Activists recall 1990 AIDS confab
by Liz Highleyman
In June 1990, as the world's leading HIV doctors and researchers gathered in San Francisco for the sixth International AIDS Conference, the disease had killed nearly 100,000 people in the U.S., an estimated 8 million people worldwide were living with HIV, and no effective treatments were available. Thousands of AIDS activists were there too, taking part in an unprecedented week of protests.
Those events will be remembered this weekend at an ACT UP 25th reunion celebration featuring art and performances, a "living history" panel, a party, and a memorial for deceased activists.
"We demonstrated to ourselves, one another, the larger LGBT community, San Francisco, and the nation that we had large numbers of people from around the country with the will and capacity to organize and disrupt until there was a meaningful governmental response to the epidemic," said former ACT UP/SF member Eric Ciasullo. "We empowered ourselves and demonstrated that our lives mattered and that we'd fight for them."
Another participant said a focus was on quickening the pace for new treatments.
"We attacked in and many ways eliminated a large part of the stigma of AIDS. We changed the medical system forever, and we changed how drugs are researched, developed, and approved," added Tim Kingston, a journalist who covered and participated in the protests. "Without ACT UP we would have been at least 10, maybe 20, years behind where we are with treatment options."
A bit of history
ACT UP was founded in March 1987 in New York City, but activists in San Francisco were already demanding action around AIDS the previous year. By the summer of 1990 ACT UP had spawned chapters across the country that came together for large national demonstrations targeting the Food and Drug Administration, the Centers for Disease Control and Prevention, and the National Institutes of Health, as well as ensuring that people with HIV had a voice at the annual International AIDS conferences.
The week of action surrounding the 1990 conference had a different theme each day, often ending in traffic-tangling marches and street blockades. Police presence was heavy and many activists were arrested, only to be cited and released in time for the next day's action.
"We brought issues of race, immigration, poverty, and sexism into the discussion," said ACT UP/SF member Ingrid Nelson, now a nurse practitioner. "Huge numbers of queers from the community showed up and got arrested for their first time and became lifelong activists starting with that week."
A week of actions
On that Tuesday before the conference 25 years ago, ACT UP, sex worker activists, and others demonstrated outside the Immigration and Naturalization Service office in the Financial district, protesting the ban on HIV-positive people traveling to the U.S. Because of these restrictions, the sixth conference was the last to be held in the U.S. until 2012, after President Barack Obama lifted the ban.
On Wednesday, as the conference opened, an affinity group dubbed People with Immune System Disorders, or PISD, scaled the barricades surrounding Moscone Center, demanding that people living with HIV have a say in setting the research and treatment agenda.
"As a person living with AIDS, I believed the only way to get through the pandemic and ensure the survival of our people and culture was to be in ACT UP and on the front lines fighting for our access to treatment, civil rights, and dignity," said PISD member Waiyde Palmer.
On Thursday activists called attention to how the local "San Francisco Model" of community-based services and volunteer care was stretched to the limit as the number of people with AIDS grew relentlessly.
Friday's action focused on women and HIV/AIDS, including the need for more women-specific research and services. Some demanded more attention to lesbians and woman-to-woman HIV transmission (despite the lack of any evidence that this was occurring). The activists blocked downtown streets, held a sit-in, and 140 people were arrested – the largest number during the week.
Saturday featured a large coalition march during the day and a spontaneous evening street party in the Castro that would later be acknowledged as the first Pink Saturday.
"ACT UP had staged a brilliant series of forceful and creative protests throughout the week of the AIDS conference," community historian Gerard Koskovich recalled in his history of the event. "By Saturday evening, the activists were ready to celebrate – and they were in no mood to be pushed around."
On Sunday, the final day of the conference, activists stormed Moscone Center and shouted down Health and Human Services Secretary Louis Sullivan, the highest-level administration official that deigned to attend, while President George H.W. Bush himself opted for a Jesse Helms fundraiser.
"It was the first time AIDS researchers and activists were on the same page – everyone there was pissed off with a U.S. government whose response to the epidemic was to ban people with HIV from coming to the country instead of working to expedite research," Kingston recalled. "But the problem was there were no drugs in the pipeline. We had finally gotten ourselves inside their doors, but there was no main attraction."
After that protest ACT UP members and conference delegates – including some prominent researchers – joined the annual Pride parade as it proceeded down Market Street.
Other summer actions
The 1990 AIDS conference protests were not the only defining event of the summer. The first National Bisexual Conference, held the same week, drew nearly 500 participants. The San Francisco chapter of Queer Nation formed soon thereafter, building on the activist energy.
ACT UP/SF, however, split in the fall, with some members wanting to focus on HIV treatment while others favored a broader social justice agenda. The former group started ACT UP/Golden Gate (later renamed Survive AIDS), while the latter group dwindled in numbers and eventually became dominated by AIDS dissidents.
By the late 1990s, effective new drug cocktails began to restore health and allow many HIV-positive people to resume more normal lives, and the focus of AIDS activism shifted to ensuring access to the new treatments for underserved people in the U.S. and the millions living with HIV worldwide.
"We didn't have the word 'intersectionality' back then, but that's what the ACT UP/SF philosophy was all about. It wasn't enough to just demand 'drugs into bodies.' You had to ask 'whose bodies?'" said Nelson. "One of our fears was that AIDS might become a two-tiered epidemic, and that's exactly what is happening now. We have effective treatments, but we don't have equal access."
But for many of those who lived through the 1990s – both long-term HIV/AIDS survivors and their HIV-negative loved ones and supporters, the grief of those years are not forgotten.
"I was so sure at the time that transforming my grief to anger, and then using the anger to fuel my activism was a solution to the trauma of losing friend after friend," said Rebecca Hensler, who founded the secular grief support website Grief Beyond Belief after losing her infant son. "We were surrounded by a society that at best didn't care and at worst hated us and wanted us dead, so there were infinite reasons for anger. But now I think it is finally time for AIDS activists – those of us still here – to come together and talk about our loss and our sorrow."
Reunion event details
The Friday, June 19 event – "What's Your Damage?" – will be an evening of art, performance, and discussion about how queers and activists who struggled through the AIDS crisis of the 1980s and 1990s are surviving in the present day (8:30 p.m. at Magnet, 4122 18th Street).
The Saturday, June 20 living history panel will feature members of the original ACT UP/San Francisco – Ciasullo, Jorge Cortinas, Crystal Mason, Mike Shriver, and Laura Thomas – discussing what went on behind the scenes of the protests and their legacy for today (4:30 p.m., San Francisco LGBT Community Center, 1800 Market Street).
The panel will be followed by a party at Cafe Flore, a frequent hangout of ACT UP members in the late 1980s and early 1990s (8 p.m., 2298 Market Street).
On Sunday, June 21 there will be a memorial to remember ACT UP members and other activists who participated in the 1990 actions. The ceremony will take place in the Audre Lorde Room at the Women's Building, where ACT UP/SF met at the time, followed by a march to the Castro (12:30 p.m., Women's Building, 3543 18th Street).
"It was like a war, except it was invisible to the rest of society," said Nelson. "I think those of us who are still here, who are able to, feel a sense of obligation to speak up about it. We want people now to learn from what we accomplished, and also from our mistakes. And we are passionate about honoring and remembering our fallen comrades."