Andrew Clark

WGST 632
December 3, 2009
Dr. Theriot

Memories are All We Have Left:

ACT-UP, Selective Memory and the Repositioning of AIDS Activism

Silence = Death.

Introduction

How we choose to remember an event is just as important as the event itself.

Some scholarship surrounding AIDS and Queer theory in 1990’s uses specific

memories to represent a past that is sometimes better, sometimes worse. Queer

theory argues that identities are social constructions, that there is nothing essential

or corporeal to our identity. Some have gone so far as to argue that we are not

active producers of our identity, but rather that we are compelled to perform an

identity that we did not choose. Those writing critiques of Queer theory, here we

look at Eric Savoy and Sue-Elle Case, believe that the individual has been written

out of the equation. In fact, they believe that Queer theorists such as Judith Butler

have deconstructed identity so much that identity no longer matters. A type of

cultural (or identity) relativism is produced, pushing the individual into nothingness.

This means that all identity, whether gay, straight, man, woman, queer, etc… is all a

performance and nothing more. Then what happens to the individual?

I believe those working against the relativism of identity brought by Queer

theory are right by pointing out that identity does matter. Whether or not your
identity is really just a performance does not negate the fact that persons who claim

a certain identity are literally risking their life. Identity, no matter how fake, has

very real implications.

However, it seems that arguing for identity based politics requires looking

back to how things used to be, finding a sort of empowering dystopia that was both

empowering and always already radical. Over and over again the New York based

group ACT-UP has been heralded as one of the most radical and ironic pro-gay and

HIV/AIDS awareness groups of the 1980s. When ACT-UP is cited as a radical group,

it is called “radical” because of the unapologetic visibility brought by the group.

ACT-UP used demonstrations and direct and sometimes graphic (for the 80s)

posters, flyers and placards to get its message across. And while I have no doubt

that ACT-UP was every bit as radical as the theorists believe, I have to question how

the group and its actions are remembered. If recovering the individual is the

project of returning to identity politics, it seems odd to write about ACT-UP while the

individuals of the group out of the examination and critique. It seems that ACT-UP

is painted as a radical group and nothing more.

My purpose in this paper is to examine the ways in which ACT- UP has been

used in arguing for identity politics and against the deconstruction of identity. I

argue that, through selective remembering, theorist have highlighted the radical

nature of ACT-UP to the point that individual members and their reasons for forming

and joining the group are left unexamined. It’s as if “radical” and “humanistic”

have been placed in an oppositional binary. Through the use of oral histories

gathered by the ACT-UP Oral History Project, I hope to place the group within the

historical context of the AIDS crisis, thereby showing both the radicalism heralded
by theorist while paying attention to the humanity of ACT-UP that has been largely

ignored by scholars.

Context: The Crisis of AIDS

HIV/AIDS when from being completely unknown to a full blown crisis in just

under two years. First labeled as Gay-Related Immune Disease (GRID), the news of

HIV/AIDS made its way through the national papers, and the gay community was

sent reeling. Moreover, so little was known about the disease at first that people,

especially the gay and lesbian community, were unsure how to react. The public at

large had many questions: how is the disease transmitted? Whom does it affect?

Can women transmit the disease? Is the disease confined to the gay community?

Once GRID became a concern for the gay community, there was a push for

the government to do research on how the disease is transmitted and to begin

looking for treatment and perhaps a cure. Yet it seemed as if the Regan

administration cared little for gay people or the other at-risk populations. John

D’Emilio says, “in contrast to some other recently identified medical conditions –

Legionnaire’s Disease and Toxic Shock Syndrome – the media gave AIDS little

attention, and government, especially in Washington, was loathe to devote

resources to combating the epidemic. When combined with the antigay rhetoric

that the epidemic spawned, AIDS initially highlighted the vulnerability and relative

political weakness of the gay and lesbian community” (D’Emilio 38). Yet the

relative political weakness of the gay and lesbian community was short-lived. Being

ignored led the gay and lesbian community and other marginalized communities to

form grassroots organizations to help spread information about the disease and
ways to protect one’s self and prevent transmission, and to demand that the

government pay attention to the growing pandemic.

