposing the barriers to care created by colonial violence and forced migration. In reading Kincaid’s work alongside the prison activism of AIDS Counseling and Education (ACE), HIV caregiving narratives again offer a framework for imagining prison abolition and disability kinships. In reading Kincaid’s representations of queer family formations in conversation with early HIV documentaries of prison activism, this chapter uncovers the limits and failures—as well as the narrative openness and transformative potential—of care.
The chapters of this book thus begin with a reading of Butler’s speculative fiction about the creation of chosen families in response to disability, and end with ACE’s real-life formation of HIV community in prison. The sequencing of the chapters presents a progression that considers the various successes and also the disappointments of queer and trans caregiving as providing different kinds of intimacies in supporting decriminalization. In observing representations of HIV family formations, their aspirations toward mutual care, and their inevitable limitations, I argue that bringing early HIV narratives into present continues to shape our understandings of disability. This book does not attempt to provide a comprehensive HIV history because many of the archives it draws from are based in the US, and New York City in particular. My intention, accordingly, is not to present a cohesive narrative of disability activism but rather to understand many of its components—calling numbers in phone trees, doing the dishes, decorating a hospital ward, hosting HIV Passovers—as inspiring ongoing queer and trans body self-determination. My goal in presenting this limited cross sampling of archival material is to expand understandings of disability kinship by inviting those we have lost to continue to haunt and to inspire us. I hope, in De La Cruz’s words, that Forget Burial supports us in “having a good time dealing with” disability, with the disappointments, the fun, and the vulnerabilities of care.
Notes
[i] “Tape Condition: Degraded,” McKinney and Hazel Meyer’s pornography exhibition at the ArQuives raises these questions of how histories of queer sex positivity (and porn) can be preserved through digitization from degraded VHS cassettes; McKinney and Meyer imagine these histories into existence while also lamenting the gap in findable materials other than those of commercial, gay, white productions; in failing to find the porn that they desire, McKinney and Meyer build, perform, draw, and collaborate with queer and trans artists to conjure porn that, in contributor Page’s words, “dream of an archive in which bodies like mine and people who fuck like I do exist.”
[ii] In Our Own Hands is a collectively written feminist column about women and HIV from Outweek magazine (1989-1991) in which lesbian communities share information about resource access. I unburied these periodicals at the Lesbian Herstory Archives in 2008, and the collection has since been digitized and is now available online.
[iii] For instance, on Tumblr this image’s circulation between April and July 2014 alone produced upwards of 60,691 likes and reposts; The 2012 recreation of this denim jacket by youth including photographer and textile crip artist Katie Jung attest to its ongoing resonance; This photograph was also circulated in Corpus, an HIV publication by AIDS Project Los Angeles in 2006 (Ayala 80); In conversation with Jean Carlomusto in Corpus, photographer Emily Roysdon also discusses her tribute to Wojnarowicz’s body through her own self-portraits, as she expresses her desire: “…to work with David, stitch myself into bed with him, turn myself into a fag. Yes, turn myself into a fag, allow my desire to move my body, change my body, to make something that gets me closer ...” (78)
Having a Good Time Getting this Disease
In the summer of 1990, HIV activist and sex work organizer Iris De La Cruz performed a daring act at the New York University (NYU) Medical Center. With the support of fellow activists, she strategized to enter unnoticed into the hospital rooms of people living with HIV. Her campaign began in the middle of the night. When everyone was sleeping, and the hospital staff was otherwise engaged, De La Cruz proceeded toward the occupied beds. Undetectable until the following morning, the effects of her plan were set into motion. De La Cruz silently proceeded to decorate all the IV poles with pink ribbons and balloons, so that “[e]veryone woke up to party IVs" (112). As De La Cruz reflects, “I had a good time getting this disease and I'm going to have a good time dealing with it." De La Cruz’s narratives—which circulated in queer community newsletters, grassroots feminist publications, and activist videotapes—"reframe” (Hallas 3) HIV not as a “site of shame” (Erickson 42) but as a site of community formation. This book begins with a hospital surprise party to bring HIV histories and contemporary disability movements together. I return to early HIV archives from the 1980s and 1990s to foreground stories of caregiving. These archives uncover how early HIV caregiving narratives continue to expand how we think about bodies in the present.
I wrote this book to learn more about the work of HIV activists like De La Cruz who died of AIDS in the 1980s and early 1990s. These HIV narratives transformed how I understand my own body, my experience of becoming disabled, and how I give and receive care. In sharing this project with my communities and with my students, I realized that many young people are deeply interested in these legacies but have little access to these narratives about HIV. I began this research in 2006 when at age twenty-three, I became keen to understand more about my own chosen families and our histories as queer and trans people. My intention was to create an opportunity for a generation that lost lovers, friends, and family to AIDS to pass down their experiences to those like myself who are continually looking to this older generation to make sense of our own bodies and our relationships to sexuality, to gender, and to HIV. This book’s central argument is that literary and archival narratives of HIV caregiving offer a model of disability kinship that supports ongoing sexual and gender self-determination into the present. I wrote this book for my generational peers and for youth who do not yet have access to early HIV narratives. This work reflects my own desire to connect with the older generations who fought by learning about how I am personally impacted by their experiences of love and loss.
