First Monday

Reclaiming HIV/AIDS in digital media studies by Marika Cifor and Cait McKinney



Abstract
This article puts forward an argument for the importance of HIV/AIDS to digital studies, focusing, focusing on the North American context. Tracing conjoined histories and presents makes clear that an HIV-informed approach to digital media studies offers methods for attuning to marginalized media practices that should be central to interrogating the politics, relations, and aesthetics of digital media. Artist Kia LaBeija’s #Undetectable (2016) is closely analyzed in order to explicate some of HIV’s potential resonances for digital studies, including viral media and justice-based responses to surveillance. We then propose a methodological framework for centering HIV in understandings of three key concepts for the field: (1) networks; (2) social media and platforms; and, (3) digital history. We argue that HIV-positive users bring expertise to navigating digital infrastructures that can surveil and harm while also facilitating pleasure and connection. Such tension provides models of response that publics need to insist upon more just digital tools and structures for our unfolding present.

Contents

Introduction
Conjoined histories
The absent presence of AIDS in digital studies
Frameworks for thinking about AIDS and digital media together
Conclusion

 


 

Introduction

From the prominence of epidemiological “virus” and “bug” metaphors in describing computer networks at risk since the late 1980s to understandings of health data in viral-load management and virality in social media since the 2010s, HIV and AIDS and the Internet have long been meaningfully and messily entangled. This article examines these linkages, both historical and contemporary, literal and figurative, in order to provide frameworks and methods for centering HIV/AIDS and its attendant cultures in critical studies of digital media, data, and technologies. Critical data studies, for example, ought to be unthinkable without concern for Human Immunodeficiency Virus (HIV) and Acquired Immune Deficiency Syndrome (AIDS); the ways health data is organized, stored, and shared has real and urgent implications for people’s lives and life changes in the context of far-reaching HIV criminalization in North America. There are many reasons why it is urgent to think HIV and digital media together, not least of which is their rarely acknowledged shared history. HIV and digital media share a set of core concerns: virality, risk, privacy, surveillance, and embodiment, to name but a few. As we revise this article in summer 2020, public health authorities are hastily rolling out contact-tracing apps and other digital responses to the COVID-19 pandemic; without an HIV-informed approach, these measures promise to advance surveillance regimes and enact disproportionate harms on marginalized persons. There are meaningful areas, problems, and opportunities in which critical HIV studies and digital studies need to be thought, felt, and experienced together. Scholars, activists, and minoritized persons invested in HIV and digital media can learn from each other in dialogue to move towards vibrant and just presents and futures. It is time to reclaim HIV in digital studies.

In 1987, Douglas Crimp wrote, “AIDS does not exist separately from the practices that conceptualize it, represent it, and respond to it. We know AIDS only in and through those practices.” [1] Digital media is now the way that we understand, represent and respond. When we refuse, ignore, or marginalize thinking about HIV in relation to digital media this is itself a meaningful response. By disregarding the vast evidence that HIV and digital media are and have always been enmeshed we are neglecting, as a field, many generative possibilities and promising connections. Moreover, the willful absenting of HIV/AIDS has a troubling shape and history. Not talking about HIV in digital studies right now is about ignoring the communities for whom HIV is a vital matter of concern in North America: Black and brown people, people with limited access to health and economic opportunities, trans people, incarcerated people, refugees and immigrants, sex workers, people who use drugs. The ways we don’t talk deeply or often enough about AIDS in digital studies is part of a larger structural process of HIV stigma and abandonment — a cultural process that is classed, racialized, and gendered in the context of an ongoing epidemic driven by structural oppressions, from poverty to incarceration to xenophobia.

Despite our position as scholars situated at the intersection of digital studies and critical HIV studies, we are primarily targeting our interventions here towards digital studies, given First Monday’s audience. However, we see the need for much further scholarship from HIV studies that takes a critical approach to the digital. Research on HIV and digital media has routinely engaged with the digital from within an individual responsibilization model (Crooks, 2019; Howell, 2015; Shamir, 2008) driven by public health interventions that lack a needed criticality and theoretical framing. From digital studies, HIV studies might draw on insights and methods to nuance understandings of platforms, users, and socio-technical systems. The way that digital studies ignore or neglect HIV is also reflective of the myriad ways that cultural stigmas shape how fields of study are formed. We as academics are not exempt from the impulse to turn away from difficult, unpopular, and underfunded subjects. Work on AIDS has been and is still stigmatized in the academy. This article is a call to action.

In what follows, we identify fundamental shared lineages for digital studies and critical HIV studies. We argue that an HIV-informed approach to digital media studies offers methods of attuning to marginalized digital media practices that should be central to interrogating the politics, relations, and aesthetics of digital media. The next section, “Conjoined histories,” traces some of the historical connections between HIV and digital media. First, we make explicit how the histories of HIV and digital technologies, data, and cultures are conjoined so as to expose their contemporary linkages. In the third section, “The absent presence of AIDS in digital studies,” we turn to how and why HIV/AIDS is routinely omitted or absent from digital studies scholarship. We explore through #undetectable (2016) by Kia LaBeija, a digital media artist living with HIV, how AIDS has always been entangled with the digital, and learn from LaBeija’s approach to articulate some of HIV’s resonances for digital studies thinking. The fourth part “Frameworks for thinking HIV/AIDS and digital media together” is organized around three key concepts of shared inquiry: (1) networks; (2) social media and platform studies; and, (3) digital history, and outlines how digital studies might bring concern for HIV to these concepts.

 

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Conjoined histories

Media studies has been central to cultural studies of AIDS and what is remembered as the North American AIDS crisis, a period between 1981 and 1996. AIDS activists have always been deeply invested in garnering and controlling media representation. This concern is exemplified by activist video collective DIVA TV’s 1991 mission statement: “We are committed to making media which directly counters and interferes with dominant media assumptions about AIDS and governmental negligence in dealing with the AIDS crisis” [2]. Activists created media to effect change in their own time: to challenge the mainstream media narrative, to advocate for better treatment options, to support community education work, and to create alternative representations and programming. As media scholar, DIVA TV member, activist, and contributer to this issue Alexandra Juhasz notes, “because in its earliest and still most well-known manifestation this retro-virus infected the bodies of white gay men in the United States, this community’s material, educational, and creative response to AIDS is found in video and television” [3]. Many activists used video and broadcast television as primary mediums of response, creating powerful representations of people living with AIDS. Such depictions were counter to mainstream phobic portrayals of those with AIDS as pitiable victims, damnable threats, and as alone and dying. Ron Goldberg describes how in ACT UP New York: “We did our own media ... when no one was covering us, we could still create coverage” [4]. Activist groups took media technologies, especially video, into their own hands mobilizing it critically for documentary, educational, and legal purposes [5].

