Editor’s Note: This article is part of KQED Arts’ story series Pride as Protest, which chronicles the past and present of LGBTQ+ activism in honor of the 50th anniversary of the Stonewall riots. Learn more about the series here.
By the time the Surgeon General of the United States published the office’s first report on Acquired Immune Deficiency Syndrome, 27,000 Americans were already dead or dying of AIDS.
Issued in late October 1986, Surgeon General C. Everett Koop’s slim pamphlet contained much-needed public health information stripped of the political rhetoric that characterized nearly all of Washington’s conversations about AIDS—but it was not timely.
The report appeared nearly five and a half years after the Centers for Disease Control identified the first patients of what would come to be known as AIDS. In 1981. In the meantime, national media coverage had alternately ignored and sensationalized the epidemic, often repeating misinformation about the disease’s communicability or paying attention only to patients from “the general population” instead of the gay men who were the majority of the early stricken.
President Ronald Reagan wouldn’t make his first public address on the subject until the end of May 1987.
Faced with a lack of either federal leadership or journalistic accountability between the years of the CDC’s first report and Koop’s belated one (and for years after), the task of warning against AIDS, agitating for research funding and educating the public about the epidemic fell to individuals living with AIDS or those caring for them. They created their own support structures, their own pamphlets, benefit parties, newsletters and vigils.
Traces of these efforts can be found in the ephemera collections of various Bay Area archives, including the San Francisco Public Library, home to the James C. Hormel LGBTQIA Center. While the posters in these collection—along with flyers, pamphlets, stickers and mailings—in no way tell a complete story of local AIDS activism in the 1980s, they do provide a sense of the material that was circulating during the time, offering tangible proof of a community fighting for its life.
Before people suffering from weakened immune systems and opportunistic infections were grouped under the moniker of AIDS (the CDC would first use this term in September 1982), a unifying diagnosis for many early patients was Kaposi’s sarcoma (KS), a rare and unusually aggressive skin cancer that appeared as purplish lesions. San Francisco resident and registered nurse Bobbi Campbell was the first KS patient to go public with his condition, with a December 1981 article in the nationally syndicated gay newspaper San Francisco Sentinel. At the same time, he convinced a Castro drugstore to hang photographs of his lesions in the window, showing other men what to look for as he alerted them to the reality of this new disease.
Campbell appears in the 1982 International Lesbian/Gay Freedom Day guide (as the Pride parade was then known) under the headline “What’s it like to have Kaposi’s sarcoma?,” the first mention of the AIDS in the annual celebration’s materials.
In his short column, the self-proclaimed “KS Poster Boy” strikes an optimistic tone of warning: “Are you thinking ‘This can’t happen to me’? I didn’t think it could happen to me, either. But it did.”
Alongside Campbell’s feature is a dry, much more clinical text authored by two registered nurses. “Something is breaking down the immune systems of certain gay men, leaving them susceptible to disease,” they write. “In general it is crucial to take care of yourself, in this time when far too many gay men are dying of unexplained causes.”
In 1985, the parade would be dedicated to Campbell, who died in August 1984.
In early 1983, with San Francisco’s Department of Public Health yet to produce a single piece of informational literature on AIDS, the Harvey Milk Gay Democratic Club took matters into its own hands. Developed with information from Bay Area Physicians for Human Rights, this frank and simple brochure provided what was, at the time, the best risk-reduction guidelines available to the gay community.
“We don’t have to give up sex, but we do have to be careful,” the brochure reads. It then proceeds to go step by step through various sex acts, defining them as “very risky,” “minimal risk” or “yes! yes! yes!” (hugging and other sensual, yet nonsexual, activities), all of which is illustrated by a series of charmingly cheeky cartoons.
“In this time of crisis, it is essential that we reexamine our ways of sexual expression,” the brochure says. “The issue is not a moral one, but a practical one. We have fought for our freedom and intend to continue that fight, but this struggle is even more basic. We are fighting for our lives.”
The archives are filled with pamphlets and brochures, many targeting specific demographics affected by the AIDS epidemic, but not necessarily those seen in earliest media reports: white gay men. Most of the above pamphlets come from the late ’80s, well after the early days of panic, disinformation and denial, when safe sex suggestions might be dismissed as moralistic, homophobic messages.
Several of the above were published by the San Francisco AIDS Foundation, co-founded by Cleve Jones in 1982 (as the Kaposi’s Sarcoma Foundation) in response to the city’s emerging health crisis. Described in Randy Shilts’ seminal text on the AIDS epidemic, And the Band Played On, the early days of the SF AIDS Foundation “started with one beat-up typewriter donated by a local gay bartender, office supplies pilfered from volunteers’ various employers, and one telephone that started ringing within an hour of hits installation. And it never stopped ringing.”
