"We might as well die shouting!"
Act Up is the most militant current in AIDS activism. It combines direct action tactics, including "zaps" of rich and famous bigots, hypocrites and profiteers, with an incredible development of expertise - intervening in the medical and scientific debates, and encouraging people with AIDS to take a leading role in their own treatment programme. Only a minority of Act Up members have a background in left or gay politics. Most became radical when they, or someone they knew, caught HIV. This "who we are" statement by the Paris Act Up Paris, Europe's oldest, illustrates the thinking and tactics of the current. Act Up-Paris was created at the Gay Pride in June 1989, a march which every year brings together thousands of gay men and lesbians in the streets of Paris. A dozen lay down in the middle of the street. On their tee shirts was Silence = Death - a still unknown equation in France - and the pink triangle, symbol of the Nazi deportation of male homosexuals. But this triangle pointed upwards, showing their resolve to create a clear and positive response to an epidemic which had decimated thousands of gay men.
At the origin of Act Up is the anger of some homosexuals. Some were HIV+, others were not. All of them were very aware of the indifference, silence and contempt that HIV+ and People With Aids (PWAs) still encountered. Aware of the indifference of society, media and public opinion, still believing that AIDS only affected marginals: homosexuals, drug users, and others of whom it could be said a priori that their illness was only the sign of a corrupt life. Aware also of the indifference of those in power, because AIDS policies consisted at most of makeshift repairs and adjustments, which only dealt with the short term. PWA's were still medically insignificant (not as important as cancer or cardio-vascular patients), and above all politically insignificant. In France, there is no homosexual or drug user's vote.
At worst, AIDS was seen as a godsend by the most reactionary, who saw it as a justified and effective way to get rid of a large section of certain minority groups. Generally, it was considered to be a problem of secondary importance. Concern about AIDS meant concern about gays, a group which has never 28 International Viewpoint
OUTAGE! been taken very seriously by serious politicians. At best, AIDS was a new "important social problem" about which one should utter a few contrite platitudes- because, everyone knows, important social problems "are nobody's fault".
Meanwhile, a whole section of the homosexual community was being decimated. We saw ourselves being led to shameful and unmarked graves. We saw our networks of friendship and love crumbling around us.
Some groups organised themselves to stave off the growth of the epidemic before it was too late. They quickly took complete charge of providing information and prevention work, thereby running the risk of relieving public authorities of their respon sibility for doing this. And the world went on unchanged. The "exemplary behaviour" of homosexuals was noted and praised, and attention moved on to something else.
Act Up's first rallying cry could have been, "Our friends are dying like flies and nobody gives a fuck". Followed by the obvious conclusion: if we're going to die like flies, then we might as well die shouting out our rejection of shame- the only condition we're allowed. We might as well show ourselves, so nobody can say that they didn't see or didn't know what was happening. All the while hoping that we could shout loud enough and be visible enough so that we all wouldn't share the same fate.
We had a model: the New York group set up in 1987. They have made PWA's and their problems visible, using the weapons which we have taken from them: the pink triangle, provocative posters and succinct slogans: Silence=Death, Action= Life.
At the origin of Act Up-New York was a similar anger, and the same intuition that this anger could not go unheeded, that it would be more productive if we came together and made a united front against the AIDS epidemic: Anger=Action. However, Act UpParis is not and was never conceived of as being a branch of ACT UP-New York. The American association is a reference for us, a group with which we occasionally coordinate our actions and information, as with all other Act Ups in France and the world; but it is not our headquarters.
Act Up-Paris started out as a sectional and "hysterical group. But faced with AIDS, we couldn't stay in a strictly emotional position. Your own sickness, the sickness of your friends, your lover's death, all confront you with a barrage of issues that are essentially political. In the industrialised countries AIDS didn't strike indiscriminately. Instead it hit readily identifiable social groups: homosexuals drug users ethnic minorities prisoners and now women (who are still neglected in the medical research).
