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As if 18.8 million deaths worldwide weren't
bad enough, there now emerges an ACT UP group that argues
that HIV is harmless, that AIDS is a myth and that unprotected
sex is everyone's birthright.
He feels much better, thank you, since he stopped
believing in the virus. He knows it still moves inside him,
in the teeming indifference of his blood, but he gives it
no sway. It is harmless. It wants nothing from him.
He smokes a joint because when you are sick
in San Francisco, sick in the right way, you can smoke a joint.
But he feels fine these days.
When the phone rings, he answers in the new
manner. "ACT UP," he says. "AIDS is over."
There is nothing. Stunned silence on the other
end. He smiles, rolls his eyes a bit. Perhaps the caller is
one of them -- they of the swollen glands and the faded appetites.
One who still believes in his sickness and is made sick by
the believing.
"ACT UP," he repeats. "AIDS is over." The caller
hangs up.
***
The lies began from the moment of infection.
That's how the AIDS deniers see it now.
They remembered catching something, or maybe
they didn't -- a sore throat, a mild case of paranoia -- and
soon the shades were drawn in the doctor's office, and the
news was hushed. They were told many things in that room and
in countless other rooms where the shades were always drawn
and the sun was not invited in. Fabulist tales that began
in sickness and never once ended in hope. They were told that
the virus was different, that it defied the rules of science.
They were told that thousands had already succumbed, their
skin a hash of fanciful lesions. They were informed that no
matter what they did, they, too, would die as others had --
in desperation and diapers, the smell of failed medication
on their breath.
That's how it was with the virus. One day you
had it, and the next you were living in its world. And what
a world it was, full of grim regimes, suspicious fevers, the
endless recitation of blood counts. Life on a short wick,
the days spent waiting for it -- a two-bit little retrovirus
-- to announce its intentions.
Which is why people did such crazy things. Died
like divas on the steps of the FDA. Shut down Golden Gate.
Demanded drugs that turned their tongues blue and their rashes
weepy. It was the virus that pushed them, made them get in
people's faces -- spit in people's faces -- because, otherwise,
how would anyone get the message? Death was in the air, and
there was no time for moderation.
That's all past now, part of the hysteria of
history. The AIDS deniers can see things clearly now, see
the impossibility of a disease that never really had a name.
"Acquired Immune Deficiency Syndrome"? You call that a plague?
The incredible, edible HIV? Please. Give them a real disease.
Rubella. Ebola. Something with a virus you can grab hold of
-- lock up in a safe and detonate.
And what of their own survival? they ask. Is
that not proof more solid than any syndrome? Is that not a
particular factoid you cannot avoid? They're alive. They breathe.
They act up! And every time they do, they shove it up the
ass of the heterosexist heterodoxy, the pill-popping queers,
the doctors without borders and the nurses without clues.
They live while others die.
***
Curious where the AIDS deniers have risen: in
San Francisco, on a weary corner of Market Street, between
a convenience store and the New Leaf substance-abuse center.
Curious not because you can stand outside New Leaf and smell
the reefer next door -- the AIDS deniers run a medical-marijuana
club out of their office -- but because the building is located,
like a grim joke, on the edge of the Castro district.
The AIDS deniers have a potluck once a month.
Right there in the ACT UP office. There is no joy in the meal,
in the bowls of cereal, the cream-free, crime-free vegan curry,
but joy is not the point. The point is there on the wall,
on the poster that reads HIV: ANTI-GAY, ANTI-SEX SCAM. It's
in the videotape they will show after everyone has finished
eating, the one labeled AID$ IS A LIE! They've all seen some
version of that video a hundred times, but they'll watch it
again. That's why they come: to bolster their convictions
and banish their doubts. They come to find ways to refute
the official story -- that infections are up again, that the
epidemic is far from over.
Folks sit like bohemians in a circle of secondhand
furniture -- mismatched chairs, a tatty couch -- and condemn
the disease they have grown to despise. The group is small,
a mere dozen people, but it is effective. It is a threat.
A wiry man in jeans takes charge. "My name is
Dave," he says -- David Pasquarelli -- "and I'll be facilitating
tonight." He points to a board that says AGENDA. Underneath,
the difficult imperative: QUESTION HIV!
Most everyone in the room is HIV-positive or
has been diagnosed with AIDS, but they say they no longer
believe that HIV causes AIDS. Some claim the virus does not
exist, that it has never been isolated in a laboratory. Others
say, sure, maybe HIV exists; maybe everyone has it. But one
thing they know: It is harmless, a blank bullet in the body.
"We have basically been in a spell for twenty
years," says Pasquarelli. "An apocalyptic, Armageddon-like
spell that this virus is gonna run rampant and destroy all
of humanity. All the predictions that were made about the
eradication of the gay community, that straight people were
gonna be decimated -- none of those things came true."
