ACT UP members protest George Bush’s response to AIDS.
“Anyone who thinks the Black Lives Matter movement is not doing a very good job should pay attention to the astonishing movement in public opinion. Sometimes you have to scream real loud or use a bad word.”
Protests in the streets. A virus that disproportionately impacts underprivileged communities. An indifferent and inept response from the federal government.
That’s 2020, but it could also describe the late ’80s and early ’90s, when HIV/AIDS activists took direct action to pressure the government, medical community, and pharmaceutical industry for faster and more effective treatment options.
The most visible HIV/AIDS protests were organized by ACT UP (AIDS Coalition to Unleash Power), which became famous for its “die-ins,” condom distributions, and other theatrical protests, as well as its slogan: “Silence = Death.” The group also used tactics like vigils and traffic stoppages, which have echoed in protests associated with Black Lives Matter and other contemporary social justice movements.
This Pride Month, DigBoston checked in with Raymond Schmidt and Stephen Skuce, who were two of the founders of the ACT UP Boston chapter, along with Donald Smith and Paul Wychules. ACT UP/Boston’s heyday spanned from 1988 to 1996. Its protests targeted everyone from Michael Dukakis, to Cardinal Bernard Law, to the John Hancock Insurance Company.
We asked how these pioneers of LGBTQ rights and public health activism view the current climate.
In what ways are the responses to COVID-19 similar to the early responses to HIV/AIDS, and in what ways are they different?
Stephen Skuce: It’s interesting in that on the one hand there has been a vastly larger response—certainly it doesn’t begin to echo anything that happened in the AIDS crisis, especially in the first four years. But this specific administration, well, if it could drag its feet even more than it already has, it would, and that does echo what I experienced when Reagan and [George H.W.] Bush were in the White House. There was serious opposition to doing anything, and in that instance it was because [of] who was affected. They didn’t care, or another way to say it is that they welcomed it—it was happening to people they despised.
Now this crisis is different: at least early on there was the perception that everyone was vulnerable. Indeed, in the Boston area, the Biogen meeting was a major spreading event, where there was a bunch of seriously well-to-do, influential, overwhelmingly white, and I assume largely male population that was infected. But now what we’ve been seeing is that members of communities of color are much more likely to be exposed to COVID, and if they become ill they’re much more likely to succumb to this illness. Given how awful things are at the top in this country, finding out that Black people would die first did not speed anything along with the response.
“Who is getting sick?” will always be an important question when you have an epidemic or pandemic. Not too long before the AIDS crisis there was Legionaire’s Disease, which impacted a very small handful of very elderly, mostly white men, and the government mobilized to an astonishing degree and on a per capita basis much more potently than they did with HIV.
One major problem is that different segments of the population seem to be operating under very different assumptions about how this virus spreads. Was public information a challenge in combating HIV/AIDS?
Skuce: The surgeon general under Reagan was C. Edward Koop, who was not perceived as a friend by those who were impacted by HIV. But he did find himself changing his position and [in 1988] he sent out to every household a mailing about the crisis. It was edited by political players, and it was watered down, but every household got the same bit of information about what was known and ways to avoid contracting HIV.
Now, in the current environment, at the highest levels of government you have a hands-off approach, where the federal government is taking no responsibility. The idea that you don’t centralize an approach to a pandemic is completely obscene and insane. The federal government during the AIDS crisis was overwhelmingly absent, and at the same time the government was actively hateful: They would not let people share information about safer sex and needle exchange. It was against the law in several states and banned [if federal funds were used]. The federal government was not allowed to distribute life saving information to gay men, but again, everyone could see what was going on: a disease that most impacted despised minority groups: people of color, gay people, and IV drug users [who] were seen as expendable.
Some think Boston is this bastion of liberalism, not to mention the center of all these universities and hospitals on the cutting edge of medical research. So why did it even need an ACT UP chapter?
