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Outside the 1989 International AIDS Conference in
Montreal, ACT UP was marching around in our little circles,
remembers Ron Goldberg, who is writing a book about the
group. But someone said, Look, the doors are open! So we
went in and started marching around in our little circles
again. And then, suddenly, everyone started going up the
escalator and marching down the main aisle of the
conference and commandeering the stage. We were there
before we knew how or why. Always ready to improvise, ACT
UP used this opportunity to read a bill of rights for
people with AIDS, which received a standing ovation from
the crowd of scientists. Then the activists sat in the
seats that had been cordoned off for VIPs. They didn t
like that, says Goldberg, and they tried to move us. But it
finally dawned on them: Oh, people with AIDS are the VIPs.

Founded by Larry Kramer with a fiery speech, and named
by his audience afterward, ACT UP turns 10 years old this
month. To mark the occasion, the group plans a march on
Wall Street next Monday, March 24. Some say ACT UP s time
has passed, but even if that s true, its legacy exceeds the
sum of the victories it helped win: faster drug approval,
protection against discrimination, needle exchange in
various states and cities, and hundreds of small
improvements in services and care.

At its height, there were more than 60 ACT UP chapters
across the U.S. and many more around the world. Like the
proverb about teaching the hungry to fish rather than
merely handing them food, ACT UP taught patients to take
charge of their care, and in so doing changed them from
victims to VIPs. Never before, says Peter Staley, an early
member of ACT UP, had patients been accepted as equal
partners in finding a cure for their disease. To achieve
this, ACT UP had to battle the medicalindustrial complex,
which accounts for onesixth of Ameri ca s gross national
product; the tradition of science as an ivory tower open
only to experts; and, most fundamentally, the notion that
sick and dying people cannot be strong. But AIDS patients,
sometimes emaciated or in wheelchairs, stopped traffic on
Wall Street and the Golden Gate Bridge, infiltrated the
Food and Drug Administration and the set of CBS News,
heckled corporate executives and the president of the
United States, and burst onto every front page and TV
screen and ultimately into the popular consciousness.

Someone 25 years old, gay or straight, with AIDS or
not, has a different view of their doctor than they would
have 10 years ago, says Sean Strub, founder and editor of
the AIDS magazine POZ. There s a reason ACT UP never
incorporated, never sought to build a staff. The idea was
not to build an institution with a budget and a
bureaucracy. The objective was to change people s
relationship to the epidemic and the health care system in
general, to make us all players. To analyze its impact, don
t look at how many people show up at ACT UP s meetings.
Look at how many people took ACT UP s values into their
lives.

The reason ACT UP came into existence, says activist Ann
Northrop, is because people who thought they had
poweryoung white gay menthrew a tantrum when they found
out no one cared if they lived or died. Their fury was
mixed with faith in the system. This was the generation
that grew up watching men going to the moon and believing
in the American dream, notes Mario Cooper, a black AIDS
activist. They didn t believe anything was impossible.
Indeed, says Strub, We thought we were going to find a
cure. We really did.

Julian Bond compares ACT UP to the Student Nonviolent
Coordinating Committee, the civil rights group he helped
lead. Like SNCC, ACT UP drew young people with a kind of
inyourface, wewantthisrightnow attitude. Such
confrontational tactics, he says, always frighten the
horses: In the women s movement, the more aggressive
suffragists were chaining themselves to the White House
fence while others were saying, Oh dear, that s not how
women act! It was the same thing with SNCC, and, I
suspect, with ACT UP.

Strub remembers how some of his friends dropped him
because of his involvement with ACT UP. But, he says, all
these people who are alive now owe it to some blackbooted,
ringintheear queer screaming his lungs out on the street
10 years ago.

There was more than rage in that screaming. Cultural
critic Douglas Crimp has written that ACT UP gave gay men
an outlet for the mourning society denied them. That s
right, says Marcus Conant, a San Francisco physician who
was one of the first to treat people with AIDS. As his
patients died, Conant often witnessed homophobia trampling
on gay grief. One scene stands out in my mind, he says.
The father and his wife have 3/4own in to visit their dying
son, who is clearly never going to get out of that hospital
room. The other person there, standing in a corner, is the
dying man s lover of 22 years, who is grieving because he s
about to lose his lover but also because he knows he will
die in exactly the same way. That s something a lot of
people don t understand, the courage and pain of taking
care of your lover when you know the same fate awaits you.
Anyway, the father takes the lover out to the waiting room,
shows him old snapshots of his son with a beautiful woman,
and says to the lover, If he had just married Betty Sue,
this wouldn t be happening.

As any soldier can attest, living close to death fuels
not only rage but humor. And ACT UP, with its predilection
for camp, was often very funny. In 1988, the Reagan civil
rights commission decided to hold hearings on AIDS
discrimination, but with a twist. The whole thing was
jiggered to the rights of property owners who had to house
people with AIDS, author Ron Goldberg remembers. The plan
for the hearing quoted Biblical sanctions against
homosexuality. We didn t want to give it credibility by
testifying, so we were racking our brains to come up with
some way to disrupt the hearing. I mean, we were thinking
of letting mice go in the auditorium. What did they finally
come up with? Send in the Clowns , Goldberg giggles. A
contingent of demonstrators took seats in the audience and,
when the session began, donned clown masks adorned with
fluorescent orange hair. The moment we put on the masks,
all the lights and cameras swooshed away from the
commission and focused right on us. This mixture of
political theater, gay style, and deadon politics made ACT
UP the most memorable and effective activist group since
the 60s.