Despite the extensive scholarship on AIDS activist media during the 1980s and early 1990s (Cvetkovich, 2003; Hallas, 2009; Hilderbrand, 2006; Juhasz, 1995; Juhasz and McCoy, 2018; Sendziuk, et al., 2010), digital media is not often singled out as a unique format, site, or subject of study. This is not because AIDS began in a pre-digital, resolutely analog milieu. Rather, AIDS, computing, and the Internet grew up together. However, the linkages that inhere in their conjoined histories and presents have been underexplored. The digital as distinct from analog media practices may have lacked meaningful resonance for AIDS media scholars in the late twentieth century, however, the digital distinction has come to matter for more recent AIDS-informed digital histories. As Benjamin Peters has argued, “digital” as a modifier for “media” is, on the one hand, a particularly late twentieth-century construction that shores up the digital’s overdetermined singularity [6]. On the other hand, digital also describes a specific set of concerns for what media do: digital media count and index, and in doing so, they manipulate the symbolic imaginary [7]. Digital media describes computational, networked, and data-entangled practices that are both similar to and emerge from more analog AIDS activist media, but also present new ways of thinking with and working on HIV/AIDS.

HIV circulated through North American social and sexual networks in the 1960s and 1970s (Kerr, 2016; Worobey, et al., 2016), though it was not until 1981 that the U.S. medical community identified what would become HIV and AIDS. The first recognized manifestation of the epidemic was in clusters of “homosexual men” diagnosed with previously rare opportunistic infections. A toxic mixture of paranoia and scientific ignorance about the retrovirus’ cause and means of infection created a widespread panic about AIDS in North America and also globally. Politicians and the media amplified these characteristics, leading to widespread discrimination, stigma, violence, and inaction, that contributed to the rise of an ongoing and global pandemic and the suffering and deaths of millions. In its early years AIDS was frequently identified in the press as gay-related immune deficiency (GRID). While it was not then and is not now a virus affecting only men who have sex with men, the symbolic and material association of HIV/AIDS with sex, gay men, and the LGBTQ community as a whole, was and remains important. This issue also speaks to this association, by including some work that takes as its focus gay men in the U.S.

In the early 1980s, in the face of rising death counts and widespread and far-reaching neglect, stigma, and discrimination from the state, mainstream media, pharmaceutical companies, and healthcare and insurance providers, gay and lesbian communities organized in response. Many gay and lesbian communities were divided along racial lines due to racism, homophobia, and residential segregation [8]. Inequitable resource distribution meant that many early AIDS service organizations emerged from within the social networks of white gay men, and that they were staffed largely by white volunteers, supported with white donors’ funds, and oriented towards meeting the needs of white gay, cis-men [9]. In turn, as they cared for those affected by AIDS and held vigils to honor the dead, the visibility of these early organizations reinforces the conception in the popular imaginary that AIDS was a white gay men’s disease, even as physicians early on found HIV and AIDS did not discriminate. Dominant representations still present an “egregious” mediated way of remembering this period that excludes the central roles played by women and people of color [10]. By the mid-1980s, AIDS-related deaths surpassed 20,000 in the U.S. [11]. Slow progress in treatment, prevention, and care that contributed to suffering and an escalating death toll prompted tactical shifts in AIDS activism [12]. In 1986 and 1987 oppositional groups emerged arguing for the urgency of confrontational direct action. Direct action was also provoked by a political climate in which repressive tendencies converged, including the rise of neoliberalism under Ronald Reagan, the growth of Christian fundamentalism, and institutionalization of novel forms of biopolitical population governance [13].

Conventional histories of the Internet also center the United States and its government, though more recent global Internet histories have shifted this frame (Mansell, 2017). The Internet’s origins and development are narrated as the fruits of U.S- funded military research networks that created packet switching protocols, the earliest robust communication with computer networks, and that led to the development of interconnection between regional academic and military networks (Abbate, 1999). Such dominant narratives connect these military origins to commercial networks in the 1990s that have supported pervasive commercialization and the incorporation of the Internet’s services and technologies into nearly every aspect of contemporary life. In the last decade there has been a move to rethink Internet histories that reconceptualize origins and evolutions, and that meaningfully center marginalized people and their voices and actions (Hicks, 2017; Friedman, 2016; Driscoll, 2014; Driscoll and Paloque-Berges, 2017). In this article and larger special issue on HIV/AIDS and digital media, we investigate the shared temporalities of emergence between AIDS and computer networks, following their entanglements into contemporary digital cultures while centering minoritized persons and perspectives (Brewster and Ruberg; Lubin and Vaccaro, both in this issue).

Since the 1980s, AIDS activists have taken digital technologies into their own hands, building powerful, pleasurable, far-ranging, life-sustaining, and politically meaningful platforms, spaces, and networks (Brewster and Ruberg; Juhasz and Kerr, both in this issue). Simultaneously, such digital technologies and platforms produce, reproduce, and reify deadly AIDS-phobia and spread misinformation, discrimination, and violence. For example, as Coleman and Cypher in this issue argue, AIDS denialists have long used online platforms to advance their deadly messages to halt antiviral medications or to question a positive HIV test result, contributing to premature deaths, new exposures, and suffering. It is these same digital platforms that the authors use to contest and disrupt such denialist discourses. Serostatus disclosure cultures in hookup and dating apps (Liang, Hutson and Keyes, in this issue), or the development of biometric data-collection tools at state and federal levels in the U.S. (Molldrem, in this issue) and in global regions with limited network access offer two further examples. Now, well into the fourth decade of the epidemic and of the popular Internet, the histories and genealogies of their conjoined development both constrain and generate who and what is recognized and remembered, what is and is not known about HIV as an illness, political crisis, and cultural formation, and what kinds of technologies and futures can be imagined and built for those most urgently affected.

 

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The absent presence of AIDS in digital studies

Questions of recognition and framing have been central to various cultural critiques of AIDS (who is counted and imagined within AIDS discourse), and can be extended to the ways AIDS is routinely marginalized in or disappeared altogether from the perceived purview of digital studies scholarship. In this section, we demonstrate how concern for HIV/AIDS makes significant contributions to digital studies. We examine here how we can surface AIDS’ interventions in the digital through a close reading of Kia LaBeija’s (Kia Michelle Benbow) artistic practice and her poster work #undetectable (2016). LaBeija is a prominent force in contemporary AIDS media, and her work has also captivated scholars of AIDS and its intersection with art history, Black studies, and gender and sexuality studies scholarship (Black, 2015; Bost, 2019; Demmings, 2016; Olivio, 2016; Ryan, 2015; Stamm, 2018). LaBeija is a theorist of digital media in her own right, modelling powerful interventions in how we think about Black women’s self-representational practices in the context of social media and the selfie (Dean, 2016).

LaBeija makes self-portraiture using digital techniques, for a digital audience, and has touched on themes of virality and networked relationships throughout her repertoire. The series 24 (2014) is her best known work, and deals with her experience growing up HIV positive through a series of self-portraits taken in her apartment, the same apartment she shared with her mother, who died when LaBeija was 14 from AIDS-related illness. Speaking about 24 and the themes of her work broadly, LaBeija has said, “My work gives a voice to issues that I think need to be talked about. I am a representation of a forgotten people — children living with HIV. We have always been left out of the history of AIDS, and now decades later we are still here” (quoted in Black, 2015). Examining LaBeija’s work as an HIV-centered digital theory illustrates some of the theoretical shifts provoked by reading HIV/AIDS and digital media together. Looking to contemporary HIV studies work matters given that HIV/AIDS is often relegated exclusively to the past and therefore the non-urgent in a North American context [14]. Yet, a reading of LaBeija’s far more recent work demonstrates how HIV/AIDS is still fundamentally relevant to our conceptualizations of the digital and its present implications.