Pasquarelli believes the epidemic was woven
out of bad science. Researchers jumped to conclusions, and
the whole thing fed on itself. The pharmaceuticals smelled
money, while the government, which has never been kind to
homosexuals, allowed the AIDS myth to spread to stigmatize
gay men. Together they hit the public-hysteria button. He
even goes so far as to say that AIDS does not exist. It has
never existed. Just a monumental mistake, a gross misdiagnosis.
"AIDS is a propaganda war," he says. "It's not a medical problem."
Pasquarelli is interrupted by the man to his
left; the coleader of the group, Michael Bellefountaine, who
means to emphasize one point: People aren't dying from the
virus, he says; they're dying from the drugs they take to
fight the virus. A woman in a black AIDS DRUGS KILL T-shirt
nods emphatically.
In the heat and fury of the room, it's easy
to forget who these people are: the members of ACT UP San
Francisco. ACT UP? In the 1980s and '90s, the group (the AIDS
Coalition To Unleash Power) was something else entirely --
advocates on the opposite side of the fence. The organization
was a legendary force, one of the earliest and most radical
gatherings of AIDS activists. Started by the writer Larry
Kramer, ACT UP used civil disobedience to jar the public from
the slumber of the Reagan-Bush years. It stopped traffic,
threw fake blood, guerilla-attacked Wall Street -- anything
to bring attention to the crisis. What the group wanted was
more federal research money, quicker FDA drug approval, and
eventually, it won these things. The money flowed, and the
drugs? -- well, they rained down in a jackpot shower. Because
who could argue with the issues? Though ACT UP's methods were
extreme, its agenda was, in the end, reasonable. And as the
public came around to the group's point of view, ACT UP became
something unexpected -- a piece of the AIDS establishment.
Maybe cracks were bound to form as the struggle
moved from basic political access to more complicated issues
of drug treatment. But no one could have guessed how they'd
form. Several years ago, the local office splintered into
two groups: ACT UP Golden Gate and ACT UP San Francisco. While
the former focused on medical issues, the latter kept up the
political crusade until -- under the direction of Pasquarelli
and Bellefountaine -- it slowly drifted into the warm shade
of an AIDS conspiracy theory.
Now the members of ACT UP San Francisco have
turned against the cause that for so long sustained them.
These days they attack not the indifference of political leaders
but the activism of their former comrades. They target anyone
in what they consider "the AIDS orthodoxy": people who raise
money for the disease, raise awareness, provide services,
do research. The people, as they see it, who tell them they
are sick.
And while they do not believe in the virus,
they believe in extreme measures for those who do. Gone is
the fake blood of older, paler protests. In its place: cat
shit. Yes, the men and women in this room have performed unspeakable
acts, thrown unspeakable things upon the heads of their enemies.
By the time you read this, some of them may already be in
jail.
Take Pasquarelli and Bellefountaine, who are
infamous for spitting in the faces of their enemies -- the
saliva delivered with passion, as a pox and a taunt. You think
I got HIV? You think you can get it from me? Try this. They
are immune to sentiment. The AIDS quilt, that quiet spreadsheet
of lost lives? Bellefountaine calls it "a death tarp," agitprop
for "HIV hysteria."
At a glance, they look like opposites -- Pasquarelli
lean and finicky, with a shaved head; Bellefountaine reassuringly
overweight, with stare-down eyes and a full crop of hippie
hair. In truth, the two are closely bound; they moved together
from Tampa and were roommates for a time. They have fought
the same battles and are drawn to the same way of fighting
them. They prefer confrontation, the clarifying animus of
anger, how it clears a room and realigns the chemistry. They
love nothing more than to act up, to barge into an AIDS forum,
knock over tables and shout "Die, faggots, die!"
Or take Ronnie Burk, the 45-year-old who all
night has been referring to himself with a different minority
handle -- speaking as a stigmatized homosexual...as a struggling
artist...as a Latino...as an American Indian -- the trigger
phrases preceding his words so as to invest them with authority
and ward off contradiction. Ronnie Burk hates the elites of
the AIDS orthodoxy, the fat cats in their salaried jobs, and
he knows how to get to them. In a notorious incident in 1996,
Burk stormed into an AIDS health forum, ran up to the director
of the San Francisco AIDS Foundation and dumped twenty-five
pounds of used cat litter on her head.
Cat shit! Who would dare? The hall was full
of people with AIDS, and everyone with AIDS knows about cat
litter, about the need to avoid it, how for those with compromised
immune systems the stuff is nuclear. Puts you in danger of
toxoplasmosis. Even after Burk shouted, "Straight white woman,
you should die!" even after he was hustled out, babbling,
"Pat Christen you should die!" the room seemed to hang in
the funky spook of the moment. The waste had come from Bellefountaine's
cats, and it was acrid and foul. It did not disgust the woman
so much as freeze her in a calotte of shame. My people did
this to me. She stood there brushing it off, the way you would
with chronic lint, until she felt clean enough to sit down.