Massachusetts was very, very different in the mid-’80s. There was no gay rights law, it was beaten back year after year. And you don’t have time to hear me talk about how [unhelpful] all the prestigious medical research institutions were here. One of the major stumbling blocks to saving the lives of those with HIV was the teaching and research institutions across the country. They moved at a glacial pace and felt models for testing new therapies should not be any different than if testing a cure for the common cold. That was one of the main things we sought to change. Of course some of the FDA regulations are there for a reason, but around Massachusetts we had a lot of demonstrations at Mass General, Mass Deaconess, Harvard Medical School—they were all either dragging their feet or actively opposing progress.
Before any drug is distributed widely it should certainly be proven to be safe, and ideally, have some level of real effectiveness. Before you give a healthy population something you want to make sure it won’t kill them. But this was a case where people who were already dying were being denied experimental medications, instead of being allowed “compassionate use” exceptions … you can’t tell if something works until you expose and give people the shot. If someone is about to expire on a ventilator you might want to try it. That’s data too.
Let’s turn to the recent demonstrations. You hear some people say they’re against racism but they don’t understand why the Black Lives Matter protesters have to engage in civil disobedience instead of just having peaceful, completely lawful protests. Or that they want too much change too soon. Does that sound familiar?
Skuce: We got the same exact thing. “Why do you have to be so aggressive?” In the 1980s there was already the AIDS Action Committee and they were doing really important work: bringing meals to people, caring for the dying. But you also need shock troops, too. It’s a somewhat similar analogy [with racial justice]. We have plenty of wonderful mainline organizations like the NAACP that must work in particular ways, they must guard their access to the back rooms, to the senators’ offices, and that accomplishes a great deal. You will never find me bad mouthing or criticizing organizations that do the hard work of creating incremental or more than incremental progress.
But breathing while Black should not be a death sentence. You hear “they’re not polite, they’re making too many demands.” No, they’re not. And yes, there was some opportunistic looting or violence. That’s called criminal activity, and what else is new? If there’s a blackout you might have more break ins because there’s a criminal element in society. But that shouldn’t be confused with the protests going on. What is thrilling to me is that with Black Lives Matter it’s such a multicultural mix of people in the streets right now.
Raymond Schmidt: When it comes to being polite, Larry Kramer [the famed ACT UP New York activist who passed away last month] kept asking people why they weren’t screaming in the streets. “I can’t believe you want to die,” he’d say. Once you accepted the reality that you had a population that was dying at a rapid rate, you had to react and respond.
There have been quite a few documented cases where groups unassociated with Black Lives Matter, including some right-wing hate groups, were the ones responsible for the violent episodes.
Skuce: At our demonstrations people would show up from various other organizations. I can’t remember them, but these were very fringe political movements. They would show up and I thought it was odd they were handing out their literature, and as time went on and I found myself getting sick of them I’d say, “You weren’t at any of the last 35 meetings, what the fuck are you here for? Why are you muddying the waters when we’re demonstrating for a life-saving drug?”
Many people are unaware that Black Lives Matter activists have done an incredible amount of low-profile, community-based work. And likewise, before I researched this article, all I knew about ACT UP were the theatrical protests that made the headlines, but I discovered that there was a lot more work being done behind the scenes as well.
Schmidt: We spent 1,000% more time literally learning science and meeting with governments and pharmaceutical companies and researchers than we did protesting. Demonstrations were a couple of hours, every few weeks or months. We spent countless hours educating ourselves and many many hours meeting with the Department of Public Health, the governor’s office, statisticians, clinical trial researchers … We had conferences, teach-ins, seminars. Protests were the last resort.