The poster with its repeating slogan “#undetectable” is LaBeija’s creation [15]. It was made for the 2016 edition of PosterVirus. In conjunction with World AIDS Day and Visual AIDS’ Annual Day With(out) Art, this PosterVirus campaign premiered on 1 December. Using an ombre effect that moves from opaque to nearly transparent, LaBeija visually recites five times that same hashtag. Layered beneath her words is another digitally facilitated repetition. LaBeija collages the same digital photo. Turning her head over her shoulder to gaze at the audience, seven identical self-portraits appear at seven distinct angles, filling the screen. Her self-portrait speaks in the aesthetic language of the selfie (Dean, 2016; Risam, 2018; Williams and Marquez, 2015; Zhao and Zappavigna, 2018). LaBeija peers out from behind sunglasses with eyebrows arched and lips pouted under a high neon green coiffure. Each of the Kias perform a calculated, self-fashioned glamour, simultaneously midcentury femme fatale and punk siren. A Black, HIV-positive artist in her late 20s at the time this work was made, LaBeija is the former Mother of the iconic ballroom Royal House of LaBeija. Her artistic oeuvre explores and fashions her identities through digital photography and performance. As #undetectable cites and mobilizes the digital, LaBeija mobilizes it to bear witness to HIV/AIDS. She plays in form and content with virality and undetectability.

LaBeija created #undetectable for PosterVirus, a collaborative community-based arts activism initiative and an affinity group of Toronto’s AIDS ACTION NOW! Through public and digital art PosterVirus sparks dialogue and action on HIV/AIDS with nuance, depth, and an intersectional lens. The project launched its first campaign on 30 November 2011, the thirtieth anniversary of AIDS’ 1981 medical recognition. Its curators, sociologist Alexander McClelland and artist Jessica Whitbread, bring together artists, activists, and community groups to create posters (McClelland and Whitbread, 2016). The posters invoke the proliferation of AIDS agit prop posters that intervened in public space and consciousness in the 1980s and early 1990s by activist art collectives such as Gran Fury, Silence=Death, and fierce pussy (Finkelstein, 2018). PosterVirus images are similarly wheatpasted up in North American cities. Before the ubiquity of Web circuits, urban exteriors were public forums for the exchange of information and demand for action on HIV/AIDS. PosterVirus posters also move on digital walls in posts, likes, and reblogs on Tumblr, Facebook, and other platforms. Posters are routinely framed around a textual provocation, mirroring the strategic mobilization of catchy slogans by earlier artist-activists — “Kissing Doesn’t Kill,” “Read My Lips,” “Silence=Death,” and “Women Don’t Get AIDS, They Just Die From it.” PosterVirus counters contemporary logics of individual responsibilization and individualized responses to HIV/AIDS. Such constrained AIDS responses, the curators and artists assert, ignore the messy realities of HIV. HIV/AIDS sits always at intersections of structural violences. The posters address AIDS alongside racism, capitalism, poverty, homophobia, criminalization and incarceration, stigma, drugs, and sex work. Reversing the one-way gaze of AIDS social marketing campaigns, PosterVirus centers the voices of HIV-positive curators, artists, and activists (McClelland and Whitbread, 2016).

LaBeija’s work responds to a long history of damaging ideas about HIV positive people and digital media emerging from public health literature since the early 2000s. When this work dealt explicitely with the Internet, it often argued that gay men’s online hookup cultures increased HIV transmission because online communication with strangers posed more risk, and made casual encounters easier and more frequent (McFarlane, et al., 2000; Benotsch, et al., 2002) [16]. Other public health scholars have troubled the simplicity of this approach to thinking about digital media and behavior (Bolding, et al., 2005). Though more nuanced in its understanding of digital media’s imbrication in everyday life, some recent public health scholarship persists in its focus on digital media as somehow germane to risk exposure or mitigation. Some of this work understands digital surveillance and self-monitoring as productive prevention and treatment practices, without considering the carceral logics and extant threats to safety that accompany digital monitoring (Samal, et al., 2011; Swendeman, et al., 2015), harms taken up by Liang, et al. and Moldrem in this issue.

Other, more critical approaches in public health centered on affirming the lives and agency of HIV-positive people understand the Internet as a unique support system for people living with HIV, who seek out health information, and produce their own forms of community support online to circumvent stigma in other health-provision realms (Gillett, 2003; Reeves, 2001). Overall though, the boundedness of public health models to STI prevention circumscribes how the field understands digital technologies, social media, and their utility. Working against this monolithic approach to media, PosterVirus is a counter-public health campaign and a critique of public health’s individual responsibilization based in postering as classic, viral imagery. McClelland and Whitbread explain, “By sidestepping the AIDS industry which has framed HIV discourses as solely within the bounds of biomedicine, and top-down, state-controlled public health institutions, PosterVirus challenges the dominant and often damaging ways in which AIDS is signified ... .” [17]

Working against this dominant order of signification to fashion herself as the face of “#undetectable,” LaBeija makes visible the embodied experience of living with a new serostatus, and thereby, a new identity. LaBeija was born in 1990 with HIV to an untested mother (Ryan, 2015) in an AIDS time when a neat binary still seemed to fitone was either HIV sero-positive or negative. The former perhaps temporary, the latter categorically permanent (Caron, 2014). Undetectability is made possible by biotechnical innovations that made HIV treatments more effective after 1996. To be undetectable describes the status of a person living with HIV who through a combination therapy of antiretroviral pharmaceuticals and medical care suppresses the retrovirus, lowering viral load in their body to levels that render it statistically insignificant and untransmittable (Huebenthal, 2017). Even as it can improve life quality and prolong the lives of HIV positive people, such treatment is not an all-out cure and is not without a price. In reference to her well-known self-portrait Eleven (part of 24 series), taken in her doctor’s office, LaBeija describes the routine significance of this maintenance practice: “I go to the doctor all the time, to check my CD4 count, see how my viral load is doing. Am I undetectable? How are my organs doing? It’s a method of self-care, but one that not many people get to see” (LaBeija, quoted in Abraham, 2016). LaBeija is aware of the ways that undetectable creates anew what Steven W. Thrasher calls a “viral underclass,” people harmed not simply by microscopic organisms but by the societal structures that render certain people susceptible to viral transmission (Thrasher, 2020). Celeste Watkins-Hayes also warns of the “undetectable divide” in the context of Black women [18]. Undetectability requires lifelong access to a host of costly drugs, and the stability in housing, employment, insurance, and healthcare to perform consistent health maintenance, and is rendered inaccessible to those facing these structural barriers.

HIV is already invisible to the naked human eye, and through undetectability, it is made doubly so in its failure to register the virus’ persistent presence in conventional HIV testing (Cifor, 2019). Undetectability is at odds with corporate digital media’s drive to collect, categorize, and index actionable data about users. Liang, et al.’s contribution to this issue testifies to serostatus as a powerful limit case for thinking about stigma and the circulation of affect in social media environments. The emphasis on disclosure in app design points to the ways that serostatus is assumed to play a fundamental role in one’s identity and legal status. Some calls to reform laws that criminalize HIV transmission and that mandate disclosure have argued that people with undetectable viral loads should not be subject to prosecution under HIV laws. Such an approach leaves behind people who have detectable viral loads, who are disproportionately Black, unhoused, and unable to access expensive medications and care, advancing even within seropositive communities a viral underclass (Thrasher, 2020). Members of these communities are deemed unmanageable and in need of policing, criminalization, and surveillance. LaBeija critiques the imperative to disclose and its association with stigma by replicating images of her positive body in a mediation on her undetectable virus and on representation of people living with HIV/AIDS, Black femininity, and queerness. Voyeuristic mainstream media spectacles of people with AIDS have represented positive bodies as alien, gravely ill, and dying, evoking pity, fear, and danger (Crimp, 2002). These images make AIDS visible by showcasing visual identifiers marking infected bodies that manifest only in AIDS’ advanced stages (Keller and Snyder, 2011).

