What I’ve Learned from 30 Years of AIDS Activism



While the AIDS crisis wreaked havoc on the lives of gay men throughout the 1980s and 90s, Staley was on the front lines of the battle for political recognition and resources as an early member of the AIDS Coalition to Unleash Power (ACT UP) and founder of the Treatment Action Group (TAG), two of the most influential activist groups in the history of queer politics.

Staley joined ACT UP in the weeks after it formed in 1987. The organization would soon come to be as renowned for its theatrical protests as for its strategic lobbying of politicians and executives. From the White House to the FDA to the New York Stock Exchange , where Staley once worked as a bond trader, not only were ACT UP’s actions hugely influential in reversing public stigma and government inaction towards AIDS, but they also produced seismic shifts in how the country perceived the “modern homosexual.”

In light of today’s thirtieth anniversary of ACT UP’s birth, we spoke with Staley about how AIDS activism has changed today, what the resistance against Trump can draw from his experiences, and what’s left to be done to eradicate HIV and AIDS from the planet. Interview as told to Khalid el Khatib.

I was diagnosed with AIDS-related complex in late 1985. That was before ACT UP and before there were any treatments. It was shortly after the death of Rock Hudson, and the country was in a full on AIDS panic.

Six years into the crisis, queer Americans were mostly closeted and rarely engaged in national demonstrations. But our president hadn’t even said the word AIDS, there was little going on in the way of research, and we were being left to die. The death toll hit such a massive point that the anger boiled over.

Larry Kramer, who went on to found ACT UP, popped the balloon with a speech at the Gay and Lesbian Community Center in March of 1987. I stumbled upon the first ACT UP demonstration a few weeks later on my way to work on Wall Street. I got handed a flyer, saw them on the news that night, and realized that I had to be a part of it. I got myself to the very next meeting and never looked back.

I did a crazy year of being a closeted bond trader by day and AIDS activist by night. But then my CD4 count got to such a dangerously low level that I went on disability and became a full-time AIDS activist.

It was beautiful and exciting from day one. The first ACT UP meeting, which I wasn’t at, had over 300 people.

Unlike prior gay rights efforts, this was the first time there was a bringing together of gay men and lesbians. The lesbians had gay male friends they were losing, but also had a greater wealth of experience in other movements—women’s rights, antiwar, pro-choice—than many younger gay men like myself.

The community was desperate, and in a room together for the first time since Stonewall. There was a sense from the get-go that we were making history

Some of the more common narratives around ACT UP’s success—including in How to Survive a Plague—focus on how we became very wonkish, and our own experts in AIDS research to adeptly push players like the US government and pharmaceutical companies towards finding treatments.

But the less-discussed story is from those early years, and I think it’s a more important one, is that initially, we took to the streets.

We started doing national actions in 1988. The first was at the FDA; we shut it down for an entire day with over 1,000 protestors. It led national newscasts and, in my mind, was one of the first times America saw large numbers of homosexuals protesting.

People forget that Stonewall wasn’t televised. It was barely covered in the New York Times. Most people didn’t hear of it until decades later.

We put our bodies on the line at the FDA, and in so doing, we came out of the closet and shattered the myth of the homosexual of being weak, timid, afraid—unwilling to fight back. Instead, the public saw organized anger and determination, and it was reported by the press in very sympathetic stories about how we were left to die by an indifferent government that was given a pass to do that by an indifferent country.

Gallup has polled the country on homosexuality every year since 1977, including an arcane question asking if gay sex should be illegal. “Yes” responses rose during the AIDS epidemic; it got worse and worse. The backlash against us allowed Reagan to ignore the crisis.

Once we came out into the streets, we didn’t convince Americans to love us, but they didn’t like to be confronted with the fact they were letting thousands of fellow Americans suffer and die.

Faced with that reality, the Gallup poll had the largest shift [in our favor] in its entire history. Instantaneously, polls that asked Americans “should the government be doing more about AIDS?” soared in response. We successfully guilt tripped the country with this media story.

The NIH AIDS research budget started to soar, too. Within three years of ACT UP’s launch, its research budget tripled to over $1 billion a year. Those tax dollars are what saved my life.

By year five, we were having a hard time getting the press to show up—facing diminishing returns with street activism. We had to do things that were much more creative, like putting a condom on Jesse Helms’ house. Those actions were hard to pull off and expensive.

We started looking for other tactics. That’s when we shifted to an inside game. Through our demonstrations, we gained access to every office of power that we wanted a voice in. We started to leverage that access.

It speaks to the problems facing the resistance against Trump today. I’m the last person to say today’s activists need to mimic ACT UP’s playbook.

Every movement needs to write its own playbook based on the times, tools at hand, targets, and what needs to be achieved. Demonstrations in blue cities, unless they’re well organized and huge, will be ignored. The press is used to anti-Trump demonstrations at this point.

Strategies that are working involve adopting Tea Party tactics, like showing up to town hall meetings and bombarding senators and representatives with phone calls and letters. ACT UP never did any of that.

We’re seeing an amazing example of how every movement has to be nimble, and how it’s the younger members of a movement that have creativity and aren’t slowed by historical reverence.

Today’s AIDS activism is evolving, too. It’s very diverse. It’s different than in the plague years. Back then we were desperate, and our activism was filled with pessimism. We were fighting like hell while our friends died around us.

Unlike the early years, we’re working from a base of optimism today. We have the tools to write the last chapter of this epidemic, rather than trying to find the tools to write the first. But it’s a frustrating type of activism, given we have the tools to end the epidemic but it churns on nonetheless. It’s because of public indifference, politics, and money.

We’re now in a ground war against politicians and an indifferent public and press to end AIDS. But when we go to battle—and we know how to do it—we’ve seen extraordinary success.

An ACT UP 30th Anniversary March and Rally will be held in New York City on Thursday, March 30th, 4 PM-7 PM starting at the AIDS Memorial.

Follow Khalid el Khatib on Twitter. Follow Peter Staley on Twitter.

Peter Staley



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