GMHC (Gay Men’s Health Crisis) was formed in 1982 and gave birth to the

organization called ACT-UP, or AIDS Coalition to Unleash Power in 1987. D’Emilio

says that the birth of ACT-UP was one of the major political gains for the AIDS and

gay and lesbian movement of the 1980s. According to D’Emilio, the face of AIDS

and the activism around it gave the gay and lesbian community a new visibility.

ACT-UP used “confrontational tactics in order to prod public officials to take more

vigorous action against the epidemic” (D’Emilio 39).

Remembering AIDS: Queer Theory’s Limited Representation of ACT-UP

“For at the center of queer theory is not just the suspension of political

possibility, but also the implication that any concept of agency is

imprisoned within the play of irony”

- E. Savoy

While the large part of this project is to situate

ACT-UP in an historical context through oral history to

provide a better rendering of the group and why it was

so radical, I think it is important to look at how ACT-UP

was used in the 1990s to highlight just how the humanity in ACT-UP has been left

unexamined. To explain this point, two examples will suffice. In “You Can’t go

Homo Again: Queer Theory and the Foreclosure of Gay Studies,” Eric Savoy argues

that queer theory has focused so much on the ironic play and deconstruction of

identity that there is no longer a political movement behind the term queer. Further
he argues that identity and agency have been arrested, that it is impossible to

formulate any meaningful and purposeful identity.

Yet Savoy doesn’t want to say that all play on irony is bad. Rather he wishes

to get back to a type of irony where identity does matter, where identity is brought

to the fore of activism. Specifically he points to some of the placards used by ACT-

UP as sites of irony that are exemplary of how he believes that irony should function

in activism. One placard displays the text as the stripes of the US flag. The

message claims that the government is ignoring the lives and deaths of those

suffering with AIDS because of their social position. The irony here is using what is

considered a patriotic symbol to deliver an accusation of the government that the

flag represents. Another placard claims that AIDS is big business, “but who’s

making a killing?” Again the ironical play on words questions the real motives of

AIDS research in the 1980s.

I don’t want to do a theoretical critique of

Savoy here, but rather I want to question why

ACT-UP is remembered as being solely a radical

group. It seems that the people behind the

group have been left out, erased from history.

By choosing to remember ACT-UP in one way and deploying the memory in a

unilinear fashion, Savoy is able to play up the radical aspect of the group while

ignoring the individuals who produced the placards and performed the protests.

The erasure of the individuals behind ACT-UP is all too ironic, given Savoy’s project

of trying to return to a politics rooted in identity.

 Although not stated implicitly, the arguments Sue-Ellen Case presents in

“Towards a Butch-Feminist Retro Future” fit into Savoy’s implicit argument that

Queer theory and its play on identity has brought the foreclosure of identity politics

and coalition building. Case says that, “The failure of government institutions to

respond to the need for AIDS treatment became more and more reactionary. ACT

UP, formed in the late 1980s in New York, produced ‘live’ agitprop street

performances within a coalition. For a while. While some ACT UP organizations

survived, others, such as the ones in San Francisco and Seattle, split into ACT UPS,

or whatever. Lesbians split from gay men over the focus of concern: is AIDS a gay

male disease, or how do we also address the problems of the category ‘woman,’

straight or lesbian, of color who bear a high incidence of AIDS?” (Case 216). Implicit

within Case’s argument is the notion that the questioning of identity – that of the

category “women” and all its myriad intersections with race, class, and sexuality –

defeated the goal of performing coalitional work around the issue of AIDS.

Moreover, Case implies that the coalition of ACT-UP was almost utopian in nature

before Queer theory caused us to question identity and its political usefulness. For

Case, ACT-UP represented coalition building and identity politics at its finest –

identity based, radical, open and honest demonstrations that demanded to be seen

and heard.

Both authors are trying to find a way back to a meaningful identity politics

that can work within a coalitional framework while simultaneously embracing the

multiple identities of the members and groups who make up the coalition. Savoy

and Case both believe that Queer theory has fractured identity so much that it is no

longer politically useful and is, as Case believes, the very ideology that has cause

coalition building to become almost impossible.

 As the next section will show, Savoy and Case are able to use ACT-UP in this

manner because of the way in which we choose to remember past events. Kath

Weston explains how identity based movements are susceptible to a kind of

truncated memory. This selective memory allows the contemporary group

members to use actions, groups, even bodies as historical sign posts that function

to show both were the group was, and how far they may (or may not, as might be

the case with the queer movement) have come. Because Weston is able to point

out this truncated memory and how it functions in an economy of bodies and

groups, I think we can apply the concept to the problem of the limited interpretation

and representation of ACT-UP.