There were mistakes. At the 1990 International AIDS
Conference, ACT UP was angry with Louis Sullivan, the
secretary of health and human services under Bush. The
group drowned him out. Such censorship contradicted ACT UP
s oftstated intention to empower people with
informationand probably was a tactical error. The 1989
action at St. Patrick s Cathedral, where an ACT UP member
defiled the communion host, cost more public support than
it gained. But the scandal, says Goldberg, gave us a
certain amount of threat capability: Oh my God, what are
they going to do next?

Sometimes, that frightened off the wrong people. A
major drug company told me, We re not going to do any work
on AIDS drugs because of the activists, says Conant. They
were not willing to deal with being singled out for attack.
Some of the group s aggression got expressed in infighting.
We had to fight against white boys arrogance and racism,
says Keith Cylar, one of the most active African Americans
in ACT UP. Meanwhile, many white gay men thought identity
politics was diverting attention from the goal of finding a
cure. A lot of people were more concerned with making a
political statement than doing something about the lives of
people with AIDS, says treatment activist Spencer Cox.

In the early years it was wild, loud, and
argumentative, but it was family, says Staley, who left his
job as a bond trader when the stock market crashed and so
did my Tcells. He saw ACT UP grow from a small cadre.
When we attained a certain level of notoriety and power,
the crazies came flooding in and made it downright
miserable at times. Undercover police also contributed to
the acrimony, as did an ever more intense factionalism.

And people kept dying. Mark Milano, an ACT UP member
since 1988, estimates he has heard nearly 100 obituaries
from the floor, the eulogies ACT UPers gave for their own.
Goldberg remembers a particularly brutal week in November
1990, when four prominent members of ACT UP died. There
came a point when so many people were dying, says Kramer,
that it began to have a depressing effect. People started
turning on each other, rather than on the system. And when
ACT UP became increasingly unpleasant, that s when the
splitting off happened. Dozens of top activists left to
work with other AIDS agencies, many of which grew out of
ACT UP. Indeed, another ACT UP legacy is the scores of
organizations it spawned, including Housing Works, the gay
magazine Outweek, Treatment Action Group, and the Lower
East Side Needle Exchange. ACT UP was a university, says
Strub, and its graduates now staff the top ranks of many
AIDS and gay organizations.

ACT UP s legacy is probably what they would hate the
most, Cox says drily. It trained a whole generation of
people to work in nonprofitsto get up in the morning, get
dressed, and do the work.

Three hundred people used to come to ACT UP every Monday
night, but fewer than onefifth that number attended last
week s meeting. The group has dwindled to a small number of
people who are very devoted but relatively powerless,
laments Kramer.

You don t need thousands of people at a demo, counters
Milano. Just a small strike force can make a difference.
Last April, Milano and three other activists targeted
Stadtlanders pharmacy. Why? The pharmacy had exclusive
rights to sell one of the new protease inhibitors, and it
was charging a 40 per cent premium to people who paid
cashin other words, to people without insurance or
Medicaid. We plastered the front of the store with AIDS
Profiteer stickers, got arrested, and spent 28 hours in
jail, Milano recalls. The next day Stadtlanders reduced
the price.

Other groups helped ACT UP push Stadtlanders, which is
why we need players on the inside, cutting backroom deals,
says ACT UP veteran Eric Sawyer. But we also need people
on the outside who can be the unrestricted conscience of
the AIDS movement, who can put on the pressure without fear
of their funding being cut. We need a group like ACT UP to
keep the game honest.

As Maxine Wolfe, a longtime community activist, warns,
If you re not continually out there, your gains slip away.
Indeed, just this year, hundreds of doctors, scientists,
and people with AIDS were barred from America s major AIDS
science meeting. Activists are still fuming at this retreat
from the hardwon right of patients to learnwithout
middlementhe latest research on the disease that is
killing them.

There are worse outrages. Despite an avalanche of
evidence that needle exchange dramatically slows the
spread of HIV and doesn t increase drug addiction, the
federal government and New York City still refuse to fund
such programs. The human cost of this neglect is
horrifying: A recent study estimated that 10,000 U.S. HIV
infections have been caused by the lack of needle
exchange, 2300 of them in New York City. Another key issue
is the astronomical cost of the new proteaseinhibitor
cocktailsabout $15,000 per year. In some states, lack of
govern ment subsidies has meant that some patients cannot
get the new drugs, and a proposed perpatient cap on
Medicaid benefits threatens to cut off still more. Next
week s demonstration will protest these outrageous prices,
and demandas ACT UP has for a decade treatment for all.

I m praying for people to reappreciate what ACT UP was,
says Dennis deLeon, head of the Latino Commission on AIDS.
The whole AIDS establishment needs a big kick in the butt.

For information about the Wall Street demonstration and
the conference that precedes it, call (212) 9664873. ACT
UP meets every Monday at 7:30 p.m. at the Gay and Lesbian
Community Services Center, 208 West 13th Street.

Author email: schoofs@echonyc.com