The Scholar and Feminist Online
Published by The Barnard Center for Research on Women

Issue 2.1 - Public Sentiments - Summer 2003

AIDS Activism and the Oral History Archive
by Ann Cvetkovich

Lesbian Feelings in a Global Context

When discussing the oral history interviews I conducted with AIDS activists, I always feel compelled to admit up front that I am not trained as an oral historian. I am a literary and cultural critic who was drawn to oral history because, when my research on trauma inevitably led me to the genre of testimony, I was so curious about its dynamics that I felt compelled to have the practical experience of doing interviews myself. In my book An Archive of Feelings: Trauma, Sexuality, and Lesbian Public Cultures, I explore most of my topics (which include incest, butch-femme sexuality, migration, and archives) through cultural artifacts such as literature, film and video, performance, and memoir. For a chapter on AIDS activism, however, I conducted interviews with lesbians involved with ACT UP/NY (AIDS Coalition to Unleash Power), the direct action group formed in 1987 that combined civil disobedience with new styles of cultural and media activism. Activism often remains ephemeral and under-documented, and since I was especially interested in the emotional dynamics of activism in order to explore how it constitutes a response to trauma, I found oral history a useful tool. It was also my hunch that oral history could be a way of extending the work of activism by creating a collective memory that persists even after a movement ends.

I feel humble not only about my status as a relative newcomer to oral history, but also in the face of the geopolitical context established by my co-panelists at the February 2001 session at Barnard College on "Memory, Trauma, History, Action" - Marianne Hirsch, Saidiya Hartman, and Nieves Ayress.[1] What does it mean to think about lesbian participation in AIDS activism in New York alongside slavery, the Holocaust, political violence in Chile, and 9/11? Addressing this question has, in fact, been central to my book, which makes a case for why lesbian feelings and experiences might matter in a global and transnational context, without presuming to equate them with other instances of geopolitical trauma and without necessarily presuming them to be traumatic at all since, in many cases, including my investigation of activism, I was looking at the widespread effects of trauma on those in its vicinity, not at trauma survivors themselves. I have, however, had to grapple with the ways sexual trauma and queer trauma can be relegated to invisibility by distinctions between private and public trauma, often a gendered distinction, and by structures of homophobia. Yet as a national and transnational category, trauma actually provides a point of intersection between our everyday feelings and systems of violence, oppression, and exploitation, and the historical record also makes clear that public recognition of collective forms of trauma has always required cultural and political struggle.

For example, it was a considerable task to acknowledge that AIDS produced losses so widespread and so staggering in the U.S. that it should be understood as part of a lineage of national trauma that includes the founding violences of slavery and genocide, or the impact of the Vietnam War. As we move into a third decade of the pandemic, it is clear that AIDS is a problem of global proportions with multiple connections to other sites of trauma. The most vital forms of AIDS activism are now transnational, and the legacy of ACT UP continues in the work of transnational coalitions of AIDS activists at the International AIDS conference in Durban in 2000 and the United Nations Special Session on HIV/AIDS in 2001; indeed, South African AIDS activists, building on the foundation provided by anti- and post-apartheid political infrastructures, have been very prominent in this international arena. (For information about global AIDS activism, see the websites of Health GAP (Global Access Project) and South Africa's Treatment Action Campaign.) There are, then, inevitably going to be points of intersection between my geopolitical sites of experience and those of the other plenary session speakers, and I hope to suggest here how the lessons of sexual politics and AIDS activism, as documented through oral history, might be useful in other contexts.

Mourning and Militancy Revisited

My oral history project was inspired by the conviction that it is important to remember activism in order to plan for the future, and I was concerned by how quickly the record of AIDS activism was being lost only a decade later, despite an impressive amount of documentation left by the rich forms of cultural activism that have been central to ACT UP. If the AIDS activist movement that I had been a part of could be so ephemeral, I wondered what I didn't know about previous generations of activism. How might the effects of activism continue even when more visible movements end? Oral history made it possible to address this question, since I could ask AIDS activists about how their lives had continued to be affected even after their involvement with ACT UP in order to trace the ongoing legacy of their activism.