Selective Memory: Kath Weston’s Theory of Historical Memory

Whether these stories fetishize the Old Butch s an icon of pride

and resistance or as a victim born into a less liberated era,

her character remains frozen in time.

-Kath Weston

In her work Gender in Real Time, Kath Weston explores just how memory and

how we remember event and people can shape and change how we think of our

current situation. Weston believes that gendered and sexual bodies or groups can

come to represent a time in the past that is either heralded as “the good ole days”

or as a negative sign post that at once shows where we were and confirms the

positiveness of where we are now. She uses the figure of the Old Butch at the bar

to illustrate her theory. Weston says, “in both readings, the figure of the Old Butch

crept up on younger women, just like time and age and history. At the very

moment that she became embodied in the language of storytelling, representing

apprehensions about the narrator’s future or locked into the contours of ‘tradition,’

she offered a bellwether for perceptions of social change and the refashioning of

gender in a queer context” (Weston 116). Thus Weston believes that, through the

act of narration, bodies can be used to represent whole eras of time that demarcate

social change for the narrator. Whether this demarcation is negative or positive is

up to the manipulations of the storyteller, and as these stories are repeated, these

historical bodies become frozen in time. Thus we are able to take large amounts of

time and make them manageable and useable through a reductive act of

remembering. Weston believes that this view of history is anything but accurate, as

some voices are absent from the memory: “These are not random absences, but

absences structured by inequalities and by a narrative that bifurcates time into the

forward-looking now versus days long gone, the proceeds to claim tomorrow for the

teller” (Weston 117).

I argue that part of the reason that theorist like Savoy and Case can use ACT-

UP in very unilinear way is because of the ways in which they cite a specific

historical narrative in order to better serve their respective arguments. Just as the

Old Butch at the bar becomes the “bellwether” of social change, so too is ACT-UP an

historical marker for a time long gone – the good ole days. While this act of

remembering conjures up feelings of nostalgia and is by no means entirely

negative, I believe it is a limited view of ACT-UP. Remembering the group in such a

fashion assumes that there was complete commonality within the group – which is

by no means the case. Moreover, the radical nature of the group is cited

repeatedly, yet there is no discussion about the lives of the people within ACT-UP,

their fears, frustrations, and personal achievements. If we chose to look at how we

remember and narrate such memories, I believe that we will begin to question if

how we remember and narrate events past is really working toward social justice.

It seems that there is a great divide between Queer theory and the desire to

return to identity politics that shows no compunction in its radicalism. How can we

span this divide? In the next section we look at three different personal stories from

members of ACT-UP. These narratives show that the group was radical in nature,

yet pays attention to the multiple and personal identities of the participants. In a

way, situating ACT-UP historically while calling attention to multiple identities serves

the goals of both Queer theory and identity-based politics. The personal and

multiple identities are brought the fore of politics, thus deploying the multi identity

of Queer theory, while creating a politics that is unequivocally located in meaningful

identity.

Voicing the Personal: the ACT-UP Oral History Project

The ACT-UP Oral History Project seeks to record the memories of those who

were involved in the group from its inception up to the present day. These group

members share why and how they started working with ACT-UP and how their

involvement changed their lives. This repository of oral histories based around this

one group does a wonderful job of showing both the radical and in-your-face nature

of the group while showing the humanity and the individuals behind the group.

Some of the interviewees were straight allies who had friends with AIDS, some were

gay men living with AIDS and looking for answers. In short, ACT-UP was a radical

response to humanity being ignored, and it would be a disservice to the members of

ACT-UP to simply point to the radical demonstrations without paying attention to

the personal stories behind the actions.