HIV and Disability
In this section, I consider how early HIV narratives redefine cultural understandings of disability in the present. I return to caregiving narratives by activists including De La Cruz in order to reframe disability not as a problem with individuals’ bodies but as a problem of institutions failing to care for the self-determination of disabled people. In countering narratives of pity and victimization, caregiving reframes HIV as inspiring how we might “love each other and support each other” (Shakur “To My People”) in response to state refusal to care about HIV. As HIV activist and artist David Wojnarowicz famously declares, "I know I'm not going to die because I got fucked in the ass without a condom or because I swallowed a stranger's semen. If I die it is because a handful of people in power, in organized religions and political institutions, believe that I am expendable" (230). HIV narratives including Wojnarowicz’s autobiography replace stigmatizing stories about disability with narratives of disability as the outcome of structural access barriers. As Alison Kaefer observes of the process of describing disability,
Collective affinities in terms of disability could encompass everyone from people with learning disabilities to those with chronic illness, from people with mobility impairments to those with HIV/AIDS, from people with sensory impairments to those with mental illness. People within each of these categories can all be discussed in terms of disability politics, not because of any essential similarities among them, but because all have been labeled as disabled or sick and have faced discrimination as a result. (11)
In widening the definition of disability to address discrimination, Robert McRuer also argues that disability studies should include HIV activism as a central part of its public histories. By claiming early HIV activisms as part of early disability movements, McRuer advocates for “broadening, in public, our still-fluctuating sense of what disability history might be” (“NAMES” 54). Drawing overt links between disability and HIV resists assimilationist and capitalist politics by leveraging “productively unruly bodies” (McRuer “Critical” Investments” 236) toward confronting ableist normalcy, increasing access to public space, and building anti-racist coalitions (McRuer 236, 230, 226; Linton 162-63; Sandahl 50; Stockdill 62; Farrow “When My Brother Fell”). By regarding HIV as a disability, the caregiving activism to meet access needs, counter stigma, and to connect individual body problems to larger struggles for anti-racism, healthcare access, and decolonization links ongoing histories of HIV activism to broader transnational movements (Bell et al. 439; Hobson Lavender 3; Hobson “Thinking” 205). Early HIV archives can be connected to ongoing queer and trans disability movements to support the self-determination of those who fail to conform to body norms.
These coalitions that link HIV and disability are, however, not without accompanying tensions. Alexander McClelland and Jessica Whitbread contextualize how some people living with HIV are reluctant to identify HIV activism with disability activism and its histories. McClelland and Whitbread identify the “past and existing tensions” (87) of framing HIV as disability. They illustrate that for people living with HIV, many of these conflicts “are unresolvable and, for some, highly personal” (87). They maintain, however, that understanding HIV as disability helps to address the criminalization of HIV non-disclosure in our contemporary moment (80). Citing disability activist and theorist AJ Withers, McClelland and Whitbread argue for the utility of reading HIV as disability in order to counter biomedical narratives and forms of state control that attempt to construct the “responsible” subject living with HIV as one who complies with able-bodied, “healthy” norms (92); McClelland and Whitbread analogously regard people living with HIV and other forms of disability as agents in resisting this process of state intervention toward self-defining “what it means to live with HIV in the contemporary context” (McClelland and Whitbread 85; Arsenault 2012; Chevalier and Bradley-Perrin 2014). Considering HIV as disability also emphasizes the points of connection for all bodies marked as falling outside of medical norms. While some activists argue that disability can be understood as a positive and valuable form of diversity in the human condition, others have argued that disability is not always experienced positively because living with a disability can be the source of suffering, death, and pain (Wendell 23; Mollow 76; Baril 60; Crow 61).Experiencing disability, further, does not always result in care. In fact, experiencing a lack of care when already vulnerable is what might cause our bodies to become disabling. Yet, disability creates opportunities for care and for feeling positive about body differences, even though—because of ableism and access barriers—it is not often experienced as such. HIV narratives can restore value and agency to bodies marginalized on account of being disabled. I therefore revisit early HIV caregiving archives alongside ongoing disability narratives that refuse to render certain bodies as expendable.
This book focuses on HIV in particular in order to better understand the sexual and gendered narratives attached to disability more generally. What I refer to as the “early” period of HIV begins in 1981 when HIV was first observed clinically in the US, and ends in 1996 when the availability of antiretroviral drugs (to those with medical access and other forms of privilege) upset narratives of HIV as necessitating death; much work, however, has troubled this timeline of HIV history, as numerous activists and scholars have noted that just as the existence of HIV unquestionably predates 1981, so too are countless lives affected by HIV along lines of race and class in ways that have not improved since 1996 (Kerr 2016; Robinson 9; Reid-Pharr ix; Gremk 105). I look to early responses to HIV rather than to broader instances of community-based caregiving; while I could also investigate queer and trans community responses to other crises in other historical periods, I am particularly interested in how early HIV narratives specifically offer models of anti-conformist, gender fluid, anti-capitalist, anti-racist, and sex positive possibilities for reframing disability. The generational meanings connoted by the terms “HIV” and “AIDS” are also reflected at a linguistic level within my own writing. Unless I am explicitly discussing the syndrome “AIDS,” I generally use the term “HIV” rather than “HIV/AIDS” to discuss the virus, its activisms, and its cultural meanings. While the term “HIV/AIDS” is the iteration of this acronym with which readers might be most familiar, I have decided to untether “HIV” from “AIDS” in my own usage to signify a shift across time, as “HIV” without “AIDS” marks a linguistic shift toward focusing not on the “pastness” of AIDS histories (Juhasz and Kerr 2014) but rather to emphasize HIV’s ongoing meaning for people living with the virus in the present. This contemporary use of the term “HIV” instead of “HIV/AIDS” is a linguistic decision that can be controversial. Some people prefer the term “AIDS” to refer to activist histories, and some prefer the term “HIV/AIDS,” using the binary to separate HIV from AIDS without excluding the lived experience of either. Activists including Benjamin Ryan, however, prefer the use of the term “HIV” to counter institutional uses of the term “AIDS” in ways that erase the ongoing daily realities and activisms of people living with HIV today (2015). The use of “HIV” over “HIV/AIDS” is thus intended as a linguistic move that roots these histories of AIDS as ongoing into HIV’s present. In place of the term “people with AIDS” (PWAs), I use the term “people living with HIV” not to exclude people with AIDS from this category but because this term “HIV” feels useful as a linguistic refusal to locate these narratives as existing only with AIDS or only in the past.
