Documentation:Open Case Studies/GRSJ306/Act Up New York

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What is HIV/AIDS?

Human Immunodeficiency virus (HIV) once contracted is a life-long condition. This virus attacks the body’s immune system. More specifically, HIV attacks CD4 cells (T-cells) that help the immune system fight off infections. If left untreated, the lack of T-cells due to this attack results in the weakening of the body’s immunal response.

Acquired Immunodeficiency syndrome (AIDS) is the final stage of an HIV infection. AIDS occurs when the number of T-cells drastically drops below what is adequate to fights off infections. Within this stage the immune system is damaged enough for the body to become extremely vulnerable to opportunistic infections that result in death.

Currently, not everyone with HIV escalates in condition to AIDS. However, this is dependent on treatment and access to health care and medications. Without treatment, a person diagnosed with AIDS typically has an estimated survival of three years. A person with AIDS that has already contracted a dangerous opportunistic infection has a life expectancy of one year. It is imperative that a person with AIDS has access to medical treatment to prevent death.[1]

HIV/AIDS as an Epidemic

In the early 1980s AIDS was found to be the cause of death for hundreds of people in the United States. The population mainly affected at the time were white gay men. However, as AIDS become more prolific through the 1980s, cases among minorities, especially African Americans, rapidly increased. By 1996, male-to-male sex was the most common mode of transmission among persons reported with AIDS (46%) followed by injection drug use (25%) and male-to-female sex (11%). Persons aged 20 – 49 were the largest demographic of those diagnosed with AIDS, at an estimate of 85%. The incidence of AIDS increased at a rapid rate through the 1980s and peaked in the early 1990s before declining around 1996 due to some shifts in politics and awareness due to activism, and medical discovery. From 1980-1996 there were 273, 024 known deaths in the United States due to AIDS. Current estimates for the total deaths in the United States due to AIDS are in the range of 500,000 people.[2]

HIV/AIDS as an Endemic

The HIV/AIDS epidemic that swept the United States can be seen as an endemic. An endemic is, “a biopolitical event of the calculated distribution of life and death capacities in the management of populations as health threats.”[3] During the the 1980s to the late 1990s, HIV-AIDS was highly stigmatized through its representation as a ‘gay-disease’. Many people believed that extreme measures should be taken towards those with HIV/AIDS such as complete quarantine. Others believed that HIV/AIDS were the just desserts of those partaking in risky behavior, such as queer relationships and sex. People with HIV/AIDS were highly marginalized and oppressed during the time of the HIV/AIDs crisis as homophobia remained a main-stay of the U.S socio-political climate.The Reagan administration during the epidemic was a Republican party with extensive affiliation with right-wing anti-gay ‘morality’ groups. Due to the over-representation of queer persons as carriers of HIV and AIDS and the status of people with HIV/AIDS as deviant citizens and oppressed peoples, the Reagan administration largely abdicated their role in tackling the HIV-AIDS epidemic. This resulted in the rampant spread of HIV-AIDS and the continued death of hundreds of thousands of Americans before any drastic action was taken. In this way, the death of those with HIV-AIDS can be seen as a targeted result of homophobic socio-political climate instead of a sweeping epidemic, where death swoops down randomly upon a population.[3]

Reagan's Response to HIV-AIDS (1982-1987)


  • Number of known deaths in the U.S during this year: 853
  • The Gay Mens Health Crisis is founded in New York City
  • Reagan has not publicly mentioned the word ‘AIDS’
  • Larry Speakes, press secretary for Reagan’s administration, jokes about AIDS at a press briefing


  • Number of known deaths in the U.S during this year: 2,304
  • Reagan has not publicly mentioned the word ‘AIDS’


  • Number of known deaths in the U.S during this year: 4,251
  • Reagan has not publicly mentioned the word ‘AIDS’


  • Number of known deaths in the U.S during this year: 5,636
  • Reagan first mentions AIDS at a press conference in response to a question