As a vivid example of how trauma can be addressed by collective and public cultural formations, activism also contributed to my larger project of developing approaches to trauma that don't medicalize or pathologize it. My efforts to wrest authority over trauma discourses away from clinical psychology have been partly informed by the example of the history of sexuality. No longer considered a disease to be cured, homosexuality and other non-normative sexualities have been resituated as a resource for the construction of cultures and publics. Similarly, the experience of trauma, rather than marking people as abnormal, can be understood as a foundation for the construction of new identities and communities.

As part of my aim of showing how queer approaches to loss and trauma are instructive for thinking about trauma more generally, I want to focus on how queer or gay and lesbian responses to the AIDS crisis have transformed practices of mourning and brought them within the orbit of activism, and I want to suggest the implications of this nexus of mourning and militancy for oral histories of activism. One of the hardships faced by gay men in the 1980s was the lack of public attention to the deaths and losses of AIDS because of the homophobic dismissal of those who were not seen as innocent or average citizens. Traditional forms of mourning were often denied, compounding the trauma of loss, or funerals kept the dead closeted, erasing the grief of lovers and friends. Yet, gay communities also reinvented rituals of mourning, producing new forms of public funerals that incorporated sexuality and camp. Public funerals have also provided occasions for merging activism with mourning as evident in the following remarks by David Wojnarowicz, the visual artist who died in 1992:

I worry that friends will slowly become professional pallbearers, waiting for each death, of their lovers, friends and neighbors, and polishing their funeral speeches; perfecting their rituals of death rather than a relatively simple ritual of life such as screaming in the streets. I worry because of the urgency of the situation, because of seeing death coming in from the edges of abstraction where those with the luxury of time have cast it. I imagine what it would be like if friends had a demonstration each time a lover or a friend or a stranger died of AIDS. I imagine what it would be like if, each time a lover, friend or stranger died of this disease, their friends, lovers or neighbors would take the dead body and drive with it in a car a hundred miles an hour to washington d.c. and blast through the gates of the white house and come to a screeching halt before the entrance and dump their lifeless form on the front steps. It would be comforting to see those friends, neighbors, lovers and strangers mark time and place and history in such a public way. (122)

Wojnarowicz insists on the need to go public with feelings and to turn mourning into militancy. And in fact his vision was realized in a number of public funerals sponsored by AIDS activists, including the 1992 Ashes Action in which ACT UP marched to Washington and threw the ashes of loved ones onto the grounds of the White House. (DIVA-TV's Ashes Action 1992 [1996], a video about this demonstration, is available in the Royal S. Marks AIDS Activist Video Collection at the New York Public Library.)

Writing in the midst of the AIDS crisis in 1989, AIDS activist and cultural critic Douglas Crimp raised an additional problem about the nexus of mourning and militancy, suggesting that militancy might actually displace and suppress mourning, warding off the intransigence of loss by offering a vision of social change:

Frustration, anger, rage, and outrage, anxiety, fear, and terror, shame and guilt, sadness and despair - it is not surprising that we feel these things; what is surprising is that we often don't. For those who feel only a deadening numbness or constant depression, militant rage may well be unimaginable, as again it might be for those who are paralyzed with fear, filled with remorse, or overcome with guilt. To decry these responses - our own form of moralism - is to deny the extent of the violence we have all endured. ("Mourning and Militancy," 16)

Crimp's comments offer an important reminder of the limits of activism for addressing trauma and of the complexity of psychic responses to trauma. They have become even more relevant over time, as former AIDS activists reflect on their past.[2] I was especially inspired in my project by the comments of Jean Carlomusto in Gregg Bordowitz's video, Fast Trip, Long Drop (1993), in which Bordowitz explores his developing resistance to being the positive image of the HIV+ person surviving and thriving with AIDS. Carlomusto mentions that the footage of those who were activists has now become a site of mourning because so many people depicted in them are dead. This comment became the inspiration for my desire to understand how people might remember activism after the fact and how mourning might complicate both activism and memories of it. In exploring this emotionally fraught terrain with those I was interviewing, I was also alert to the possible limits of oral history and testimony for capturing emotional experience.

