UNITED IN ANGER: A HISTORY OF ACT UP STUDY GUIDE

GLOSSARY

accelerated approval: In direct response to ACT UP’s concerns, voiced most powerfully at the “Seize Control of the FDA” demonstration in October of 1988, the FDA initiated the accelerated approval process, allowing for expedited access to AIDS drugs.  The approval process dropped from eight to ten years to as little as three, with a host of therapies for opportunistic infections available by 1992.  Accelerated approval permanently transformed the AIDS crisis, allowing hundreds of thousands of people with AIDS access to medications that extended their lives long enough so that they were able to move on to newer and newer drugs until their health could be stabilized and they could live full or almost full life spans.

action: “Actions are public protests or demonstrations organized by a working group within ACT UP. Actions 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. A demonstration or protest usual takes more than a week to organize and implement.” -From ACT UP: Actions and Zaps

ACT UP (AIDS Coalition to Unleash Power): “In March of 1987, ACT UP formed in New York City by a group of people as a diverse, nonpartisan group of individuals united in anger and committed to direct action to end the AIDS Crisis. We meet with government and health officials; we research and distribute the latest medical information. We protest and demonstrate; we are not silent. We challenge anyone who, by their actions or inaction, hinders the fight against AIDS. We challenge anyone who doesn’t work for adequate funding or leadership for AIDS research, health care, or housing for people with AIDS. We challenge anyone who blocks the dissemination of life-saving information about safer sex, clean needles, and other AIDS prevention. We challenge anyone who encourages discrimination against people who are living with AIDS.” -From ACT UP: NYC Information

ACT UP Oral History Project: The ACT UP Oral History Project is a collection of interviews with surviving members of the AIDS Coalition to Unleash Power, New York. The purpose of the project is to present comprehensive, complex, human, collective, and individual pictures of the people who have made up ACT UP/New York. The interviews reveal what has motivated ACT UP members to action and how they have organized complex endeavors. This information is intended to de-mystify the process of making social change, remind us that change can be made, and help us understand how to do it.

affinity group: “A group of people organized around a single intent, tactic, or focus for the purpose of executing specialized sub-actions during actions or demonstrations.”-From ACT UP Glossary

agitprop: Derived from agitation and propaganda, agitprop is a genre of art that contains an expressly political message.

AIDS Clinical Trial Group (ACTG): “The mission of the AIDS Clinical Trials Group (ACTG) Network is to develop and conduct scientifically rigorous translational research and clinical trials to (1) investigate the viral and immune pathogenesis of HIV-1 infection and its complications; (2) evaluate novel drugs and strategies for treating HIV-1 infection; (3) evaluate interventions and strategies to treat and prevent HIV-related co-infections and co-morbidity, and; (4) publish and disseminate results to improve care, and reduce or eliminate morbidity and mortality associated with HIV-1 infection and its complications.” -From AIDS Clinical Trials Group Network

AIDS Treatment Registry (ATR): A spinoff organization from the ACT UP Treatment and Data Committee, the AIDS Treatment Registry (ATR) created a database of all clinical trials testing drugs and therapies for the treatment of AIDS-associated opportunistic infections, allowing people with AIDS to track, monitor, and assess the trials and thus better inform themselves regarding their own health decisions.

Anti-War Movement: For more background into the anti-war movement, see here.

archival footage: Create your own definition from Unit 1, Discussion Guide, Section 2, Question 1.

AZT: “The first drug licensed to treat HIV. Today it is almost always used in combination with other anti-HIV drugs. Side effects include nausea, vomiting, and low red or white blood cell counts. Also used to prevent transmission of HIV from mother to fetus.” From The Body

For many in ACT UP, AZT came to symbolize several underlying problems with AIDS research, including profiteering, a “magic bullet” solution, and diminished hope.

Black Power Movement: For more information about the Black Power Movement, see here.

Centers for Disease Control and Prevention (CDC): “The Centers for Disease Control and Prevention, the US agency charged with tracking and investigating public health trends. A part of the US Public Health Services (PHS) under the Department of Health and Human Services (HHS), the CDC is based in Atlanta, Georgia. It publishes key health information, including weekly data on all deaths and diseases reported in the US and travelers’ health advisories. The CDC also fields special rapid-response teams to halt epidemic diseases.” -For further information https://www.cdc.gov/

civil disobedience: “Civil disobedience is a form of protest in which protestors deliberately violate a law. Classically, they violate the law they are protesting, such as segregation or draft laws, but sometimes they violate other laws which they find unobjectionable, such as trespass or traffic laws. Most activists who perform civil disobedience are scrupulously non-violent, and willingly accept legal penalties. The purpose of civil disobedience can be to publicize an unjust law or a just cause; to appeal to the conscience of the public; to force negotiation with recalcitrant officials; to “clog the machine” (in Thoreau’s phrase) with political prisoners; to get into court where one can challenge the constitutionality of a law; to exculpate oneself, or to put an end to one’s personal complicity in the injustice which flows from obedience to unjust law —or some combination of these.” -From Philosophy of Law: An Encyclopedia

Civil Rights: For more information about civil rights, see here.

clinical trials: “An experimental study in people to test the safety and efficacy of new drugs.” -From The Body

combination therapy: “Use of more than one drug to treat a disease or infection.” -From The Body

die-in: A die-in is a form of social protest in which protesters use their bodies to reference or simulate the bodies of the dead. Not only are ACT UP die-ins public reminders of the unseen dead, but they also demand public action: they force social and cultural institutions to take responsibility for the AIDS deaths by having to physically move the protesters’ bodies.

direct action: A particular form of social protest used by ACT UP, one with a long history in social justice movements.  While direct action can simply mean confronting a social ill head-on with little mediation, ACT UP members identified a problem and then inserted themselves within the gears of that problem in order to disrupt it, usually for a fairly limited window of time and always nonviolently.

