Acting up and fighting back

"What AIDS revealed is not the problem with the virus. What AIDS revealed is the problems of our society. It was this fissure through which everything--all the ways our society is not working--became clear." --Zoe Leonard

"I look at the fact that I am HIV+ today, and I would not be alive today if I didn't get arrested 20 years ago." --Matt Ebert

IT IS no exaggeration to say that the Aids Coalition to Unleash Power (ACT UP) changed the world. During the 1980s and '90s, members of ACT UP across the U.S. created an unapologetic movement full of rage, grief, humor, purpose and compassion.

Their brand of activism forced the government to invest billions into drug research, health care and social services. Their victories saved the lives of people infected with HIV around the world and inspired HIV-positive people in other countries to fight for their rights and for access to treatment and medication.

ACT UP was also an art movement. Members created powerful, political art designed to both shock and educate the public. The Visual AIDS Artists Caucus designed the iconic red ribbon and insisted on keeping the image copyright free. The pink triangle with the words "Silence=Death" is another image that could be found everywhere in society, especially on banners, buttons and T-shirts at demonstrations.

Gran Fury designed a series of posters showing gays and lesbians kissing with the caption, "Kissing Doesn't Kill: Greed And Indifference Do." Agitprop posters plastered major cities and took on the government, using the image of a bloody hand with the caption, "The Government Has Blood On Its Hands--One AIDS Death Every Half Hour."

Now, two must-see documentaries--How To Survive a Plague, directed by David France, and United in Anger, directed by Jim Hubbard--chronicle and celebrate the raucous history of ACT UP. Both films use never-before-seen archival footage of protests and civil disobedience, much of it recorded by ACT UP participants. Dozens of interviews with leading members are interspersed with grainy video of organizing meetings.

How to Survive a Plague focuses on ACT UP members who formed the Treatment Action Group (TAG), and United in Anger concentrates on the broader politics and actions of the organization.

Both films lay out the seemingly insurmountable barriers that the movement confronted. ACT UP tackled government intransigence and homophobic ideas coming out of the administrations of Ronald Reagan, George Bush Sr. and Bill Clinton, plus the Catholic Church, while also fighting the for-profit health care system and the greedy pharmaceutical industry that would let them die.

Daunting is an understatement--but ACT UP members, driven by righteous anger channeled into a furious energy to live, were undeterred.

THE STRUGGLE took place against a backdrop of thousands of people dying each year. AIDS became the leading cause of death for gay men in the 1980s and '90s. The films show activists coping with the constant trauma and fear of diagnosis, disability and death. Funerals became a regular part of people's lives.

But the victims weren't going to go quietly. As AIDS activist Keri Duran said during a protest at the Federal Drug Administration, "I'm 28-years old. I'm dying, and no one gives a shit. Get off your asses and do some work!"

At the same time, the Catholic Church stoked prejudice against LGBT people. In 1989, Cardinal O'Connor condemned the use of condoms and abortion. ACT UP organized a protest at St. Patrick's Cathedral in New York City. How to Survive A Plague shows footage of activists planning the demonstration and the protest. More than 7,000 people assembled outside the church.

One of the most profound moments in the film comes inside the cathedral, when an ACT UP member shouts at Cardinal O'Connor, "Why are you murdering us?" He then yells nonstop, "Stop killing us, stop killing us, stop it, stop it, stop it." The words ricochet off the stone walls and land on O'Connor, slumped in his gilded chair, head in his hands. The last shot is of the NYPD dragging out protesters out of the pews. But the mainstream press attention elevated the status of ACT UP enormously. After the action, co-founder Larry Kramer remarked, "They're afraid of us now."

The humor of ACT UP was also infectious. The group confronted anti-gay Sen. Jesse Helms. In United in Anger, video footage shows activists completely covering Helm's home with a giant condom.

One political limitation of the early ACT UP years was the group's adherence to identity politics, which assumed that only those who share a common identity and personal experience had a stake in fighting the disease. This perspective often led to bitter and unnecessary internal splits and a rejection of straight allies.

ACT UP's organizing strategy relied mainly on militant direct action, which at times took on moralistic overtones and involved few people. An example is the "zap actions"--small, targeted events organized by affinity groups, often connected through friendships. At times, confrontation with authorities for the sake of confrontation was viewed as more political and successful than building actions that would have brought in more protesters and potential allies, such as the 1199 union of health care workers in New York City that was beginning to mobilize its members to fight for universal health care.

Indeed, the AIDS crisis put a spotlight on the dysfunctional, for-profit health care system in the U.S. in a way that no other epidemic had.