Activist Grief [3]

I'd like to focus on what some of the interviews I conducted reveal about how activists grapple with the challenges of mourning, a process that continues to preoccupy them long after, and in some cases especially after, their involvement with a political movement. Overall, the interviews lend confirmation to Douglas Crimp's warning that activism can suppress mourning, and they suggest that one of the aftermaths of activism for many people was the need to find a space for mourning that had not been available in the midst of activism. Indeed, one important value of oral history projects is that they can provide a public space for this emotional work at a time when the collectivity of activism may have faded and people are more isolated. My goal was to use the tools of oral history to create a public culture that would make visible the collective and shared dimensions of individual experiences that might otherwise seem idiosyncratic or abnormal or contrary to political action.

For example, Douglas Crimp's comments about how militancy can prevent mourning are relevant to Marion Banzhaf's account of how she responded to repeated experiences of loss. Banzhaf characterizes mourning as a protracted and belated process when talking about what happened once she left her work as director of the New Jersey Woman and AIDS Network (NJWAN):

Part of it was that when I left NJWAN in 1996, people were still dying right and left, and it was very difficult, all those deaths, and for a long time, as long as they keep coming, one right after the other, you can steel your defenses to keep up the fight. But it also makes the fight all the more immediate. You don't have time to cry. You've got to keep on fighting. But now all those people are just gone. You just miss them. And so many women. So many women, not a few of whom, in my case, were actually lesbians. But lots of fabulous women. . . .

Then there's the gay men, too, who were my friends, whom I miss. So when you're out and removed from it your defenses are way less strong, so that I find now that it's the deaths that remain with me, actually. I find this fascinating, actually. It's one of the reasons why I'm not still doing AIDS work, I think. Because you have to do it fully. You can't do just a little bit of AIDS work, because otherwise you'd be crying all the time, and you can't be a very effective public speaker when you start crying in the middle of your rap. So I have found that to be true for myself, and that's been a new discovery in the last couple of years, because I still do some training and it's way harder than it used to be, in terms of really having to steel yourself. And I'm a person who had come to AIDS work having already experienced some multiple deaths in my life, my mother, very young, and my grandmother, who raised me, at age thirteen. So I already knew what death was about. I knew the impact, and my father died right when we were finishing Women, AIDS & Activism. When you've already experienced multiple losses, then you can deal with more multiple losses in a slightly different way. But then once you don't have to anymore, then, great. Great. I'm outta here, in a way. So I think that's happened to me. Not exactly consciously. In fact, I'm sort of articulating it for the first time in quite this way, now. I had had the other stuff, about the pharmaceutical critique. I understood that as a reason why I wasn't doing AIDS work, but I hadn't quite gotten this other, this mourning piece.

It's telling that Banzhaf describes being less able to return to activism now that she has had some time to grieve. Mourning AIDS also brings in its wake other deaths and losses, such as, in her case, the deaths of her mother and grandmother. Being inside a crisis, particularly as an activist, does not always provide adequate opportunity for mourning. Moreover, because this unfinished mourning can prevent future activism, learning how AIDS activism has put people in contact with death and mourning is crucial to exploring activism's legacies and its futures.

In understanding how mourning works in relation to activism, I have also been helped by David Eng and David Kazanjian's rereading of Freud's distinction between mourning and melancholy in their introduction to Loss; rather than read melancholy as a pathologized or incomplete version of mourning, Eng and Kazanjian suggest that the lack of closure and the holding on to the past that characterize melancholy can be a resource for cultural production. Such is the case with the persistent memory of those who have died in the ongoing lives of AIDS activists. Catherine Gund, for example, talks about her relationship with Ray Navarro as pivotal in her history with ACT UP, citing her involvement with DIVA-TV, ACT UP's video collective, as part of a collaboration with him. She stopped going to ACT UP in 1990, the same year that Navarro died, although she also cites as a factor her disenchantment with the 1989 Stop the Church protest at St. Patrick's Cathedral. Jean Carlomusto also mentions the impact of Ray Navarro's death on the DIVA-TV collective, saying that although there were other reasons for the demise of its first incarnation, his death was a major factor. I sense that such stories of endings are always complicated. As we continue to talk about it, Gund suddenly realizes why she can't remember much about that time; her long periods at the hospital with Navarro were both absorbing and mind numbing. This is a story of activism structured around the intensity of friendship - a friendship that combines romance and collective work. These are intimacies shot through with longing and loss, and they are the foundation of activism's affective power. For Gund, it can be sad to recollect her ACT UP history and even its legacy because it involves taking the measure of years in which she has continued to live and her friend has not. She says:

