Marcia, Glenda, Juanita and Alex talk together about the definition of “careprovider.” Framegrab from We Care.

My dear friend, James Robert Lamb, discusses with me our shared video project about AIDS and survival. He died a few months later. Framegrab from Video Remains.


Jim Hubbard, director of United in Anger: a History of Act-Up, and David France in community conversation sponsored by Visual AIDS, 2013.

David France, director of How to Survive a Plague, at the Oscars.

Multi-generational conversation at our SCMS Unpanel brings together activist/artist/scholars: Marty Fink, Diego Costa, Roxanne Samer, and Ming-Yuen Ma.

We stand together beside a huge crotched pink triangle, made by Johnny Forever. Alexandra Juhasz with Marty Fink and David Oscar Harvey, at our illicit panel on the (in)visibility of HIV/AIDS at SCMS, Spring, 2013.

“Epidemics of Memory” was the title of Chris Castiglia and Chris Reed’s talk about these documentaries, given at the conference “The Thought of AIDS,” Brown University, April 5, 2013

Youth participants in HIV prevention group, MPowerment, held at AIDS Project Los Angeles in framegrab from Video Remains.

Jean Carlomusto and Gregg Bordowtiz look at image of AIDS video activist, Gregg Bordowitz, in Fast Trip Long Drop. Framegrab from Video Remains.

“Everything is Coming up Undetectable” by the Visual AIDS Staff for “Undetectable,” the Visual AIDS Summer 2012 Show.

“Living with AIDS, Women and AIDS,” (Juhasz and Carlomusto, 1987) for GMHC’s cable access program. Framegrab of early AIDS activist and safer sex educator, Denise Ribble, demonstrating how to use a dental dam.

Juanita Mohammed self portrait for WAVE: Self Portraits (WAVE, 1989).



Acts of signification-survival

by Alexandra Juhasz

I have been making, writing about, and organizing with AIDS activist media since the mid-1980s. At that time, I was an AIDS activist videomaker, a sometimes member of ACT UP/NY, and a graduate student in Cinema Studies at New York University. My doctoral work focused on the representation of AIDS in the media, and eventually in 1991 it became the book AIDS TV.[1] [open endnotes in new window] Within that project, I also focused upon my own activist video project where I worked collaboratively with the Women’s AIDS Video Enterprise (WAVE), to make together and then self-distribute the video called We Care: A Video for Care Providers of People Affected by AIDS.[2] Since then, I have continued this activist/academic commitment with more recent video and writing attending to mourning and nostalgia for this earlier activist movement in the United States and to the many people we lost, as well as considering how today’s gross shortfall of people, action, and representation has hindered contemporary activism in the United States.[3] My most recent work about HIV/AIDS has been at once commemorative (in that ACT UP marked its 25 year anniversary and this brought about much programming about our history),[4] and also proactive as I work to discuss, organize around, and produce media and scholarship that can be useful for contemporary HIV/AIDS activism, an area of cultural politics that is largely dormant within a U.S. context.[5]

Following this more proactive vein, about a year ago I had agreed to write a commentary for David Oscar Harvey’s proposed workshop on the (in)visibility of AIDS to be held at the Society for Cinema and Media Studies’ yearly meetings. I proposed to give a talk that would focus upon the spate of documentaries (a veritable flood, even a kind of visibility epidemic) recently circulating about the self-same AIDS activism of yore, just described above, in which I had played an active part. This new body of documentary work, primarily focusing upon the history of AIDS and AIDS activism, was also largely produced by AIDS media activists of my generation, many of whom had been my colleagues and friends since AIDS first demanded activist media attention. These amazing and important films include:

  • United in Anger (Jim Hubbard, 2013),
  • How to Survive a Plague (David France, 2012),
  • Vito (Jeffrey Schwarz, 2011),
  • We Were Here (David Weissman and Bill Weber, 2010),
  • Sex in an Epidemic (Jean Carlomusto, 2010), and
  • Derek (Isaac Julien, 2009)

I had strong feelings about my cohort’s deluge of documented recollections. Furthermore, I already had in place a carefully built conceptual scaffolding connecting AIDS, documentary, memory, and activism upon which to map my affect: the body of writing, video, friends and colleagues deeply concerned with nostalgia, pathos, and contemporary art that I have already mentioned. For example, in a piece on AIDS video and censorship published here, in Jump Cut, in 2010, I wrote:

