Waiting their turn to read names of some of those lost to AIDS, filmmaker Dante Alencastre and his co-producer, John Johnston, appreciated the somber atmosphere. A few feet away on the grass were some of the nearly 3,000 panels of the AIDS Memorial Quilt that were on display last weekend in San Francisco's Golden Gate Park.
"I've never done this before," Alencastre told the Bay Area Reporter. "I was 21 when I heard about GRID in New York City."
He was referring to gay-related immune deficiency, the name AIDS was first known by, at the height of homophobia that permeated the disease. Now 61, Alencastre and Johnston, 69, both gay men, were up from Los Angeles for a screening of their documentary, "AIDS Diva: The Legacy of Connie Norman," as part of the National Queer Arts Festival.
Alencastre said that Norman had worked at the old Trocadero Transfer in San Francisco before moving to Southern California in the late 1980s where she became a fierce member of ACT UP/LA. She described herself as a "post-operative transsexual woman who is HIV-positive." Norman died in 1996.
"It feels like for many years many just wanted to move on" from AIDS, Johnston remarked, holding the list of names they would read. "I feel like these people are gold."
The names of the famous — disco star Sylvester, actor Rick Hudson — were read along with the many more who were not — Tommy Liddell and Joseph Obiedo. Others were only identified by a first name or a nickname — Michael S., "Little" David, "Dirty David." But together these thousands of names represent part of the toll AIDS has had for more than 40 years.
The National AIDS Memorial Grove, which took over stewardship of the quilt in 2019, oversaw the June 11-12 quilt display, which was the largest ever in San Francisco and the biggest anywhere in more than a decade. It was supposed to have taken place in April 2020 to coincide with Golden Gate Park's 150th birthday but the COVID pandemic derailed those plans. Now, two years later, the event marked the 35th anniversary of when the first panels were stitched.
Kevin Herglotz, a gay man and chief operating officer for the grove, told the B.A.R. that tens of thousands of people visited the park's Robin Williams Meadow to see the quilt panels.
"Our initial estimates are between 20,000-25,000," he wrote in an email. "It was truly inspiring."
John Cunningham, CEO of the AIDS grove, almost didn't make it for the opening ceremony Saturday morning. He said that he had recently battled COVID and just started testing negative the day before.
The quilt's three co-founders, Cleve Jones and Mike Smith, both gay men, and Gert McMullin, an ally, stood together on stage just before the unfolding of the panels. Jones gave fiery remarks and noted that the late comedian Williams was an early supporter of the quilt, so it was only fitting to have the display in the meadow named in his honor following his 2014 death by suicide.
"When we started this my heart was full of anger, hate, and despair," Jones said, because at that time the federal government was doing nothing to combat HIV/AIDS, "churches kicked us out" and institutions that could help "utterly failed" because it was a "gay disease." Add racism to the homophobia, he said, and disparities that existed back in the 1980s continue today.
"There are 40 million dead and 40 million more living with the disease," Jones said.
"Lessons? Did we learn them? I don't think we did," he added, pointing to disparities in accessing tests and vaccines for the COVID pandemic today.
But "all that hate," Jones continued, eventually transformed into something more healing with the quilt.
"It was love, encouragement, and hope," he said, "and the power of the movement that the quilt represents."
Smith said that it was 35 years ago that he and Jones held the first meeting — six people showed up, including McMullin, who came with some panels she'd stitched.
"Nearly half of the panels are from mothers, from every state, for their dead sons," Smith told the audience. "We receive hundreds of panels every year and we lead with compassion and love."
He noted that as he was speaking, hundreds of advocates for gun safety were taking part in March for Our Lives events in numerous cities across the country. "We stand in solidarity with an end to gun violence," he said.
Congressmember Barbara Lee (D-Oakland) was to have attended the opening, but Cunningham said she was at the March for Our Lives march in Oakland. Lee, House Speaker Nancy Pelosi (D-San Francisco) and the late Congressmember John Lewis (D-Georgia) were instrumental in working out the agreement for the AIDS grove to take over the quilt.
Tackling stigma
Many speakers called for an end to AIDS stigma. Indeed, it is part of San Francisco's Getting to Zero plan that seeks to drastically "reduce HIV transmission and HIV-related deaths in San Francisco by 90% before 2025," according to its website, along with reducing stigma. Several other Bay Area jurisdictions and other U.S. cities have similar plans. The federal government has its End the HIV Epidemic Initiative, or EHE, which seeks to reduce HIV infections by 75% in five years and 90% in 10 years through the four pillars of diagnose, treat, prevent, and respond. The first phase started in 2021 and runs through 2025, according to the Kaiser Family Foundation website.
Phase one targets much of the Southern United States, and the quilt will help with that effort through a $2.4 million grant from Gilead Sciences Inc. to bring the quilt to the South to "touch and reach communities of color," Cunningham said in his remarks.
Dan O'Day, the CEO of Gilead, said the Quilt Southern Initiative is expected to reach many people.
"The threads that are woven into each panel carry thousands of stories, which is why being in its presence has such a powerful impact," O'Day said. "We want to tackle stigma and discrimination, and the quilt inspires action and reminds us of the cost of human life."
Dafina Ward, a Black woman who's executive director of the Southern AIDS Coalition, will partner on the project. She said the coalition hopes to build bridges to the South, particularly among Black and Brown, same-gender-loving, and migrant communities.
"My heart is full of gratitude," she said. "There will be liberation, there will be praise. We won't end AIDS in this country until we end the epidemic in the South."
White House sends officials
Harold Phillips, director of the White House Office of National AIDS Policy, and Admiral Rachel Levine, assistant director for health at the U.S. Department of Health and Human Services, were in attendance.
"It's a poignant yet somber event," Levine, the first trans person to win Senate confirmation to an administration post, told the B.A.R. in a brief interview.
In her remarks, Levine recalled being at the forefront of the epidemic back in 1983 when she started a pediatric residency at Mt. Sinai Hospital in New York City. Babies suffering from opportunistic infections all died, she said, as did their mothers.
"It was heart wrenching to be a physician in New York City, and I'm sure in San Francisco," she said, recalling those early years.
She noted the "huge progress" today with PrEP, but "we're not getting those medicines to people who need them most."
Phillips, who is Black, spoke about an old friend of his who died of AIDS in 1991. "As a gay man living with HIV, the quilt meant so much to me, all in the face of deep sorrow and stigma," he said. "I believe the quilt is a tremendous teaching tool."
Gay state Senator Scott Wiener (D-San Francisco) told the B.A.R. that he was pleased to see the quilt back in San Francisco. (When it is not on display or loaned out to other entities, the quilt is housed in a 7,000 square foot warehouse near Oakland International Airport in San Leandro.)
"It's a powerful reminder — HIV did this to us and is still with us. We must never forget people are still getting sick and dying," he said. (On Sunday, Wiener's San Francisco home and state offices in the city and Sacramento were search after he received a bomb threat.)
San Francisco Mayor London Breed highlighted the decrease in the city's number of HIV cases — they fell to 166 in 2019, she said — but noted, like other speakers, that the rates for Blacks and Latinos continue to be disproportionately high. The number of HIV transmissions fell further, to 136 in 2020, the most recent figures available from the San Francisco Department of Public Health.
People who viewed the quilt panels reflected on the many names represented.
"It's kind of overwhelming," said a San Francisco woman who identified herself only as Mary. "I'd never seen it before."
Another San Francisco woman, who identified herself only as Sue, echoed those comments.
"It's hard to remember back to that time," she said.
Back at the podium, Alencastre and Johnston read the list of names they were provided. Then they added one more.
"Connie Norman," they said in unison.
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