AIDS is not only a human or collective tragedy. It is still a tragedy that targets certain precise social categories, defined by their practices and their differences in comparison with the dominant model. In this sense, AIDS has nothing in common with the "Everyone is equal before death" mythology of previous epidemics- (though the plague, leprosy and cholera also had their political dimension.)
AIDS is transmitted by certain types of conduct, not just through social contact. Thus AIDS attacks our way of life. If this conduct does not conform to socially acceptable and/or majority behaviour, those who have adopted it will be the most exposed to the virus. They will be excluded from prevention, research and care because of the discrimination which they suffer. For this reason, fighting AIDS means calling into question the very basis of our society, and constituting a front of minorities, against the blindness and cynicism of the "right-thinking".
This first general conclusion is accompanied, in Act Up, by a whole new way of looking at certain givens: Challenging medical authority
In the same way that AIDS has occurred everywhere there are social deficiencies, and primarily targets those who don't have the right to express themselves, the illness places patients in a position of absolute dependence on their doctors. They are deprived of their status as adults, and can only remain silent while awaiting the verdict. However, AIDS has seriously discredited a part of the medical establishment, and the establishment has seriously discredited itself in turn- through the infection of haemophiliacs and transfusion patients, and the corporatist reflexes of certain doctors who quickly close ranks against the patients who they don't know how to treat. Fighting AIDS is about teaching AIDS patients to regain the upper hand and establish a dialogue with doctors as equals, to give them the chance to choose their treatments and decide their own future. • Challenging the scientific research
AIDS has dealt a death blow to the fiction of disinterested medical research. Fighting AIDS means understanding that the research mechanisms are interwoven with political and economic considerations. It also means confronting procedures which are extremely closed off, and increasingly unsuited to the speed and violence specific to the HIV epidemic. Out of this arises the Importance for patient associations to control and accelerate these processes, i.e. to change our relationship with scientific research and with pharmaceutical companies, from that of mere consumers to that of service users who can have their say.
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AIDS
• Challenging the lack of prevention and care provided by public authorities
Only the State has the means to provide a large-scale policy of prevention and care. But fighting AIDS means being confronted daily by a denial of responsibility on the part of the authorities. In 1992 French government ministers were brought to trial [and mainly absolved of their criminal responsibility for transfusions of non-tested (and HIV infected) blood to haemophiliacs in 1984-85.]
This "infected blood scandal" is only the tip of this iceberg. It means being aware of the neglect of all the public services; hospitals, schools, prisons; where systematic policies of information, prevention and support could and should have been established. Not to mention the Third World, once more left to its own silent tragedy. Challenging the "moral authorities"
Positions taken by the moral authorities in civil society can considerably influence behaviour. And the State's decisions depend in part on the positions taken by these authorities. Fighting AIDS means questioning these authorities, combating the criminal silence of some media, political parties, intellectuals, and artists, and the criminal declarations of others media, the Challenging the anonymous and daily accomplices of the virus
We point the finger at charlatans, corrupt pharmaceutical companies, pharmacists who refuse to sell syringes, those who throw us out of work, and those who betrayal our medical and personal privacy.
Public and moral authorities assist in the spread of the epidemic through anonymous relays in daily life: small acts of exclusion, discrimination and contempt which isolate PWAs and HIV+, as well as homosexuals, drug users, the destitute, the homeless, women, and male and female prostitutes. These acts make them ideal targets for the virus. Fighting AIDS means fighting all these ordinary despicable acts.
The first Act Up militants had to move very quickly from an individual, moral and emotional position to a political understanding of the disease. The fight against AIDS became a political war against the forces that assist the work of the virus. Fighting against AIDS is no longer just a psychological battle against despair and fatality. It is a battle against the decision-makers and the political, economic and symbolic powers which, each in their own way, constitute solid relays in the spread of AIDS. Today more than ever Act Up is confronted by the bastions of our society: the inaccessibility of science, the uncontrolled separation of authority and responsibility which allows people to say "responsible but not guilty", and Puritanism which send adolescents to the slaughterhouse, the exclusion of minorities.