Skuce: It isn’t as though really good, smart people haven’t been meeting with police departments, and their state and local and national representatives, trying to get action on this issue. Of course they have. As a last resort you find yourself lying on the pavement, screaming for change, and getting arrested for it. It’s a shitty thing to have to go through—and bear in mind that when we were arrested, we were white men. It was no fun. But people of color are putting their lives at risk, going to BLM demonstrations to face off with the police. It’s not something they want to do, and it was the same with ACT UP. We worked very hard to avoid demonstrations. It was a threat, sometimes thinly veiled: “We may have to hash this out another way, if our concerns are not addressed.”
I do think the language is important, and usually some finessing on that does not hurt. In our day we got a lot of attitude. We were desperate to get the attention of anyone and everyone. Even in the pre-internet days there was a lot of noise around, so our graphics and phraseology were meant to provoke. You’re not going to make any progress if you don’t get any attention. There were already the nice guys doing the nice things, and getting state funding for various services, and Massachusetts, as states go, was a fairly generous state when it came to taking care of the medical and social needs of people with AIDS, and we didn’t want that to stop, but we didn’t feel that we could measure our language. We had to shock people into understanding the actual gravity of the crisis, and giving a hot meal to someone with AIDS wasn’t keeping them alive. We were unapologetically aggressive, but it was strategic.
I can’t believe the poll numbers that have come out since these protests started. Anyone who thinks the Black Lives Matter movement is not doing a very good job should pay attention to the astonishing movement in public opinion. Sometimes you have to scream real loud or use a bad word.
Earlier you mentioned how many allies are appearing at Black Lives Matter protests. Who was at the ACT UP protests?
Skuce: There was a small number of allies. The ACT UP Boston contingent was not as racially diverse as we really wished it could be. We moved the meetings to Roxbury Community College specifically to get out of the white enclave. But bear in mind that in 1989, a Black family contending with AIDS was contending with a whole lot of stuff and it demanded a lot. Some African-Americans in our membership would point out that we walked into those things with a very different mindset. It was all well and good for Raymond and me and other white folks to risk arrest, but it was a very different thing for the people of color in our organization to take that risk—they sometimes did, but it was very risky, and things were even worse then. There were no cell phones, no cameras, all the awful things that happened [with the police] happened off-stage, so what we were all doing was risky. It was very dangerous. But though we worked closely with the Multicultural AIDS Coalition and other groups, we never fully reflected the diversity of the communities impacted by the disease.
Schmidt: Later on we moved the meetings to the Boston Living Center and then our membership did become more reflective of the people directly affected by HIV/AIDS, and a range of ages and people of different economic status. It was not just white men—it was economically very diverse in the last several years. And there were lesbians and straight women involved, men and women of color … by no means was it just a bunch of people with AIDS and gay white men. We had some pretty wonderful straight members, it is quite moving to talk about our memories of them.We weren’t a big group. At our biggest meetings there were 100, maybe 150 people. Within the gay community we were not very well understood.
Skuce: Boston was a pretty conservative place. This is not New York City, and an awful lot of gay men really didn’t like ACT UP—people who go along to get along didn’t like us. Some are grateful for crumbs. If you lost your job due to being gay there was no law to protect you during the entire time of ACT UP. Raymond and myself worked at universities, so we felt very safe, but a lot of people could have lost their jobs.
Although there is still (contrary to recent remarks by the president) no vaccine for HIV, today the virus is extremely manageable for those with access to treatments, and the combination of education and medication like PrEP has also reduced the transmission rates significantly. If someone had told you in 1990 about the status of HIV/AIDS in 2020 would it have been welcome news?
Skuce: I would have died of joy. We were so desperate. It is impossible to communicate how dire the situation was. Not only were 28 year olds dying, but they were being laughed at and sneered at as it happened. It was a horrific time. So if you had told me that thirty years later there would be this array of therapies and prophylaxes, I would have jumped out of my skin with joy.
It isn’t over yet—after all, there are still people in poorer places who can’t even get a clean glass of water to take a pill, assuming they can get the pill in the first place. But while there are still vast oceans of work to be done, it’s not impossible anymore, and that’s amazing.