  • Number of known deaths in the U.S during this year: 2,960
  • Cumulative known deaths: 16, 301
  • Reagan publicly mentions AIDS again in his message to the Congress on America’s Agenda for the Future on February 6, 1986


  • Number of known deaths in the U.S during this year: 4,135
  • ACT UP is founded in New York City in March
  • AIDS Memorial Quilt started up in San Francisco
  • Reagan makes first major speech on AIDS on April 2cnd, 1987 [4]

Origins and Beginnings of the organization

Silence = Death. Public Domain, via Wikimedia Commons

ACT UP was founded by activist and playwright Larry Kramer by conducting a meeting at the Lesbian and Gay Community Services Center in New York which called for drastic action against the US government’s inaction with regards to the AIDS pandemic. Kramer expressed a sense of panic as an overwhelmingly high number of people were dying of AIDS in such a short time.

One of their objective was to push for “the release of experimental AIDS drugs” and to put pressure on pharmaceutical companies to make these drugs more affordable to any people who were HIV+.[5]. ACT UP, motivated by anger, wanted to expose the bureaucracy and the profit-making garnered by pharmaceutical companies and the government. They also criticized the Centers for Disease Control’s (CDC) definition of AIDS exclusively directed only to gay men. This definition discriminated against women and thus, has prevented women whore HIV+ from getting proper AIDS treatment.[6] ACT UP’s mission statement says, “we challenge anyone who, by their actions, or inaction, hinders the fight against AIDS.”[7]

ACT UP has strategically used the media in mobilizing and communicating their objectives and concerns across New York, which later on has attracted nationwide response. Their efforts have been greatly influenced by the Civil Rights movement. ACT UP followed the Civil Rights’ movement direct action strategies, “boycotts, marches, demonstrations, and nonviolent civil disobedience” in attracting more supporters and the media.[5] The “Silence = Death” Poster Project has also teamed up with ACT UP through their symbolic and profoundly striking pink triangle poster with the slogan “Silence = Death”. This poster transcended the movement beyond what their original objective of their fight against AIDS towards addressing a brewing political crisis. [8]

Act Up Oral History Project

ACT UP Oral History Project is a series of interviews of the surviving members of ACT UP New York. The project is principally run by Jim Hubbard and Sarah Schulman, which aims to preserve the legacy of the “forgotten resistance” and to showcase the complexity and diversity of the movement.[6] This project explores the motivations that has led to this collective action in prompting for a concrete change in the realm of the legal system, scientific and medical research, health care policies through artistic and political activism.[9]

The interviews included key members from the early days of ACT UP such as Larry Kramer and the artist and member of the Silence = Death project Avram Finkelstein, as well as historical and reflective accounts from the women of ACT UP. In 2012, Jim Hubbard presented the United In Anger which details the history of ACT UP as an emotionally-driven grassroots movement.

Strategies and Agenda of the Movement

Objectives of ACT UP[10]

Aids is identified as a political crisis by ACT UP. They are a group united in anger and committed to direct action to end the AIDS crisis. They strike the conversation about aids by meeting with government officials, distributing the latest medical information protest and demonstrate. ACT UP is in a state of constant evolution. Members skills and experiences are valuable in the fight against AIDS. They currently have one big headquarter in NYC and a smaller branch in San Francisco. In NYC, they have ACT UP MEETINGS every Monday.

Organizational Structure[11]

ACT UP don’t have a board of directors, set up intentionally so that people are given equal voice. They Have some for organization eg. Action Committee, Fundraising, Outreach, Treatment and Data Committee. ACT UP felt there was a need to make every member a leader, rather than having a few members holding the power. That is why there is no president or Board of Directors in ACT UP. It is run as openly and democratically as it is. ACT UP has no paid staff; everyone is a volunteer.

Organization of meeting [11]

Their meetings are ordered by having

  • 90-second statements

announcing planning meetings, updates, and ACT UP activities.

  • Life Saving Information

Critical up-to-date medical information which may impact members' medical treatment decisions.