DIVA-TV (Damned Interfering Video Activist TV): DIVA-TV was founded in 1989 as a video-documenting affinity group within ACT UP.  Its goal was to challenge the lack of informed coverage of the AIDS epidemic in the mainstream media and renew a sense of urgency about AIDS through video activism.

documentary film: “Contrary to narrative cinema…documentary filmmaking is concerned with the exposure and analyses of real facts and historical events…. Even though documentary cinema explores actualities, not all documentaries present the absolute truth a hundred percent of the time.” -From Elements of Cinema

drugs into bodies: An early imperative by ACT UP in response to slow drug approval by the FDA and a lack of access to experimental drugs.

the Floor: “Everyone in attendance at a general meeting; the supreme governing body of ACT UP.”-From ACT UP Glossary

FDA (Food and Drug Administration): For more information about the FDA, see their website.

Gay Liberation: For more information about Gay Liberation, see here.

“general population”: Create your own definition from Unit 2, Group Project #2.

Gran Fury: “Gran Fury was an artists’ collective devoted to AIDS activism through agitprop art. Named after the Plymouth automobile favored by the New York City police department, Gran Fury drew its membership from the ranks of ACT UP/NY (AIDS Coalition to Unleash Power, New York).” -From The New York Public Library’s Gran Fury Collection

HAART (Highly Active Antiretroviral Therapy): “Combination anti-HIV therapy, usually involving a protease inhibitor. Combinations of drugs have been found to be highly suppressive of HIV, and this strategy helps delay or avoid the development of treatment-resistant viral mutants.” -From The Body

informed consent: “A process of communication between a patient and physician that results in the patient’s authorization or agreement to undergo a specific medical intervention.” -From The American Medical Association

insider/outsider strategy: The “insider/outsider” strategy was crucial in changing the culture of scientific elitism and advocating for improved medical treatments for people with AIDS.  Small groups of deeply informed, often self-taught ACT UP members gained access to the inner workings of institutional science where their scientific knowledge combined with community insight to influence the upper-level decisions about AIDS science.  When faced with inflexibility on the “inside” of science, ACT UP would use direct action to apply very public pressure from the outside.

monontherapy: Treatment of a disorder with a single drug.

narrative film: “Narrative filmmaking refers to the types of movies that tell a story. These are the films most widely screened in theatres, broadcast on TV, streamed in the internet, and sold as DVDs and Blu-rays. Though fictional filmmaking is another term for narrative cinema, the word ‘fictional’ doesn’t imply that such movies are purely based on fictive events. In some cases, veracity and creation blend together.” -From Elements of Cinema

NIH (National Institutes of Health): For more information about the NIH, see here.

oral history: Create your definition from Unit 1, Discussion Section 2, Question 1.

parallel track: “Parallel track permits the treatment use of experimental drugs while controlled efficacy trials are ongoing, thus offering earlier access to promising new treatments to people with AIDS and HIV-related conditions…. The importance of Parallel Track lies in its potential to offer the widest possible access to new drugs for people who lack other-than-experimental treatment options, and to make it possible, at the same time, to proceed efficiently with drug licensing.” -From ACT UP Treatment Access- Activists’ Philosophies 

performance art: “Artwork conceived with the artist’s/performer’s body as central canvas, frequently in concert with other representational mediums (film, dance, sculpture, painting, photography), which invites active spectatorial engagement/interaction; a predominately visual mode of ‘story telling’ that embraces durational, sensorial and frequently a-narrative modes of that telling, pushing the physical extremes for both audience and artist. In that the artist’s body is canvas, this work is frequently rooted in questions of identity, identification, aesthetics, value, and the politics of representation. It challenges notions of coherence as essential to meaning and boundaries of ‘taste’ and aesthetics that dominate the mainstream art world.” -From Jules Odendahl-James, Duke University

PWA: Person or People with AIDS; a term preferred to “AIDS victim.” -From ACT UP Glossary

 political funeral: Public demonstrations of personal grief that, by violating the private act of memorializing the dead by placing corpses in open caskets and on public display, implicate the government and the wider culture in those deaths.

protease inhibitor: “Protease is an enzyme used by HIV to process new copies of virus after it has reproduced; drugs specifically aimed at this enzyme are called “protease inhibitors.” -From The Body

strategy: An overall plan for achieving a goal.

tactic: The specific action taken or task performed to implement a strategy.

teach-in: “Teach-ins help members of your group inform themselves and others about the background and facts concerning a particular AIDS issue. A teach-in, along with the materials you gather together, can continue to inform new members of your group, members of your community, and others about the issues. It can significantly enlarge the pool of people who feel competent to work on an issue. As part of the action-planning process, teach-ins enable everyone participating to be articulate and informed spokespeople without putting words in their mouths. Teach-ins provide an alternative to “experts” by enabling people without formal education or previous knowledge of a subject to become knowledgeable.” -From ACT UP: Teach-Ins

T&D (Treatment and Data) Committee: The primary scientific group within ACT UP.

visual argument: A visual argument, like a written argument, is a form of composition that follows a logic in order to produce meaning.  Visual argument, however, uses only graphics without explanatory text or prose (though the graphics may contain their own internal text).

Women’s Movement: For more information about the Women’s Movement, see here.

zap: “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.” -From ACT UP: Actions and Zaps