Today is not just World AIDS Day, but it also so happens that it’s one day after the passing of former President George H.W. Bush. In the wake of Bush’s passing, many media outlets — queer and mainstream — have acknowledged his legacy, and have penned tributes memorializing the man. Here, our editor-in-chief chats with Eric Sawyer, one of the activists of ACT UP since the mid-1980s, about how he feels the President should really be remembered among LGBTQ+ people.
Phillip Picardi: First of all, I’m wondering what you’re doing today to honor World AIDS Day.
Eric Sawyer: It’s always an emotional day, having buried a couple of lovers, countless friends, and dedicating my life to HIV/AIDS. I’m on the board and one of the creators of the NYC AIDS Memorial, and we have a big event later today called “Light the Night,” where we’ve curated a number of speeches from the HIV/AIDS Epidemic with Jenny Holzer, who’s a famous artist that works in spoken and written words. We also have five advertising trucks, covered in LED lights that are going to kick off our event at the Memorial, and then circle the city with messaging from the speeches about the AIDS Epidemic.
PP: Would you be able to tell me how you initially got involved with ACT UP?
ES: I have been friends with Larry Kramer since 1980, he’s one of the first people I met when I moved to New York. At the time, I was living in Boulder, Colorado where I went to graduate school. I moved here primarily because I came out in Colorado and realized that Colorado in 1980 was not somewhere that was particularly conducive for a gay lifestyle.
It was a serendipitous encounter — I was reading the book Faggots, and was at the West Side Y in the locker room changing after working out, and my gym bag fell off the bench and the book fell on the floor! The guy in the locker next to me said, “Oh, you’re reading Faggots! What do you think?” And I said, “I thought it was incredible.” And he said, “Oh so you ‘re not one of the people who hates Larry for his stance on promiscuous sex?” And I said, “No, I think the book’s amazing.” He said, “Would you like to meet Larry?” And he pointed across the room to someone else changing...and it was Larry Kramer! He then invited me to dinner with them.
PP: So, what turned this encounter into activism?
ES: I had a boyfriend who came down with AIDS in early 1984, and died in 1986. I stayed in touch with Larry through that whole time, since 1980 when we’d become close friends. Larry was publishing all kinds of articles in The New York Native and other outlets about the HIV epidemic, and I was in regular contact with him — both about my own boyfriend’s illness and trying to get him into trials at the National Institute of Health, but also my own issues, because I became symptomatic in ‘81.
After my boyfriend died, Larry was getting ready to give a speech at the LGBT Center where he was going to call for a civil disobedience action. He called me and let me know about the speech and said, “I know you’re really angry that nothing could be done to save your boyfriend. Why not come here and turn that anger into action and help us plan the first demonstrations to try and force the government and drug companies to find a cure?”
So I agreed to come and be a plant during his speech and stand up and encourage other people to join the efforts to organize the first action. At the time, more than $100 million had finally been allocated by President Ronald Reagan for research to try and find a cure for AIDS — but of course, there was then a hiring freeze at the National Institute of Health! This prevented researchers from being hired to oversee any research using that money, so the research was effectively stalled. Larry wanted to let the world know that the whole idea of the allocation was just a ruse, or a photo-op, and something needed to be done to lift the freeze and get the money into clinical trials, or thousands more people would continue to die. He suggested the New York Stock Exchange as a site for that first demonstration, because the drug companies weren’t investing any of their own money to try and find a treatment. We targeted the Stock Exchange as a “No More Business As Usual” demonstration against the government and the drug companies. And the rest was history.
The rest was history.
PP: Many of us were upset when the media began to spread its revisionist history, sort of blindly offering condolences and memorializing after the recent passing of George H.W. Bush. I wonder what you thought about that?
ES: By the end of Bush’s presidency, there was only $135 million being spent for HIV efforts globally by US AID. Nobody was getting treatment for opportunistic infections — it was primarily being used for condom distribution. Not only did Bush allow the epidemic to rage to over 110,000 people here in the United States on his watch, but globally, there were over 1.5 million cases. There were also around a half a million cases being diagnosed every year, in an environment where the majority of AIDS cases were going undiagnosed, because there was no testing or collective reporting of AIDS deaths. The real number is thought to have probably been 10 times what was reported, since there was so little funding and research to adequately report what was going on.