  • Actions and Zaps

A working group or individual presents an idea for an action, pertinent information, and a proposed budget. The floor can vote to endorse or reject the action. The sponsoring group will also request assistance from the general membership in making the action happen.

  • Reports

on recent actions, reviews of effectiveness of these actions, and discussions of support of members who committed civil disobedience

  • Operational Proposals

for modifications to the internal workings of ACT UP

Strategies for Communication [11]

ACT UP’s slogan is “We advise and inform. We demonstrate. WE ARE NOT SILENT”. ACT UP has developed numerous tactics for communicating dissatisfaction with institutional indifference to the AIDS crisis. These tactics are divided into two categories, called actions and zaps.

Actions [11]

The AIDS Coalition to Unleash Power, a group against AIDS, protests in New York City against the Anti-Homosexuality Bill in Uganda. By riekhavoc - originally posted to Flickr as uganda_action_ 414.jpg. CC BY-SA 2.0, via Wikimedia Commons

Actions are public protests or demonstrations organized by a working group within ACT UP. They specifically target a person or organization who is not responding effectively, or morally, to the AIDS crisis. Actions try to accomplish three goals:make specific demands for change from the target; increase public awareness, concern, and knowledge of AIDS issues; expose, through media coverage, the inaction or improper actions of the target. Characteristics of Actions include: a planning period; an extensive promotion of the action through flyers, handouts, contacting other AIDS related groups, media large turnout of ACT UP members, coalition partners from other boroughs, cities, and states, as well as participation of other concerned people.All ACT UP actions must be approved. This approval is usually a two-week-long process. The working group for a particular action presents the target, concept, and budget for the action at one meeting. At the following meeting, questions, suggestions, alterations, discussion, and usually, approval of the action takes place. An important component of most actions can be non-violent civil disobedience. People in ACT UP who choose to participate in Civil Disobedience take responsibility for their decision to risk arrest.No one is required to risk arrest (although police behavior is not always predictable and people are occasionally arrested who are not breaking the law). Everyone who wants to risk arrest is strongly encouraged to attend a civil disobedience training prior to an action. ACT UP Civil Disobedience training includes discussion of why one might want to be arrested, what your rights are, the procedure that those arrested usually undergo, what the usual legal penalties are, etc.


Zaps are designed to address AIDS issues needing immediate action by ACT UP. Zaps are a method for ACT UP members to register their disapproval of and anger toward the zap target.Zaps usually have more specific targets than actions. Because of this focus, numerous zapping techniques have been developed. ACT UP zaps individuals or organizations by: sending postcards or letters; invading offices and distributing fact sheets; sending (lots and lots of) faxes;picketing; outraged (and sometimes outrageous) phone calls.t The more zappers who zap the zappee the better the zap. They challenge anyone who, by their actions or inaction, hinders the fight against AIDS. This includes: anyone responsible for inadequate funding for AIDS research, healthcare, or housing for people with AIDS, anyone who blocks the dissemination of life-saving information about safer sex, clean needles, and other AIDS prevention, and anyone who encourages discrimination against people who are living with AIDS.

ACT UP's Accomplishments[11]

  • a radical change in the procedures used by the Food and Drug Administration (FDA) in the release of experimental drugs;
  • developing a condom distribution plan that was approved by the NYC Board of Education in February 1991 and defending that program from subsequent attacks;
  • distributing thousands of clean needles to intravenous drug users, along with information about safe injection techniques and safer sex. This program directly challenged the law that makes needle possession a criminal offense;
  • forcing the Center for Disease Control to expand the definition of AIDS to include opportunistic infections common to women;
  • significantly lowering the outrageous prices of pharmaceuticals through campaigns of direct action.
  • Shed a lot of light to December 1st World Aids Day

Developments [11]

  • Anthony Fauci, Director of the National Institute of Allergies and Infectious Diseases (NIAID) and the person responsible for overseeing the government's AIDS clinical trials that many of these trials are unethical, fraudulent, and misdirected.
  • Mario Cuomo that inadequate funding for AIDS services is killing us and that it is unacceptable to balance the state budget with people's lives.
  • Pharmaceutical industry for attempting to make profits at the expense of the lives of people with AIDS.
  • AIDS framed as an issue in the 1992 Presidential elections and held President Clinton responsible for the promises he made as a candidate. We are committed to protecting the lives and well-being of people living with AIDS.