To have a legacy is like a present. I think of Ray a lot as a reference for my ideas and experiences. I think about what he might have done in the same situation, where he might have gone with something, how he might have formulated a joke while walking down the street or watching a bad movie. And I do feel sad that he didn't get to work with his ideas for too long, that he didn't get to work them out. From what living the years since then has taught me, I can see that he was just getting started. I can appreciate the privilege of imagining what I want to make of my life and getting to try out some of those fantasies real. And there are times I wish it was him who was saying what he had done and not me imagining it.

Gund's relationship with Navarro continues to be an active part of her life, even many years after his death. The above quotation emerged as the result of a conversation in which we edited the first version of her comments to remove a sense of survivor's guilt that she felt no longer reflected her feelings.[4] She notes that, in her ongoing fantasies about Ray, he is now the age he would have been if he had lived, rather than the age he was when he died, and she considers this a step forward in the mourning process. When I mentioned it to her, she liked the idea of a positive conception of melancholy, one that views an open-ended relationship with the dead as enabling rather than debilitating.

I was, of course, particularly eager to interview Jean Carlomusto herself about her ongoing experience of the ways memories of activism are combined with memories of death, and my expectations were not disappointed. In our interviews, she worried about ACT UP's visual history being "used as wallpaper. Whenever you want to talk about activism, just throw in some protest footage, even if it's not about the action you're referring to." She describes her struggle, in the period following her involvement with ACT UP, to live with the experience of mortality and how that has led to her renewed interest in history and archives:

That's actually a very difficult thing to come by - recognizing the fleeting nature, the constantly changing nature of life. It almost sounds trite, but it's an incredibly profound part, for me, of acclimating to life now. I had a very tough period of time where I almost didn't go out for a year. A lot of different things played into that, but a lot of it was this struggle with mortality. Michael Callen wrote this song, "We Are Living in Wartime," and the song is describing the experience that only people who survive, I guess, epidemics or natural disasters or wars are familiar with; where in such a short period of time you lose a whole part of your community of friends. All of a sudden people are gone from your life. . . .

I'm not advocating living like a hermit as a way of dealing with this. It's just a phase I had gone through. But activism - in a way I think part of my way of dealing with this loss, related to activist work, was also somewhat activist in nature. Getting more involved with the Lesbian Herstory Archives. I really became interested in archives, the whole nature of that, and I think part of that is related to a more mature attitude toward history. I think there was a kind of mentality for those of us who were twenty-somethings during the AIDS activist movement, who believed there was nothing like this moment. This was truly mind-blowing what we were doing - and it was. But in the wake of the loss of that, I also began really culling or nurturing an appreciation for not just my history but just the historical artifact.

Carlomusto is one of many women I interviewed whose ongoing projects continue to engage with AIDS, and especially with death and loss. Just as video made possible a new kind of activist documentation, so too is it producing new ways of documenting activist memory. Carlomusto talks about the importance of having her archive, now easily accessible on a desktop computer, around her on a daily basis. She is working on a project in collaboration with Jane Rosett, called AIDS: A LIVING ARCHIVE™, which consists of a number of installation pieces designed to mobilize their combined archive of video and photographs to reflect on history and bring the past into the present. "I just feel like it's vitally important to have access to these archives," explains Carlomusto, "because when I go through them they constantly give me a new approach to the present." For her, a readily accessible video archive "starts to break down the boundaries between space and time, so that past and present - well, at least the past - is just so accessible and able to be drawn into one's work."

