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HOW TO SURVIVE A PLAGUE
The Inside Story of How Citizens and Science Tamed AIDS
The Inside Story of How Citizens and Science Tamed AIDS
By David France
Illustrated. 640 pp. Alfred A. Knopf. $30.
Illustrated. 640 pp. Alfred A. Knopf. $30.
A
question has always hung over the reaction of gay men to the plague
that terrorized and decimated them in the 1980s and 1990s: Why did they
not surrender? They came of age in an era of intense stigma; and AIDS,
as many Christian fundamentalists gleefully noted, appeared almost as
confirmation that the wages of sin are death. They were surrounded by a
culture that emphatically believed that they had asked for this, that
mass death was, as National Review put it, “retribution for a repulsive
vice.” How did they not entirely internalize this? Why, after a brief
moment of liberation in the 1970s, did they not crawl back into the
closet and die?
David
France’s remarkable book tries to answer that question. It’s the prose
version of France’s Oscar-nominated documentary of the same name — and
somehow manages to pack all the emotional power of that film with far
more granular detail and narrative force. I doubt any book on this
subject will be able to match its access to the men and women who lived
and died through the trauma and the personal testimony that, at times,
feels so real to someone who witnessed it that I had to put this volume
down and catch my breath.
Here
again are the manifestations of terror: the purple cancerous lesions of
Kaposi’s sarcoma, fatal when they migrated to your lungs; toxoplasmosis
— a brain disease that turned 20-somethings into end-stage Alzheimer’s
patients; pneumocystis carinii, which flooded your lungs until you
drowned; cytomegalovirus, which led to blindness, so that young men in
AIDS wards were “hugging walls and scraping the air to find their
nurses”; molluscum contagiosum, covering the body in “small,
barnacle-like papules” that oozed pus; peripheral neuropathy, with which
a mere brush of a sheet against your skin felt like an electric shock;
and cryptosporidiosis, a parasite that took over people’s
gastrointestinal tract, slowly starving them to death. It’s been over a
decade since those Latin nouns were household words in gay life, and
reading them still traumatizes.
Here’s
the emergency room at St. Vincent’s Hospital in Manhattan in 1984:
“Scanning the rows I could see that every third or fourth man had ‘the
Look’ — sunken cheeks, sparse hair, eyes that showed fear, shoulders
that bent in pain. One, all spots and bones, balanced painfully on a
pillow he’d brought along from home. Another seemed to be dozing; his
head was cocked backward onto a companion’s arm, and his mouth and eyes
were both wide open. The blind, like horses and snakes, don’t need to
close their eyes to sleep.”
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| Outside the World Health Organization at the United Nations, New York, October 1987. Credit Alon Reininger/Contact Press Images |
In
the end, hundreds of thousands would die often agonizing deaths,
disproportionately taken from a closeted and isolated minority that had,
at that point, barely any contact with the broader world, let alone
mainstream science or government funding. This was a time when only one
funeral home in Manhattan would embalm the dead; when 20 states debated
laws to quarantine or control the sick; when Bill Clinton signed a law
barring any non-American with H.I.V. from entering the country (the
restriction lasted until the end of 2009); when it took two years and
almost 600 dead after AIDS was first detected as a unique disease for
this newspaper to mention it on its front page; and when President
Reagan could publicly throw back his head and laugh at a crude AIDS joke
as late as 1986.
The
resistance began with the strange and unaccounted-for appearance of
posters on the walls and windows of New York City: the Nazis’ pink
triangle inverted on a black background over the words
“SILENCE = DEATH.” It grew with the small heroism of doctors like the
permanently frazzled Joseph Sonnabend in Manhattan and spread slowly to
gay activists who were as much at war with one another as with the
disease. It took years to gain traction, but the courage of the
resistance turned out, over time, to be as persistent as the virus
itself. And the merit of this book is that it shows how none of this was
inevitable, how it took specific, flawed individuals, of vastly
different backgrounds, to help bring this plague to an end in a decade
and a half.