“I set my stage—enraged, a bit timid, but forced to dance—with love, celebration, anger and mourning for the art and artists that were silenced by censors and/or death. And hence, I enact what we most defiantly know about AIDS art and activism: we may not always have the power of institutions or government or funders on our side (although we often do, more on this later), but we carry the influence of cultural capital, the truth of our experience, and the righteousness of our analysis. I may not be a government institution to be fawned to, and I may not be a child to be protected, but I am a scholar, and an activist, and I learned, through AIDS activism and art, the power of my voice when raised with others who see the world and AIDS as do I. So, here I will speak about the history of AIDS video in a new way, and with thanks to the censor, by telling it as a history of strategic acts against her.”[6]

And more recently, I expressed these two points on Visual AIDS[7] about contemporary media activism in 2013:

“1) It has been remarkable, astounding, and inspiring to see so many of my past contemporaries engaging in their own public, mourning, angry memorials of the early history of AIDS in the US: Vito, How to Survive a Plague, United in Anger, Sex in an Epidemic, We Were Here.

“2) And yet silences about AIDS also persist: in mainstream culture, in queer culture, between generations, in hard hit communities of color and poor people.

“In both cases, my biggest concern is that both AIDS and AIDS activism are understood as things of the past; as if AIDS is not of the present. We also have lost the sense of power (in the face of hopelessness or death) from that earlier period: the felt belief that our activities and activism matter to AIDS, and each other: that our actions could change AIDS and ourselves, not privately, but socially and communally.”

These recent documentaries that I discussed with Visual AIDS, and had also committed to consider for the panel, are relatively traditional media objects—if individually quite distinct and varied—that play in long-form and were first slated for old-media distribution tactics like film festivals and cable broadcast. They look at this history to tell some of its many different stories, for a variety of purposes, and with a range of documentary forms. For example, United in Anger is a collectively-voiced testament to activism from inside-out, often focusing upon the voices of women and people of color within ACT UP/NY. We Were Here is a sentimental and deeply moving story of community suffering and action in San Francisco in the early years of the AIDS crisis. Voices from the Front is an invigorating history of the organizing project of one affinity group inside of ACT UP/NY whose main focus was treatment action. It is relayed in a standard and successful Eyes on the Prize format. And Sex in an Epidemic is a personal and political essay from a movement-insider that analyzes the complexity of re-naming, representing and sharing, and thus hopefully changing something as core as any individual’s sexual practices and their meanings.

Each of these documentary projects took years to fund, and they are beautiful films made by filmmakers with lengthy careers, who are collaborating with skilled crafts-people, and are distributing their work within the context of rich histories of connections, networks, and communities. One was even nominated for an Oscar!

However, as I began to write the conference paper, two unexpected things occurred: the rejection of our panel (so that I need not write the talk after all), and my acute awareness that a great deal had already been written about these documentaries, albeit online, and not necessarily in academic contexts (so that I need not write the talk after all).[8] I myself had already blogged about each of these documentaries as they came out.[9] And more importantly so had many other members of my micro-community,[10] not to mention people well outside of it, given the high profile of some of these movies.[11] By the time, even later, that I began to write my portion of this larger essay for Jump Cut, the AIDS activist and media-related digi-verse had all but fully digested these films. A sophisticated, speedy conversation fully covered the many issues and analyses raised by and between the documentaries.[12]

Given this long and deep list of digital voices and forums where these documentaries were analyzed online—and thereby also spread to others—I began to want to consider something beyond the documentaries themselves. In particular, I was inspired to consider the changes of scale and temporality that the digital brings to HIV/AIDS representation, as well as what then might be our linked activist responsibilities. This matter of an ever-changing time and space of AIDS is also the focus of Bishnu Gosh’s effort in our shared project here, and what Julian Gill-Peterson names as “the adjustment to an endemic temporality of HIV/ADS.”[13] Furthermore, I wanted to consider how the fact that HIV/AIDS representation and its criticism now occur and spread quickly online, raises linked questions of writing forms and audiences. It is my belief that Internet writing as activism—just like media making—needs its own responsive vernaculars and tactics to be most effective.[14] Take this scholarly/activist essay here. Because it sits online and is going to be read by a diverse audience of students, scholars, activists, and artists from around the world,[15] my voice and style must alter to best reach my intended audience: HIV/AIDS scholar/activists interested in the relations between HIV/AIDS and its varied pasts and presents. I also want to reach those interested in the multiple experiences and communities of HIV/AIDS and their linked and local projects of signification, and how this knowledge impacts their own, on-the-ground needs and acts.