Act Up-Paris has had to defend and develop the support networks between minorities to the greatest extent possible; fight for sexual freedom, the rights of PWAs, the right to be different; fight against all processes which would create ideal victims. And above all, fight to enable those who didn't have the right to speak for themselves to make their voices heard. Activists, lobbyists & militants
Being a member of Act Up means realising that the traditional party and association structures are not able, are no longer able, or do not want, to respond to the AIDS epidemic's particularity and the speed at which it is spreading. Faced with this series of partial dead ends, it was necessary to seriously stir things up. To destroy the passivity of politicians, the timidity of the associations and the impotence of leftists. To destroy the traditional distinctions between local and universal fights. Every day the fight against AIDS moves to a new front, discovering new enemies and new allies.
The political cards have had to be reshuffled. Act Up is not part of the old philosophy of camps which thinks there is an intangible difference between the left and the right. Most of us consider ourselves to be leftists. But the story of AIDS has unfortunately shown that those who call themselves progressives often prove to be as reactionary, homophobic, puritan and indifferent as those they claim to be fighting. This is how it is in all wars- you have to know who is playing into the hands of the AIDS epidemic and
A new political formula has to be developed, to articulate the constantly shifting minorities front. This should be based on the fact that there are more and more political minorities (since white heterosexual men observe a serious abstinence of sex and drugs, they aren't that numerous; though it is true that they are pretty much the only ones to have a voice), The cynical but unfortunately realistic fact that today's sick minorities will be tomorrow's majorities if the anti-AIDS policies remain as they are. Act Up's strength and the increasing of those who 1o1n our demonstrations very closely follows the epidemic's progression. The Fight For The Communities
Act Up cannot fight the war against AIDS alone. We need allies (doctors, associations, artists, moral authorities, etc.) to lead an effective combat on each front. But we also and above all need relays, to give coherence and unity on these different fronts. These relays are the communities. This is why Act Up could only really establish itself around this issue of defending and strengthening the communities. To fight for the communities means working and fighting for their survival and expansion. But it also means working so that they can become open communities within the larger society; and not degenerate into communities by default, pariahs.
Fighting for the homo-
- means fighting those who think that the homosexual issue is now settled and that their fight is rear-guard. It also means fighting those who block, like by challenging the idea of a mixed homosexual community.
We are not certain that there can ever be one "AIDS community." The Arab, black, homosexual, and feminist communities are too heterogeneous. We prefer the idea of a coalition, a term which we take from the American meaning of the initials ACT UP (AIDS Coalition To Unleash Power). The fight against AIDS can in fact help to create solidarity networks between these diverse communities, thus making them both stronger and more open. Act Up is without a doubt one of the only associations in France where every week militant homosexuals, drug users fighting for their rights, feminists, former prisoners, suburban social workers and radical deaf-mutes come together. While they all have a very clear and deep feeling of belonging to their community, they meet in a common fight which engages and brings
It is useless to believe in miracles- a therapeutic vaccine or a magic formula won't happen overnight. Advances will be made, but slowly. And they will be made available to everyone even more slowly. But only through the establishment of community networks, which set up a common front where different struggling minorities can come together, will a majority of people be able to benefit from these advances when they happen, and not be forgotten about. Rather than passively dreaming of a universal and adult community which knows how to fight AIDS, better to start by defending, rebuilding or even creating communities which have a real ability to resist the disease.
This is why our fight takes place in two time perspectives:
• Immediate: because our friends are dying every day and the disaster must be stopped at any price, by unreservedly applying the series of measures we have been recommending for four years;
• Long term: to organise resistance as long as nothing medical and definitive will have been found to cure the disease, and as long as those it threatens or strikes are in danger. Surrounding The Fight Against Aids
When the day finally comes, and Act UpParis can close its doors because we will have finally beaten AIDS, no doubt most of us will be dead. Of AIDS. But, at least we
April 1997 #287 29
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