Subject: [SocialistWorker.org] Acting up and fighting back
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Review: Helen Redmond
======== ACTING UP AND FIGHTING BACK =========================================
Helen Redmond reviews two documentaries that detail the history of the
activist group ACT UP--and the fight to make the government take the AIDS
December 19, 2012
>/"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
>/"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
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
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
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
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
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
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
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
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!"
= = = = = = = = = = = = = = = =
/How to Survive a Plague/ , a documentary by David France. /United in
Anger/ , a documentary by Jim Hubbard.
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