Critical Assessment of Strategies

The very strategies defining Act Up as a unique social movement and the center of LGBTQ activism in the 1980s arguably led to its demise and loss of momentum. Indeed, as described above, the decentralized, quasi-anarchical model of organization might have been the epitomy of democracy that Act Up prided itself upon, yet might have also in its chaos made the organization lose its sense of purpose. Several episodes addressed above historically hinted at the risk of secession, particularly women’s attempts at seceding from Act Up materialized through the overlap of AIDS with reproductive health issues. Indeed, gay women were particularly targeted by demeaning media coverage with Cosmo Magazine alleging that Women were not victims of AIDS. Additionally the Catholic Church in New York, exerted coercive, lobbying power targeting homosexuality as a whole, but also women’s access to reproductive healthcare services such as abortion or contraception, doubling the effort that gay women thus had to engage in to gain equal access and attention that their male counterparts.[12]

The heavy reliance in affect as an effective political tool in social movements of protest such as Act Up's might have condemned it. The main purpose of Act Up focused on reconstructing the image of the AIDS affected from a passive victim to an active protester. Nevertheless the linearity of this narrative ignored the affective ambivalence existing between gay lives and deaths at the time. Indeed, activists of Act Up managed to create an ‘‘affective network’’ which despite being its source of power, eventually had the opposite effect. Indeed, the collective network failed at providing a comprehensive discourse around pride and shame , de facto creating internal divisions, excluding and marginalizing certain groups.[13]

Anarchical organization and Aggressive media use

Additionally, the segmented and fractionated organization of Act Up, with small affinity groups which were units of accountability and micro-initiative, eventually erupted with de facto factionalism in cities such as Boston (1998) or San Francisco (2000), creating their own chapters, adapted to state circumstances. The grassroots structured, qualified as “democratic to a fault” was subjected to a sometimes inefficient and hardly accountable delegation. Internal bureaucratic battles such as those for internal leadership of the movement, or r simply whether Act Up should be an independent organization as opposed to a compromising association for increased pressured of the system obstructed the struggle.

The issues of aggressivity of communication strategies was key in defining Act Up’s role in the fight for AIDS, with aggressive messages and posters aimed at forcing public attention and shifting mediatized depictions of victims, changing the public imagery of an issue otherwise misrepresented. The graphics surge was initially very raw, aiming to shock the public but eventually adapted itself to conform with more mainstream media coverage and advertising. The sexual freedom and position of LGBTQ community in the world was part of the hidden agenda behind fighting the epidemic.

"A combination of serious politics and Joyful living'" is what kept the movement alive according to activists such as Maxine Wolf.

The aggressivity of the message and the distribution in key places such as churches or high schools, although effective, infuriated the general public and brought the eventual banning of certain activities of the genre as well as incarceration of protesters and police violence. Inspired by the success of peaceful protest in the Civil Rights movement, Act Up activists succeeded at overcoming the difficulties surrounding their media strategy.[14] The documentary portraying the group’s activity and historical implications in the fight for AIDS United in Anger: a history of ACT UP collects activists first hand witness of the difficulties involved while fighting the epidemic in New York at the time.[15]

The documentary depicts a general public which was characterized by homophobia and fear to the extent of arguing the need for quarantine, recognition tattoos or interning concentration camps for homosexuals. Act Up did not follow one model of institution, it was composed of affinity groups with a separate/outside life. This organization, described by Anna Blume was essentially:

"Organic, and came out of necessity. Affinity groups were pure necessity… Act Up needed the freshness of irreverence and irreverence cannot come from consensus. Affinity groups allowed for groupings of like-minded people to do whatever they want."[15]

The model, inspired by CRM and Women's emancipation movements organized support networks were everybody was familiar.