Jean Carlomusto

Jean Carlomustro (aged 50 as of 2009) attended New York University in the

1980s and taught a class in educational media. Through one of her projects with

her students, she came in contact with Joey Lianti, who was a member of Gay Men’s

Health Crisis. When none of her students wanted to pick up this group for their

class projects, Jean began volunteering for GMHC. After helping the group with

various film and educational projects, Jean became a full-time employee of the

GMHC. The interviewer (Sarah Schulman) asked Jean what it was like to volunteer

for GMHC and to be constantly surrounded by people living with HIV/AIDS:

Jean: How did it affect me? Initially, I think I was kind of naïve, because I

hadn’t lived through that kind of situation before. I had a number of my

supervisors who were telling me that they had just tested positive, and then

it seemed like a year later I was cleaning out their desk. So as I unpack it,

the cumulative effect of this grief did take its toll on me. I think it made me

much more clear about my intentions when I decided to become a caretaker

for someone, more so now because I understand that that is really a

commitment and what that commitment means … let’s just say, [that] was

something that led me to look for a deeper meaning in everything around

me.

Jean claims that her initial interactions with people living with HIV/AIDS were

naïve at best. But through her participation in the group, she came to appreciate

and understand what it meant to be affected by the disease. She became involved

with the group out of an initial concern for the people affected around her, but
through her involvement came to a deeper understanding not only of HIV/AIDS, but

how people live and die with it.

Jean’s first memories of ACT-UP capture both the radical nature of the group

and the humanity of the group. As Jean grabbed her camera and headed to a local

protest in New York, she describes the scene she caught on film:

Jean: On the morning of the first demonstration, I picked up my camera and I

went down to Wall Street just to see what was going on. It was kind of

amazing that day, because I surprised myself. There were a lot of police

around. And the event, everybody was very skittish, more so that in

subsequent actions, when people really knew that the drill was around ACT-

UP actions. But in this one, especially when I look at the footage now, you

can see a lot of people were clearly nervous about what they were doing.

Jean describes how the protesters looked the morning of the first protest.

She says they looked nervous. And while it could be that this group was new and

people were unsure of how the protest would go, I’m more inclined to think that

their showings of uneasiness might also be related to the general feelings

surrounding HIV/AIDS at the time. The members of ACT-UP were looking for

answers, and demanding them through protest.

That day at the protest, Jean met Dave Meieran and Gregg Bordowitz. Their

relationship evolved as all three of them were interested in filming the protests not

only to cover the events, but also to perform police surveillance. The police

surveillance helped document the police force’s excessive use of force while also

educating other protesters on how to function at a demonstration. By being

involved with ACT-UP, Jean felt a sense of self-worth and was passionate about her

work that used every bit of talent she had:

SS: I that what’ really interesting is, in that moment back then, what did you

think the future was going to look like? Because that’s what your actions

reflected – a certain vision?

Jean: I guess to really go back and capture the true level of my own naivete;

it would be like the anti-war organizing. By that, I mean the war would end.

We would bring the boys home. That part, over time, was the hard part to

deal with – that there was not going to be a distinct end to the AIDS crisis. In

fact, it was going to continue to mutate and exhaust resources.

SS: So you were really in the urgency of the moment, and you were using all

your talents.

Jean: Yeah, for the first time I really felt immersed in what I wanted to do.

I’ve always wanted to make films and videos. And being able to use this

ability as part of a community that I felt really ensconced in was a truly

wonderful experience.

While Jean’s narrative points to the radical implications of the group ACT-UP, her

story also show her personal reason for participating in the group. Not only did she

help those around her and come to a better understanding of the AIDS crisis, she

was also provided with an outlet to use her talents and find a sense of belonging to

a group that both needed and appreciated her work. This kind of personal story is

often left out or glossed over in theory. We may get to hear about the radical

demonstrations and the provocative placards, but somehow the personal side of the

story goes missing.

Michael Petrelis

Michael says that he was aware of gay people from an early age: a teacher

and his cousin were among the gay people he knew. In the early 1980s, Michael

moved to New York from San Francisco. Once in New York, he reconnected with

some of his friends who were starting to get sick:

Michael: They were just two guys that I got along with really, really well.

When I moved back to New York, I got back in touch with them, saw them a

little bit, and Mel started getting sick – specifically with diarrhea that he could

just never get rid of. Then he got fevers, then he lost his appetite.

Michael’s first encounter with AIDS caused him to worry about his status.

Michael was diagnosed with AIDS in New York, and, thinking he would soon be dead,

he broke down in the doctor’s office. Thankfully his doctor put him in touch with

GHMC, which he said would help Michael draw up a will and “figure out what you’re

going to do.” Michael’s involvement with GHMC grew, and he soon became

involved with ACT-UP.