She was in shock, of course, which is why she continued with
the meeting, the litter still rustling at her feet.
The AIDS deniers showed me the video as if they
were pulling out old family photos. The memories. Look at
little Ronnie flinging cat shit. We ate pita bread and watched
Pat Christen squirm. It still makes them proud.
***
For a time, AIDS activists tried to ignore ACT
UP San Francisco, figuring that its views were transparently
absurd and would find no audience. But they underestimated
the energy of the group and the appeal of its message. Members
are constantly at work in the field. They encourage gay men
not to get tested for HIV. They lobby Congress to cut federal
spending for AIDS, having written to all 535 members this
year. (How's that for role reversal? ACT UP asking Jesse Helms
to stop wasting money on AIDS.) And while they will not say
they actively encourage unsafe sex, the message is clear.
"If you're gay," says Bellefountaine, "you shouldn't be any
more or less afraid to fuck with or without a condom than
a straight person. That's our message."
Can a message be criminal? What if it encourages
someone to inaction rather than action? With the rate of infection
rising in certain quarters after years of holding steady,
the words infuriate just about everyone who works in AIDS.
Larry Kramer calls them "certifiable, absolutely certifiable."
The last time he saw the members of ACT UP San Francisco,
they yelled at him, denounced him at an AIDS benefit. "We
ended up in fisticuffs," he says. "We wound up rolling around
on the floor." Mike Shriver, the San Francisco AIDS czar --
officially, the mayor's adviser on the issue -- says he now
spends 30 to 40 percent of his time battling the AIDS deniers,
in court, in paperwork, in pain-in-the-ass phone calls. He
needs that time, needs to give it to the community. He is
tired. He's had two bouts of walking pneumonia since the fall.
But he rallies. When you ask him about ACT UP San Francisco,
the epithets roll out -- "a bunch of irresponsible, reckless,
childish, evil, mean-spirited, lying, hypocritical, bigoted..."
The list goes on. Shriver can hardly contain himself. This
feels personal. It gets under his skin, offends everything
he's done since the day he learned he was infected. ("November
13, 1989, 4 P.M., Health Center 2. Worst day of my life.")
It frustrates his sense of gain -- the progress felt after
years of loss. He finds the AIDS deniers have thrown something
more toxic than Kitty Litter into the air.
"They are one of the things that have ripped
the fabric of prevention in this city," he says. "They are,
I would suggest, one of the real causative agents for the
rise in new infections. They have so unsettled the system
here. They have gone to adolescent and young-adult HIV forums
and stood outside handing out T-shirts that say AIDS IS OVER.
What they've done is they've laid the foundation that no act
is too violent to inflict upon the community. And I consider
a violent activity dissuading youth from getting antibody
tested."
The issue is no longer just a local one. Recently,
through the Internet and the mill of conspiracy theories,
AIDS denialism has spread, gained an odd, reactionary currency.
The band the Foo Fighters now promotes the idea on its Web
site. (The subject is a passion of the bass player, Nate Mendel.)
An HIV-positive mother named Christine Maggiore has made the
issue a cause celebre, refusing to have her son tested or
treated. (She's written a book called What If Everything You
Thought You Knew About AIDS Was Wrong?) And in the most bizarre
expression of AIDS denial yet, the president of South Africa,
Thabo Mbeki, stunned an international AIDS conference last
year when he said he wasn't convinced HIV causes AIDS. "It
seemed to me," he said, "that we could not blame everything
on a single virus." In response more than 5,000 scientists
signed the Durban Declaration, an emphatic restatement of
the facts: "The evidence that AIDS is caused by [HIV]," it
read, "is clear-cut, exhaustive and unambiguous...It is unfortunate
that a few vocal people continue to deny the evidence. This
position will cost countless lives."
In the United States, there have been no studies
on the influence of the denialist message and thus no way
of telling how many people give it credence or have adjusted
their behavior accordingly. Such things aren't easy to track:
The AIDS deniers sow doubt, after all, sometimes just a shadow
of doubt. Still, people who run HIV outreach programs for
gay youths say they frequently meet confused young men these
days. "Very often we get asked that question by HIV-positive
and HIV-negative young people," says Demetri Moshoyannis,
who until recently ran a group called Bay Area Young Positives.
"They say, 'I've heard that HIV doesn't exist, that the whole
thing is a scam.'"
Why now? Why has denialism sprung up? Actually,
it's a revival. The deniers' main claim, that HIV does not
cause AIDS, has circulated like a rumor since the 1980s --
based largely on the work of one Berkeley biologist, Peter
Duesberg. The theory has been so thoroughly repudiated by
the science that it now resembles more fantasy than hypothesis.