It will be just these contradictory states of digital AIDS signification that I focus upon for the remainder of this article, digitally: paradoxes in and between forms and media, users and their activism, and the politics of AIDS representation—that alters in relation to unique, specific, contextual, and changing conditions of silence and voice, visibility and censorship. In an essay published in Jump Cut in 2010, “To Dream and Dance with the Censor,”[16] I argued that this very dialectic of silencing and speaking has defined the entire twenty-five year-plus AIDS activist video project across its changing history. In this current case—one where silencing occurs within a sea of abundant memory—the fruits of the digital, connected to other current circumstances, have again altered this recurring and generative dynamic. By adding even more layers to this dialectic, which I have previously called the “AIDS censorship dance,” representational practices and their criticism change. They do so in order to balance new strains: historical tensions between now and then, young and old; political problematics of invisibility and discernibility—given HIV’s un-detectability for many people taking medication; regional and national differences within the pandemic and its politics, given that the trajectory of HIV/AIDS and its visibility is different in the United States than it is in other regions of the world, and then again, often different between communities within the United States.[17]

Of course, one digital response to representing these new dialectics occurs in the multi-authored format of this online contribution to Jump Cut. Each author looks closely at one part of the multifaceted dialectics I just mapped for this global and historical crisis. The four approaches reverberate and produce a more complex vision. My contribution focuses upon contemporary U.S. documentaries about primarily NY-based AIDS activist history from the position of one of these still-engaged and also historical players. My voice is necessarily autobiographical. My style is decidedly informal (a choice I have made in relation to this writing’s home on the Internet, and the audience I hope to speak to, see above). My political project is to share this history with interested outsiders, and to learn from their histories and practices. I want to contribute to a re-activation of American AIDS representational politics that can mourn and yet also be present and future focused, and that wisely uses the digital towards these ends, and in conversation with other movements.

While the earlier visibility progressions for AIDS video activism that I had named in the censorship article were organized around repetitive passages that moved from silence to activist representation to censorship to more representation, it is my belief that digital media brings in new concerns and different cycles. For one, in regards to the documentaries under consideration, the digital allows for what might seem an over-abundance of digital discourse and debate about what also can be perceived as a torrent of images and discourse that have as their subject our past fights for visibility. This produces a particularly clumsy incongruity: these many instances of visibility (the docs and their digital discussion) sit precariously near the constant specter of a diminishment of perceptibility. This is the main concern of David Oscar Harvey’s essay in this publication: In places where people have access to high quality health care and medication, the contemporary experience of HIV/AIDS is often organized by a waning of detection and legibility. This is then linked to a diminishing of AIDS activism and representation because of a post-AIDS sensibility that is pervasive but not useful for the many people living with (undetectable) HIV.

In these particular conditions, we find quite awkwardly that we encounter new kinds of concealment in the face of new kinds of visibility! Thus, in this contribution to our larger project, I attend not just to the constant fact of HIV/AIDS (in)visibility across the history of this pandemic, and related demands for voice, but the changing frameworks for necessary acts (up). Given that our four collected essays are about the political efficacy of representation in relation to an always-changing HIV/AIDS crisis, and ever-mutating representational norms, tools, and media, one of the key concerns this problematic raises for me is the changing politics of representation given the unique affordances of the digital.

While I have weathered and produced media and criticism out of the contradictions between speaking and silencing many times across my twenty-plus years history within the movement, it is the particularity of digital signification-survival[18] that is my focus for the remainder of this essay. In 2012-13, the definitive survival cycle—in and out of visibility—occurred in great volumes via social networks and digital platforms leading me to ask: “Who over-speaks and who under-shares online? And what is too-much-seen at the costs of whose (in)visibility?” The very visibility of these documentaries pressed for me against the ways that “Living with AIDS”[19] has become once again (if differently) hard to see or show or share. And then, this invisibility sits awkwardly against an access to representation that has never been more immediate, at least for those who have access to the Internet. This immediacy is manifested by this digital essay, the Tumblr that was produced as a consequence of our rejected panel (so that we were (self)represented even though we were silenced) and about which I will end this article, and the very many links to contemporary digital AIDS media included in this online essay as a whole.