Chosen Families and HIV Kinships
This section positions HIV in particular and disability more broadly as opportunity for queer and trans kinship. As someone who came of age with narratives of my own gender and sexuality as being inextricably linked to HIV stigma and sexual risk, I have always longed to transform these very narratives of pathologization into opportunities for finding family and exchanging care. Early HIV narratives offer my generation a way of understanding how our own queer-ness and trans-ness—and that of the chosen families we form to sustain us—is shaped by HIV and activist responses to it (Marcus 192; Sedgwick 184; Foucault 54; Delany “Gamble” 140, 169; Elman 318; McKaskel 230; Sears 97; N. Nixon 128; Grover 23; Black and Whitbread 4). I understand HIV “kinship” as different from simple “care” because while people can receive care in ways that are not necessarily connective, early HIV activism created what Mia Mingus terms “access intimacies” (2017). As Mingus outlines, access intimacies are a “tool for liberation” that “tap into the transformative powers of disabilities” (2017) by bringing people together precisely because of the connections disability affords (Mingus 2017; Erickson 46). In forming these kinships in response to state violence, early HIV narratives offer this model of caregiving as forming these anti-capitalist, anti-ableist kinships toward transforming access. In sharing this research with younger generations than mine, I also hope to model how HIV caregiving in particular has much to teach us about queer and trans survival. I apply HIV histories to contemporary narratives about gender and disability: rather than striving to cure disabilities and eliminate bodily differences, HIV narratives offer queer and trans models for taking care of each other when we experience institutional harm.
This book thus places early HIV archives in conversation with contemporary texts to present an ongoing model of queer and trans kinships that form in response to disability. “Queer” and “trans” are constantly evolving terms that when applied to the 1980s and 1990s may be anachronistic. Our present lens for understanding sexual and gender classifications differ from the ways in which these identities were understood historically. However, these umbrella terms are also useful for investigating how early HIV narratives influence contemporary understandings of these categories themselves. Juana Maria Rodriguez identifies that HIV is not only connected to intersecting oppressions on the basis of race, class, gender, and sexuality but that these dynamic categories of identity are shaped by the differences and affinities called into relief by HIV and its activisms (Rodriguez 47; Gould 215; Hobson 193; Chen 196, 61; Stryker 133; Gould 260; Johnson 148; Muñoz 68, 151; Carroll l18). Quo-Li Driskill further identifies that while historians have identified “queer” as emerging in the late 1980s and early 1990s out of political movements including HIV activism, two-spirit scholars have noted that “queer” has its formation not in the twentieth century but in the pre-colonial practices of indigenous communities prior to contact with white settlers (71).
Trans Legacies and HIV Archiving
Forget Burial re-centers the work of trans women whose contributions to HIV histories have been frequently underrepresented both within mainstream retellings and within queer archiving practices. In the 1980s and 1990s, trans women supported other trans women living with HIV and responded to the needs of their communities, which were not addressed by “queer” HIV activists (Page “Odofemi”; Mackay “Trans” 23). Morgan M. Page critiques canonized HIV activists including Vito Russo for trying to prevent Sylvia Rivera from speaking during an early 1970s Pride demonstration in New York City, excluding trans women of color from movements that trans women of color ignited via the Stonewall Riots. Rivera’s work in the 1970s undertook a critical form of caregiving with the creation of Street Transvestite Action Revolutionaries (STAR) with Marsha P. Johnson as a form of care work to support and to house trans youth (Rivera 72). Che Gossett references the work of Tourmaline that re-centers these legacies of deliberately excluded Stonewall veterans—trans women of color—within HIV histories. Gossett reminds us that Johnson, leader of the gay liberation movement and the Stonewall riots, was “living with HIV and also cared for those close to her who were living with HIV, many of whom died during the onset of the AIDS epidemic” (22). This early work of trans women is often excluded from HIV archives, an exclusion which continues to impact contemporary queer and trans community formations.