But we are in a strange period in the epidemic -- a mix of
hope and fatigue, in which fantasy can take root. The miracle
drugs have worked their miracles: Protease inhibitors and
new drug combinations have brought a magical suspension of
the Black Plague aspects of the disease. People still get
sick, people still die, but not as quickly or with the same
endless opportunistic infections. (And the AIDS deniers are
right about one thing: Many of the drugs are highly toxic,
extreme chemotherapy, though they have prolonged countless
lives.) To be sure, the drugs are not a cure, but they have
made the disease less visible. As one AIDS researcher told
me, "There's no way the AIDS deniers would have flourished
twenty years ago, when people were dropping like flies. They
would have been run out of town."
***
Wherever the virus goes, they follow. They follow
it across town to Hunter's Point. Wherever it shows up, the
AIDS deniers are there to refute it.
Lately, there's been some disturbing news that
the virus has made new inroads among African-American communities;
one study of gay black men in six cities shows an alarming
30 percent infection rate. So the city moves its public-health
meeting to Hunter's Point, a largely black neighborhood, and
the AIDS deniers follow. David Pasquarelli and Ronnie Burk
are in the car. They've brought pamphlets and brochures, copies
of Christine Maggiore's What If Everything...About AIDS Was
Wrong?. Gonna blanket the place with them.
In the car, I tell them I'm still confused:
Do they mean to say that AIDS never existed? Why do they say
the new drugs are the killers when those drugs weren't even
around when the worst wave of the epidemic hit? Are they claiming
that hundreds of thousands of gay men did not die in the 1980s
and '90s?
They hear this one all the time. David Pasquarelli
explains, "Well, yeah, gay men were getting sick in the early
'80s," he says, "and there were gay men that were dying in
large numbers. The reasons are related to recreational and
pharmaceutical drug abuse."
Come again?
Poppers, he says. Gay men were doing poppers.
They were doing all kinds of drugs back then, Pasquarelli
says, a lot of cocaine, a lot of antibiotics to keep the clap
away, but it was poppers -- those vials of amyl nitrite the
disco boys inhaled -- that really did them in. Wrecked their
immune systems.
The effects of amyl nitrite have been well researched.
About all it does is dilate the blood vessels, giving you
a brief light-headed rush. But to hear Pasquarelli talk, its
powers are enormous. "If you use it repeatedly, chronically,
for years, it will cause lesions on the skin. That's called
Kaposi's sarcoma. And then it will destroy the route of inhalation
through the nose and mouth; it wipes out the cilia in the
lungs, which causes infections to be more prevalent. So that's
what the gay men got sick with: pneumonia and Kaposi's sarcoma."
Pasquarelli had moved quickly from the idea of blood-vessel
dilation to full-blown AIDS. For a man whose motto is "Question
HIV," he didn't seem to be questioning much. The poppers theory
was the old work of Duesberg. What of the people who never
took poppers? What of the people in Africa dying of AIDS who
never took poppers?
Perking up in the backseat -- this Africa business
is his area of expertise -- Ronnie Burk straightens his posture.
"Well, people are dying," he says. "There's no question that
people are dying." But he says the situation is different.
"I did research on this. We did a panel two years ago on the
subject. The problems in sub-Saharan Africa are one of famine
and civil war that has gripped the area for over a decade."
Burk says it with such simplicity of authority;
he has the health status of a continent figured out. There's
no AIDS there. It's just a conflation of the symptoms of other
hardships and diseases -- sicknesses, malheureusement, endemic
in Africa, like tuberculosis, cholera and malaria. He says
Western health officials keep grafting their perceptions onto
the continent, changing the definition of the disease; all
you need is diarrhea, weight loss and a cough, and you've
got AIDS.
Pasquarelli and Burk refuse to give the disease
any ground or the virus any agency. "What is HIV?" I ask them.
"Is it nothing?"
"If it's anything, it's a harmless retrovirus,"
says Pasquarelli. "I believe that what it is is a laboratory
artifact; it's a mistake." Just a case of "sloppy science,
a lot of deregulation at the time under Reagan."
Do you think it was a conspiracy? "I don't know
-- some people are really into conspiracy theories," Pasquarelli
says. "But I'm of the mind-set that if there was any conspiracy
to create a lethal virus, it was a dud; it failed; it's not
taking off; it's not happening."
"Hey," says Ronnie Burk suddenly, looking out
the window as we enter Hunter's Point. "This is the project
area where O.J. Simpson lived!" He seems excited. We're going
to tell O.J.'s people that AIDS is a scam.
I tell him I didn't know O.J. lived around here.
"Yeah," says Burk. "He was a football player
in this neighborhood." (Burk turns out to be mistaken; O.J.
grew up in the projects on Potrero Hill.)