PP: What did ACT UP do to protest the Bush administration?
ES: I had a friend named Larry Kert, who was a performer, and I’m still close with a man named Ron Pullen, who was his lover for 13 or 15 years. Larry sang at the White House during all the State Dinners going all the way back to President Eisenhower, and he considered it a great honor to do so — even when he got invited to perform for George H.W. Bush. As was often the case for these ceremonies, Larry was scheduled to sing with a woman named Carol Lawrence. The two had prepared to sing a couple pieces from West Side Story.
At that point, unfortunately, Larry was very ill. I remember he literally had to go get a new tuxedo in order to perform, because he had Wasting Syndrome and Kaposi Sarcoma, and all kinds of other stuff. So for the performance, he had planned to make a statement about how he himself was dying of AIDS, and he was going to say, “Mr. President, we really need you to invest more money and expedite research, or thousands more people like me will die.”
Somehow, the administration got wind of this and, of course, between the rehearsals that morning and the performance that evening, the music for Larry’s duet and song was conveniently “lost.” Literally, during the run of show, they said, “Larry, you can’t go on. We lost your music — but we do have the music for Carol’s solos, so she’ll go on.” He was so devastated by the circumstances that he came back to New York, and died within weeks.
— Josh Hollands (@joshhollands) December 1, 2018
Around that same time, ACT UP was planning an “Ashes Action,” where we were going to dump the ashes of people who had died of AIDS as a protest. I got a call from Ron, his widower, who said, “I heard about the Action, and I still have some of Larry’s ashes that I was saving for the beach in Maui. I think he’d much rather have me give them to you, so you can provide him the opportunity to have his final performance at the White House.”
So, that’s what we did.
It was a three-day weekend, I believe of Veteran’s Day, and there was a full display of the AIDS Memorial Quilt on the Mall between the Washington Monument and past all the museums there. Thousands and thousands of LGBTQ+ people traveled to DC to see the Quilt, so we decided it was the right moment for the Ashes Action. We marched the whole length of the quilt, right along its edge, with snare drums beating at a funeral cadence. Then, we began chanting things like, “Bringing the dead to your door/We won’t take it anymore!” Or, “Out of the quilt and into the streets/Join us, join us!” As we proceeded along the edge of the quilt, people started pouring out from its middle to join the processional. We started with just a few thousand — most of whom traveled by bus — but by the time we finally reached the White House, the were probably at least 10,000 in our contingent. I was carrying Larry’s ashes, along with a poster that had a blow-up of his Playbill picture from West Side Story.
We had to be very strategic. So we had a phalanx of “wedge people” to guard and block those who were carrying ashes. We also had spotters and scouts who preceded the march — they would communicate with us via Walkie Talkie to tell us which routes were blocked by the police, and identify the best route to the White House fence. I remember there was media stationed on Pennsylvania Avenue, so we wanted to go in front of them, but there were so many policemen mounted on horses with big shields, so we changed routes to the back of the White House fence.
When we got closer, the police were scurrying around the White House grounds to try and block us. The “wedge people” guarded us and helped us climb the base of the fence, and then we started to dump the ashes right over the gate.
The lawn was — actually, it looked almost like a light snow had fallen. We were so condensed in terms of the number of us who were dumping the ashes, but ashes are quite fine, with small bone fragments in the remains. So the lawn was littered with this light dusting of ashes and bone — sort of like an early snow — from the urns, bags, and boxes we’d been carrying our lovers in. I’ll never forget the look of it.
All the while, the police got their horses around and were trying to trample us. But, from organizing before, we knew that if you crouched down on the ground, horses wouldn’t run you over — they’re actually protective of their own legs and don’t want to fall over. Instead, we stood on the granite edge along the bottom of the White House Fence, got out our bullhorns, and started talking about why we were there. I remember I gave a speech, along with Alexis Danzig, and a few others.
We didn’t get arrested that day. I think what was more important to the police was that they block the press from publicizing the Action, so they got the word out to the mainstream media to not cover it, or they’d be banned from the White House. We got very little mainstream media attention. Luckily, there’s a video that captures some of these moments.