This project therefore looks not only for what is present in the HIV archive but also for what is missing. Archivists and scholars including Steven G. Fullwood, Kate Eichhorn, and Ann Cvetkovich identify the unpaid emotional labor of caring enough to collect, house, and look after archives across time and space (Cvetkovich 8; Eichhorn 14; Fullwood 48, 52; Sawdon-Smith 2008; Carlomusto et al. 2016). Jih-Feh Cheng also uncovers the labor of collective HIV activist video makers in caring for their footage to create cultures of memory, police accountability, and caregiving that support direct action (86). The HIV archive thus also holds the potential to structure cultural production and labor collectively around forms of exchange that undercut capitalism (Eichhorn 10, 14-15; Cheairs et al. 6, 11; Hartman 228). While some HIV histories have been effectively preserved, others have become “degraded” (McKinney and Meyer 2016).[i] I thus revisit HIV archives not only to analyze what one might find there but also to interrogate absence, taking care to question which caregiving testimonies have not yet been sought out (Köppert and Sekuler 2016; Youngblood 2016; Fullwood 52). Cait McKinney traces the ongoing impact of revisiting untold historical narratives of HIV. In “Can a Computer Remember AIDS?” McKinney discusses the HIV archiving process, identifying how, “as archival logics order cultural memory, they render certain ‘AIDS of the past’ intelligible, often at the expense of others.” Telling and re-telling easily accessible stories can obscure the violence of erasing histories that are harder to find. Ted Kerr outlines how the HIV cases from 1981 that are often narrated as marking the beginning of HIV in North America obscure the legacies and access needs of communities that were affected by HIV decades before this historical moment. Kerr identifies that the media and medical professionals’ inability to notice or care about HIV until it began affecting white subjects creates a limited narrative of HIV that continues into the present: “we keep repeating the history we think we know to be true, the one that starts in 1981. But this is not the history of HIV/AIDS; it is the history of our response to HIV/AIDS.” Kerr reminds us that telling narratives of these histories in the present “is powerful because it shares stories about the AIDS crisis that inform the world we live in now.” Thus rather than recreating what Chris Bell terms “White Disability Studies” (275) by retelling the same—white-dominated, trans-exclusionary, already-told—histories over again, this book follows the advice of British Visual AIDS curator, historian, and photographer, Ajamu, who reframes HIV archiving as a dynamic process that “coincide[s] with other moments across time, space, Diaspora.” As Ajamu asserts, “how we think about archives is not what we go to but it’s what we bring with us. How do we bring ideas of pleasure, passions into archival work?” In attempting to answer some of these questions, I return to HIV archives hoping these disability legacies “can be lived and imagined a little differently” (Titchkosky 10) through a framework of mutual care. While care is not the only outcome or only possible reading of the archives I revisit, I center caregiving in order to preserve the work of those who were lost, as well as the ongoing care that is taken in “remembering and not remembering” (Varghese 2016), “to shovel dirt upon dirt upon dirt to bury all the dead” (Robinson 76), as survivors continue to mourn, to memorialize, and to forget (Robinson 75).
Taking Back Care
Care is a central thread across this project that brings together early HIV activism with contemporary disability kinships. In this section, I attempt to define care with the same openness and flexibility with which care can be given. Through early HIV narratives, I imagine an ongoing anti-racist, anti-assimilationist model of queer and trans care that disability movements can draw on to confront the access barriers created by capitalism. At its best, care can become a reciprocal process that forms queer and trans intimacies and familial connections as is evidenced by the activist responses to HIV (Bell et al. 439; Black and Whitbread 4). These HIV narratives, however, also uncover disappointments about inadequate care and the harm that occurs when care fails. HIV narratives thus further expose the ways in which capitalism and neoliberalism, racism and colonial violence, and anti-queer and anti-trans violence create barriers to giving and receiving mutual care (Bell et al. 455; Farber 181). While care giving is essential for those whose access needs are not otherwise met by institutions including biological family and the medical system, this book thinks through the feminist possibility of care taking, of taking matters of body self-determination into “Our Own Hands.”[ii]
This book revisits these narratives of queer and trans intimacies that formed when care was denied by the state. The failure of the state in providing adequate care for people living with HIV reflects broader systems of gendered racism perpetuated by capitalism (Singleton 51; Hobson “Thinking” 205). While grassroots queer and trans community care became necessary because of state neglect, the (albeit often inadequate) state systems that (can) exist to provide paid caregiving for disabled people eventually became available to people living with HIV. The shifts in care from grassroots supports to state systems reflects the complexities and limits of providing care through capitalism (Hobson “Thinking” 206). Emily Hobson, a historian of queer U.S. and radical movements, further links HIV activism and its histories to the ongoing “neoliberal replacement of the state by non-governmental organizations (NGOs)” (Hobson “Thinking” 206).
Hobson’s work challenges us to revisit HIV history not merely to romanticize the past but to connect HIV caregiving to addressing larger instances of racism, commodification, and global access barriers called into relief by paid caregiving, state disability services, and the nonprofit industrial complex (“Thinking” 206). As HIV caregiving theorists including Katie Hogan and Jeanine DeLombard point out, the majority of HIV caregiving labor is underpaid and unpaid and is provided domestically and through the state by queer women and women of color (Hogan 4; DeLombard 351). Moreover, daily experiences of racism, job precarity, and low wages are characteristic of state-funded paid labor within domestic care, nursing, and long-term care institutions (Ryosho 60; Bauer and Cranford 66). An analysis of early HIV caregiving models created in opposition to capitalism thus can thus offer broader ongoing interventions in disability caregiving toward “addressing racism . . . translating personal analysis into collective political action and thus simultaneously transforming both individuals and social institutions” (Ryosho 68). Rather than simply advocating for caregiving without the state or for adopting a caregiving model that is state-run, this book instead aims to transform the state itself for failing to provide care in a non-exploitative way.
As disability justice writer and activist Leah Lakshmi Piepzna-Samarasinha argues in Care Work: Dreaming Disability Justice, DIY models of care from the everyday lives of queer and trans people of color offer alternatives to racist and gendered state systems by “break[ing] from the model of paid attendant care as the only way to access disability support” (41). Lakshmi Piepzna-Samarasinha challenges neoliberal models of caregiving toward the anarchist crip goal of radically “rewriting of what care means, of what disability means” (46) by mapping out queer and trans of color community care webs “controlled by the needs and desires of the disabled people running them” (41). In placing early HIV caregiving narratives in conversation with these contemporary movements, this book revisits ongoing legacies of HIV activism not simply to create a new model of care but to disrupt the labor norms of the capitalism.