We have not brought Kitty Litter with us today,
only propaganda, since Pasquarelli and Burk have to tread
carefully these days; there are various restraining orders
and criminal cases against them. As the local residents file
into the community center, we slip in behind them, into the
gymnasium, where the two ACT UPers go into propaganda overdrive
-- filling every folding chair, every empty hand with flyers,
books, denials. What If Everything Was Wrong...Wrong...Wrong...
Some people accept them; some look mystified. I watch a middle-aged
black woman enter the room and walk to the information table.
She casually takes whatever handouts are there. Pasquarelli
and Burk have already sneaked their books onto the desk --
their little pile looks official next to the health commission
reports and studies -- and so the woman doesn't even notice
that one of the things she has picked up, one of the things
she'll take home with her tonight, begins with the sentence
"Contrary to popular belief, AIDS...is not a disease."
The first time she heard about AIDS, she thought
they were diet candies. Strange, she thought. Why are people
dying of diet candies? But those turned out to be Ayds: you
could buy them on TV; and this - this turned out to be something
else.
Everything about Christine Maggiore's experience
with HIV seemed unreal, a shade or two beyond belief. All
she wanted was a cheap Pap smear, but she got so much more
that day in '92. The gynecologist convinced her it was her
duty as a feminist to take an HIV test -- no worries, nobody
in the clinic was testing positive. But when the doctor called
back with her results, it was the gynecologist who broke down
in tears.
Turned out an old boyfriend tested positive,
too. After that, Maggiore's life was all HIV, all the time.
She became an AIDS activist in Los Angeles. And she learned
to live with the virus. Friends would call and say, "How are
you?" I'm fine, she'd say. "I mean, how are you?" they'd repeat.
Actually, she felt pretty good, compared to the corpses around
her, the women taking experimental drugs, growing thin and
going blind. She began to think, I don't want to go this route.
Eventually, friends hooked her up with Dr. Duesberg, a man
they saw on TV who said HIV doesn't cause AIDS. They spoke.
He told her his theories. He gave her hope and magazine articles.
She's never taken the drugs. She thinks that's
what's saved her life these nine years, not letting some doctor
force AZT down her throat. It could be that for the time being
she's asymptomatic, but she says she's perfectly healthy.
In fact, she fears it's the other ones, the ones who go to
their doctor, get their blood counts done, take the little
pills -- it's these people who will go first and go badly.
Christine's so different from the other AIDS deniers, so sweet
and positive and cool, you wish her a long life, but you worry.
Now she has a kid, Charlie, a beautiful 4-year-old
boy. "We didn't plan Charlie," she says. In fact, when she
found out she was pregnant, she and her husband chose not
to have the baby; she never wanted to be an HIV-positive mother.
But she had a change of heart -- she backed out of an abortion
-- and now Charlie is the love of her life.
But is little Charlie HIV-positive? Christine
doesn't know and doesn't want to know. She will not have the
child tested because she has concluded the test is not definitive
-- it can only confirm the presence of antibodies. She says
she's found a pediatrician who supports her decision.
Not testing Charlie could be bad for him, but
she says he's the picture of health. He's been sick only once
-- threw up on the carpet two weeks ago.
But what could be worse for Charlie is that
Christine chose to breast-feed him. For all she knew, Charlie
could have been negative -- why did she have to breast-feed
him? That's one of the primary methods of mother-to-child
infection. Even if she had the smallest of doubts about HIV,
that it was real, that it could do harm, why couldn't she
have tried a bottle?
She bristles. She has no doubts. Plus, she asks
me, have I seen what's in baby formula? Safflower oil and
high-fructose corn syrup. "Everything in our house is whole-grain,
organic, and I'm gonna feed my son safflower oil and high-fructose
corn syrup?...I can't do that," she says. "I know better."
So safflower oil and high-fructose corn syrup
are worse than HIV?
It is too late. Christine Maggiore is going
to do what she thinks is right. And she has Charlie. The boy
is a dream. Just a kid, but already he knows he is part of
something.
"Every once in a while, he used to look at me,"
she says, "and he goes, 'HIV, Mama!'
"Like he was really proud."
***
Back at the ACT UP office, back at "The Space,"
as they call it, Michael Bellefountaine seems to run things.
The group's highly profitable marijuana club, one of a handful
remaining in the city, is open for business most days from
noon to seven. (The group is choosing to ignore a recent Supreme
Court ruling that appeared to outlaw such clubs, and so far,
the local D.A., a supporter of medical marijuana, has left
the club alone.)
All day long, people stroll in, on canes if
the sickness has hobbled them. They go to the counter, and
Bhaskar, the soda jerk, takes their orders. What'll it be?:
Orange Durban? Mariposa? Millennium Mex? The smell is pungent,
and the dope is bomb. Prices vary -- they're listed on the
board like deli meats. You can get an eighth of Green Mex
for $15, but the Ocean Breeze will knock you on your ass for
$55.