LaBejia offers a counter view from inside, positioning her positive body as vibrant, youthful, alive, and through her styling as belonging to a queer Black milieu. As Celeste Watkins-Hayes (2019) has shown, Black women have transformed HIV policies and organizations through their leadership and provide key examples of thriving with HIV, needed for a more progressive public health landscape in the treatment as prevention era. LaBejia draws upon an AIDS activist vocabulary to portray a “body that is infected with but not defined by the HIV virus” [19]. Her poster, as Ted Kerr (2019) identifies, also signals the myriad ways in which Black women are invisibilized, appearing only as tropes in popular culture. Even in forums that promised new representation like Art AIDS America, the first nationally touring exhibition on HIV’s influence on contemporary American art, LaBeija was one of only five Black artists included in the show featuring more than 100 artists. Speaking out against the erasure of Blackness in the show, LaBeija said, “If I weren’t in the show there would be no representation of African-American women with HIV who were born positive. And that’s sad. I’m also the only female artist living with HIV who’s part of the show. I play all these roles. But I’m not the only one out there. I couldn’t believe that in ten years they spent [curating the show] they could only find me” (LaBeija in Buhl, 2016). LaBeija’s design highlights how women, especially Black women, have been neglected and ignored within responses to AIDS (see Juhasz and Kerr, this issue). Julia S. Jordan-Zachary has documented how Black women are simultaneously “made invisible and hypervisible” and as result “these women are often denied access to care and their plight does not make it to the public agenda — they go unrecognized and unrepresented. While it appears that they are being talked about, in essence they are not being talked about — thus rendering them shadow bodies in the framing of HIV and AIDS” [20]. Jordan-Zachary (2017) argues that the representational frames or scripts that exclude structural issues Black women face in relation to HIV (issues such as access to housing and health care), or ignore queer and trans Black women, must shift. Taking up this hyper/invisibility, LaBeija has often described her own work’s service to girls and women: “my attention is on the children that are still around, and women, because it’s so taboo for women to talk about it” (LaBeija, quoted in Ryan, 2015). This focus emphasizes questions of reproductive justice that Jallicia Jolly (2016) argues are key to solidarity and meaningful self governance for women of color.

Through an act of purposeful naming manifest in the incantation of the slogan, “#undetectable,” LaBeija’s plays on another form of virality. Her hashtag is a way of raising needed attention, a demand for public recognition of HIV/AIDS, and for a critical mass of support. In the age of undetectability, HIV has been meaningfully reconceptualized in certain scientific, medical, and cultural discourses as less catastrophic than it once was. However, HIV stigma, discrimination, and fear continue unabetted (Cifor, 2019). For those with the privileges to access it, being undetectable renders one’s body no longer infectious, giving rise to new freedoms of expression and bodily entanglement. However, knowledge of and about undetectability remains largely unrecognized outside of AIDS communities. LaBeija invents herself as embodying a new AIDS era and futurity, her undetectable body transmitting only AIDS histories and knowledges. She employs digital tools for visibility, to raise awareness, and to contest the social structures that marginalize, endanger, and erase bodies like hers.

LaBeija’s poster plays on the hashtag’s status as a “viral” digital form to critique what virality means in the treatment-as-prevention era (Molldrem, this issue), in which “metadata has become how people communicate” [21]. The single word, “#undetectable,” asks those engaging with the hashtag to feel, act, and think about HIV [22]. Hashtags are a way of collating, processing, and retrieving tagged messages, used to take powerful political, economic, and social action. They are a form of communication that speaks in tongues legible from person to person, person to machine, and machine to machine. Undetectability is the star of social media prevention education campaigns aspiring to build momentum and aggregate data through slogans like “#U=U” or “#Undetectable=Untransmittable” (UNAIDS, 2018). These campaigns have been fairly critiqued as meaningless for the millions of people with HIV across the globe who lack adequate access to diagnostics and pharmaceuticals (Bereczky, 2019). LaBeija makes a more critical and complicated assertion. As Elizabeth Losh describes, “in theory, to be used effectively by people promoting a cause, project, or product, hashtags should be simultaneously short, unique, memorable, unambiguous, resistant to variant spelling, and descriptive as content labels” [23]. Labejia’s formulation has all of these requisite elements to ensure another form of viral circulation about a virus’ circulation. LaBeija’s hashtag performs digital belonging for people living with HIV in content and at a sociotechnical level. As Losh identifies, “Most importantly, a hashtag can assure people that they are connected to other people. A hashtag affirms that a communication channel is open, that being heard is possible ... .” [24].

Virality has a long history in digital cultures beginning as early as the 1970s (Spafford, 1994), when the term computer virus described replication: “a program or piece of code which when executed causes itself to be copied into other locations, and which is therefore capable of propagating itself within the memory of a computer or across a network, usually with deleterious results” (Oxford English Dictionary, in O’Conner and Kellerman, 2013). This process of digital contagion is a metaphor that mirrors the pattern of the HIV retrovirus’s rapid replication in the body in order to explicate concepts like vulnerability and risk in digital environments. Viral marketing grew up alongside the advent of personal computing in the late 1980s (Miles, 2014), and describes the swift dissemination of information about a product or service among customers via personal recommendation, e-mail messages, or other then-emerging digital communication tools (O’Conner and Kellerman, 2013). A September 1989 article in PC User, for example, describes the “viral marketing” of Macintosh computers [25]. In this period the phrase “to go viral,” first appeared to describe the phenomenon of an image, meme, video, or advertisement circulated widely and rapidly online. There are now entire companies — viral agencies — devoted to generating and replicating hits (O’Conner and Kellerman, 2013). While “virus,” “virality,” and “going viral” are popular buzzwords employed in computation, attention to HIV/AIDS, particularly in a Western context has nosedived despite the reality that the epidemic rages unabated in the most resource poor communities locally and globally [26]. LaBeija turns to viral media to draw attention to contemporary realities, expressions, and experiences of HIV/AIDS, which are reflected and produced by our cultural situatedness in computing and digital cultures. By playing in and with digital culture, LaBeija demands that AIDS be understood as not just of the past, but rather as a condition of our immediate present.

LaBeija’s #Undetectable poster lays bare the entanglements between HIV and digital modalities. Considering her work and its connection to discourses of virality and network publics, it is hard to understand why and also how digital studies has managed to relegate HIV to the background of such key concerns and concepts for the field. As people who often speak on or have organized AIDS-themed panels at major conferences in American studies, Media studies, and cognate fields, we often have to get up at six o’clock in the morning to present our work to miniscule audiences. This happens to everyone sometimes, and neither of us had thought much about it until a senior mentor in the field who has been doing AIDS media work since the 1990s and served as discussant on one of these too-early panels told us: “they always put the AIDS panels at 8 o’clock in the morning. I’ve complained about it before but nothing changes.” They went on, “if you are working on AIDS, your work will always be marginalized in media studies.”

