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AIDS The Pleasures and Intensities of AIDS Activism;
or, Making a Place for Yourself in the Universe
by Debbie Gould

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[ The following is an excerpt from ACT UP/Chicago member Debbie Gould's award-winning book about the direct-action AIDS movement, Moving Politics: Emotion and ACT UP's Fight Against AIDS ( University of Chicago Press, 2009, pp. 4, 181-186, 188-190, 192-196, 198-200, 202, 203, 207-212 ) . You can order the book here: ]

Arguing that confrontational direct action was needed to fight the exploding AIDS crisis, oppositional activist groups began to emerge in 1986—87 out of lesbian and gay communities around the United States. With cumulative deaths nearing and soon surpassing twenty thousand nationally—the vast majority of them gay and bisexual men—lesbians and gay men formed direct-action AIDS groups in San Francisco ( Citizens for Medical Justice, summer of 1986 ) , New York ( the Lavender Hill Mob, summer of 1986 ) , and Chicago ( Dykes and Gay Men Against Repression/Racism/Reagan/the Right Wing turned toward direct-action AIDS activism in early 1987 ) . ACT UP formed in New York City in March 1987, and other chapters soon sprouted up across the country, forming a national direct-action AIDS movement. Through raucous demonstrations, acts of civil disobedience, disruptions, die-ins and other forms of street theater, meetings with government and other officials, and eye-catching agitprop, ACT UP and similar direct-action AIDS groups intervened in every aspect of the AIDS epidemic, with tremendous effect.

What was it like to be in ACT UP during its heyday in the late 1980s and early 1990s? Across dozens of interviewees there is remarkable consistency in people's positive memories of what ACT UP meetings and events felt like. That is not to say that participants' experiences were all the same or that there were no bad feelings in the movement. Indeed, some mention feeling like outsiders. As well, many ACT UP chapters experienced painful internal conflicts in their later years. Nevertheless, people repeatedly speak of the exhilaration of protest actions and meetings, the erotic atmosphere of meetings, feelings of camaraderie and connection with others in the movement, and a sense of fulfillment that derived from taking part in something larger than oneself.

To Jeff Edwards, ACT UP/Chicago meetings were electric: "There were so many energetic and smart people doing so many things. … So much was happening in that room … so much passion, and imagination, and urgency" ( Edwards 2000 ) . Charles King recalls being moved, bodily, at his first ACT UP/NY meeting: "Standing in the back of a packed room at the Gay and Lesbian Community Center, I found myself heaving dry sobs, hoping no one could see my visceral reaction. At last there was something I could do. I could fight back. And even if we didn't win, I wouldn't be going down alone" ( King 2007 ) . People lived ACT UP, and one reason was that the movement gave many people a sense of belonging, perhaps for the first time. David Barr walked into his first ACT UP/NY meeting in May 1987 and said to himself, "Oh my God, I'm home. … I had been waiting for this. I liked the energy in the room and I liked the approach. … It was really sexy. There were all these really cute guys and they were interesting and they were political and I had just never seen [ anything like ] it before. I thought, 'Finally, I've been looking for this all my life.' I really felt like I was home" ( Barr 2002 ) .

ACT UP was an emotionally enticing place. Although ACT UP/NY member Allan Robinson was critical of the racism he encountered in ACT UP, he found that "an energy in the room" made him go back, "again and again" ( Hunter 1993, 59 ) . He recalled, "Outside of all my criticism, I found an energy in the organization that was frankly exciting. That energy helped me deal with the loss, anger, and the frustration with societal indifference I was encountering. I think that, in retrospect, ACT UP has satisfied that need for many people. So many people need that kind of conduit to deal with those feelings" ( Hunter 1993, 60 ) . ACT UP was a place that normalized and thereby authorized anger, that allowed people to shelve their grief for a period and instead "turn grief into anger," a place that generated pride in queerness and in defiant street activism.