Returning to early HIV narratives of caregiving thus offers an ongoing critique of capitalism for undervaluing care work. In The Erotic Life of Racism, Sharon Holland draws on queer and critical race theory to “take care of the feeling” (6) that “escapes or releases” (6) as bodies “collide in pleasure and in pain” (6); Holland understands desire and intimacy as informing daily acts of racism, and therefore urges readers to care about the feelings that this process creates (11). In reading early HIV narratives as offering anti-capitalist, anti-racist caregiving models that value the access needs, desires, and labor practices of communities of color (Lakshmi Piepzna-Samarasinha 46), the queer and trans exchanges of pleasure and pain in these narratives contest the state forms of care and the kinds of racism that state systems—and state caregiving systems in particular—continue to perpetuate. Drawing on Erickson’s queer and trans caregiving collectives, Lakshmi Piepzna-Samarasinha asks “what does it mean to shift our ideas of access and care . . . from an individual chore, an unfortunate cost of having an unfortunate body to a collective responsibility that’s maybe even deeply joyful?” (33). Forget Burial revisits these joys not merely to wax nostalgic about early HIV narratives but to grapple with the contradictions and complexities of community caregiving to dream these anti-capitalist imaginings into the future.
A return to early HIV archives also reframes caregiving as a form of activism. Because caregiving labor is often gendered and unpaid, it can become dismissed as being less revolutionary than now-iconic forms of HIV street protest. This book analyzes novels and other caregiving narratives to re-center many different kinds of care as frontline work. These narratives demonstrate how forming chosen families—as well as transforming how we understand and treat our biological families—has always been a vital response to the failure of capitalist systems in providing adequate support. HIV archives also attest to the ongoing racism of the state, and to community responses to institutional access barriers to care. The anti-black racism enacted through medical access barriers is addressed in a 1986 archival issue of Black/Out, a black gay newsletter published in Philadelphia. In this newsletter, black gay literary anthologizer and editor Joseph Beam, who was living with HIV, writes, “the State (a euphemism for white people) has never been concerned with the welfare of Black people . . . It is not a matter of whether their racism is intentional or unintentional. We die ‘by accident’ daily and the State is a witness who documents that demise.” Beam quotes the poetry of Essex Hemphill to encourage black communities to take health issues into their own hands: “Hemphill writes in ‘For My Own Protection’: We should be able to save each other / I don’t want to wait for the Heritage Foundation to release a study saying / Black people are almost extinct…” The 1986 publication Bebashi: Blacks Educating Blacks About Sexual Health Issues, also published prior to the formation of late-80s movements like ACT UP, already identifies how:
AIDS is a disease, not a lifestyle. And the methods through which it spreads are no longer a mystery or hard to explain. But the socio-political reality is that those who have traditionally had greater access to health care and educational opportunities are those who today are learning how to protect themselves against this disease. And those who are traditionally forgotten are again being forgotten—with tragic, almost genocidal consequences. (2)
Early HIV chosen families formed in response to the failures of biological families and the state (Knauer 162; N. Nixon 128; Greyson 1987; Gillett 9-10; Wolfe 227; Foege 616; Bryan 69; Kramer 20; Denneny 42). This grassroots response to state medical negligence is one in which black, indigenous, and other underserved communities have always created in order to meet their own medical needs (L. Nixon 2017; S. Smith 169; Konsmo 2013; Wilson 81; Yee 22; Oliver et al. 909; Hewitt 9; Woubshet 43). When connected to these long histories of community-centered care provision—and to emerging disability movements—HIV caregiving narratives become part of an ongoing disruption to neoliberal systems that regard each of us as responsible for our own access needs (Clare 9; Derkatch “Self-Generating” 134; Derkatch “Incipient” 6; Derkatch Bounding 185; Geary 4). Using his own HIV test as a visual example of the medicalization of the individual gay male body, Delany expresses frustration with this medical rhetoric of testing through which “health itself is totally and forever denied but rather deferred, test after test after test, until, presumably, death” (140). Delany addresses the cultural imperative toward health by weaving risk into his life’s narrative and by managing it as a calculated component of his relationship to cruising. Delany writes, “I enjoy a certain kind of pleasure. I gamble on getting it” (169). In opposition to such individualist understandings of “health,” HIV narratives of caregiving re-center the gendered labor and the queer and trans communities formed while fighting for disability access.
Revisiting HIV archives thus also offers an ongoing narrative of queer and trans responses to state medical violence into the present. These narratives reframe disabled bodies as inspiring the formation of kinships rather than as “sites of shame” (Erickson 42). De La Cruz’s autobiographical accounts of leading some of the first ever support groups for women living with HIV, of decorating hospital rooms with birthday paraphernalia, and of hosting (and also writing about) HIV Passover Seders exemplify this narrative reframing: De La Cruz depicts her own experience in the hospital not as a source of shame but as one of gay-famous celebrity sightings and mutual support. In the camp tradition of celebrity gossip, she reports, "well, low and behold! The guys hanging out read like a Who's Who of the HIV community. Sitting in the middle of all the madness, holding court, was my very own Newsline editor, Phil. And he was surrounded by some very impressive people, like the activists Vito Russo and Damien Martin and some other guys that aren't gonna talk to me 'cause I didn’t mention them here" (111). Inverting the stigma of recognition, De La Cruz identifies the opportunities for queer friendship and sexual affirmation that can be found in the hospital ward. Contesting cultural representations of disability as a desexualized site of shame, De La Cruz creates community-driven forums to express desire for bodies living with HIV: "I'm going to kick off a new idea in the Newsline; it's going to be called the hot PWA of the month. So, if you have any photos of yourself or your buddies to send them in with a paragraph or two about yourself, we'll run it.” Inverting mainstream media narratives of stigma and contagion, De La Cruz cautions to “please make sure you have at least minimal clothing on, (although I'd be more than happy to accept nudes for my own personal use) because the Newsline doesn't need an obscenity suit." In building community via the “hot PWA,” De La Cruz’s work speaks back to narratives that position disability as antithetical to sexual desire. As Loree Erickson argues, disability holds the potential to bring queer crip bodies together “to create and find places where we are appreciated and celebrated for the very differences that are often used to justify our oppression” (42). Drawing on Erickson’s work, I lean into the possibilities for caregiving to be sexy and connective rather than necessarily isolating, underappreciated, or an inevitable source of burnout. De La Cruz’s claiming of the NYU Medical Center as a sexualized, queer social scene in the early 1990s speaks to the work of contemporary disability activists like Erickson and Withers who sexualize the “pleasure and shame” (Rees 112) of medical waiting rooms as cruising zones and make porn about wheelchairs in order to—like the HIV activists who preceded them—locate their queer crip bodies as prompting collective resistance.
