ACT UP (AIDS Coalition To Unleash Power)

ACT UP, AIDS Coalition To Unleash Power, is a diverse, non-partisan group of individuals, united in anger and committed to direct action to end the AIDS crisis, started in 1987. We meet with government officials, we distribute the latest medical information, we protest and demonstrate. We are not silent.

We are loud as we confront those who stand in the way of the fight against AIDS. We've told 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. We told 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. We took on the pharmaceutical industry for attempting to make profits at the expense of the lives of people with AIDS. We made AIDS 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.

We 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 include:

- 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.

There is a great deal to do in the fight to end the AIDS crisis. It is up to you to decide where you fit into that fight and how much time you have to commit. We encourage you to start a new group within ACT UP if there is no committee or working group that addresses your concerns and interests. ACT UP is in a state of constant evolution. Your skills and experiences are valuable in the fight against AIDS.

ACT UP Documents

ACT UP Explained
by Jon Greenberg

If part of my knowledge about life has come from AIDS and my view into death, another part of it has come from my involvement in an organization called ACT UP. Let's see if I can define it as I go along. The acronym ACT UP stands for the AIDS Coalition to Unleash Power. As history would force me to acknowledge, the acronym came first and then the words were found to fit the acronym. But, as truth would have it, both the acronym and its meaning, and the words which make the acronym and their meaning have a larger meaning and a significance which neither could have been aware of at their inception. The English, two-word verb 'act up' means to be naughty. It is a verb which parents use with their children to indicate being bad or naughty. As in, "Billy has been acting up so I sent him to bed without his supper." The type of misbehavior which 'act up' indicates is not so severe as to be morally wrong or even dangerous. It is simply the type of behavior which parents typically dislike because it is inconvenient and may make them look bad or feel uncomfortable. Usually it is the type of behavior which children engage in to test the limits of their parents authority.

ACT UP, the organization, does exactly what its name says. We do demonstrations, and act in such a way that the authorities (and in this case we mean government officials, researchers, politicians, the church and the law) feel is inappropriate but ultimately accomplishes our goal by bringing into focus the problems which they are unwilling or afraid to address. Once again, let me return to the official definition: ACT UP (AIDS Coalition to Unleash Power)is a diverse, nonpartisan group 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. Once again, when this statement was drafted in 1987, no one had any idea how true it would turn out to be. Only in retrospect are we beginning to understand what we are continuing to do.

It would take me too long or perhaps be too boring to explain every aspect of ACT UP (nor do I think I could, in fact, do it justice). Suffice it to say that because of ACT UP, AIDS and the public's perceptions of the disease and the institutions of our society have been radically transformed and changed. {I am in the process of writing a long piece on exactly how ACT UP, at least in New York, has accomplished and is continuing to accomplish its stated goal of "ending the AIDS crisis". The crux of that article, which I will surely send you when I have finished it, is that "crisis" is a state of mentality and ACT UP's process of identifying a problem, bringing it out into the open and creating or forcing institutions to take the necessary steps towards the implementation of the solution effectively serves to lessen the psychological state of crisis which AIDS causes in so many people.}

For the moment, however, the most important aspect of ACT UP's activities, that of demonstration and direct action, is the area that I would like to focus on. I believe that every action we do, has significance and meaning on as many levels and layers of the infinite experience as we are able to comprehend. Sometimes we are not able to see how completely meaning infuses our daily activities but that doesn't mean that the meaning is not there. It simply means that we have not yet been awakened to the meaning. In terms of ACT UP's demonstrations, I like to talk about internal and external goals. Naturally there is a great deal of overlap to these completely synthetic categories but nevertheless there is a grain of truth to what I am about to say.

An ACT UP demonstration has many aspects, all of which need to be explained at great length but which limitations of space and your reading patience (particularly in English) require me to limit to much less. There is the actual demonstration, with banners and signs and yelling and people marching around looking angry and getting angry. There is usually some sort of illegal activity which demonstrators do in order to get arrested. The act of breaking the law is a very important aspect of this process. This lawlessness gets the media coverage. The news reports call attention to the issue. This embarrasses those against whom we are demonstrating and gives them the excuse they need to implement the programs that very often they would have wanted to implement anyhow but which their fear of public reprisal prevented them from implementing. This is the external goal. This is what the public sees and this is how, externally, ACT UP actions work.

Internally, an ACT UP demonstration serves another function: that of empowerment. Empowerment is an interesting word in English--it is a word which doesn't exist properly in any other language. It means the process whereby one gains self-power. Not power over the self, but power of the self to function completely in the world. It doesn't mean taking power from anyone else. It is not based on the assumption that there is only a limited amount of power in the universe and that if someone else has it then it limits my ability to have it. No. Self-empowerment acknowledges that true power is limitless and within each individual--it just has to be uncovered. And an ACT UP action is one of the best ways to uncover it by giving people the structure and opportunity they need to work through their obstacles to empowerment.

