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Stephen Barker
Jay FunkPhotography Stephen Barker

The 80s activist group who fearlessly battled Aids

While the government turned its back ACT UP raged until their voices finally broke through

Halston. Robert Mapplethorpe. Keith Haring. Freddie Mercury. Eazy E. Antonio Lopez. Martin Wong. David Wojnarowicz. Herb Ritts. The list goes on – and on. More than 675,000 people have died of Aids-related illnesses since the epidemic first hit in 1981, devastating a generation coming-of-age in the wake of the gay, civil rights, and women’s liberation movements of the 1960s and 70s.

Where it was once an all-consuming force decimating lives, survivors of the terror and trauma rarely revisit those horrific times. It is difficult to express the scale and scope of the agony of illness and the pain of death that happened day after day, year after year, for decades. Imagine a funeral for friends and family every week. Envision the fear spread by misinformation and ignorance, in the wake of a government that turned its back on the victims of the virus.

During the first four years of the crisis, President Ronald Reagan never said a word about the disease, which had infected nearly 60,000 people – 28,000 of whom had died. In 1987, Senator Jesse Helms amended a federal bill to prohibit Aids education, saying such efforts “encourage or promote homosexual activity.”

The battle lines were drawn: it was the people vs. the government.

In 1987, ACT UP (Aids Coalition to Unleash Power) was formed in response. Organised as a leaderless network of committees working with affinity groups, members of ACT UP took it upon themselves to battle the disease and the government firsthand. Their slogan, “Silence = Death,” became the rallying cry for activists, who, to paraphrase poet Dylan Thomas, refused to go gently into the night. They raged until their actions turned the tide.

ACT UP took on every aspect of the crisis, coming up with grassroots solutions to clearly defined problems. Photographer Stephen Barker worked as part of ACT UP’s Needle Exchange Program on New York’s Lower East Side. He also participated in the first “Funeral March,” one of the most powerful public protests against the regime, wherein Mark Fisher’s body was carried in an open coffin from Judson Memorial Church to the steps of the Republican National Committee on the eve of the 1992 presidential election.

Barker's photographs made during these actions, along with a selection from the “Nightswimming” series made in places where men regularly went for trysts, will be on view in the exhibition Stephen Barker: The ACT UP Portraits – Activists & Avatars, 1991–1994, at Daniel Cooney Fine Art, New York (September 14 – October 28, 2017). Below, he speaks with us about the lessons he learned in the fight for life and the war against death.

I still get chills thinking about what it was like coming-of-age in a city where the Aids virus was spreading so rapidly and destroying a generation, while the government ignored what was going on. What lead you to join ACT UP in 1989?

Stephen Barker: Fear, anger, and several friends. I couldn't just sit around despairing, with a solitary sense of helplessness. To find a big roomful of people who were not only distressed but also making plans to target that distress, with the strength of “We” – that was a first, crucial step.

I’ve always been inspired by ACT UP and the way they put the power in the hands of the people. What was ACT UP like as an organisation?

Stephen Barker: Energising, inspiring, fractious, frustrating, galvanising, and ultimately life-saving. It was a place for sharing information and civil disobedience training. It was a multi-headed thing that had its own life.

“The floor” was where you could come up with an idea and then open it up: "Let's see what the floor thinks." There was a tremendous amount of support, whether feedback or congratulations or folks waiting at the station for others to be released from jail. It could feel like love – and a place for endlessly arguing strategy.

 ”We would gather in Rod Sorge’s apartment on the Lower East Side to prepare bags of bleach kits, condoms, and referral lists to distribute when we went on our ‘stroll’through hard-hit neighbourhoods to exchange sterile needles for fistfuls of bloody, blunt needles” – Stephen Barker

What made you focus on helping IV drug users?

Stephen Barker: I found my angry motivation in the total neglect of the IV drug using population, entirely written off by state and local governments when established models of harm reduction were available to avoid the spread of the virus. Hypodermic syringes could only be had with a prescription, which made them hard to come by and encouraged sharing – which could often be deadly.

We would gather in Rod Sorge's apartment on the Lower East Side to prepare bags of bleach kits, condoms, and referral lists to distribute when we went on our “stroll” through hard-hit neighbourhoods to exchange sterile needles for fistfuls of bloody, blunt needles. We would yell and chant "Act up! ACT UP!!" and folks would come out of nowhere, grateful for the trade. We did this once or twice a week, hampered in scope by a lack of funds and police harassment – but it helped some and drove home a point, which was tested in court and we won.

Wow! Being on the frontline must have been so rewarding. Looking back at these portraits 25 years later, do you see things now that you didn’t see then?

