➤ SCHULMAN, from p.32
scribed as an emerging insider/
outsider strategy. As different affi
nity groups carried out their own
civil disobedience plans, media and
public relations professionals like
Ann Northrop and Michelangelo Signorile
coolly corralled the swarm
of reporters on hand to make sure
they got the right message — so
demonstrators, in Northrop’s formulation,
could “speak through the
media, not to the media.”
The group’s largest demonstration,
which, Schulman estimated, drew
7,000 protesters, was the Stop the
Church action at St. Patrick’s Cathedral
in December 1989. Unlike other
actions, there was no specifi c policy
goal there, but it did directly confront
the most “respectable” among
America’s leading homophobes, Cardinal
John O’Connor, who literally, in
ACT UP’s view, got away with murder.
When the action went further than
anything the group had approved —
with one protester tossing the Communion
wafer on the ground and
others yelling from the pews — the
controversy went beyond mainstream
outrage to bitter division within ACT
UP itself. And yet it was likely the
highest profi le action ever taken.
An insider/ out approach was
evident again when Staley and his
treatment colleague Mark Harrington
got meetings — “a very nice
lunch” included — with pharma
giant Burroughs Wellcome, maker
of AZT, the most expensive drug in
history, toxic as it was. Staley acknowledged
that the “red carpet”
treatment was due to the company’s
“palpable fear” of the alternative —
a disruptive protest by what Schulman
terms “women, radicals, and
people of color, the street activists.”
When the price of AZT did not yield
to earnest discussions, both the insiders
and the outsiders swung into
action, fi rst infi ltrating the Burroughs
Wellcome headquarters and
later the New York Stock Exchange.
Three days after the Stock Exchange
action, AZT’s price was cut
20 percent, the last time, according
to Schulman, that an HIV drug saw
a price reduction.
Over time, some of the outsiders —
including women, people of color, and
injection drug users — came to see
the T&D members, largely gay white
men, as too much out for themselves,
looking for access to what could save
their lives — while a third of ACT UP
PHOTO FARRAR, STRAUS AND GIROUX
Sarah Schulman’s new book is a monumental
contribution to the history of ACT UP.
members had no health insurance.
Agosto-Rosario looked up to the T&D
leaders, but also saw that they could
access more promising treatments
than AZT earlier than others. In the
end he concluded they “were not really
that much into doing work related
to access to care and treatment
in disenfranchised communities.”
When Robert Vázquez-Pacheco, a
gay Black Nuyorican also concerned
about healthcare access, was invited
to join the Treatment Action Group
— formed when key members of T&D
broke away from ACT UP in 1992 —
he found the setting “unfriendly.”
A big part of the dissatisfaction
with ACT UP’s treatment activists
was the view they were not fi ghting
to broaden the demographic profi le
of those enrolled in drug clinical
trials. Government researchers
were looking to focus efforts on a
homogenous population — specifi -
cally gay men, most of them white.
Richard Elovich, a white gay man
recovering from heroin addiction
who led civil disobedience efforts
that distributed clean needles to
injection drug users, confronted
Anthony Fauci, then as now director
of the National Institute of
Allergy and Infectious Diseases,
about why users were barred from
clinical trials. Fauci replied that as
“a noncompliant population” drug
users couldn’t be relied on to stick
to a trial’s drug regimen. Elovich,
“enraged” by the answer, came out
to Fauci as a recovered addict.
More than any other group, it
was women who were outspoken in
their criticism of T&D. At the urging
of Barr and Harrington, ACT UP
voted to block women from protesting
at a plenary session of the 1990
International AIDS Conference, saying
they wanted to keep the lines
of dialogue with researchers open.
The science being discussed, the
women activists volleyed back, was
“not valid science,” since it excluded
research on females. Rebecca Pringle
Smith, who came to New York for
a postgraduate pre-med program at
Columbia, recalled that “this view
got put out that… Fauci liked the
men better because they were nice,
and the women weren’t.” It took a
four-year fi ght — carried out under
the slogan “Women don’t get AIDS,
we just die from it” — for the CDC to
change the defi nition for an AIDS diagnosis
to refl ect the specifi c ways in
which HIV breaks down their bodies,
including cervical cancer, endocarditis,
and bacterial pneumonia.
Without an AIDS diagnosis,
women couldn’t access Social Security
disability benefi ts as well as
those available from the city’s Division
of AIDS Services. Even with
the change, Schulman writes, by
2001 all but one of the HIV-positive
women in ACT UP had died.
The 1992 departure of T&D activists
to form the Treatment Action
Group was the culmination of the
growing insider/ outsider tension at
ACT UP — and, in Schulman’s view,
a split that heralded the group’s declining
vitality. Maxine Wolfe, a lesbian
whose activist roots went back
to 1960s feminism, is often painted
as being at the opposite pole from
Mark Harrington on the group’s
outsider/ insider spectrum. Her critique
of TAG was that its members
were self-serving and had betrayed
the underlying ACT UP vision by
separating medicine from politics.
From David Barr’s perspective,
the lengthy and often divisive fi ghts
treatment activists faced on the
fl oor of ACT UP meetings increasingly
took “all this time and energy”
away from the an agenda “we were
seeing a lot of success with.”
In describing the ACT UP-TAG
split, Schulman writes, “I never
took a side.” She clearly appreciates
the frustration that women
and others had toward the T&D
members’ “telegraphing a feeling
of superiority and disrespect.” At
the same time, she points to the
four years it took for women to get
the defi nition of AIDS changed as
providing “a resounding no” to the
question of whether ACT UP could
have made the signifi cant treatment
strides it did if it had been
fronted by a different face.
“Demographics determined access,”
she writes, “and access determined
the playbook.”
Schulman’s observation is not
meant to minimize what she views
as ACT UP’s failure to have advanced
treatment access more by
the time the drugs that actually
made HIV a manageable infection
arrived in the mid-1990s.
And, regarding the impact of
TAG’s departure, she writes, “We
don’t know, if ACT UP had healed,
if it could have become, created, or
contributed to” a broader movement
for universal healthcare.
ACT UP’s imperfect realization
of its vision, Schulman clearly suggests,
is its greatest lesson for activists
today. Struggles for change
have “to be driven by those people
affected,” she writes, adding, “Democracy
requires participation…
This is what politics is.”
LET THE RECORD SHOW: A
POLITICAL HISTORY OF ACT UP
NEW YORK, 1987-1993 | By Sarah
Schulman | Farrar, Straus and
Giroux | $40; 702 pages
Are you HIV+ and have
Peripheral Neuropathy?
Research study aimed at reducing neuropathic pain
You may be eligible if you are:
- HIV+/AIDS
- have pain, numbness, aching, burning,
or “pins and needles” in lower legs
or feet for greater than 3 months
- 18 years of age or older
Qualified participants will receive round trip Metro Cards
and compensation up to $220
212-365-0346
GayCityNews.com | JUNE 3 - JUNE 16, 2021 35
/GayCityNews.com