ES: I also think of the political funeral for Mark Lowe Fisher, which occurred on the eve of the election between Bush and Clinton. I was a part of the “Political Funeral Movement.” Basically, Mark wrote a short statement called, “Bury Me Furiously,” where he took some of the words of the artist and activist David Wojnarowicz. David talked about how, when he died, he wanted his body thrown into the back of a station wagon and driven to Washington, then crashed through the White House gates and dumped on their steps. Mark built on that, and said he wanted his funeral to be “political and furious,” and he also said he wanted his body used in such a protest. So I spoke at his funeral, alongside Bob Rasky and Michael Cunningham, the writer of The Hours. We literally carried his coffin from the Jackson Memorial Church right to the street in front of the Bush Campaign Headquarters in New York City. We held a funeral not only for Mark Lowe Fisher, but for the death of the Bush presidency. We knew his evil neglect of people with AIDS, and his hatred of LGBTQ+ people would bring about the death of his term.
PP: There’s also been a lot of talk about the ban on HIV+ immigrants entering the country.
ES: The immigration ban on HIV+ people wasn’t lifted until President Obama. There was supposed to be an international AIDS conference at Harvard in ‘91, but it was literally moved out of the United States and to Amsterdam because of the Immigration Ban — a law sponsored by Jesse Helms, who was an evil homophobe and enemy of people with AIDS, and supported by President George H.W. Bush. A lot of people don’t know that, because HIV was a huge issue in Haiti, there was literally an HIV detention camp at Guantanamo Bay where many Haitian refugees were held. Guantanamo Bay is, of course, a detention center for suspected terrorists today. I was involved in lots of activism to get that camp closed and to resettle the HIV+ people who were eventually let into the US under President Clinton. That camp still continued to operate under Clinton for the first year-and-a-half of his presidency.
In fact, there was a Spanish-born AIDS activist named Tomàs Fabregas who, with Elizabeth Taylor (she had a British passport) staged a demonstration where they challenged George H.W. Bush to try and block their entry into the States. Elizabeth basically declared herself a person with AIDS and, along with Tomàs, challenged the President to block their re-entry into the United States after they left the International AIDS Conference. Of course, President Bush didn’t want the negative press associated with Liz Taylor being arrested, so they were both allowed entry.
PP: What else do we need to know about the AIDS legacy of President George H.W. Bush?
ES: I remember this one debate between George H.W. Bush and Bill Clinton. He was asked about the HIV/AIDS protesters, and he insisted that his administration was doing everything they could. This was a lie: His administration actually ended up reducing the research budget. He also said, “AIDS...is one of the few diseases where behavior matters. And I once called on somebody, ‘Well, change your behavior; if the behavior you’re using is prone to cause AIDS, change the behavior.’” He also mentioned how we staged a protest that disrupted a church service in St. Patrick’s Cathedral, making so-called outrageous demands. But he said we were going to “the extreme.” And, finally, he said he couldn’t accept as a “normal lifestyle” the thought of same-sex couples being parents.
When they kicked off his campaign, we held a demonstration at his headquarters with signs that said, “80,000 Dead From AIDS. Where Was George?” That was also one of our chants at the time. By re-election, I think the number had gone up to 118,000 dead from AIDS. There was “Bush Is a Serial Killer,” “H.W. Bush: Guilty of Genocide,” “Blood Is On Your Hands,” and “George Bush, Serial Killer.” I also created the Housing Committee of ACT UP, which would later become Housing Works, and we had signs specifically about homelessness and AIDS, specifically about him condemning people with AIDS to die on the streets.
PP: I know this is a different topic, but we don’t hear enough about the women who were so instrumental in the AIDS Movement, especially as activists and caretakers.
ES: Women were front-and-center in the HIV response. I think that the HIV movement is really one of the first times when the Lesbian and Gay Movements were truly intertwined, and where we came together as one. There had, previously, been a stronger alliance between the Lesbian and Women’s Rights Movements, specifically focusing on things like women’s health, reproductive justice, equal pay, and other things. Gay men, at the time, seemed to just be doing our own thing. But so many of the gay men who were friends with lesbians ended up getting sick or dying of AIDS, so when ACT Up took off, women were an original part of the 20 or so people who planned the first Wall Street Action in Larry Kramer’s living room.