When I write here that I need not attend to analyzing contemporary documentaries about AIDS, I am instead asking us all to consider what our function is then as critics, artists, and activists, given a digital culture where our shared project has quickly expanded due to people’s much more ready access to media production, distribution, and analysis. The digital-of-now can herald, for some activist and artist communities, a never anticipated condition of hyper-visibility, manic-analysis, and too-much-memory; of archives that are found not to save but rather to disgorge their undigested over-holdings; and of archivists like me who say never-mind. If silence equaled death in the past because the powers that be—including our own humility, shame, fear, and lassitude, as well as lack of access to resources, media, and networks—quieted us, who ever imagined instead the reverse, a media landscape with all this racket (including this clamor here. Really, how many words can be written by myself and others[20] about writing about the over-representations of AIDS?)[21] Could a better function for the activist critic be to distil some focus and quiet out of the mayhem, as well as then to mark this, and other effective tactics for the digital?

How did these past-focused documentaries garner their high level of visibility? Certainly, stories about AIDS’ past might seem less threatening to a “general public” than depictions of its notably contradictory present state. And each of the documentary retellings that I am considering started their stories strongly positioned within old-media (festivals, broadcast, using established distributors), only then from there garnering much more digital discourse. This sort of convergence that effectively links one media object across many platforms is a winning visibility strategy of our times. That is, activist digital media makers must not only produce material but also market it, connect it to activist and other communities, participate in a project of social media sharing, and finally offer their work and its linked conversation in an array of digital and traditional venues as part of an effective distribution campaign. Again, it may not come as much of a surprise that it is my generation—media activist professionals who began working at AIDS’ beginning, and who are now at perhaps the peak of our middle-age prowess—who have easiest access to produce, fan, and inspire this level of attention and visibility. We remind me of the powerful gay white men who I first encountered at ACT UP those many years ago: a class of people with incredible access to culture and capital. In other forums, for instance in my interview with the ACT UP oral history project,[22] or my book AIDS TV (where I write about my own activist video project working with low-income, urban, women of color to make community-specific AIDS educational materials),[23] I have reflected upon the immense cultural privilege of many members of the early community of U.S. AIDS activists: people who ran newspapers and museums or knew those who did, men, and sometimes women, who had trust funds. What an eye opener it was and continues to be to do activist work with people with privilege! To be sure, things happen faster and bigger with capital.

At that time and since, in my writing and media work I have been keen on benefiting from the resources of those within the AIDS activist community with privilege, myself included, while also remembering and working alongside those people with stories and experiences of HIV/AIDS with less entrée. This was the subject of my doctoral research, the sections of my avant-garde documentary, Video Remains (2005) that focus upon gay kids of color at the youth group, MPowerment run by AIDS Project Los Angeles, and my recent piece of scholarship, “Forgetting ACT UP,” where I interview members of my AIDS activist video community in New York City in the 1980s who didn’t participate in ACT UP. I try to explain both the work that occurred outside this place of perceived privilege, and some of the reasons that activists made this choice:

“Alex, I'm glad that you are documenting the good work of ACT UP. I couldn't join ACT UP because I was undocumented and could not afford to get arrested and potentially deported. Good luck with your article. I'd love to read it.”
—Personal email, June 2011, from Azadeh Khalili, 1980s employee of AIDS Discrimination Unitof the New York City Commission on Human Rights [NYCCHR]

My friend, collaborator and longtime AIDS video activist, Juanita Mohammed also wrote for this article:

“I guess I never became a member of ACTUP because I saw myself as other than the members. For the most part they were educated, White, gay men who talked in a high-fallutin’ manner. Whenever I gathered up the nerves to engage ACT UP about becoming a member or getting involved in activities other than attending a rally or march, they seemed aloof, I did not feel welcomed. I had friends who belonged to ACT UP but not one ever invited me to join.”[25]

Juanita understands herself as an AIDS activist videomaker of my generation who speaks from a disenfranchised position that will ever include the young, the poor, women, sex workers, people in the global south, trans people, and others whom the media, culture, and sometimes even “activism” pushes to its margins. In her part of our collaborative essays here, Marty Fink focuses on contemporary HIV/AIDS media, raising issues of access barriers to media participation and suggesting disability activism as a point of contact with HIV/AIDS histories and present representational interventions. What kind of visibility is currently afforded to members of the HIV/AIDS community with the least resources? Has the digital changed this condition as well? Given that some suffer or others benefit from digital abundance, I might ask what fuels today’s nostalgia for (in)visibility? And who is not heard even so?

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