HIV/AIDS is both stigmatized in the field but also invoked when it serves a convenient purpose. There has been and continues to be rampant AIDS-phobia in the ways media and information studies talk about memetics, using HIV as an illustrative metaphor without attending to the real stakes of this trope, or the ways HIV positive people experience it. Perhaps none of this ought to be surprising. AIDS, after all, has been downplayed or ignored in U.S. history more generally, when it could easily be the lens through which cultural politics in the 1980s are framed (Brier, 2009). LaBeija shows us one method for insisting on AIDS’ centrality to digital media practices. Taking our cue from her method, we turn in the next section to a set of concrete moments and sites in which this entangled recovery work could occur more regularly.

 

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Frameworks for thinking about AIDS and digital media together

Examining the ways that HIV positive people are marginalized in and by the design and study of digital technologies reveals how such technologies, systems, and worlds can be broken and damaging for everyone, even as their risks and harms are never equitably distributed. People living with HIV/AIDS refuse their subordination in and by these systems. They offer models for how users can trouble the sociotechnical status quo. Centering the voices, desires, and needs of positive people illuminates then how we could build, use, and live with technologies differently.

Anna Lauren Hoffmann’s (2017) scholarship on data, information technology, and transgender lives provides a model for how to center marginalized user groups who are subjected to harm within the digital realm in ever more pernicious ways. Taking our cue from Hoffmann’s assertion, we argue that HIV positive people’s experiences of navigating digital environments provides cues for reimagining data and information systems more broadly. The ubiquitous creation, collection, processing, aggregation, and mining of data offer new means for the exercise of social control and domination by those in positions of power (Andrejevic, 2013). Projects that aspire to classify and categorize people, objects, and systems are always already imbricated in processes of power, domination, and control (Bowker and Star, 1999; Boellstorff, 2013). Digital media holds new methods for defining, categorizing, and containing HIV, methods that may or may not account for the identities, experiences, and vital needs of people living with HIV or AIDS, past, present, and future. LaBeija’s use of “#undetectable” as a categorical marker and aggregator on the one hand, that is exceeded by her singular self-portrait on the other, is one amongst many instances of intervention in this tension by HIV-positive digital media users.

Since the 1980s, HIV positive users have relied on digital tools to build unique networks of relation, care, and to generate information sharing and resilience. As digital tools and platforms have emerged and evolved, users living with HIV and AIDS have conceptualized and practiced new modes of adoption, manipulation, and refusal. Users are creatively navigating and contesting HIV-stigma within mixed status networks such as hook-up apps. Everyday they make informed and nuanced choices about how to negotiate state-mandated and ethical serostatus disclosures. They also face and challenge coercive interface designs that power data extraction and its monetization and reuse. Users are refusing to simply accept the intensification of risk that leaky data and predatory platforms pose to their well-being. People living with HIV/AIDS are careful and critical custodians of the biomedical data collected about their bodies in clinics and public health campaigns, as this information is often imbricated within larger datasets. As they recognize the creep of data surveillance into more and more aspects of intimate life, many HIV positive people out of necessity have become powerful data activists. HIV positive people are proposing and advancing new ways of thinking about the Internet as an urgent matter of concern, making digital media into a site where data justice can and does happen.

HIV is both central in digital histories and salient for understanding the ways users who are made systematically vulnerable in digital infrastructures navigate, avoid, and contest computer networks, apps, platform constraints, and surveillance cultures. As such, digital media studies might more regularly consider HIV-focused research’s interventions in the field. In this section we offer frameworks for this project, organized around three key areas of shared inquiry: (1) networks; (2) social media and platform studies; and, (3) digital histories. This section is a reference for scholars and students who wish to bring an HIV-informed analysis to their concern for these objects and concepts.

Networks

The network is a fundamental communications model for digital media studies, describing the ways that individual users and groups are joined in nodal, decentralized, and dispersed arrangements facilitated by computing. Studies of digital networks focus on the distribution of power and difference in network arrangements (Chun, 2006), the distillation of governance and economic strategies in technical developments (Abbate, 1999; Medina, 2011; Peters, 2016), the formation of “network publics” with shared interests and connections facilitated by social media (boyd, 2008), and the ways minoritarian users form counterpublic arrangements by communicating outside dominant orders using online tools (Brock, 2020; Jackson, et al., 2018; Duarte, 2017; Florini, 2019; McBean, 2020; McGlotten, 2013; Mcllwain, 2019), amongst other areas.

Early studies of digital network publics foreground the novelty of connecting with others at a distance online, in meetings that are fleeting, casual, and disconnected from real life. Queer work on cybercultures in the 1990s explored these network arrangements and their disembodied, virtual connections with limited attention to HIV (O’Riordan and Phillips, 2007; Morton, 1995; Wakeford, 2000), falling as it did within what Juhasz and Kerr (this issue) describe as the Second Silence around the AIDS crisis. Other early work on memetics and the dangers of computer networks used HIV as a metaphor for representing the dangers and vulnerabilities inherent in network relations (McKinney and Mulvin, 2020). AIDS activists and communities of people living with HIV/AIDS were some of the earliest organized users of computer networks in the 1980s and 1990s (Brewster and Ruberg, this issue; Driscoll, 2014; McKinney, 2018). Networks offered these users the ability to communicate anonymously with others, and to become experts (Epstein, 1996) when poor information and stigma in information seeking defined access to meaningful health information off-line. Networks of care and community also defined analog modes of communication by AIDS activists, as Juhasz and Kerr point out in this issue through their discussion of VHS “trigger tapes” used in educational and therapeutic settings. Aimed at setting the scene for understanding others in their complexity, trigger tapes are both distinct from and also usefully thought in a longer lineage of AIDS-informed digital media.

To some extent, the network is an inherently promiscuous (Payne, 2015) form because it proliferates linkages with unknown others — intimate connections that are often difficult to find otherwise. At the turn of the twenty-first century, computer networks were the source of moral panics in popular public health discourse as arguments that the internet and HIV created a perfect risk elixir found real traction in popular journalism. Citing findings from public health studies, early 2000s newspaper coverage set off moral panics about the Web and risk with headlines such as “HIV thrives through the Web” (Marchione, 2003), “Rise in AIDS virus linked to gay online chat rooms” (Usborne, 2003) and “Online access to risky Sex” (Ornstein, 2002). Public health discourse developed its own theorization of networks as dangerous technologies without considering how the normalization of anti-retroviral drugs was shifting attitudes toward sex and HIV amongst men who have sex with men alongside the widespread adoption of the Web (Mowlabocus, 2007). This is not only a problem of history, as contemporary feminist approaches to networks are also concerned with the harms online networks pose for marginalized users (Cowan and Rault, 2018; Noble, 2018; FemTechNet, n.d.). Digital studies might more regularly engage the significant body of literature on barebacking cultures in HIV/AIDS studies, in order to nuance the ways specific communities understand, communicate, and manage risk within network environments (Daroya, this issue; Dean, 2009; Gonzalez, 2012; Race, 2010a, 2010b; Varghese, 2019). Grounded in sex positive approaches that honor the knowledge of HIV positive users and their networks, this research offers situated accounts of how users make everyday decisions about their engagements with networks. For example, in this issue, Daroya argues that in “Pigpen,” an online barebacking community, the emergence of “sex pigging, affords much needed possibilities for reimagining the desires, identities, and practices of men who have sex with men beyond the very limited frames offered by dominant HIV prevention discourses and biomedical technologies.”