Just Drop My Body on the Steps of the F.D.A.
In this next section, I consider my own relationship to early HIV kinships, in spite of the fact that I was too young in the 1980s and early 1990s to become part of this movement. Upon first entering the HIV archives to begin this project over a decade ago, I was not initially searching for stories about doing the dishes, listening, and food preparation. When I became an HIV activist in my 20s in the first decade of the 2000s, I was not expecting that my primary role in HIV community would be in doing the dishes, listening, and food preparation. What I was searching for in my HIV work—both as activist and as academic—was for stories of how the system fails to support queer and trans people. In learning how many of these stories are really about care, it became apparent that caregiving is also the organizing principle of my own work. This research not merely points to the beauty and power of care but also makes unavoidable the failures and disappointments of becoming vulnerable with and to others. HIV archives capture moments when care becomes transformative against stigma and isolation but also when it does not. Caregiving narratives actually foreground the limitations and pain of bodies, of mourning, of burnout, of selling out, and of stories that remain forgotten, buried, and unresolved.
I revisit these HIV narratives not just in spite of the fact that I was not involved, but precisely in response to this knowledge gap in my own generational experience: how am I impacted by this legacy of community care that I am not able to personally know? In connecting early HIV caregiving narratives to gender and sexuality in the present, I revisit a portrait of Wojnarowicz that continues to circulate across print and digital platforms.[iii] Photographed by Bill Dobbs at an ACT UP protest of the Food and Drug Administration (FDA) in 1988, Wojnarowicz sports a denim jacket with a pink triangle on the back. Printed in DIY (do-it-yourself) large white block letters on the back of the jacket, the bold script scrawled loudly across Wojnarowicz’s body relays the message “if I die of AIDS – forget burial – just drop my body on the steps of the F.D.A.” The imperative here is not to forget “my” individual burial but rather to embody a collective refusal by people living with HIV to “disappear quietly” (Wojnarowicz 230). Wojnarowicz showcases the power of his own sick body and even his corpse in forcing a homophobic system to care about HIV (“Wake Up Queers” 1992; Feinberg 264). I play—in this book’s title and in its content—with the narrative meanings of “burial” to address the ongoing state violence that marks certain bodies as undeserving of access to care (Nguyen 4; JH Jones 109; Herndl 555; Cohen 36; SL Smith 5; 113; Washington 400; Crimp 133). Unburying these narratives of loss directs accountability toward institutions that devalue the survival of bodies that do not conform. Archives of caregiving also “forget burial” by preserving across generations the narratives of those who have died (Gill-Peterson 280; Castiglia and Reed 9; Arriola 2014; Hilderband 307; Woubshet x, 24).
Although it remains tempting to affirm the pervasive narrative that older queers are responsible for dispensing these histories to a disappointingly apathetic younger audience (Finkelstein “Silence=”), this simplified assumption of disconnect between generations is often inaccurate; such narratives of disconnect obscure how HIV caregiving and its historical preservation is already happening—and has always been happening—across generational lines (Barnhardt 13). Juhasz and Kerr identify the utility of “rubbing the past up against the present” to consider what out-of-circulation media mean to young viewers in current contexts (2014). Juhasz calls this process “queer archive activism” (320), which refers to using video edits and one’s own presence within the footage to “remember, feel anew, analyze, and educate, ungluing the past from its melancholic grip, and instead living it as a gift with others in the here and now” (326). These material archives also connect HIV activisms of the 1980s and 1990s with digital disability movements of the present. I therefore “forget burial” and unbury archives to ask how HIV histories offer disability kinship models that continue to support queer and trans body self-determination.
Bringing these HIV histories into the present necessarily emphasizes generational differences in lived experience, as well as barriers to witnessing trauma across generations. Visual AIDS curator and artist Nathan Lee and artist and writer Carlos Motta create dialogue to address these intergenerational challenges of attempting to access HIV histories as younger queer men. Lee and Motta discuss PrEP in the context of their own relationship to HIV. Writing to Motta, Lee recognizes,
I will never know what it means to live through the AIDS crisis. I will never watch all my friends get sick and die. The enormity of that experience is a kind of black box I cannot access. And that is something I’ve realized that I increasingly need to respect and account for in all my words and thoughts.