Jim Eigo attended his first ACT UP/NY meeting by mistake but was so taken by it that he stayed:

"I went to the Gay and Lesbian Community Services Center in November of 1987. … I went there thinking I was going to a forum that Lambda Legal Defense was presenting on what we should do in the wake of the Bowers v. Hardwick decision. … [ The forum ] was going to be on the second floor of the Community Services Center. But I thought it was on the first floor. So, I sat down in an ACT UP meeting, and I very quickly knew that this was not Lambda. It was the most vital political meeting—even before the meeting started—the most vital group of people I'd ever sat among in my life. The table by the entry was full of literature that everybody was producing themselves and had out. And there was a buzz everywhere. And then when the meeting started—and it was quite clear that unlike any political meeting I had ever been to in my life that this was really, actually being run by the people, from the floor, for themselves, for those concerns that were central to their lives at this time—it just blew me away. I knew right away that it was a group that I had to become involved with immediately." ( Eigo 2004, 18—19 )

ACT UP's radicalism—in the realms of sex, tactics, critique, and vision—not only directed a powerful challenge against the state and its dominant institutions; it also ushered in alternative modes of feeling, thinking, and being for many lesbians and gay men, many of whom began to identify as queer. The movement's radical potential is part of what attracted Kendall Thomas. "I was invested in the idea of helping to create a queer public sphere that wasn't about civil rights, but rather was about freedom, which is larger and more audacious and bolder than a simple demand for civil rights. And ACT UP seemed to be an organizational framework for that kind of politics" ( Thomas 2002 ) . Many participants were drawn to ACT UP because it allowed, indeed encouraged, people to be angry at state and society, to embrace confrontational tactics, to be in-your-face queer. Even more, to be in a room overflowing with people who shared your sense of political possibility generated feelings of camaraderie and a strong sense of belonging.

Another aspect of ACT UP that drew many to the movement was its democratic character. Contrasting ACT UP/NY to other political groups she had been in, Marion Banzhaf recalled ACT UP as "very exciting, because this was a different kind of group. It was not a top-down group, it was a bottom-up group, even though there were hierarchies within ACT UP about who was cool and who got to cruise whom and who got to do what. It was still a very democratic group" ( Banzhaf 2000 ) . ACT UP/Chicago member Ferd Eggan described an instance when these democratic principles manifested themselves at a precarious moment during a national demonstration in Chicago. The demonstration had flowed into the street by that point, but police officers on horses were blocking our way.

"We were surrounded by all the horses and everything. And so I got on the mike and just asked people whether they wanted to fight through the horses and take the streets, or not…. And we actually voted in the middle of the street that we would just take the street…. People decided that they would just fight through the horses and go take the street. And then we did. And I think that was my favorite moment, really, because it was like people deciding what to do, en masse, right in the middle of this demonstration." ( Eggan 1999 )

I remember the exhilaration of that moment as well—more than a thousand activists collectively deliberating in the street and ultimately deciding to push our way through the phalanx of cops and horses. That sense of freedom generated through defiant and collective self-determination was thrilling, in part because participatory decision-making and collective self-rule are generally absent from most of our lives.

As a collectivity, ACT UP participants shared many values, but the movement fended off groupthink more or less successfully with its caucus and affinity group structure—a facet of the movement that contributed greatly to ACT UP's non-hierarchical, decentralized, and democratic character. Caucuses of women, people of color, and people with immune-system disorders ( PISD ) provided a degree of autonomy to those underrepresented groups. Self-organized affinity groups of people who wanted to engage in direct action together similarly operated relatively autonomously from the larger group. This cellular, self-organizing structure engendered creative, exciting, and mediagenic demonstrations, but more than that, it allowed for multiplicity within the movement—in terms of priorities, tactics, demeanor, and identity.

Participants consistently remark on ACT UP's vibrant sexual atmosphere. Michael Thompson described ACT UP/Chicago's meetings as "really sexy," adding, "there were just a lot of hormones [ in the air ] at all times." He was particularly taken with the sexual expressiveness of lesbians in ACT UP: "To be around lesbians who were also being sexy was really cool. Because that [ intermixing of men and women ] is not something that generally happens in the queer world. It was generally segregated" ( Thompson 2000 ) . Polly Thistlethwaite fondly remembered ACT UP/NY's meetings: people sat in each other's laps, brushed up against one another, and cruised each other ( Thistlethwaite 1993 ) . Given the prevailing climate of sexual fear in the late 1980s—in both gay and straight worlds—ACT UP's celebration of queer sexuality was a political act. Indeed, many ACT UP members experienced their bodies as the battleground on which the AIDS war was being fought, in terms of both the fight against HIV and for sexual freedom. Jeanne Kracher saw ACT UP/Chicago's sexual culture as a form of resistance to dominant society's efforts to "shut us down sexually" ( Kracher 2000 ) . ACT UP recuperated queer sexuality in part by creating a new venue where sex and activism were thoroughly joined. Meetings were filled with flirtation, cruising, touching, and kissing, along with heady discussions with life-and-death stakes, discussions that themselves were sexy in their intensity. ACT UP's ethos made having queer sex, and lots of it, feel like a political act, and the close physical contact of our civil disobedience actions, along with our chants and agit-prop and the ACT UP uniform itself—T-shirt, jeans, leather jacket, combat boots—sexualized ACT UP protests. There was an erotic charge to everything we did. Probably as a result, even meetings that went on for hours often felt electrifying rather than tedious.