An HIV-informed analysis of networks encourages researchers to attend to the ways users who are subject to heightened surveillance, expectations of disclosure, and material threats to safety via criminalization rely on networks for support, pleasure, and indeed joy, while negotiating their imbrication in systems that they know can be harmful. LaBeija’s use of the hashtag modifying the charged term #undetectable references the network’s complexity for HIV. HIV-informed network scholarship reminds researchers to move beyond a simplistic binary of the good or bad of a particular network arrangement as they focus on why networks imaginaries are often associated with anonymity, risk, and vulnerability, and what these values mean to users in practice.

Social media, app, and platform studies

Social networking’s business models are built on commercial surveillance. They operate by collecting information about users’ identities and actions and sorting it into actionable, relational data. These “profiling machines” (Elmer, 2004) collect and process user-generated data in order to effectively target services, advertisements, and content (Andrejevic, 2013; Cheney-Lippold, 2011). Interfaces often willfully obscure the ways that such personal data can uncover user’s habits, locations, and intimate lives (Drakopoulou, 2017). Apps use this data for self-optimization, in the service of parent corporation’s needs, or to sell data to third parties at great profit. Serostratus — the presence or absence of markers in the blood that indicate whether one is HIV positive or not — is one user-data category alongside others, such as gender, race, occupation, location, sexuality, body size, disability status, and so forth. Sharing whether one is positive or negative has long been a harm-reduction method within gay men’s sexual cultures. For example, in the community-developed public health practice of serosorting to pursue pleasure while preventing transmission, Kane Race describes it as “creative and situated negotiations of the relations between sex, HIV risk, experimentation and care” [27]. Serostatus disclosure has also been, and continues to be, a mechanism for interpersonal and systemic stigma, rejection, and violence (Caron, 2014; Smit, et al., 2012). LaBeija’s poster design calls out how undetectable is a category routinely built on exclusion, advancing the marginalization of a viral underclass, those who are denied access to lifesaving medication and are thereby subjected to increased policing, criminalization, and surveillance measures. In general, all technologies of sorting and classification are often most palpable or violent in instances where binaries that do things are reified and enforced by systems and their norms of practice (Bowker and Star, 1999).

Social media reinforces binaries because binary data is most saleable, and therefore most valuable to platforms (Bivens, 2017). However, the rendering of HIV status is much more complicated than a simplistic binary given the realities of current health care and transmission. In the global North, models of treatment-as-prevention for HIV are ubiquitous. PrEP (Pre-exposure prophylaxis) an antiviral drug taken daily as a preventative measure by people who are negative but are deemed at risk for HIV, is widely prescribed. Being undetectable (a diminished viral load status in which HIV is no longer transmittable) is also becoming commonplace and shorthand, a status referenced by LaBeija’s repetition of the term. There are now much more nuanced ways of articulating one’s relationship to serostatus categories, readily apparent in the ways men record their status on hookup app profiles. Still, identifying as positive online can subject users to interpersonal rejection and violence and open up the possibility of further state violence. The recent notorious case of the Grindr data leak, which revealed the serostatus of users to third parties, showcases the potential for further marginalization and also legal and material consequences for those living with HIV/AIDS (Singer, 2018). At issue here is the coercive aspects of having to make a choice to disclose using language that is supplied via drop-down menus. Users must also navigate the violence that these categorizations can open and expose them tofor example, the use of serostatus data in legal proceedings related to non-disclosure criminalization (McClelland, 2019). Beyond the context of disclosure, Molldrem shows in this issue that the creation and maintenance of surveillant viral load and CD4 T cell count databases by public health institutions in the U.S. enacts viral hierarchies and flattens complexity in morally dubious ways, all in the name of prevention.

The platformatization of serostatus disclosure complicates digital media studies’ exploration of frameworks such as the “complicity” of users in damaging systems in exchange for whatever service an app provides. This formulation implies choice without dire consequence, assumes that users have other kinds of access to the experiences they seek via these apps or can withdraw from them, and holds up the possibility of use while opting out of disclosure without punishment, which is not always possible given the common legal requirement to disclose one’s status to potential partners. HIV/AIDS scholarship provides frameworks for understanding how users navigating the complexity of these systems and the risks they pose. For example, Marlon Bailey (2019a, 2019b) reformulaties understandings of HIV risk in the context of the lives of his informants, Black gay men who are routinely put at vast systemic risk for violence and death. Bailey asserts that HIV is quite simply not the biggest risk Black gay men are facing. Opening oneself up to HIV transmission is a small risk when compared to the urgent need for pleasure and social and sexual connection amidst the dire, unrelating regimes of targeted harm that constitute anti-Blackness. Bailey’s model offers a needed nuance to the reconsideration of risk and pleasure in online worlds. Opening yourself up to pleasure in the context of hook-up apps is another situation where connection and relation often outweigh the possibilities of risk and harm. Speaking in the genre of selfie popular on dating platforms, LaBeija’s #undetectable poster references these intimacies and also others beyond the MSM context, through the artist’s position as a queer woman, and her wider engagement with shared status kinship through the work she has made about her relationship with her mother.

Kane Race (2010a) has argued that attention to mixed status app use provides models for sensing the “affective climates” of particular online interfaces, which are co-produced by users through the sharing of serostatus within the design affordances interfaces provide for producing self-presentations. This work understands HIV status as one specific context in which the template or format comes to matter, as users engage with the terms and fields through which intimate publics share their status (or choose not to). Here we see users navigate platform affordances and constraints within a context that is both high stakes, and also utterly mundane. As queer digital studies work has shown, queer users exemplify how platform constraints are understood and worked on creatively from below (Duguay, et al., 2020). Users negotiate platform governance within relational, desiring, and pleasure-seeking contexts, against the backdrop of the wider surveillance and systemic abandonment to which HIV-positive users are often subject in everyday life.

Attention to PrEP in recent digital studies of HIV has been significant, including in this issue. Such a focus foregrounds the need to examine digital media in relation to biomedical regimes, technologies of bodily management, and the creep of surveillance cultures into everyday forms of technologically mediated life. It is clear from this rapidly growing body of work that PrEP has become a matter-of-concern in studies of social media, apps, and platform constraints. HIV-related biomedical regimes materialize broader concerns about app design, such as through the creation of apps meant to encourage drug adherence, or to monitor viral load, which must be assessed from a critical and feminist surveillance studies perspective in order to ensure the safety of users.

The concerns raised by HIV-related apps and in-app disclosures ought to extend to broader public dialogues about apps and surveillance and might help exemplify why publics should treat the creep of data regimes with urgency. One of the challenges of getting users to care about their imbrication in digital surveillance cultures is politicizing people who don’t immediately experience vulnerability in them. Convenience routinely outweighs risk all for those with privilege. Attention to digital surveillance practices in the context of HIV non-disclosure criminalization is an urgent and material example of why this issue matters, because it demonstrates how data gathered about anyone is actionable within larger regimes of bio-management.