People call us crazy, says Bellefountaine, but
"crazy people don't start multimillion-dollar businesses."
And that's what the cannabis club is -- a well-run business.
The group claims it has 1,400 card-carrying members and revenues
of $100,000 a month. Which is an extraordinary amount of dope
money. Eighty percent of that money goes straight to the growers,
and with the rest, the AIDS deniers pay their bills. So it
is this -- some very good reefer -- that is funding the group's
activities. Bellefountaine likes to think his customers agree
with his views, whether they're on HIV or animal rights (the
group is also anticruelty), and he soapboxes when he can,
but it is far more likely that they keep coming back because
his weed is so excellent. The best in town, one buyer told
me.
And what of the sickness that brings the buyers
here, those men on canes who can barely make it to the counter?
Most of them, ironically, are AIDS patients. Which means the
group is profiting from a sickness it doesn't believe in.
Bellefountaine doesn't concern himself with that. You deserve
a joint, he says, even if people simply think you are sick.
That's stressful, he says. That's a kind of sickness.
Bellefountaine often speaks this way, with the
strain of self-justification. He has learned the art of circular
logic, how to answer each question on a different plane of
reason. When he feels cornered, there is always anger, the
threatening pitch in the voice. Bellefountaine is gifted at
knowing just the right moment to call someone a homophobe
and, in doing so, disarm him. ("What kind of homophobic crap
is that?" he fired back at me when I asked him if, as I'd
been told, his shrillness had chased out older members of
ACT UP.) All of which might explain why he has come to lead
this group. His assertive approach has a compelling, bulldozer
effect on people; he comes off high-strung, ready for a fight
-- he has thought about it all before, mister, long before
you ever poked your head around here. When he is kind, and
he is occasionally kind, he speaks with an element of exhaustion,
as if he were fighting global lunacy.
If you spend enough time at the space, you come
to accept the circular logic -- the way the AIDS deniers will
sometimes say defiantly, "I have AIDS," or "I'm an HIV-positive
man," and then say it means nothing. It's as if they want
it both ways. They assert the right to dismiss the disease
and all who have fallen to it, but they still want the authority
of its curse. They call themselves survivors -- "I saw my
generation go down. I didn't go down with them. I expect a
medal," Ronnie Burk tells me -- but in their own minds they
have survived nothing so much as a hoax. Occasionally, they
have to correct themselves. Burk is careful to say his former
lover "died of AZT," not AIDS, but Bellefountaine sometimes
slips. "I still say epidemic," he says. "I've been in ACT
UP for twelve years now. I say epidemic, the AIDS epidemic.
Even though I don't think it is anymore."
***
The slipups and the shifting logic are to be
expected. Whether they are in ACT UP or Africa, the AIDS deniers
are constructing their own reality. To them, the scientists
are just a broken record now -- "the evidence...is clear-cut,
exhaustive...unambiguous" -- and they are no longer listening.
To a surprising degree, the virus allows them the space not
to listen, to create the reality they want, at least for a
while. The virus is slippery, defiantly mutable. For the infected,
there is no telling when one will fall sick. An HIV-positive
person can remain asymptomatic for ten, fifteen, twenty years;
another may lapse into full-blown AIDS within months of infection.
The appeal of denial in this case, of staving off the inevitable,
is not hard to grasp.
Political leaders have partaken of the same
luxury for different reasons. During the band-played-on stage
of the epidemic, President Reagan refused for years to utter
the word AIDS. Even today, for the Mbekis of the world, there
remains something attractive about denial, no matter the difficulties
involved in embracing it. What went largely unremarked upon
during the furor over Mbeki's comments is how politically
expedient it was for him to point beyond a virus. In the speech,
Mbeki blamed poverty, not HIV, as the root of South Africa's
evils, and there was a sense that he was putting the West
on notice, declaring his own agenda, resisting not so much
the disease as the prognosis -- a Western prognosis, which
involves drugs from pharmaceutical conglomerates, drugs the
government cannot afford. (Indeed, in a letter to global leaders,
Mbeki declared that in the fight against HIV, "a simple superimposition
of Western experience on African reality would be absurd and
illogical.")
ACT UP San Francisco is another story. There
is something different, something more deliberate, about the
motivation of the members. The leaders of the group, Pasquarelli
and Bellefountaine, have been weaned on the anger they have
felt as pariahs, as tainted gay men -- Pasquarelli speaks
constantly of the idea "that gays are diseased, that gays
spread death" -- and they have learned to rely on its power.
"The only thing that unites us," says Bellefountaine, "is
our anger. We are united in anger." They have been weaned,
too, on a brand of activism that demands an aggressive agenda.