Women also led the fight to get the definition of AIDS changed, so it included that women also got AIDS. Initially, to get an HIV/AIDS diagnosis, you had to have Kaposi Sarcoma (called, at the time, “Gay Cancer”), or AIDS-related pneumonia. But women with AIDS were dying without a diagnosis, because they had different symptoms, like vaginal thrush or yeast infections or cervical cancer. This also meant that many women weren’t able to qualify for health care, food stamps, or housing placements.
Women were also at the forefront of the fight for pediatric AIDS care, since there were no drugs available that were specifically made for babies with HIV, or programs available to help children orphaned by parents who died of AIDS. There were many women leading these fights, like Maxine Wolfe, Terry McGovern, and Maria Maggenti.
PP: And what about the trans community specifically?
ES: Most of my comments so far have been LGBTQ-inclusive, so I didn’t go into a lot specifically about the trans community, but of course transgender people were always a part of my activism and my thinking. I spent a lot of time talking with Marsha P Johnson, because she would come to ACT UP on a regular basis and attend a lot of our demonstrations. Trans women were literally part of the people who threw the first bottles, or took their heels off and started clubbing police during the Stonewall Riots. We owe so much to their bravery and to their attitude of, “Fuck you, we’re not going to take this anymore. You come for me, I’m coming for you.” I was outraged when, even in our own state, we chose to cut a deal with the New York State Legislature to leave trans people out of our anti-discrimination laws, while GENDA still has not received a floor vote by the Senate. We owe so much to trans people for our rights, privileges, and benefits. We need to spend a lot of time, urgently, trying to ensure trans people have equal rights and equal justice. No LGBT person is free until all LGBT people are free.
PP: What do you want this next generation of LGBTQ+ people to know about World AIDS Day?
ES: There are so many things that we still need to fight for. We’ve come so far, but there’s so much farther to go to be able to end the AIDS Crisis. One of the big issues is HIV stigma — it’s still a horribly stigmatized disease and there’s still an inordinate amount of fear and hysteria around HIV that prevents people from testing, coming out about their status, and that triggers all kinds of negative, hateful language directed at positive people. All of the “I’m clean, UB2” or “disease free” language on dating sites is a classic case-in-point.
HIV itself is still criminalized, and a lot of people don’t know but many states have laws that hold jail time or other penalties for having sexual relations without disclosing one’s HIV status. This is no longer medically rationalized. U=U, or Undetectable = Untransmittable, literally makes HIV status irrelevant in terms of protecting someone from getting infected if the positive person has an undetectable viral load. The fact that there are still people being put away for 10 or even 25 years because they’re engaging in sex without disclosing their status, or being wrongfully accused of doing so, is absurd.
Then, of course, drug pricing is a huge, huge problem — both for people who are positive and for those who need access to drugs, but don’t have access to healthcare or have too-high copays, or who don’t have access to free-copay cards from drug companies. People are still dying of AIDS because they can’t get access to HIV medication in the US. Nobody needs to even come down with HIV because there’s PEP and PrEP — and again, it’s the marginalized communities, including drug users, the displaced, and people without health care, that can’t get access to free PEP or PrEP, or access to these drugs at affordable rates. It’s price gouging by pharmaceutical companies that creates this problem. A majority of the patents for the compounds that go into PrEP are held by the NIH, and they turned those patents over to Gilead royalty-free, so that Gilead could add the last phase of clinical trials to bring those drugs to market. This basically means the US taxpayer paid for the majority of the research to develop Truvada, and yet we are being charged up to $18,000 per patient per year for one pill per day — all for a drug whose research was funded in part by taxpayers.
PP: Who are you thinking of today?
ES: There are so many people who I’ve lost to AIDS over the years, including my soulmate, Scott Bernard, who died in 1986. He’s always in my heart and my thoughts. On days like World AIDS Day, this pain is even more front and center. Part of the problem with losing so many people to AIDS is that the reservoir of grief is so deep and so many people were dying so quickly, one after another, that we were never able to grieve enough. That’s a part of why these Actions were so hard to do, and why they were so emotional. When you’re carrying the ashes of your best friend or lover, and dumping him all over the White House lawn? You never quite get over that.
PP: Thank you so much for all of the work you did. We are deeply indebted to you.
ES: We really had no choice. We were fighting for our lives and for those we loved.