Surveillance practices most predominantly affect Black and Indigenous people, and this is also true in the context of serostatus data (McClelland, 2019). HIV non-disclosure criminalization describes legal statutes that criminalize not telling a sex partner that you are HIV positive before having consensual sex, generally even if you use a condom or have an undetectable viral load that makes transmission impossible (Hoppe, 2017). Criminalization is highly geographically specific and limits this article’s applicability beyond a North American context. One of the first documented cases of HIV criminalization was that of Gregory Smith, a Black gay man incarcerated in New Jersey for burglary, who was later accused of biting a guard, and convicted to a 25-year sentence for attempted murder, aggravated assault, and “terroristic threats,” in 1989 (Royles, 2019). Smith’s case shows how the conditions for HIV criminalization are intimately tied to anti-Black racism in the context of growing mass incarceration and the AIDS crisis in the late 1980s (Geary, 2014; Esparza, 2019). A 2013 famous case of non-disclosure criminalization against Michael Johnson, a Black college student in Missouri, led to a 30-year-sentence, under a 1988 statute. The prosecution’s case relied on data culled from Johnson’s Grindr and Jack’d profiles (Schreiber, 2017). Alexander McClelland (2019) documents how HIV criminalization in Canada disproportionately affects Black and Indigenous people, and can lead to sentences that require subjects to alter or cease their use of social media. Black surveillance studies work on digital technologies can help us to understand these cases and their approach to social media and apps through the uneven distribution of vulnerability to datafied surveillance and its consequences (Browne, 2015; Benjamin, 2019; Noble, 2018). LaBeija’s dark sunglasses in #undetectable reminder the viewer both of this scene of surveillance, and of the possibilities of gazing back.

Virginia Eubanks (2018) argues that data justice issues are experienced first, and most profoundly, by those with limited economic opportunities who cannot easily withdraw from or mitigate the harm they experience. In other words, everyday digital surveillance measures are first tested on vulnerable populations and then expanded to everyone else. This warning ought to sensitize digital media scholars to what is going on in the world of HIV and digital platforms, within the treatment-as-prevention and non-disclosure criminalization era (Moldrem, this issue). Everyday disclosures on apps and platforms that provide some kind of service to users in exchange for extractive data practices will only become more harmful as they grow more attuned to information about the body in space. There are salient connections here to health monitoring apps, the gamification of insurance industries, menstrual tracking, genetic testing, even apps used to pay for parking or transit. The vernacular methods communities find for speaking back to or working around these constraints all become acute in the case of HIV, and model methods that communities develop to talk about and manage their imbrications in these systems.

Digital history

We are in a moment where many exciting comparative Internet histories are emerging (Medina, 2011; Duarte, 2017; Friedman, 2016). This work brings vital nuance to how we understand the ways digital communication practices have developed over the last five decades. Some of these projects foreground the contributions of minoritarian user groups to emergent digital cultures and the Internet’s early development (Nakamura, 2014; Friedman, 2016; Chan, 2014; Hicks, 2017) and some have even focused on early users living with HIV (Driscoll, 2014; McKinney, 2018; McKinney and Mulvin, 2019; Brewster and Ruberg, in this issue; Lubin and Vaccaro, in this issue). Reckoning with these entangled histories allows us to understand how information infrastructures emerge through differential exposure and variegated access to systems (McKinney and Mulvin, 2020). AIDS Internet history centers the perspectives that marginalized users bring to emergent digital infrastructures, and can in turn show other ways of understanding and possibly even remaking those infrastructures and systems over time. AIDS is, in other words, a crucial limit case for digital studies to think about modalities of emergence.

This section explores radical historical experiences of and responses to HIV/AIDS in the United States through digital media and digital methods, focusing on how digital records of AIDS activism in North America engage histories of critical care. Reframing what we know about HIV/AIDS through digital media places different people, groups, and technologies of response at the center of our Internet histories. Focusing on digital media can help to shift historical attention towards care and maintenance work, such as building and maintaining networks, circulating information, and keeping Web archives operational. Our aim in this section is to provide a methodological and theoretical framework for the study of AIDS history through digital media, focused on digital records of care and how researchers can care for digital records.

“AIDS has been devastating to so many people, has changed the lives of so many caregivers, it is great to have a way of sharing the burdens and of finding relief from the pressures,” Ben Gardiner posted in June 1995 on the AIDS Information Bulletin Board Service (AIDS Info BBS). Beginning in 1986 this board hosted AIDS information of all sorts, including mainstream news stories, the latest medical research, community-based periodicals, and message boards. This message from AIDS Info BBS founder and system operator is the first he preserved from the platform’s “Caregivers Mailing List.” Beginning in 1997 Gardiner anonymized and scraped 3,334 messages from this list in tandem with the Internet Archive.

The AIDS Info collection’s contents offer stories of care, “both the often bodily labours of providing what is necessary for the health, sustainment, and protection of someone or something, and the feeling of concern and attachment that provokes such acts” [28]. The collection testifies to the ways that AIDS activists built online networks in the 1980s and 1990s that were grounded in the provision and communication of care in digital environments, when that care was often otherwise absent from people’s lives. The epidemic has always been characterized by tremendous racialized and gendered deficiencies in available care and familial and institutional neglect of responsibility for those with HIV/AIDS who were ill, dying, or dead (Cvetkovich, 2003). The radical community-based provision of material and affective support to meet extreme needs under perilous emergency conditions enabled people living and dying with HIV/AIDS to maintain their dignity and quality of life in incurable times (Fink, 2020). Contributors to the Caregivers Mailing List used online bulletin boards to support other caregivers within this context, collaborating on early net practices that were invested in the medium’s capacity for grassroots organizing, affective exchange, and sharing ideas on niche topics.

Care lacks glamour, emphasizes interdependence, and fails to serve resolution imperatives. As such, care rarely gets its due in accounts of HIV/AIDS activism, or Internet history. In emergent work, Bailey (2019c) calls attention to how modes of care and caretaking within communities of Black cultural workers “were central to forging intimate bonds and enduring relationships and collectivities in the midst of a crisis.” Within efforts to maintain archives of digital media produced at messy and meaningful conjuncture of HIV/AIDS and the Internet, Bailey’s observation holds true: it is care that enables minoritized persons and their histories the capacity to endure and resist HIV/AIDS. Care and maintenance are vital not just to the survival of people, but of records that document their lives and work. In this issue, Morrison and Uhrich demonstrate how archivists’ care for and maintenance of digital archives reassembles scattered and incomplete AIDS records and histories in ways that are too often invisible to historians and other archival users. Through a video essay and statement culling records about Ryan White and HIV/AIDS in northern Indiana, they creatively push us to consider how we can adopt critical approaches to digital archiving to reimagine traditional processes of archival description that inform access and interpretation.