Because of the patchwork nature of the system, the high numbers of uninsured, the linking of insurance to employment and the initial refusal of private insurance companies to cover AIDS-related illnesses and medication, a coordinated, humane response to the crisis wasn't possible. By contrast, countries that had national, single-payer health care systems covering everyone were able to manage the AIDS epidemic more effectively and save more lives.

In New York City, hospitals were inundated with AIDS patients who died on gurneys left in crowded hallways. According to one activist, their dead bodies were put in trash bags. In a few cases, hospital staff refused to provide care to AIDS patients.

Lifelong partners of gay AIDS patients weren't allowed hospital visitation rights or the right to make medical decisions for their loved ones. The lack of dignity and respect for AIDS patients infuriated activists and drove them to fight for changes in the victim-blaming and homophobic culture in health care.

In 1988, ACT UP member Jim Eigo coined the slogan, "Health care is a human right." In United In Anger he explains, "I thought the more we could press that as a moral cause, something we could align ourselves with people outside of the gay world and the AIDS world, with the idea that universal health care was the goal."

In 1990, ACT UP organized the National AIDS Action for Health Care. This was part of a shift by ACT UP away from its earlier ambivalence to universal health care and toward a demand that health care should be a right for all.

GETTING "DRUGS into bodies" was a major concern for ACT UP and the Treatment Action Group (TAG), which was formed to investigate treatment options for those infected with HIV.

The TAG organized direct actions, civil disobedience and mass arrests at the Federal Drug Administration, National Institutes of Health, pharmaceutical company headquarters, international AIDS conferences and at the New York Stock Exchange to protest the artificially inflated cost of the breakthrough medication AZT, which pharmaceutical company Burroughs Wellcome priced at $10,000 a year. ACT UP had two messages for the drug companies: "Fuck your profiteering," and "Patents kill patients."

How to Survive a Plague shows how TAG members David Barr, Greg Gonsalves, Mark Harrington, Iris Long and Peter Staley educated themselves in the sciences of virology and immunology. For years, they pored over medical texts and scientific journals that explained clinical trial design and implementation--and then they developed their own. The TAG did the work that government scientists should have been doing.

The TAG also spoke out against the secrecy, competition and the profit motive in science and argued for a cooperative, transparent and democratic science that was accountable to the people.

The TAG confronted Dr. Anthony Fauci, head of the National Institute of Allergy and Infectious Diseases and told him he wasn't the only expert--that people living with HIV were experts, too. The activists demanded to be involved at every level of research. Much to their surprise, ACT UP won numerous demands in such confrontations.

The TAG'S crowning achievement was the publication of A National AIDS Treatment Agenda. Government scientists were astonished at the level of scientific knowledge and professionalism of the report and adopted many of its recommendations.

Through a combination of highly visible protest and the persistent work of the TAG, drug trials were sped up, highly effective antiretroviral drugs were discovered, and the price of medications were lowered. An AIDS diagnosis went from being a death sentence to a manageable disease.

The work of the TAG is a fascinating and little-known contribution of ACT UP that needed to be told. It is a shining example of the intelligence, creativity and ingenuity of ordinary people.

Peter Staley's defiant speech at the International AIDS Conference in San Francisco in 1990 is one of the most moving and prescient ever given on the impact of AIDS on humanity. His words alone are worth the price to see How to Survive a Plague. It will leave you in tears.

BOTH FILMS neglect one critical aspect of the AIDS epidemic: How intravenous drug users were affected. One of the major vectors for the spread of HIV was the sharing of needles. IV drug users were infected with HIV at rates approaching those of gay men.

Similarly, drug users faced enormous stigma and discrimination. The federal government refused to fund needle exchanges, and as a result, thousands of drug users contracted the virus and died. ACT UP members started some of the first needle exchange programs and risked police harassment and arrest. This facet of the epidemic should be included in any documentary about AIDS in America.

Another criticism is that the racism of the AIDS epidemic needed to be more fully explored in each documentary. Early on, ACT UP was a mostly white organization, led by middle- and upper-middle-class gay men. As the disease began to take its toll among a wider part of the population, the group shifted its posture and composition. It became a more multiracial organization that took up the issues of racism, sexism and xenophobia.

Disease discriminates, and African Americans were and are infected with HIV in disproportionate numbers, with less access to treatment and a higher mortality rate than whites. United in Anger briefly addresses racism and features more people of color. How to Survive a Plague doesn't mention racism at all, and there are hardly any people of color interviewed in the film.

The experience of ACT UP can provide vital lessons for activists today. In particular, the experience of the organization shows that fighting back collectively against injustice matters--and that winning demands from the government is possible.

We are standing on the shoulders--and in some cases, the ashes--of thousands of AIDS activists. We owe them a tremendous debt, and the best way to pay it back is to continue to struggle--to "Act up, fight back, fight AIDS!"