Along with its erotics, the movement was awash in humor as well as sheer fun. In the face of homophobia and other indignities, AIDS activists camped it up. Gilbert Martínez recalls flirting with the police officer who arrested him at a demonstration targeting the National Institutes of Health in 1990: "When I was arrested at NIH, this real hunky cop asked me if I wanted to walk or be carried. And I said, 'Are you kidding me? I would never walk and pass up the opportunity of being held in your arms'" ( POZ 1997, 63 ) . Activists sometimes even responded to death and grief with humor. Marion Banzhaf remembered a New York affinity group satirizing the frequent ACT UP chant "How many more must die?!" when it made a T-shirt that said, "Harmony Moore Must Die." It was an instance of "turning this expression about genocide and loss into an internal satire" that only ACT UP members would understand ( Banzhaf 2002 ) . In a climate of bigotry, antigay violence, illness, death, and unending if submerged grief, campy humor was a creative response that offered much-needed psychic relief and release.

ACT UP participants sometimes injected queer sensibilities and humor into the most unreceptive of places. At a national ACT UP action in April 1990 for universal health care, close to one hundred and fifty AIDS activists from across the country were arrested in Chicago, effectively overwhelming the city's jail system. Because there were not enough jail cells for all of us, the police initially put everyone into a large room, unsegregated by gender. We were euphoric from the protest action and happy to be together, so there was a lot of animated discussion along with hugging and kissing and general excitement. Our jubilant conversations quickly reached a high pitch, and the officer in charge tried to gain control over the room by demanding that we cease kissing and that we sit "girl-boy-girl-boy." His order was met with giggles as we all rearranged ourselves like obedient school children ( the gender queers among us ensuring that we weren't that obedient ) . Then, at frequent intervals, ACT UP/Chicago member Ortez Alderson stood up and reminded us all that "there is to be noooooo same-sex kissing in the jail," and on cue we all resumed kissing, boys with boys, girls with girls, girls with boys, gender queers with all.

ACT UP was affectively intense, and that quality, inextricably intertwined with ACT UP's sexiness, humor, and fun, drew people to the movement and inspired them to return again and again. Being surrounded by illness and death and collectively fighting the state and dominant social institutions on issues with life-and-death stakes filled our lives with meaning and purpose and generated immense feelings of connection and affection toward one another. ACT UP/Chicago member Mary Patten has written about the intensity of life in ACT UP, highlighting the ways in which our activism and every other aspect of our lives were inseparably, and deliciously, entangled: "A friend remembers: 'Those were the days when we would go into Suzi B's ( a since-closed dyke bar ) , and we knew everybody ( and everyone knew us ) .' The connective tissue between our 'private' and our 'public' lives—between the ways we did political work and organizing, had sex, played, theorized, and mourned—was strong, elastic, sometimes barely noticeable" ( Patten 1998, 389 ) .

Patten's friend is me, and I recall the loss I was feeling when I said that to her after ACT UP's decline. As Patten notes, our social, sexual, emotional, intellectual, and political lives were tightly interwoven. ACT UP meetings were more than meetings; they were a place to fight AIDS, and they also were cruising grounds, a chance to channel one's grief and frustration and to revitalize feelings of anger and pride, a place to struggle, learn, and grow, an opportunity to enact newly emerging queer identities, and a place to reimagine the world. Sexual liaisons were a chance to have sex, and also a way to learn more about safe sex as well as an opportunity to elaborate queer theory. Parties allowed us to dream up our next action and to mourn the most recent deaths. Creative demonstrations provided fodder for theorizing, while study groups reinvigorated our street activism. Every aspect of our lives connected to every other, and it all seemed vital. Engaged in world-making with like-minded people, we felt exuberant, joyous, engaged, connected to one another, sexy, and consequential. To be sure, there were conflicts within the movement, but for a number of years we addressed them in a manner that, at least for many, maintained strong positive feelings and identification with the movement and with one another.

