The ACT UP Oral History Project memorializes activists online.

Corpus Magazine’s final cover, featuring transnational queer representation.

A still of Jackie from the It Gets Fatter project as she defiantly eats for the camera.

Stills from Conrad’s Things are Different Now (2012).

A screen grab of the homepage of Shaun August’s Tender//Tough Tumblr site.

People Have Aids. Edition of 20 white t-shirts: Live With Animals Gallery, NY 2011. From http://jasonfritzmichael.com/.



Two ghost stories:
disability activism and HIV/AIDS

by Marty Fink

Critical disability studies and its activist counterpart in digital media invite the telling of a new ghost story about HIV/AIDS because new media offer new ways for youth to talk about bodies. It is not a new story that AIDS activism invigorated the potential of cultural production to serve as a form of illness prevention. This is a story we have told and continue to tell. Archives of its telling remain in various digital spaces from the ACT UP Oral History Project, an intimate digital collection of reflective interviews and critiques, to Corpus’ showcasing of queer art and literature by racialized subjects reclaiming and “re-gaying” representations of HIV. The recent digitization of the Marlon Riggs Archives, the David Wojnarowicz Papers and Outweek Magazine all allow a retrospective exploration of queer artists, filmmakers, and writers documenting government neglect, community formation, and even death within the AIDS activist movement.

A still from Marlon Riggs’ seminal Tongues Untied. An early cover of Outweek Magazine, now available digitally through the archive.

In this ghost story of HIV/AIDS’ initial encounters with artists, the legacy of our heroes remains for new generations to inherit, reinterpret, and extend. But as we absorb these histories we also seem to reflect less about what HIV/AIDS means in 2013 for those who are not ghosts: how does this history connect to novel and transgressive ways of showcasing the stories of queer bodies in the present?

Queer youth are talking about their bodies across a host of emerging digital blogging platforms. Cross-media sites from the It Gets Fatter Project to If I Can’t Dance is it Still My Revolution and the Femme Gimp academic porn site, challenge us to view disability not as an ailment in need of intervention but as impetus to countering neoliberalisms that deny life chances and media representation to bodies marked as unhealthy, disabled, racialized, and gender nonconforming and queer. From the disabled community pornography of Erickson to the transgressive eating celebrated in the autobiographies of It Gets Fatter contributors, digital media draws on media representation to build collective momentum and activist community engagement.

Radical disability art by A.J. Withers from the digital blog and zine.

A still from Erickson’s Want (2006), available as part of a digital smutty photoseries on her website.

Contemporary digital sites including AIDS Action Now’s Poster/Virus series — whose street campaigns and online presence demand the decriminalization of HIV-positive sex, sex work, and advocate for decarceration practices more broadly — exist online alongside projects like Visual AIDS, which links a proliferation of HIV/AIDS exhibits and curatorial work to online distribution and activist communities, “preserving a legacy, because AIDS is not over” (visualaids.org, 2013). As such work demonstrates, new media in general and the personal blog in particular is especially useful in simultaneously describing the mundane daily autobiographical and broader systemic cultural experiences of being disabled and queer. Through a digital network of re-blogs, collaborations, conversations, and hyperlinks, these individual accounts create a constellation of representational and resistent cultures for building disabled community and for changing how we understand what it currently means to be HIV positive.

Posters from the Poster/Virus series by Allyson Mitchell and Jessica Whitbread, Jessica MacCormack, and Kent Monkman, as showcased on Tumblr.

As was true for early AIDS activism and its studies, disability studies frames disabilities as socially mediated and medicalized conditions that obscure social critique by limiting the discussion of suffering and treatment as resting with the individual rather than with larger systems and institutions to which individuals belong and in which their embodied experiences gain meaning. In shifting focus away from curing individual bodies to instead creating new wide-ranging forms of access—from wheelchair-accessible architecture to affordable public transportation to ending deportation practices criminalizing racialized bodies as illegal—conceptualizations of access as wide-ranging and multi-issue reframe disabled bodies as valuable and transgressive sites for change and critique.

Robert McRuer’s work[1] [open endnotes in new window] accordingly provides a conceptual frame to integrate contemporary HIV/AIDS activism and disability activism as these movements converge on and offline. This work draws parallels between disability activism and the history of HIV/AIDS activism that succeeded in moving discussions of the pandemic away from individual victimization and stigma and toward the need for collective action. This model shifted discussions of the pandemic to render HIV/AIDS as a representational and social crisis that could not be cured with a vaccination or pill but continues to necessitate a global restructuring of resource distribution. As such, one story of HIV/AIDS is of disability activism, as HIV positive bodies gain agency as valuable sites of collective resistance. Living as HIV positive still means fighting systems of criminalization, health care restriction, anti-queer violence, and disableism on a daily basis.

McRuer also points to the digital archiving of the NAMES quilt as a means to (re)read it as an emblem of disability history. The quilt project, for which individual contributors create panels to commemorate loved ones who died of AIDS, presents an enormous mosaic for display to bring the mass scale of death and mourning to public attention. In tracing the parallel histories of the quilt’s construction and the passing of the Americans with Disabilities act in 1990, McRuer argues that

“because the function of the quilt continues to shift, however, it is even more likely that uses of it in the future will connect it to disability issues, concerns, and histories” (56).