When I began my research for this book in the mid-2000s as a graduate student, my objective was to learn how to talk about HIV activist legacies in a way that could bring that experience of death and loss into a contemporary context. I thought that by studying hard and performing well, I could transmit the traumatic experiences of queer activists preceding me to my own generation, and that would make for an exciting research project. At the end of my oral exams that would qualify me to begin work on my dissertation, I awaited the remarks of a panel of legendary HIV activists (now also distinguished English Professors), who all frowned at me from across the examination table. In a display of tough love, which I now understand as a (very New York City) act of care, my mentors clarified my central problem: “Marty, it is clear from this exam how much you love literature and how much you love to read, but you know absolutely nothing about what it was like to live through those years of the AIDS crisis.” I learned in this moment that my project could never be about understanding HIV across generations. I realize now that I will never be able to comprehend what it means to live through (or die in) this period. I also learned from writing this book that my retelling of these archival stories will always be inaccurate precisely because I was not there. My decision, however, to nevertheless investigate this archive comes out of a persistent desire from my own generational experience of trying to make sense of what HIV is and how HIV activists, many of whom have died and I will never get to meet, change the way I continue to understand myself. The act of revisiting HIV archives of the 1980s and 1990s is, as Eichhorn acknowledges, “not . . . to recover the past but rather a way to engage with some of the legacies, epistemes, and traumas pressing down on the present” (5). In attempting to understand the present through this revisiting, I hope—as Lee and Motta advise—to continue to “try to grasp where the contours of my experience are structured by the limitations of my experience.” As Eichhorn reminds us, “a turn toward the archive is not a turn toward the past but rather an essential way of understanding and imagining other ways to live in the present” (9). Similarly, Cvetkovich outlines, the project of uncovering HIV activist histories is as much one of building an archive as it is of examining one (8). In unburying HIV archives, I reframe my own generational understanding of queer and trans kinship, of caregiving, and of disability in relation to this legacy of loss.
When I started this project, my first archival visit was to the HIV collections at the New York Public Library (NYPL). In her investigation of the NYPL’s HIV archives, Cvetkovich captures the disconnect between the activist aesthetic of these cultural artifacts and the sterile finery of the NYPL’s reading room wherein much of this archive is housed. The NYPL contains one of the largest HIV archives, housing everything from collective meeting minutes documenting the grassroots organizing of the Women’s AIDS Resource Network (WARN) to activist David Feinberg’s personal cookbook (and pornography) collections. The materials found in the HIV collections expand conceptions of what might constitute HIV “literature” and what might compose a disability “archive.” Cvetkovich maps the various initial locations of the HIV archive prior to its ultimate arrival at the NYPL, where it remains to ensure its continued preservation. She then recounts her experience of accessing the archive:
The classical architectures and huge reading room are imposing, displaying on a massive scale the idea of tradition, which is being invented as well as preserved by the archive. Entry to the manuscript collection is available by special application only to those who have specific research projects; the research room, which is located off the main reading room, feels like a sequestered space for devoted, and slightly antiquated, scholars. (247)
I noted this disconnect most heavily when—upon sitting at this marbled, ivoried, grandiose table of biblical scholars—I opened a box of Feinberg’s porn. The contradiction between the unabashed sexual cultures of HIV activism and the sterilized material history inhabited by the dislocated researcher points to the possibilities for taking these collections out of their boxes and challenging contemporary disability narratives through their recirculation. This archive contains materials including the decoupaged index cards of Feinberg’s favorite gay personal ads, as well as the unpublished “AIDS Journals, 1989-1992,” of New York City-based artist, writer, and sculptor Stuart Edelson. Edelson’s words directed me from the outset of my project to consider the experience of living with HIV in relation to disability. In his diary, Edelson discusses a dilemma he faces when he begins to feel too sick to work (Dyck 122; Withers 11). He writes,
I have a pretty good idea that the amount of money I would have to live on if I went on permanent disability, would be totally inadequate to cover my needs. I would be acquiring a new and worse disease called POVERTY! So I’ve decided to put that inevitability off for as long as I can. Let me embarrass or disgust them all into knowing how mean our system is.
When I first read these words in Edelson’s unpublished diaries, I felt moved to reprint them. To resist investigating this period as a static thing, I turn to HIV archives as inspiring an active process of curation. Rather than reading narratives of HIV activism as already fixed in the past, this book recirculates these archives to offer an ongoing narrative model of community caregiving toward addressing the persistent meanness of “our system.”
Having a Good Time Dealing with It
My methodology undertakes the literary analysis of novels alongside a multitude of other materials including theory, autobiographies, short stories, poetry, and non-fiction writing, as well as archives, oral histories, zines, visual art, video, porn, and digital media. Across the chapters of this book, I close read novels alongside this constellation of materials to reimagine ongoing queer and trans responses to state violence and to the daily pain, grief, and care of navigating disability and death. Although current queer and trans theoretical frameworks for analyzing genders and sexualities did not yet exist in the 1980s and 1990s, their application to these archives inform my observations of how early HIV narratives influence ongoing narrative practices of resistance to ableist, hetero, white supremacist, colonial, and cisgender norms. While some of the contemporary texts I analyze address HIV directly, I argue how even those works that do not engage with HIV overtly can be placed in conversation with caregiving archives to challenge body norms.
In Chapter One, I ask what it would mean to read Octavia Butler’s 2005 vampire novel Fledgling as a caregiving novel about HIV. In re-imagining these queer, polyamorous, undead communities alongside archives of HIV, this chapter provides a framework for reading disability as a powerful site of kinship. Communities of care, Butler’s novel reveals, are not utopias but contain the same gendered and racialized violence reinforced by caregiving narratives themselves. These forms of harm—a caregiving reading of the novel uncovers—can be addressed through Afrofuturist re-imaginings of justice. Through my literary analysis of Fledgling, this chapter also connects contemporary HIV activism to archives documenting the invention of safer sex. This chapter understands community accountability and obtaining consent as forms of caregiving that support autonomy from the state. Butler’s work thus offers disability kinship models toward imagining alternatives to prisons as a community-driven form of care.