When that agenda began to lose its radical urgency, when it
became a part of the establishment, they continued to react,
spinning a countertale to the epidemic. This countertale may
force their brains to work harder, to accommodate irreconcilable
points of logic, but it also affords them the best of all
worlds. It allows them not only to deny their own health but
to continue to rage, to go on living in anger.
***
For all the discord the AIDS deniers have caused
-- in Durban, in San Francisco, on college campuses where
they sometimes come to speak -- what is surprising is how
truly small the circle is: In many ways it comes down to one
man: Duesberg.
Turns out President Mbeki relied on Duesberg
for advice on HIV, flew him out to South Africa, had him serve
on a national AIDS advisory panel. Which makes sense -- Duesberg
is and always has been one of the only sources of the theory.
You can follow the circle: The Foo Fighters Web site connects
you to Christine Maggiore's Web site. Maggiore wrote her book
after meeting Duesberg and being intrigued by his theories.
Duesberg is buddies with the ACT UP people, who revere him
as a latter-day Galileo.
Duesberg plays the role, too. When you visit
his office at Berkeley, you get the feeling he is being gradually
snuffed out, that the university is embarrassed by him and
so has placed him in an office space the size of an airport
toilet stall. Duesberg is from Germany, and although he has
lived in the States since the '60s, he still speaks with a
crippling accent. He sits in a lab coat, the strands of his
white hair hanging electrically in the air, and begins talking
about the Untermensch. The scientific community suppresses
his work, he says, "because it comes from the Untermensch
[the troublemaker] -- the one who has questioned national
dogma, U.S., and therefore global, dogma. If you don't follow
the U.S., then you get missiles fired -- F16s or something
like that." He says his situation is "a bit like Saddam Hussein."
He feels the pressure here at Berkeley. "I used
to have a lab with ten people." He's won awards for his virological
research on cancer. Then, he says, he started asking stupid
questions about HIV. Now, for ten years, all he gets to teach
is undergraduate science courses. "Never published one paper.
Nothing on AIDS, nothing on cancer, nothing on retroviruses,
which is, of course, my expertise. They think I am seducing
the young with bad ideas."
Once you engage him on those ideas, you realize
it's a wonder the tolerant deans of Berkeley have allowed
him to stay as long as they have. Duesberg's earlier cancer
work, isolating genes, had been groundbreaking, but his HIV
science is remarkably imprecise. I ask him about retroviruses
such as HIV. Absolutely harmless, he says, and then, with
a German giggle, "As we say in Oakland, they don't do no nothing."
Besides, how could there be a new, dangerous virus? All the
big bad viruses have already been found -- polio, hepatitis,
influenza, kaput. "God hasn't created anything lately; at
least nobody has seen him doing it." There is nothing new
under the sun, he says -- just technology, just Hubble-strength
microscopes built to find tiny things that make us fearful.
And sex? How could sex cause fatalities?
"Promiscuity is roughly 3 billion years old,"
he says. "The only known source of life is sex, promiscuous
sex. It has been tested very long, and that's produced 6 billion
people."
Along with, I hesitate to add, some nasty cases
of VD.
The doctor throws his hands in the air. "I mean,
sure, they get a few things -- syphilis or gonorrhea or crabs
or whatever or herpes, but you're not going to die from that,"
he says. "Venereal diseases were around long before doctors
were around, and they didn't kill. Only when doctors came
along did it get bad."
Certainly, the good doctor must be forgetting
the syphilis epidemic of the fifteenth century, the one that
devastated Europe's population, or the outbreaks that continued
well into the twentieth century until doctors found drugs
that could combat them.
What about safe sex? I ask him. Has he supported
condom use?
He shrugs. "It's not my business. I never use
them."
Could he supply proof for his poppers theory?
He cites old studies showing heavy drug use
-- poppers and cocaine -- by gay men just before AIDS appeared,
but the studies mean nothing. They show no causality. Even
he concedes that he has no direct proof. "Well, let's say
proof principle," he says. He still believes what he believes.
Drug use is coming down, he says, "and that's why AIDS is
coming down, if you ask me."
Can he prove even that? How does he know that
drug use is going down?
"I can only tell you from my Berkeley experience
-- well, from other experiences, too," he says.
You were doing drugs? I ask, searching for any
empirical evidence.
"I did some," he says. "And guess how I got
it? I could have asked any student in the hall. 'Would you
like to party?' 'All right, when do you need it?' So it's
about $90 for a gram of coke. So I had it an hour later. If
I now asked a student 'What about some coke?' they would call
the police. I would be out of here two hours later." He smiles.
"Times have changed a bit."