SS: What was your first big action with ACT UP, to do the New Hampshire –

Michael: No, my first big thing was the first one! Oh please, no I was at the

one – Wall Street

17. I was one of the Wall Street 17! – the first crew of us to get arrested.

….

SS: How has the meetings grown before the action? Were there more and

more people every week? Or, was it after the action that people really started

to come?

Michael: I think it was after the action that we increased in numbers of

 people coming to meetings. I thought that action on Wall Street was just

right. And, I remember being arrested with a woman who was teaching a

Saturday morning yoga class for AIDS patients named Preema Lee…

As he states, Michael was one of the first to be arrested at the Wall Street

protest, but what is interesting about his narration is how he has a sense of

belonging to the group. He’s a member of the first seventeen to be arrested, and

he specifically cites one member – a yoga teacher for AIDS patients – when recalling

the event. Moreover, he goes on to name a few others that he can remember. This

way of narrating the event shows not only the feeling of being a part of some larger

group, but also points to the individuals who make up the group.

Although the protests brought many people of different backgrounds

together, that doesn’t mean that ACT-UP was totally without dissonance. When

asked about the class conflicts within the group, Michael expressed that some of

the “more educated” members of the group were at odds with the working class

members.

SS: You were talking before about some of the class conflicts inside ACT UP –

do you think that – because Gerry came from a working class Irish family that

you guys connected in some way? Because you were saying – like in T&D,

you felt that people were snobby or condescending,

Michael: Yeah, in the wrong way. Look, Iris Long, a very educated, chemist

type with a Ph. D. after her name and everything, had more than enough

time to explain to the “average AIDS patient” some complex issues about

drugs and side effects. Whereas others, such as Mark Harrington, I felt were

out to overly impress you with their knowledge and would talk quickly or
 write 30 page papers on something that you couldn’t get through, unless you

went to Harvard or something.

This part of the interview indicates that, while there were feelings of cohesion

at times in ACT-UP, there were definitely some internal differences with respect to

class. Educational and work background were problematic for the group, and

perhaps led to the fracture of the group as differing opinions about the future and

goal of the group changed. Nevertheless, this narration shows that, although there

were differing attitudes, opinions, and class issues, the group managed to feel a

sense of cohesion while also acknowledging their differences. Again, this reading of

the group supports both Queer theory’s project of multiple identities that are

socially constructed, while also working for a radical politics that is firmly grounded

in identity. In essence, Michael’s narrative provides a way to bridge Queer theory

and identity politics, showing that the two projects actually have much more in

common than they have differences.

Ann Philbin

Ann Philbin was an art curator in New York in the 1980s. Because of her

social positioning and through some of her art friends, she became involved with

AmFAR (American Foundation for AIDS research) and hosted several fundraisers for

the organization. She commissioned one campaign that displayed a male couple, a

female couple, and an interracial couple kissing. These ads were placed on

billboards and on busses to show provided the public with a jarring image. Although
Ann does not remember specifically how she began her work with ACT-UP, she

indicates that she worked in much the same fashion for ACT-UP. She and her art

friends were part of the meetings because, as she says, the art world was losing

people in droves.

SS: So here you are, the art world – first of all, why do you think the art world

showed up for this?

Ann: Because we were losing people in droves. And it was so clearly

epidemic proportions for the art world. It was just – it was such a time of

huge grief, whether you were a dealer or a curator, no matter who you were,

it was very clear that this was- that the world was changing right in front of

us because of this. The whole art world, the trajectory of the art world, the

market place – everything. It was really – it was frightening.

Because the AIDS epidemic was hitting the art world so hard, Ann couldn’t help but

be affected by it. What’s interesting about her involvement with ACT-UP – and what

she alludes to in the passage above – is how the art world changed because of the

AIDS epidemic.

SS: How did it change the trajectory of the art world?

Ann: Well, in a lot of ways, I think – it’s not – I guess not just the art world,

but the creative world. I think people are very, and it’s been said a million

times, clear on the fact that we don’t know how the world changed by the

losses, but we know that it did. Because the losses, the people that died,

were such huge forces, creative forces, and talents that by extension, the

world changed by virtue of their loss…

 This is just one of the myriad stories that theorist lose by painting ACT-UP as

a solely radical group. Because of her social positioning and her involvement with

the group, Ann is able to give insight into how the AIDS epidemic affected a group

of people in New York – the artists. Not only did Ann help the artist show and sell

their work, she was their friend. The sense of loss to must have been huge as Ann

continued to hear about her colleagues dying.