The quilt’s digitization therefore symbolizes the plethora of new meanings it simultaneously acquires as we change our cultural, medical, representational, and technological understandings of HIV/AIDS. McRuer points to contradictions inherent within the quilt itself, criticisms ranging from its underrepresentation of racialized participants to its focus on dying and loss. A further contradiction this artifact raises is the tension between the quilt’s taking up of space and the lost bodies that remind us that HIV/AIDS now means something different than it did during at the inaugural moments of the quilt’s construction. For youth these meanings are themselves constitutive of loss. Youth must grapple with a sense of not knowing what it means to experience this type of loss that we have inherited. We must somehow express what it means to not have known the bodies of all the mentors, heroes, and legends we have missed.

Ryan Conrad’s Things are Different Now (2012), addresses this yearning for ghosts by autobiographically lamenting the incomprehensibility of losing all one’s friends to government neglect and homophobia. Using the video aesthetics popularized in the 1980s by movements like AIDS activism, Conrad beautifully superimposes a set of portraits of his friends against a background of archival protests and political funeral video coverage from early 90’s ACT UP/New York demonstrations. Conrad’s work powerfully raises questions of lineage by literally joining the past and present together through artistic and mediated images that haunt and fade back into history. This film also points to important representational considerations about documenting the queer histories of the pandemic. For instance, Conrad’s featuring of his predominately white set of “faggot” friends raises criticisms of ACT UP for maintaining a predominantly white membership. The accessibility of this archival video footage featuring a white majority of cisgendered (i.e., those who are not transgender in that their gender identities correspond with those they were assigned at birth) subjects creates a consequential invisibility of other histories and ghosts. While some of the portraits in the film feature trans women, this aspect of their identities is not captioned or mentioned by the narrating voiceover. Thus this video points to the ongoing need to dig for the ghosted histories that prove more difficult to find—the de-centered histories of trans resistance, women’s activism, and queer of color survival that continue to exist against dominant modes of remembering.

Further, as the ghosts of HIV/AIDS become more illusive and stay immaterial, the new technologies that emerge for building archives to house them change the way we not only think about disability and activism but also how we conceive of the place of HIV/AIDS within contemporary publics and places. McRuer observes how

“the quilt insists on bringing HIV/AIDS to public, even national, space. This infiltration of public space by those whose bodies, abilities, and impairments have been marginalized, trivialized, or ignored is without question indebted to a certain defiant disability consciousness” (58).

Extending on McRuer’s analysis thus prompts a consideration of what happens when such representations move beyond national spaces to reconfigure the reach of healthcare access, transnational embodiment, and illness itself.

To comprehend the transnational representational possibilities for re-conceptualizing contemporary HIV/AIDS, we can also look to digital disability cultures circulating online. For instance, personal Tumblr blogs like Shaun August’s tender//tough ask questions about how to cope with daily struggles with disability, racism, and survival. Through a collection of narratives, “selfie” photos, animated GIFS, and poetry, this Tumblr blog asks its followers to consider struggles with gender dysphoria and depression against a diasporic landscape that crosscuts with popular and digital culture. For instance, one entry dated April 9, 2013 shares:

“for about 30 seconds this morning i thought that my grandmother was casually telling me that rihanna was my cousin

just turns out i have a barbadian cousin named rihanna who is not Rihanna and grandma doesnt know who rihrih is and could not understand why i was almost kind of crying”

Like the constellation of others who comment on and follow it, this Tumblr blog showcases how new media facilitates a transnational engagement between queer and trans subjects who move through spaces that are unfixed and diasporic. The posts inspire both the need to start new conversations about bodies, as well as the conversations themselves, flagging the importance of narrating everything from housemate-coping strategies and queer office fashion to

“tips for not losing your shit working 45 hours a week entirely with white people so that you can save enough money to fly to florida and leave some body parts behind.”

Seeking inspiration from this and other disability Tumblr forums opens up novel representational possibilities for attempting to locate new media as a useful place to broaden conversations about illness and access and to begin to link these transgressive media to new public conversations about illness and about HIV/AIDS.

The online distribution of queer cultural productions also draws attention to the gap between making art about HIV/AIDS and enacting activism online or otherwise. Tumblr users often reblog an image of Jason Fritz Michael’s People Have AIDS shirts, which explicitly calls attention to this disconnect between representation and action. As a self-referential form of media which calls attention to its own trends, hypocrisies, and limits, this image enters conversation with disability representation and activism online to both push against and acknowledge the rift between a powerful moment of art and activism in the late 80s/early 90s and a growing sense of alienation from these movements as discussions of the pandemic are silenced by contemporary culture.

If the project of early HIV/AIDS activism was to bring the realities of living with HIV/AIDS to national attention, then the contemporary project is to bring national attention to spaces that are collectively overlooked, including the marginalization of the histories and present experiences of queer and trans people of color within and beyond the Internet. These spaces—which include prisons, immigration detention centers, borderlands, and other militarized zones—also criminalize bodies that are HIV positive. Recognizing these spaces and their connections to disability activism necessitates an intervention into such structures in order to integrate HIV/AIDS of the digital present with the activist media of the past. New media not only changes the way we encounter these pasts and presents, but it also constructs novel ways of narrating the body and its encounters with criminalization and disability. As Withers attests:

“Disabled people have fought back. We have locked down. We have occupied. We have marched. We have organized. We have won battles. And we can keep fighting until we get what we need.”[2]

Go to Notes page

Introduction: Ghost stories by David Oscar Harvey, Marty Fink, Alexandra Juhasz, Bishnu Gosh

Ghosts caught in our throat — of the lack of contemporary representations of gay/bisexual men and HIV by David Oscar Harvey

Two ghost stories: disability activism and HIV/AIDS by Marty Fink

Acts of signification-survival by Alexandra Juhasz

What time is it here? by Bishnupriya Ghosh

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