What are some of those obstacles to empowerment? Well, in a nutshell, they all stem from fear. Sometimes that fear takes the form of anger, sometimes it takes the form of depression, sometimes it takes the form of confusion. Essentially, however, fear is the only obstacle to the realization of one's own power.

Now People with AIDS have a lot of things to be afraid of. They may be afraid of rejection, of legal reprisal, of losing their health care, of not being able to work, of losing their jobs, of social rejection. Often, after working through these various fears one uncovers a fear of one's own anger and a fear of one's own power. (anger is not power, however. Repressed anger is usually what keeps people from realizing their own power. Fear of one's anger, therefore is a way of manifesting our fear of our own power (which is really a quality of love))

People without AIDS who are involved in the AIDS movement often also have their own fears to work through: fear of abandonment, fear of separation from a loved one, fear of loss, of being alone of grief of pain. Fundamentally, many of these fears are also manifestations of that same old fear of ones own power, fear of oneself.

Ultimately, both people with AIDS and those without have to face their fear of death.This is a big one and the fear that we all have to confront sooner or later. It's just that PWAs have to confront it sooner than they thought they would have to. This big fear can only be reached and uncovered to begin the process of confrontation after we have successfully confronted and worked through our fears of more earthly things.

Naturally, one doesn't eliminate fear by ridding the world of that which one is afraid of. Many children have perfectly mundane fears of things like dogs and the dark. They don't eliminate these fears by ridding the world of the objects of their fears. Rather, as children mature, they learn to face and confront their fears and thus befriend them. By becoming familiar with those things which we are afraid of, we lose our fear of them.

ACT UP is an extraordinarily effective tool for people to use to help them confront and get to the other side of their fears. In meetings with government officials, we use the ACT UP name not so much to threaten others as much as to support ourselves in making demands. In other words, as a representative of ACT UP at a meeting, I can, in one sense, distance myself from my own power by attributing my power to the larger organization of ACT UP. This gives it just enough distance to allow me to handle it without making it so distant that I don't recognize my place in that power equation. Thus, I am able to see my core power manifest in the real world without needing to be afraid of it As I become familiar and comfortable with seeing my power manifest in the world, I am more and more able to utilize that power outside of the confines of ACT UP. This is the essence of empowerment.

An ACT UP demonstration with arrest gives people the opportunity to confront and work through their fear of authority, i.e., police. Through the arrest process, people are given a chance to see that law and the enforcers of the law which we have all been taught to fear are really nothing to be afraid of. ACT UP, through its tight organizational structure and support mechanisms, gives people the knowledge that they need to get arrested without a lot of unnecessary fears so that they can concentrate on the main fear of the police which they are being asked to confront at that moment. In other words, knowing that someone will pay their fines, that people on the outside of jail are following them through the arrest and jail process, that they will not be mistreated without public exposure, etc., gives people the strength that they need in order to confront their fear of the police which in turn can be used to confront their fear of death and, perhaps, their fear of life (as in my case).

Additionally, and equally important to the process of empowerment, an ACT UP demonstration gives people the opportunity to work out their anger in a public forum so that the anger doesn't continue to hold them back, make them ill, confuse their thinking. Anger is not empowerment. Knowledge is empowerment. But the anger has to be released (sometimes lots of it, for a long time) before we can allow the knowledge to flow as freely as it should. ACT UP demonstrations are primal scream therapy for people who would never voluntarily engage in primal scream therapy. Get the anger out so we can open up to love, knowledge and power.

Obviously, this process works for other people, too. But for people with AIDS it could mean the difference between dying now and dying much later. (We all die, eventually. Death is not an enemy. Hopefully we are ready for death when it happens. Getting over our fear of death makes us ready to die but it can also serve as the key to life.) In this way, ACT UP, and its direct action, is a direct treatment option for people with AIDS.

In order to accomplish both its external goal (media, public attention, forcing government officials, etc) and its internal goal (self-empowerment of people with AIDS and their communities), ACT UP provides some of the best planning and pre-production work found in the world. It is often said of ACT UP that its actions are the best theatre available. This is definitely true and it is not without design. The inspiration of ACT UP, Larry Kramer, is a playwright by profession. ACT UP demonstrations are theatre outside the bounds of the physical theatrical space. They are theatre in the world, and accomplishing the types of reactions, actions and catharsis that all people in the "conventional theatre" only dream about. We use the same tools, however. Research, intensive pre-production planning, bringing together the actors (demonstrators), rehearsing them and getting to their motivating emotions (anger, fear, loss, love for each other), sets, props, fundraising, publicity--all this for the single goal of creating a spectacle that will change people's lives and change the world. For the most part, we have been successful.