Such is the case with "The Portrait Gallery", which is part of AIDS: A LIVING ARCHIVE™ [and is featured in this issue], an altar-like installation that incorporates video portraits of AIDS activists, which are activated by an electronic button placed in front of a votive candle displaying the image of the activist. By incorporating video oral testimony into an installation that is charged with spiritual meaning, Carlomusto and Rosett acknowledge that reception of the archive is an emotional process, and they give viewers an opportunity to acknowledge those feelings within the context of the museum. Thus, they address the challenge of many trauma archives - how to present archival material in a way that doesn't simply overwhelm or numb the observer. Their work suggests that it is not enough simply to accumulate archival materials; great care must be taken with how they are exhibited and displayed. The cultural knowledges embedded in forms such as documentary video and photography, performance, and installation art have much to offer as a resource for oral history archives. Not only is Carlomusto and Rosett's video exhibited in a context that acknowledges its emotional power, but their insistence on the archive as living reconstitutes the work of mourning and memorial. At the heart of the archive, including the oral history archive, are practices of mourning, and the successful exhibition and distribution of the archive enables the work of mourning.

Remembering Hope

Important as these comments about mourning are for the record of AIDS activism, they were not that easy to gather. It was only as I became more pointed in my questions that they emerged in the interviews. I would argue that the tendency to see mourning and militancy as different, or even mutually exclusive, structures not only the experience of activism but the memory of it. In creating a public document, the activists I interviewed understandably wanted to leave a hopeful record, one in which their sense of accomplishment is recorded. When I have discussed my project's connections with trauma, some of the women I interviewed have been extremely wary, concerned with the pathologizing implications of describing their experiences as traumatizing and insistent on their activism as a way of moving beyond or warding off trauma. I very much respect this sentiment, which motivates my written account as well. But I'd like to open up space in which exploring the emotional ambiguities and complexities of activism doesn't compromise or undermine its significance. There are implications here for oral history, which in constituting its own forms of activism, should not, I think, be bound to any kind of simplistic celebration but should instead become a forum for reflecting critically upon the past. I am also gratified to see that oral history is being used as a tool to record ACT UP's history in the ACT UP Oral History Project, currently being conducted by Jim Hubbard and Sarah Schulman.

My argument is also informed by my experience with other delicate interview topics. In addition to exploring the emotional dynamics of mourning in activism, I also investigated sex, romance, and friendships within ACT UP, as well as the intensities of political conflict and disagreement, both areas that people were sometimes reluctant to talk about or that presented challenges for me to write about in a way that was accurate and respectful. The lessons of feminism and gay and lesbian studies about sexual politics have bolstered my insistence on emotional life as the focus of interviews, reminding me that aspects of our lives that we might think of as private or inappropriate can in fact be of historical or public value. Of course, the use of oral history as a tool for exploring emotionally charged terrain such as trauma or sexuality presents a host of challenges both practical and theoretical, so making this recommendation constitutes a problem not a solution.

The need for a record of activism that acknowledges its emotional complexity has seemed all the more urgent to me in the wake of the traumatic events of 9/11, especially as some of us search for ways to articulate dissent from military retaliation and, as of this writing, the ongoing U.S. military presence in Iraq. The popular public memorials that sprang up in New York immediately after 9/11 in places such as Union Square or the Times Square subway station have been a way for people to make their mourning public and they recall similar efforts on the part of AIDS activists. These public shrines express a complicated range of feelings that go beyond the sentimental patriotism demanded by the government and documented by mainstream media. The need to address mourning as part of militancy seems very important as we seek to do justice to the dead while reckoning with the violent history of U.S. intervention in the Middle East and elsewhere. Space and time to acknowledge fear, confusion, and not knowing what to do would help to avoid violent and xenophobic responses. To this end, an oral history that can do justice to the complexity of emotional response seems an important tool in developing forms of activism that are similarly complex.