ACT UP/Chicago member Carol Hayse recalled the strong sense of solidarity that developed between gay men and lesbians, the "joy in rediscovering each other" ( Hayse 2000 ) . ACT UP/Chicago's Frank Sieple also recalled the intense connection he felt with other members of ACT UP: "The camaraderie just can't be replaced. It's like going, I'd imagine, you know, people that go into some sort of battle together…. World War II, or something. And you're with these people and planning things, and going through these things. And some people die, you know, it's just like a war" ( Sieple 1999 )

People's descriptions of what it felt like to participate in ACT UP recall Emile Durkheim's notion of collective effervescence. The term conveys the "transports of enthusiasm" and "a sort of electricity" that comes from people amassing and being physically close to one another in a manner that "launches them to an extraordinary height of exaltation" ( Durkheim 1995, 217 ) . The amassing of large numbers of people who see themselves as in some way connected and acting together for a collectively desired end generates a "bodily awareness of copresence" that can unleash immense "emotional energy" ( Collins 2001, 28 ) . Movements, in that sense, are locations for the "transmission of affect" ( Brennan 2004 ) , sites where bodily intensities are relayed among participants.

Our sentiments of exhilaration and elation stemmed in large part from being engaged in defiant, confrontational activism with other social outcasts who were committed to fighting the AIDS crisis and building a more just and joyous world. Mark Harrington's memory of an after-demo dérive through the streets of New York points toward the sheer euphoria in collectivity:

"My favorite part [ of ACT UP/NY's 1989 'Stop the Church' action ] was afterwards, when we got away from the church, started marching around the city and sat down in Times Square. Because it seemed like we were free, we were happy, we were all together, and nobody could stop us. It was just one of those nice moments that happens when you do things in activism, where there isn't any reason for what you're doing, it's just an expression of collective joy or power." ( Handelman 1990, 117 )

ACT UP/Chicago member Sharyl Holtzman's comments about the aftermath of a national ACT UP demonstration in San Francisco against Secretary of Health and Human Services Louis Sullivan similarly convey the intensity of feelings of joyousness and collectivity within the movement:

"When Sullivan was finished, [ the members of ACT UP who had participated in the demonstration ] marched out of Moscone Center, feeling absolutely ebullient, and walked down Fourth Street to join the [ Lesbian and Gay Pride ] Parade. As we neared Market [ Street ] , we saw the ACT UP colors, the Silence = Death signs, and for a split second we froze in amazement. Out of over 200 entries in the Parade, ACT UP was crossing the intersection just as we were arriving…. Like lovers who had been kept apart in a battlefield, we ran toward them—our friends, our fellow warriors, our family. It was exuberant and unbelievable. People were jumping in the air, they were hugging, they were crying, they were laughing through their tears." ( ACT UP/Chicago 1990, 4 )

A movement's demonstrations, actions, and other events—its rituals—allow participants to move outside of the everyday mundane, or, more apt in this case, out of everyday devastation, and to be transported into a more meaningful existence that holds out potential for self and social change. Such happenings have an almost sacred quality to them, part of what gives them tremendous intensity. In describing the feelings he experienced during an affinity group action, ACT UP/NY member Jon Greenberg provided a glimpse into such ecstatic affective states. Prior to the risky action, everyone was afraid, but, Greenberg states;

" [ We ] knew that it was only fear, and rather than let that stop us, we used it to propel us into further action, to confront and push through the barrier of our fear and be liberated even as our bodies were being arrested and jailed. There was an otherness about those moments. We all felt it. We all knew that we had, if only for a moment, an hour, a day, become larger than we had been the day before. We each became part of the other, and as a unit our collective spirit crossed an illusory boundary which we only knew was an illusion after we had crossed it. … Through collective empowerment we declared who we were and how we felt and made a place for ourselves in the universe." ( Greenberg 1992 )

Those who engaged in ACT UP actions were already sympathetic to the movement's worldview, but the experience of doing an action—of "becoming caught up in it not just imaginatively but bodily" ( Geertz 1973, 116 ) —often amplified people's identification with ACT UP and with their comrades and intensified their commitment to fighting AIDS.

In a world where impersonal, abstract forces shape daily lives and can generate sentiments of being out of control, of inefficacy, of helplessness and hopelessness, social movements are often a space that engenders rich and textured counter-feelings. In addition to filling our lives with intensity and a sense of meaning and purpose, the exciting swirl of ACT UP's protest actions and meetings allowed us to reinvent ourselves, to carve out a place where we could be angry, oppositional, defiant, hopeful, sexual, and happy, a place where we could engage in collective projects of world-making. ACT UP participants invariably comment on the important role the movement played in their lives and specifically recall the intensity of their feelings while in the movement. Jeff Edwards remembers feeling like "we were making history." ( Edwards 2000 ) . Michael Thompson noted how intense it was to be involved in a movement where participants were dying: "It was a very special time to be with people who you knew might not live through their lives…. To be in a political movement where the movement was dying. There's nothing quite like that" ( Thompson 2000 ) .