This
is not a hagiography; it’s a history and often an unsparing one. There
were those, France recalls, who, desperate to maintain the sexual
freedom that had given their community meaning, staggered forward in
acute denial. There was the despised Larry Kramer, fresh off excoriating
gay men’s sex lives in his novel “Faggots,” who bravely confronted the
core problem of transmission, but who also displayed a personal
viciousness that derailed the movement as much as galvanized it. There
was Anthony Fauci at the National Institutes of Health, who emerges as a
key figure in moving the science forward alongside activists, but whose
stubborn refusal to permit an off-label prophylactic treatment for
pneumonia led to countless premature deaths. Robert Gallo, the most
brilliant of all the scientists trying to figure out a new retrovirus,
comes across as an intellectual thief and petty egomaniac whose battle
with Luc Montagnier for credit for discovering H.I.V. was a distracting
sideshow. Charles Ortleb was the visionary editor of New York Native, a
small magazine that for a long time was the only real source for news
and information about the epidemic. The book charts his descent into
conspiracy theories about African swine fever.
There
are a few genuine heroes: the chain-smoking onetime punk Mark
Harrington, who mastered both the science of H.I.V. and the federal
bureaucracy so that spectacular protests could be backed by rigorous
analyses to force the government to do better; Garance Franke-Ruta, a
high school dropout who became one of the key women, along with Iris
Long, in mastering treatment options and scientific data; Peter Staley, a
closeted Wall Street trader, who found his life’s purpose by becoming
first a radical activist and then perhaps the most important liaison
between the activists and the scientific community; and most movingly,
Michael Callen, an effeminate reed of a realist, who refused to be a
passive observer of his own death. It was Callen who pioneered the idea
of patients’ proudly controlling their own destinies and treatments. “We
condemn attempts to label us as ‘victims,’ which implies defeat,” he
declared as early as 1983, “and we are only occasionally ‘patients,’
which implies passivity, helplessness and dependence on the care of
others. We are People With AIDS.” It was an idea that has transformed
medicine since.
And
what France also gets right is the narrative. This was not a long,
steady march toward success. It was a contentious, sprawling, roller
coaster of dashed hopes and false dawns — a mini-series where major
characters suddenly die and plot twists shock. Nine years into the fight
against H.I.V., the average survival time had increased from 18 months
. . . to 22. As late as 1994, after more than a decade of organization
and activism and research, the activists had split between centrists and
radicals, and the new class of drugs, protease inhibitors, were failing
in early clinical trials. Worse, the deaths climbed in numbers year
after year. AIDS was not an early crisis that finally abated; it was a
slowly building mass death experience. The year with the most corpses in
America was 1995. The darkest night really was just before the dawn.
You
wonder, of course, how many of those deaths could have been avoided.
France makes a strong case for the staggering insouciance of government
at all levels, especially in the early years. He’s brutal about
bureaucratic incompetence and political cowardice. And yet he is also
fair enough to show that the science of disabling a dazzlingly resilient
retrovirus was fiendishly difficult and that by 1982, 42.6 percent of
gay men in San Francisco and 26.8 percent of gay men in New York had
already been infected. The community’s own adoption of safer sex — and
the vital gains activists made in pushing for cures and treatments for
various opportunistic infections — made the most difference in
preventing further catastrophe. But in the end, science takes time. Some
made it over the line before the war ended. Many never made it. Some of
us live lives still haunted by that distinction.
And
what lingers in France’s book is the toll that memory took and still
takes. These young men both witnessed their friends and lovers dying
excruciating deaths, knew that they were next and yet carried on. Some
of this was a gut-level human desire to live; some was a means to
compensate for the grief that would otherwise overwhelm them; but a lot
was simple, indelible courage. This courage didn’t just end a plague; it
revolutionized medicine and, in turn, became the indispensable moral
force that led, as the plague abated, to the greatest civil rights
revolution of our time. This is the first and best history of this
courage, and a reminder that if gay life and culture flourish for a
thousand years, people will still say, “This was their finest hour.”
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