Act Up Oral History website constitutes an attempt at organizing chaotic episodes into a cohesive social narrative. The internet as tool for creation of alternative media narrative, in which the movement added emphasis throughout its activities, allows for dissemination in a no hierarchical form. Marginalized groups can access these tools and generate knowledge, epitomizing the interconnectedness created by globalization and Act Up’s communal delegative organization strategy. Act Up birth and primary objective was heavily tied to the circulation of accurate narratives and experiences with Aids but the international characteristic of their network of activity could have potentially endangered the cohesiveness of their message. Some scholars such as Atkinson, have argued that through "constitutive rhetoric leading to a Cohesive Multiplex of Narratives (CMN) that unite and actuate a community of people who share a common identity to resist HIV/AIDS discrimination."[16]

Failure at Intersectionality

During ACT UP's Demonstration at the Department of Health and Human Services, Washington D.C. Vito Russo declared:

"If I’m dying from anything, I’m dying from the fact that not enough rich, white, heterosexual men have gotten AIDS for anybody to give a shit.[17]

Documents such as these gathered through Act Up Oral History project hints at a key cause for the final internal split occurring in the organization. Indeed, some activists members of affinity groups point at failed intersectionality as Act Up set its agenda of priorities. Indeed, Ming, funder of the Asian Pacific Islander Coalition on HIV/AIDS [18] outlines a problem of language in the information the group distributed.The proper translation of the overarching message and the effectiveness of that message in particular communities that lived sexual orientation and AIDS stigmatization differently, as well as the choice of person doing the counseling for that community was crucial.

"I think there was a general perception in the community that ACT UP was a white organization [and] some people of color groups (and there are different degrees, right?) are quite wary of ACT UP." [18]

The fact that Act Up purposefully excluded further input from minority groups to influence the image and the message characterizing the organization to secure favorable media coverage was a source of tension between surrogate groups.

"I think the actual conflicts – like I was saying – I don’t remember what that big argument was about, but generally speaking, I don’t think that issues about women and AIDS, issues about AIDS and HIV in people of color groups are really on people’s minds, other than as a – the sort of litany." [18]

As Jean Carlamusto, one of the active members later stated on an interview as part of the Act Up Oral History Project:

"The movement began to eat itself up from the inside[...]I thought I could get the stigma and everything that came along with it. But at that time, even then, the images you saw, or the image that was being delivered, was really specific to gay men." [19]

Internal divisions

The 1990 Storm the NIH campaign for Inclusive clinical trial groups design revealed the internal conflict majoritarily responsible for the loss of momentum of Act Up. The debates and focus, the issues that Act Up was targeting were changing.The emergency situation (once diagnosed the death was fast approaching) led the people to turn into activists and focus narrow mindedly in one thing: what treatment they needed to survive. From this original “getting drugs into bodies” position, Act Up had evolved to focusing on the actual bodies that these drugs were about to get into.Indeed, people were dying faster according to their socio-economic background, race or sex. The range of wider issues that Act Up was engaging in an attempt to address intersectionality and historical difference between groups affected by the disease made it lose focus. The demographics of Act Up pushed for these transformations and eventually secede of their own initiative with the Women caucus 1989, for instance, and its redefinition of AIDS campaign before the Centre for Disease Control. The women caucus engaged in a legal strategy thus pushing for a diversification not exclusively of the issues but an adapted portfolio of strategies as well. This internal clash between immediate concerns as opposed to bigger issues, brought disenchantment with the organization’s social action. Its punctual successes were unquestionable but people were dying still, and fell prey to despair and fear, a feeling crystallized very well by José Fidelino's interview:

" I think the main one(conflict) was, there were two schools, of people who, one of them was focusing on getting the drugs through the pipeline and into bodies. And there was the other school in ACT UP that wanted to focus on getting people primary health, primary access to health care." [20]

Additionally, with the change of the perception of AIDS and its victims, Act Up’s hidden agenda surrounded the perception of homosexual orientation too.