I'm hoping that Columbia University's September 11 Oral History and Narrative Memory project will be such a resource. (For more about the project, see Mary Marshall Clark's contribution to this issue and the Oral History Research Office web site, and my article in Trauma at Home: After 9/11.) In spring and summer 2003, I helped conduct interviews for this archive, and the lessons of my oral histories with AIDS activists remained with me. I encourage those I've interviewed, many of whom are immediate survivors only in the sense of having been in New York that day, to make connections between 9/11 and other aspects of their lives, whether very public events such as the history of the Holocaust or migration, or more personal events such as marriages, birthdays, and the completion of graduate degrees and other creative projects. As an interviewer, I often find it challenging to establish the rapport that will invite people to share their emotional histories with me, including their experiences of trauma. I take from my experience of documenting AIDS activism that nothing is too small or unimportant when exploring the impact of trauma on everyday lives, and I learn from the people I talk to that the effects of 9/11 are wide-ranging. Whether and how these interviews can make an impact on the massive cultural apparatus that is busy memorializing 9/11 in contexts such as the rebuilding of the World Trade Center site remains to be seen, but for those who find their way to it, the archive of feelings recorded in the 9/11 oral histories will be the repository of many forms of alternative cultural memory.


1. This article is adapted from my remarks at the 2002 Scholar and the Feminist plenary session on "Memory, Trauma, History, Action," as well as from a talk I gave at the 2001 Oral History Association conference plenary session on Memories of Trauma and Resistance. I was confronted there as well with the challenge of situating my work on AIDS activism in the context of geopolitical sites of struggle that seemed to have wider significance. My fellow panelists there were Stevan Weine, a psychiatrist who has worked with survivors of war in Bosnia and the author of When History is A Nightmare: Lives and Memories of Ethnic Cleansing in Bosnia-Herzogovina, and Gertrude Fester a former ANC member who was imprisoned during the years of anti-apartheid struggle and who at the time of the panel was Commissioner on Gender Equality in South Africa. [Return to text]

2. For Crimp's own reflections on the past, see Melancholia and Moralism, especially the title essay. [Return to text]

3. The material in this section is drawn from my book An Archive of Feelings: Trauma, Sexuality and Lesbian Public Cultures. [Return to text]

4. Phone conversation, May 24, 2001. [Return to text]

Works Cited

ACT UP New York. 2003.

ACT UP New York. 2003. Ashes Action. 2003.

ACT UP New York. DIVA TV. 2003.

Artists With Aids. 2003. Estate Project: Royal S. Marks AIDS Activist Video Collection at the New York Public Library. 2003.

Artists with Aids. Gregg Bordowitz on Fast Trip, Long Drop. 2003.

Ashes Action 1992. Prod DIVA-TV. 1996. Videocassette 2003.

Banzhaf, Marion. Personal Interview. April 10, 2000.

Carlomusto, Jean. Personal Interview. May 28, 1997 and January 31, 2000.

Crimp, Douglas. "Mourning and Militancy." October51 (Winter 1989): 3-18.

Crimp, Douglas. Melancholia and Moralism: Essays on AIDS and Queer Politics. Cambridge: MIT Press, 2002.

Columbia University in the City of New York. Columbia University Oral History Research Office. 2003.

Cvetkovich, Ann. An Archive of Feelings: Trauma, Sexuality, and Lesbian Public Cultures. Durham: Duke UP, 2003.

Eng, David L. and David Kazanjian, eds. Loss: The Politics of Mourning. Berkeley: U of California P, 2002.

Fast Trip, Long Drop. Dir. Gregg Bordowitz 1993. Videocassette 2003.

Health Global Access Project. Health GAP. 2003. ACT UP Oral History Project. 2003.

Saalfield Gund, Catherine. Personal Interview. November 3, 1997.

Treatment Action Campaign (in South Africa).

United Nations. org. 2001. United Nations Special Session on HIV/AIDS. 2003.

Weine, Stevan M. When History is A Nightmare: Lives and Memories of Ethnic Cleansing in Bosnia-Herzogovina. New Brunswick: Rutgers UP, 1999.

Wojnarowicz, David. Close to the Knives: A Memoir of Disintegration. New York: Vintage, 1991.

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