Jeanne Kracher echoed Thompson's sentiments about the illnesses and deaths of comrades in the movement:

"We were experiencing things that for people our age were very heavy. I mean, when I think about how you and I went and took care of Ortez and changed his diaper five times in one night and carried him to … all of that stuff, how old were we then? I was in my early 30s and you were in your mid-20s. I mean, there's a way that you don't experience that in this society … coming from the background we come from. ( Kracher 2000 )

ACT UP participants faced both a society where street activism was frequently disparaged and a community that had a history of hesitancy about angry, confrontational activism. Direct-action AIDS activists were bucking both systems, and they took some heat for that. The intense feelings generated in the movement—of self-affirmation, purposefulness, connection to others, shared resolve, love—fortified a commitment to ACT UP, helping the movement to flourish into the early 1990s.

I'll conclude with a comment about the pleasures and intensities of social movements more generally. Through protests and other activist manifestations, social movements unravel commonsense knowledges, counter the subtle and not-so subtle power relations that pervade our lives, reveal sizable cracks in people's apparent complacency, and show that social arrangements are neither inevitable nor immutable. Even more, movements are expressions of desire for different forms of social relations, different ways of being, different worlds. They are a space for resurrecting squelched desires and developing new ones, for articulating and enacting what previously might have been unimaginable. They surprise, entice, exhilarate, electrify.

Reprinted with permission from Moving Politics: Emotion and ACT UP's Fight against AIDS, by Deborah B. Gould, published by the University of Chicago Press.

� 2009 by the University of Chicago. All rights reserved.


ACT UP/Chicago. 1990. Get It: Newsletter of ACT UP/Chicago. July—August.

Banzhaf, Marion. 2000. Interview conducted by Ann Cvetkovich, March, New York.

Banzhaf, Marion. 2002. Interview conducted by author, September 12, New York.

Barr, David. 2002. Interview conducted by author, September 11, New York.

Brennan, Teresa. 2004. The Transmission of Affect. Ithaca, NY: Cornell University Press.

Collins, Randall. 2001. "Social Movements and the Focus of Emotional Attention." In Passionate Politics: Emotions and Social Movements, eds. Jeff Goodwin, James Jasper, and Francesca Polletta, 27—44. Chicago: University of Chicago Press.

Durkheim, Emile. 1995. The Elementary Forms of Religious Life. Trans. Karen E. Fields. New York: Free Press. ( Orig. pub. 1912. )

Edwards, Jeff. 2000. Interview conducted by author, April 21, Chicago.

Eggan, Ferd. 1999. Interview conducted by author, October 30, Chicago.

Eigo, Jim. 2004. Interview conducted by ACT UP Oral History Project. Available at .

Geertz, Clifford. 1973. The Interpretation of Cultures. New York: Basic Books.

Greenberg, Jon. 1992. "Speech for Mark Lowe Fisher's Funeral." Given on November 3, 1992. Document available at DIVA TV's Web site: .

Handelman, David. 1990. "ACT UP in Anger." Rolling Stone, 8 March, 80.

Hayse, Carol. 2000. Interview conducted by author, April 2, Chicago.

Hunter, B. Michael, ed. 1993. "Allan Robinson, AIDS Activist." In Sojourner: Black Gay Voices in the Age of AIDS, ed. Michael B. Hunter, 54—61. New York: Other Countries Press.

King, Charles. 2007. "The Many Faces of AIDS: A Message to My Brothers and Sisters in the Gay Community." Speech given in San Francisco, December 1, 2007. Available at ( accessed 22 September 2008 ) .

Kracher, Jeanne. 2000. Interview conducted by author, February 15, Chicago.

Patten, Mary. 1998. "The Thrill Is Gone: An ACT UP Post-Mortem ( Confessions of a Former AIDS Activist ) ." In The Passionate Camera, ed. Deborah Bright, 385—406. New York: Routledge.

POZ: The ACT UP Issue. 1997 ( March ) .

Sieple, Frank. 1999. Interview conducted by author, July 8, San Francisco.

Thistlethwaite, Polly. 1993. Interview conducted by Kate Black, September 26. Interview housed at the Lesbian Herstory Archives, Brooklyn, New York.

Thomas, Kendall. 2002. Interview conducted by author, September 11, New York.

Thompson, Michael. 2000. Interview conducted by author, March 19, Chicago.

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