ACT UP’s primary goal was to educate the general populace about the crisis about HIV/AIDS, specifically in an American context. Through this education, ACT UP changed misconceptions and stereotypes associated with the AIDS epidemic and brought attention to the treatment of people with AIDS by the American government.

ACT UP has also caused policy changes through their protest and lobbying work. A prominent example of this would be the protest of Northwest Orient Airlines, whom prevented people with AIDS to board their flights. ACT UP initiated a law suit against the airline, which they won, and forced the airline to change their discriminatory policy.

Current Existence

Although ACT UP chapters continue to still meet and protest, many of them are not as large as they were during the middle of the AIDS crisis. ACT UP New York and ACT UP Philadelphia are currently the most active chapters.

Because of the differences in values and internal pressure, there have also been multiple groups that have split away from ACT UP:

Housing Works

Created in 1990, Housing Works was created by members of ACT UP that fractured away from the original group because they wanted to focus on the issue of homelessness and AIDS. They argued that stable housing was crucial in the prevention of the spread of HIV and AIDS and to help those who are HIV-positive live healthy and successful lives.

Health GAP (Global Access Project)

Founded in early 1999, Health GAP is dedicated to eliminating barriers to universal access to affordable medicines for people with HIV/AIDS, in order to stop the spread of AIDS. They advocate for proper drug access and resources for everyone across the globe, particularly in the Global South.

Treatment Action Group

The Treatment Action Group broke away from ACT UP in January 1992, in order to focus on accelerating treatment research. Through advocation with multiple groups such as government scientists, drug company researchers and U.S. Food and Drug Administration officials, they sought to seek the speedy development of new HIV therapies and drugs.

International Collaboration

Although ACT UP originally started in New York, it has now expanded to all over the globe with the universal goal of ending the AIDS pandemic.

ACT UP has also collaborated with allies in the Global South in order to push for full access to AIDS medications.

Works Cited

  1. AIDS.Gov HIV/AIDS Basics
  2. CDC (Centers for Disease Control and Prevention). 2001. HIV and AIDS, United States 1981-2000.
  3. 3.0 3.1 Gill-Peterson, J. 2013. Haunting the Queer Spaces of AIDS Remembering ACT UP/New York and an Ethics for an Endemic. GLQ: A Journal of Lesbian and Gay Studies, 19(3), 279-300
  4. A Brief Timeline of AIDS.
  5. 5.0 5.1 The Body: The Complete HIV/AIDS Resource Website. 1998. ACT UP.
  6. 6.0 6.1 Schulman, Sarah. 2012. Changing the AIDS definition. Documentary.
  7. ACT UP. ACT UP NYC Information,
  8. ACT UP. 2013. The Silence = Death Poster, ACT UP,
  9. ACT UP Oral History Project. About,
  10. Act Up New York Website,New Member Packet
  11. 11.0 11.1 11.2 11.3 11.4 11.5 11.6 Act Up New York Website. n.d. Actions and Zaps.
  12. Act Up New York Website. 2003. Stop the Church,
  13. Rand, Erin J. 2012. Gay pride and its queer discontents: ACT UP and the political deployment of affect, Quarterly Journal of Speech, 98:1, 75-80
  14. Paula Bock, 2001. Graphic Anti-Aids Pamphlet Disgusting, Say Teens - `We Don't Need A Four-Letter Word To Get The Point Across' At Franklin, The Seattle Times,
  15. 15.0 15.1 Jim Hubbard, 2012, United in Anger,
  16. Atkinson, J.D. 2010. Alternative media and politics of resistance: A communication perspective, New York: Peter Lang.
  17. Russo, Vito. 1988. "Why we fight", Act Up Demonstration in Washington D.C, Video Transcript.
  18. 18.0 18.1 18.2 Act Up New York Oral History, Interview 005, 2002,
  19. Act Up New York Oral History, Interview 005, 2002,
  20. Act Up New York Oral History, Interview 057, 2004,