Responding to the communal possibilities offered by Butler’s vampires, Chapter Two revisits archival videos, poetry, newsletters, zines, and posters as narrative records of caregiving activism. This chapter recalls trans women’s activist histories that have been excluded from HIV archival collections. Through narrative analysis, I revisit a variety of trans women’s archives to observe the formation of queer community partnerships and fractures via HIV caregiving. This chapter considers the function of HIV activism in building broken coalitions between trans and gay communities, and in supporting trans chosen family formation through the de-stigmatization of disability. In Chapter Three, I move from chosen communities to the biological family as a critical site of care. I place a literary analysis of Schulman’s HIV fiction in conversation with the contemporary short fiction of Casey Plett. These texts together with archival and contemporary writing by activists including De La Cruz, Bryn Kelly, and Sur Rodney (Sur) offer a host of representational possibilities for narrating disability kinships formed in response to family trauma. I read fiction alongside autobiographical writing to consider how the family can become as a site of harm but can also sustain reciprocal care.
Chapter Four then takes up an examination of Rebecca Brown’s narrative strategies for representing the chosen families and queer intimacies that can emerge from caregiving. A lesbian writer whose 1994 publication The Gifts of the Body brought her from independent publishing venues into mainstream media outlets, Brown omits the biographical details of her unnamed narrator in this literary account of HIV care. Reading The Gifts of the Body alongside Brown’s earlier HIV short story “A Good Man” (2003) raises questions of narrative withholding and of why Brown erases herself from her own autobiographically-based text. Through this process of emotional distancing, the narrator actually demonstrates the interconnectivity between bodies that caregiving can create, building queer chosen families in response to HIV. Chapter Five traces this phenomenon again in Jamaica Kincaid’s My Brother, which likewise represents care through the perspective of a conspicuously misleading auto/biographer. This chapter revisits Kincaid’s deceptively straightforward (and deceptively straight) diasporic text, reconsidering the role (and the reliability) of the narrator in the act of giving care. I read this gap between this untrustworthy narrator persona and the author herself as exposing the barriers to care created by colonial violence and forced migration. In reading Kincaid’s work alongside the prison activism of AIDS Counseling and Education (ACE), HIV caregiving narratives again offer a framework for imagining prison abolition and disability kinships. In reading Kincaid’s representations of queer family formations in conversation with early HIV documentaries of prison activism, this chapter uncovers the limits and failures—as well as the narrative openness and transformative potential—of care.
The chapters of this book thus begin with a reading of Butler’s speculative fiction about the creation of chosen families in response to disability, and end with ACE’s real-life formation of HIV community in prison. The sequencing of the chapters presents a progression that considers the various successes and also the disappointments of queer and trans caregiving as providing different kinds of intimacies in supporting decriminalization. In observing representations of HIV family formations, their aspirations toward mutual care, and their inevitable limitations, I argue that bringing early HIV narratives into present continues to shape our understandings of disability. This book does not attempt to provide a comprehensive HIV history because many of the archives it draws from are based in the US, and New York City in particular. My intention, accordingly, is not to present a cohesive narrative of disability activism but rather to understand many of its components—calling numbers in phone trees, doing the dishes, decorating a hospital ward, hosting HIV Passovers—as inspiring ongoing queer and trans body self-determination. My goal in presenting this limited cross sampling of archival material is to expand understandings of disability kinship by inviting those we have lost to continue to haunt and to inspire us. I hope, in De La Cruz’s words, that Forget Burial supports us in “having a good time dealing with” disability, with the disappointments, the fun, and the vulnerabilities of care.
Notes
[i] “Tape Condition: Degraded,” McKinney and Hazel Meyer’s pornography exhibition at the ArQuives raises these questions of how histories of queer sex positivity (and porn) can be preserved through digitization from degraded VHS cassettes; McKinney and Meyer imagine these histories into existence while also lamenting the gap in findable materials other than those of commercial, gay, white productions; in failing to find the porn that they desire, McKinney and Meyer build, perform, draw, and collaborate with queer and trans artists to conjure porn that, in contributor Page’s words, “dream of an archive in which bodies like mine and people who fuck like I do exist.”
[ii] In Our Own Hands is a collectively written feminist column about women and HIV from Outweek magazine (1989-1991) in which lesbian communities share information about resource access. I unburied these periodicals at the Lesbian Herstory Archives in 2008, and the collection has since been digitized and is now available online.
[iii] For instance, on Tumblr this image’s circulation between April and July 2014 alone produced upwards of 60,691 likes and reposts; The 2012 recreation of this denim jacket by youth including photographer and textile crip artist Katie Jung attest to its ongoing resonance; This photograph was also circulated in Corpus, an HIV publication by AIDS Project Los Angeles in 2006 (Ayala 80); In conversation with Jean Carlomusto in Corpus, photographer Emily Roysdon also discusses her tribute to Wojnarowicz’s body through her own self-portraits, as she expresses her desire: “…to work with David, stitch myself into bed with him, turn myself into a fag. Yes, turn myself into a fag, allow my desire to move my body, change my body, to make something that gets me closer ...” (78)
Product details
- Publisher : Rutgers University Press; 1st edition (November 13, 2020)
- Language : English
- Paperback : 214 pages
- ISBN-10 : 1978813767
- ISBN-13 : 978-1978813762
- Reading age : 18 years and up
- Item Weight : 0.106 ounces
- Dimensions : 6 x 0.6 x 9 inches
- Best Sellers Rank: #2,152,023 in Books (See Top 100 in Books)
- #214 in AIDS & HIV (Books)
- #1,401 in Sociological Study of Medicine
- #3,524 in LGBTQ+ Demographic Studies
- Customer Reviews:
Customer reviews
5 out of 5 stars
5 out of 5
4 global ratings
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Top reviews from other countries
Lisa cameron
5.0 out of 5 stars
Amazing book
Reviewed in Canada on November 9, 2022
Loved everything about it