Stephen Barker: I see my goal then more clearly now: I think for my subjects to take on the role of desperately confronting the status quo, they had to imagine themselves writing history. They had to sustain both that breadth of vision and see themselves as dangerous actors within it. It was that profound understanding of themselves that I wanted to help make clear. Now, the same could be said of domestic terrorists... so you must be careful. Non-violence is key.

That’s one of the things that is so profound about ACT UP’s strategy: you used the pain and rage of truth to create results. The “Funeral Marches” were an incredible action. Where did this idea germinate? What was it like to participate?

Stephen Barker: The Marys, formally The Proud Marys, was an affinity group within ACT UP comprised of ten or 11 people. They formed around an idea that artist David Wojnarowicz, who had died in July of that year (1992), wrote about: that his body be used in protest after his death – in his case his ashes thrown over the White House fence. Also, the examples of Irish and South African political funerals, all too prevalent at the time, guided The Marys’ plans.

They were an intensely moving and effective action, but so tremendously sad, carrying a comrade's body through the streets. Does photographing through your tears make the work better, more powerful? I don't know. But the action does give the deceased power and agency beyond death, a final “fuck you” in the face of oppression.

What were the most effective tools ACT UP used to create results?

Stephen Barker: First and foremost: courage. Then: pairing protest and disruptions with quiet negotiations demanding seats at the table, and educating our selves so as to hold our own once seats were yielded. For example, TAG (Treatment Action Group) members studied intensely and could argue insightfully about clinical trial design with scientists at the NIH (National Institute of Health).

Also: Surprise and creative attention-getting. One of the initial issues was the near-invisibility of Aids, at least in the mainstream. Where was the concern, the funding, the drugs, where was the urgency? Disruptions (“zaps”) and passionate, crazy creativity as well as humor (for instance, covering Senator Jesse Helms' house with a giant condom) made our demands, and Aids itself, less possible to ignore.

 It has to be acknowledged, though, that our goal, in spite of intersecting issues, was narrow, and the battle lines clearly drawn. And death was at our heels. 

That death was so present, so prevalent, and so possible is very hard to convey, especially when exposure for many came as a result of physical intimacy. The “Nightswimming” series is a phenomenal body of work. It’s so hard to imagine that these venues once flourished in New York.       

Stephen Barker: It's equally hard for me to imagine there is now no counterculture.

“Does photographing through your tears make the work better, more powerful? I don't know. But the action does give the deceased power and agency beyond death, a final ‘fuck you’ in the face of oppression” – Stephen Barker

Touché! Could you describe what the scene was like before and during the crisis? How did the energy change? 

Stephen Barker: I caught the last couple years of the freedom and experimentation of gay liberation in New York City before the initial reports of the AIDS crisis. Much of that joyous experimentation was not only sex but also shaking off the restrictions of our upbringings and re-imagining our ties to one another as a group.

It has to be acknowledged that those tribal and brotherly bonds were also slowly being eroded by drugs and mutual exploitation. But suddenly, in the early 80s, the epidemic – framed at first by fear and misinformation, and soon by sickness and inevitable death in the heart of your circle of friends – radically altered everything. Having only recently unburdened yourself of guilt and shame, you ran headlong into a wall of doubt and panic. 

You still needed to connect, though. You still yearned for that freedom so you navigated the risks or you shut down completely. In the late-night underground clubs where I photographed “Nightswimming,” more than once I recognised someone I had seen attending a funeral of a friend that same morning.

What made you decide to document it?

Stephen Barker: Anger and fascination: I was aware of the constant erasure of gay culture and gay history by the mainstream. My desire was to make the invisible visible. And that found its corollary in the attempt to record anything at all in black-painted clubs lit only by a few dim 15-watt bulbs. And it hadn't been done! It was as if I'd found an untouched archaeological site.

It certainly feels that way. Looking back at your work with ACT UP, what lessons can you share with a young generation currently facing oppressive regimes? 

Stephen Barker: They have the power of their imaginations and the examples of history. I would study the lessons and tactics of civil disobedience (although recognizing that, as Stokely Carmichael said, "In order for nonviolence to work, your opponent must have a conscience."). I would point them to the writings of Russian and American journalist and activist Masha Gessen*. Her Rule #4 is "Be Outraged!"

Every generation's situations are unique. A friend from ACT UP, Joy Episalla, was recently on a panel discussion and asked this same question: “What lessons could she share?” from a very engaged audience. She said, "Well, I don't know... but do you all know each other? You could begin there.”

*Gessen’s Rules:

1: Believe the autocrat. He means what he says. 

2: Do not be taken in by small signs of normality. 

3: Institutions will not save you.

4: Be outraged.

5: Don’t make compromises. 

6: Remember the future.

Miss Rosen on Twitter here: @Miss_Rosen