The long read: As reports of a mysterious plague swept through the homosexual community in the 1980 s, activists developed shock tactics to get the help they desperately needed.
The experience of demise, which had bind them together a quarter of a century ago, unexpectedly reunited them on an unseasonably warm January afternoon in 2013. They made their way down East 32 nd Street in Manhattan just after two oclock, wending sedately towards the stark black doorway of the Cutting Room, a performance space hosting the memorial service for Spencer Cox, one of the countrys most recognisable Assistances activists. Long before the glass doorways swayed open, a line stretched down the block. Taxis deposited luminaries from the worlds of science and medicine, of theatre, ad, media, of activism, art, and academia, people from all over the United States, from Europe and Africa. Many of them were hollow-cheeked and balanced on canes or on one another, slackened by age or disease or a reluctance to re-enter the community of the grieving. Even the nimble among them wore haunted express. If you knew what to look for, you assured in their faces the burden of a shared past, the years and years of similar services. This was what survivors of the beset looked like.
The crowd swelled to 500. Some among them were adorned in mementos: faded protest buttons or T-shirts with militant mottoes. This was the generation that opposed Aids from the dawn of the global pandemic. Most had been members or supporters of the Aids Coalition to Unleash Power, or Act Up the revolutionary protest organisation that started in New York City but went on to count 148 chapters in 19 countries, with perhaps 10,000 members at its peak. The movement collapsed in the mid-1 990 s, when the advent of effective medication eventually staunched much of the succumbing. In the decades since then, it had seemed that the menace had receded, at least in America. But death convoked them one more time.
Few people represented the outbreaks long history in America more than Cox. A college dropout, he was just 20 years old when he received his grim diagnosis. Dedicated only a few months to live, he threw himself into Act up, becoming a central player in the movements treatment and data committee, where patients and their advocates puzzled through the social sciences of virology, chemistry, and immunology. Their insights won them audiences with researchers in the deepest corridors of science audiences, then respect, then working partnerships; it was the first time patients had joined in the search for their own salvation.
Cox, a consummate networker, illustrated the developing science by submitting his own health complications to the scrutiny of reporters. In his drive to give the disease a face, he maintained no facet of their own lives with HIV offstage not his rapid viral mutations, his enlarging lymph nodes, the humiliating and painful diarrhoea that regularly sidelined him, or the cruel complication that turned his left eye cloudy and useless.
That was how I first gratified him. In the winter of 1988, I was reporting for the Village Voice. He brought me his latest laboratory results to help describe how certain experimental medications were thought to work, and how, in fact, they uniformly failed. We met in a dark coffee shop late in the morning. Short and smooth faced with dark eyes and floppy black hair, he arrived Brando-style in industrial work boots, jeans tight as a sunburn, and a black leather bomber jacket over a white T-shirt the uniform of Act Up. His youth disarmed me. He looked like a teenager , has still not been able to grow a beard. But he displayed a researchers grasp of his own cellular tapestry and a facility for rendering complex immunological principles into everyday speech. He was anything but self-pitying. Reaching into a canvas army surplus container, he spun a sheaf of his own laboratory results across the table towards me, accompanied by a line from Bette Davis that was lost on me. Until shortly before then, Cox had learned much of what he knew from the movies, especially those of the 1940 s and 50 s, or the theater, which had been the subject of his aborted education.
Over the ensuing years, he became a principal source for much of my Aids reporting for New York magazine, the New York Times, GQ, Newsweek, among others, and among the most effective therapy advocates in the field. But his seminal accomplishment came in the area of biostatistics. It was Cox who conceived the medication trial inventions that in record time helped to bring to market the therapies that stopped HIV from being an automatic death penalty. He claimed no credit for this, and until shortly before his death merely a few insiders were aware that a self-taught person with Aids had made this history-changing contribution.
As motions go, the one Act Up spearheaded against HIV was unique. The virus induced its traumatic appearance at different times across the globe perhaps as early as 1920 in what is now known as the Democratic Republic of Congo. After sporadic cases through the 1970 s, the viral outbreak was first reported in New York City and California. On 3 July 1981, Center for Disease control released a report stating that symptoms now known to be typical Aids-related maladies had been exhibited by 26 lesbians humen. That same day, the New York Times reported 41 cases of Kaposis sarcoma a rare and often rapidly fatal kind of cancer affecting 41 gay men in New York and California. Health authorities in the United Kingdom acknowledged the first cases there subsequently that year, and outbreaks reached a handful of European and African nations in 1982. Today , no country has been spared, and 35 million are infected.
But throughout the plague years when no effective treatment existed, and death was quite nearly assured New York City remained the epicentre of the disease, and America the main obstacle to research and therapy. It took two years for the citys mayor, Ed Koch, to acknowledge its existence publicly. President Ronald Reagan waited six. But their words were hollow. Both continued to practise obfuscation, budgetary strangulation, and aggressive apathy even as the number of dead Americans passed 20,000, and 1.5 million more were believed to be infected. By the end of 1986, the citys lesbian ghetto was a tinderbox. Along Christopher Street you could see the dazed looking of the doomed, skeletons and their caregivers alike. There was not even a false-hope pill for physicians to prescribe. The estimations we heard were that half the lesbian humen in New York were already infected, and for the rest of us it was simply a matter of time.
Then one morning in December, bus shelters and bank windows in a large part of Manhattan were covered with large, ominous posters, featuring a pink triangle floating against a black background. This was a potent reminder , not at all an obscure one, of how homosexuals were marked by the Nazis in the camps. The global LGBT movement had long ago reclaimed the pink triangle to signify autonomy. It was the symbol used for lesbian pride marches, on the covers of homosexual publications, on T-shirts from homosexual cruises. But on the mysterious poster, the triangle had been inverted no longer pointing downward like a yield sign, it was depicted there as a pyramid, invoking cosmic power and strength.
Beneath this image was an apprehending message in blocky white letters: SILENCE =D EATH.
Three thousand of these posters ran up, from the East River to the Hudson and stretching north from the Village through Chelsea to Hells Kitchen and the Upper West Side, and as far south as SoHo not just in the lesbian ghetto but in the outposts of the arts communities where allies might find meaning in the message. For a long time, those posters, produced by an anonymous collective, were all anybody “was talkin about a”. Who was behind them? What did they mean? It was obvious that the posters were addressing those of us living inside the beset. Component of the message was easily discerned: on the current course, we were surely doomed. Less clear was what these posters were asking us to do. The slogan suggested a corollary. We knew what the opposite of death was. But what kind of non-silence was being called for?
The fuse was illuminated, and in early 1987 Act Up was formed following a fiery township session at Bailey House, a residency at the far end of the West Village where Christopher Street gratified the Hudson River. Conceived as a place for homeless people with Aids to live out their last days, “its become” the citys LGBT community centre.
Calling itself a diverse group of individuals united in indignation and committed to direct action to end the Aids crisis, Act Up adopted a deceptively simple demand: narcotics into bodies. The New York group grew to several hundred members, described by word of mouth, and chapters quickly proliferated, including in London. Though most were people who were new to political action, the leaders of Act Up were shrewd and relentless, attacking the government and the pharmaceutical industry in mass demonstrations. It took them little time to realise the scientific problem would require leadership: which narcotics into bodies? Even six years into the beset , nobody had a hypothesi for beating Aids.