In its very survival, the digital records that constitute the Caregivers Mailing List are a manifestation of care through the activist archival labors of preservation and maintenance. In 2019, Dr. Avery Dame-Griff, founder of the Queer Digital History Project (QDHP), built a collection that holds together all 12,496 files, recovered from archived versions of the AIDS Info BBS Web site by the Internet Archive and converted to plain text (http://queerdigital.com/collections/show/5). Practicing in line with the core archival principles of provenance and original order, QDHP maintains the original folder hierarchy, while also describing and making more readily accessible AIDS Info’s message files and folders. Dame-Griff’s work exemplifies how digital archives and digital humanities methods are allowing scholars to do digital histories differently using digital sources, methods, and tools. This represents a significant transition in AIDS history methodologies, which have often relied on oral history interviews, or social movement records in community-based archives, and therefore emphasize what lasted in memory, or found its way onto paper and was “deemed” archival [29]. The digital records of AIDS Info BBS provide nuance and texture for how activists developed counter-knowledges about public health framings of HIV/AIDS, treatment options, and research ethics. Access to these records allows digital histories to explore early online dialog as a key form for citizen intervention in scientific and health discourse. Media activism using camcorders, posters, banners, and cable-access television figures prominently in AIDS history, and the field has its own established media theories that might be adapted toward incorporating digital media into the stories we tell about AIDS. There are far fewer works that address AIDS archives and digital media, with rare exceptions from Dame-Griff, Alexandra Juhasz (2015), Ioana Literat and Anne Balsamo (2014), and Brewster and Ruberg (in this issue). AIDS activists frequently utilized digital technologies in the 1980s and 1990s, as archives such as the Caregivers mailing list show, however, the digital has not been made central to theorizing and documenting this epidemic period. The relative newness of Web histories and methods points towards exciting future directions for research. As Brewster and Ruberg’s work on the SURVIVORS BBS group in this issue argues, queer approaches to Internet history are enriched through attention to digital AIDS activist records in their affective complexity, including concern for the preservation challenges they present.

There are many archival collections, particularly in LGBTQ community archives, that have preserved and made accessible records of AIDS Internet activism that could be readily incorporated into the ways we tell the history of AIDS in the United States and Canada. Often these born-digital records exist only in paper form. Activists and archivists have printed, preserved and made accessible copies of Web sites, e-mail messages, and online directories. We have each encountered such activist records in archives including the ONE National Gay and Lesbian Archives, New York Public Library, William Way Center, ArQuives: Canada’s LGBTQ2+ Archives, Visual AIDS’ Archive Project, and Lesbian Herstory Archives. It is possible that AIDS activist records present some of the more complete examples of minoritarian Internet archives available to researchers. For example, digging into the “Internet” and “Internet list and organizations” subject files at the ONE Archives, researchers can encounter printouts from Web sites and discussion threads. Queer archivist-activists had the sense to print these quotidian records because they felt rare in the context of the “symbolic annihilation” of minoritarian histories (Caswell, 2014; Caswell, et al., 2016). These records often contain dead URLs, but with digital archival tools such as the Internet Archives’ Wayback Machine we can call forth past Web presences and enliven them in the present.

Digital history methods that surface alternative stories about the Internet in emergence document how online networks provided HIV-effected communities with access to rare networks of support and information (Driscoll, 2014; McKinney, 2018; Brewster and Ruberg, and Morrison and Uhrich, in this issue). As Lubin and Vaccaro explore in this issue, AIDS activist histories that intersect with digital imaginaries can reveal alternative genealogies for technological histories and their affective resonances. As scholars working on Web archives methodologies and comparative Internet histories continue to develop connections between HIV and digital histories, the understandings of illness, care, and activist labor they develop will enrich and refine the field.

 

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Conclusion

By exposing a few of the myriad ways that HIV and AIDS and digital media have always been and continue to be palpably enmeshed, we assert that HIV/AIDS must be reconceptualized as at the very heart of a critical digital media studies. We have traced the genealogies of their overlapping and entangled histories from the early 1980s to the present. In addition, we demonstrate how and why HIV/AIDS is routinely omitted or absent from digital studies scholarship, and who and what we are losing by not interrogating their shared histories and concerns. We presented a series of frameworks and methods which can be used as a point of departure to begin to do the work of making HIV/AIDS and its attendant cultures the subject and site of digital media, data, and technology scholarship, teaching, and activism. This piece is the first step towards generating a lively and urgent dialogue between scholars, students, activists, and persons living with HIV/AIDS. It is an urgent imperative that we work to reclaim HIV in digital studies right now.

The ways HIV-positive people take digital media into their own hands to challenge conditions and structures that marginalize them must be at the center of this inquiry. The expertise these users bring to navigating digital infrastructures that can surveil and harm while also facilitating pleasure and connection provides models of management and response that publics need to insist upon to achieve more just digital tools and structures for our unfolding present. End of article

 

About the authors

Marika Cifor is an assistant professor in the Information School at the University of Washington.
E-mail: mcifor [at] uw [dot] edu

>

Cait McKinney is an assistant professor in the School Communication at Simon Fraser University.
E-mail: cait_mckinney [at] sfu [dot] ca

 

Notes

1. Crimp, 1987, p. 3.

2. Saalfield and Navarro, 1991, p. 363.

3. Juhasz, 1995, p. 3.

4. Goldberg, 2003, p. 22.

5. Hilderbrand, 2006, p. 303.

6. Peters, 2016, p. 94.

7. Ibid.

8. Royles, 2014, p. 8.

9. Royles, 2014, pp. 6–8.

10. Cheng, 2016, p. 73; Namaste, 2020.

11. Gould, 2009, p. 4.

12. Ibid.

13. Weiner, 2012, pp. 106–107.

14. Representations of AIDS are almost invariably only of the “crisis period” between the virus’ recognition in 1981 and the development of effective antiretroviral drugs in 1996. See Solomon (2017).

15. https://postervirus.tumblr.com/post/153564862177/kia-labeija-undetectable.

16. There are just two of many studies from the early 2000s based in this approach, chosen here because they were widely cited.

17. McClelland and Whitbread, 2016, pp. 84–85.

18. Watkins-Hayes, 2019, p. 180.

19. Stamm, 2018, p. 222.

20. Jordan-Zachary, 2917, p. 98.

21. Losh, 2019, p. 130.

22. Losh, 2019, pp. 61–62.

23. Losh, 2019, p. 3.

24. Ibid.

25. Kirby and Marsden, 2005, p. 89.

26. The U.S. Department of Health and Human Services, via HIV.gov, notes that HIV infection rates have plateaued since 2013 (rather than continuing to decrease) because treatment and prevention is not adequately reaching “those who could most benefit from them” including in “rural areas and in the South and among disproportionately affected populations like Blacks/African Americansa and Hispanics/Latinos.” https://www.hiv.gov/hiv-basics/overview/data-and-trends/statistics. Globally, the World Health Organization notes that in 2018 only 62 percent of people living with HIV were receiving antiretroviral treatment; https://www.who.int/hiv/data/en/.

27. Race, 2010a, p. 148.

28. Caswell and Cifor, 2016, p. 31.

29. Harris, 2012, p. 150.

 

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Editorial history

Received 2 February 2020; revised 24 July 2020; accepted 28 August 2020.


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Reclaiming HIV/AIDS in digital media studies
by Marika Cifor and Cait McKinney.
First Monday, Volume 25, Number 10 - 5 October 2020
https://journals.uic.edu/ojs/index.php/fm/article/download/10517/9728
doi: http://dx.doi.org/10.5210/fm.v25i10.10517