***
Although they refute the epidemic, the members
of ACT UP San Francisco still fill their days with the disease,
still act, in many ways, like patients. Even the group therapy
of their monthly potlucks reinforces the feeling. They have
made the space their life. The club is a daily hangout, bleeding
into night, and in this context it is often hard to get any
one person alone, to sit and talk uninterrupted. By spending
much of their time together, they find the steadiest and strongest
reinforcement of their views. When Pasquarelli lent me a book
they'd all read, "The AIDS Cult," he was trying to show me
how mainstream culture had accepted the idea of AIDS, but
the book seemed to speak more eloquently of the group. Society
conspires to "make us 'sick,'" the book says. "This is not
a conspiracy in the sense of a conscious plot, but in the
original, more profound sense of a 'breathing with' -- breathing
the same mental atmosphere, sharing the same assumptions,
mutually benefiting and so, collaborating, toward an unconscious
desired result."
What happens when the people around them --
the ones with AIDS who refuse to take drugs -- what happens
when they fall sick or die?
I ask Bellefountaine and Pasquarelli if any
members of ACT UP San Francisco have died in recent years.
Yes, they say, a couple of people. Bellefountaine says they
died of "pure diseases of poverty," and Pasquarelli nods his
head in agreement. They speak mournfully of a colleague, Forest.
"Forest Baker broke his hip and was never the
same again," Bellefountaine says. "He did great porno collages,
but he broke his hip and then was never, ever the same." An
organization that tracks AIDS deaths cited Baker as a casualty,
and an obituary in a local paper said he died of AIDS at 54
in 1997, but Bellefountaine insists it was difficulties from
a fracture. "That began his decline, and he was literally
dead within months after breaking his hip."
Bellefountaine himself stopped going to his
doctor a couple of years ago. It was depressing. "The last
time I went, my numbers had gone down," he tells me one day
when we are sitting alone. His T-cell count was down; his
viral load was up. "I left there feeling really like the numbers
were making me sick. I felt fine going in, anticipated the
numbers to [have improved], because I felt so good, and when
I left, I felt sick to my stomach because the paperwork just
told me that I was sicker than I was. That's when I said I
can't play this game. I can't play this emotional game about
where your counts are."
I can understand that part. How's your health?
I ask him.
"I'm healthy." A pause. "I believe there's immune
dysfunction. OK? I have night sweats; I associate that with
stress, though. What I find the problem to be -- I'm in perfect
health, I feel. The problem becomes when you start getting
sick you assume it's HIV as opposed to getting to what the
core problems are. I have lymphoma. I don't take chemotherapy.
Does the lymphoma hurt sometimes? Yeah, it really does. I'd
rather put up with that than get on chemotherapy."
You have lymphoma? Though I knew anyone could
get lymphoma, it's a common AIDS-related condition.
"Yes," he says. "Am I fronting? Am I really
miserable, and I crawl into my deathbed and just put on a
brave face for the public? No. I'm fine. I can jog, I can
-- you know, if I was a bit more fit I could jog around the
block, I can do cartwheels, I'm healthy."
Do you ever have doubts?
"That I'm wrong? Yeah." He says one of the guys
at ACT UP came up with a quote from The Stepford Wives. "It
says, 'If I'm wrong, I'm crazy. But if I'm right, it's so
much worse than if I'm wrong.' So yeah. You know what? If
I'm in denial and denial gets you a few extra years because
you just don't know you're sick, well, great, denial's good."
***
I should have known Ronnie Burk was sick. He
did not look good when he walked into the space that day.
Something was off, something ill in the air.
He came over to where Michael Bellefountaine
and I were sitting, and I said I wanted to interview Ronnie
now, but when he sat down he seemed to have difficulty speaking.
He curled into the corner of the couch, eyes bugged, and stared
off into middle space.
I really had only one question for him. After
having heard all the tales of ACT UP San Francisco, I still
couldn't understand something. Why did he throw cat shit on
Pat Christen's head?
"That's a good question," he said shakily, and
then hesitated. I looked more closely at him -- he'd gone
gray with chills. He stared at the floor, at the blue haze
of light above me, but he would not look at me. And then he
stood up and ran.
Eventually, he would tell me why he dumped it
on her. Because she was a fat cat. Because he heard she made
$200,000 as an AIDS activist. Because he was angry. But that
explanation would have to come later. Because Ronnie Burk
was getting sick.
He'd run to the sink, behind a curtain in the
middle of the room. I could hear him vomiting, and the energy
in the room simply stopped, was stricken.
No one moved.
In a few minutes, Ronnie made his way back to
the couch, embarrassed, wiping his mouth with a napkin. "I'm
sorry," he said. "I'm having dental work, and I've had a bad
day."
Michael offered him a seat and a joint, and
Ronnie said yes, he was feeling better now. He sat down and
smoked -- he took a few hits, actually, and relaxed. Everyone
relaxed. And the room slowly returned to normal.
Jim Nelson is GQ's assistant managing editor
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