Like Michael, Ann talks about some of the tensions within ACT-UP. While

Michael was less receptive of the differences, Ann thought the tensions were good

for the group because the tensions allowed issues like race to constantly be in the

foreground of conversation.

SS: And now we can move on to the racial issue and ACT UP. So how would

you characterize that, that tension?

Ann: Well it was a constant tension because – and it’s so great that is was a

constant tension, you know. I mean, that was what was so great about ACT

UP, is that people kept it front and center. And it was hard for people, but –

and again, my sense is anyway, that the women led the way with that. You

know, really making sure that the people of color in the room got their voice

and – meaning that the women of color more often than not were the ones –

it just – I had a sense that that was the place that past lessons were learned

at ACT UP.

Past lessons can be learned, but also, no one has ever figured out how to

keep an activist organization from tearing itself apart, because of exactly

those issues. I mean, the women’s movement is a real – you know, one

casualty after another of women’s organizations because of those issues.

 Like Case, Ann believes that the tensions within any activist group will

eventually tear the group apart. Yet, despite her beliefs, Ann thinks that the

tensions were productive for ACT-UP because there was a constant examination of

race and class within the group. The various intersections of identity were never

allowed to fade into the background. Rather, they were part of the foreground, a

constant lens through which the work of the group would be shaped and changed.

These interviews provide a whole new way to look at the New York chapter of

ACT-UP. While all three agree that the work of ACT-UP had revolutionary impact on

the AIDS crisis, it’s important to note just how these people differ in their

perspectives. Just by looking at their various backgrounds – university instructor,

person living with AIDS on disability, and art curator – we can see just how all type

of people with different identities and social positionings were attracted to ACT-UP.

If we chose to remember ACT-UP solely as a radical group, we miss these detailed

stories that show just how fractured identity can in fact harbor a space for cohesion

and social justice.

Conclusion: A Call for Multiple Memories

Kath Weston’s theory of selective memory shows just how we remember and

(re)narrate events and memories allows us to make selective and limited renderings

of history. I would argue that ACT-UP has been, for Savoy and Case, made into an

historical sign post, making the group one dimensional in their history. Moreover,

this flat rendering of ACT-UP calls for a politics that is based in identity while

seemingly against the multiple and fluid identities examined in Queer theory. Yet

when we look at the stories of those involved with the group and place ACT-UP in an

historical context of the AIDS crisis, we are able to get a much more nuanced read
of the group and its members. This approach allows us to bridge queer theory and

meaningful identity politics because we are attenuating to both the multiplicity of

identity while grounding social activism firmly in identity.

Taken further, this approach should allow us to reposition how we remember

AIDS activism and further inform how we go about activism today. All too often

historical claims allow us to forget that people actually lived through such a time as

the AIDS crisis. By looking at the myriad stories available to us, and allowing for

contradictions and identities to coexist, we are able to gain a better understanding

of an historical period and in the individuals that made up the collective of ACT-UP.
 References

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purposes: lesbians, feminists, and the limits of alliance. Bloomington, IN: Indiana

University Press.

D’Emilio, J. (2002). “Cycles of change, questions of strategy.” In C. Rimmerman, K.

Walk, C. Wilcox (Eds.) The politics of gay rights. Chicago: Chicago University Press.

Savoy, E. (1994). “’You can’t go homo again;’ queer theory and the foreclosure of

gay studies.” English studies in Canada, 20(2), 129-152.

Shulman, S. (Interviewer) & Philbin, A. (interviewee). (2003). Oral History [Interview

transcript]. Retrieved from ACT-UP Oral History Project: www.actuporalhistory.org

Shulman, S. (Interviewer) & Petrelis, M. (interviewee). (2003). Oral History

[Interview transcript]. Retrieved from ACT-UP Oral History Project:

www.actuporalhistory.org

Shulman, S. (Interviewer) & Carlomusto, J. (interviewee). (2002). Oral History

[Interview transcript]. Retrieved from ACT-UP Oral History Project:

www.actuporalhistory.org

Weston, K. (2005). Gender in real time. London: Routledge.