As it grew, the SF AIDS Foundation sponsored condom distribution during Pride, the first public demonstration of people with AIDS (a candlelight vigil in March 1983), the first AIDS bike-a-thon, the creation of a food bank, a needle exchange and many, many trifolded pieces of educational literature.
Formed in New York in 1987 after a galvanizing speech by Larry Kramer at the Lesbian and Gay Community Services Center, the AIDS Coalition to Unleash Power (ACT UP), was a leaderless, anarchic network of direct action protest groups that eventually spread around the world. In San Francisco, an existing activist group, AIDS Action Pledge, merged with ACT UP and changed its name to become ACT UP/San Francisco.
In an undated pamphlet titled “Our Goals and Demands,” the group, “united in anger and hope,” argues for “massive governmental funding for research, health care, education, anonymous testing, and treatment.” That funding, they reason, should be taken from the military budget.
On Jan. 20, 1989, ACT UP/SF members staged a die-in at the Pacific Stock Exchange, timed to George H.W. Bush’s inauguration in Washington, D.C. As activists sprawled on the ground, fellow members traced their outlines in chalk. Speaking through a megaphone, an ACT UP member named Brigid spoke to the assembled crowd, “This government, for the past eight years, has been known for what it has not done. It has not cared about people with AIDS. We have been expendable.” The question was: What, if anything, would President Bush do differently?
ACT UP/San Francisco would stage many other demonstrations, including a week of actions timed to the Sixth International Conference on AIDS, which took place in San Francisco in June 1990. Journalist and activist Tim Kingston, who participated in these events, told 48 Hills in 2015, “If ACT UP hadn’t pushed so hard, AIDS medical research would be 20 years behind.”
“In ’87, no one had heard of ACT UP. In ’89, we were banging on the door. And in ’90, we had arrived full-scale.”
Callers to the SF AIDS Foundation hotline might be directed to the Shanti Project, a Berkeley organization founded in 1974 to enhance the health, quality of life and well-being of people with terminal, life-threatening or disabling illnesses. In 1982, Bobbi Campbell and Jim Geary, a volunteer grief counselor with the Shanti Project, offered weekly meetings for Karposi’s sarcoma patients, one of the only services available at the time to those who would later be understood as people with AIDS.
In May 1983, the San Francisco Board of Supervisors approved $2.1 million for the city’s early AIDS programs, providing enough money to the Shanti Project to create residences for 48 homeless AIDS patients. (This amount, Shilts wrote in And the Band Played On, combined with an additional $1 million enacted for AIDS in 1982, meant spending by the city of San Francisco “exceeded the funds released to the entire country by the National Institutes of Health for extramural AIDS research.”)
In the above 1984 issue of Eclipse, the Shanti Project newsletter, registered nurse Helen Schietinger writes of the project’s success in helping people approach the end of their lives with dignity: “For many, the Shanti Residence Program has provided the stability and security which enables them to continue living their lives focused on what is important to them, rather than worrying about whether they have a roof over their heads.”
In 1984, the Democratic National Convention took place in San Francisco, and the city’s LGBTQ+ population marched for their core issues. At the top of their list? “Immediate and massive federal funding to end the AIDS epidemic.”
In a two-mile march from the Castro to the Moscone Center, 100,000 people filled the street, hoping to create a scene that would reach the national media and bring gay and lesbian issues to the rest of the country.
“At the 1984 Convention,” the organizing documents read, “we have an opportunity to define our own issues and choose our own spokespeople. If we do not do this, the media, which will surely write ‘the gay story’ of this convention, will make our choices for us.”
In a classic San Francisco note, alongside route logistics and an entertainment lineup (comedy from Tom Ammiano), is the following: “Bring a sweater—weather changes quickly in S.F.”
While the AIDS Memorial Grove in Golden Gate Park is the nation’s official site of remembrance, the AIDS Memorial Quilt, a project that began in 1987 and now numbers over 48,000 individual panels, is its peripatetic one.
Each panel measures 3 by 6 feet, the approximate size of a grave. And each commemorates a family member or loved one lost to AIDS, hand-stitched with personal symbols, objects, names and dates. The first public display, in October 1987, took place on the Capitol Mall in Washington, D.C. with 1,920 panels. A year later, the quilt returned to Washington with more than 8,000 panels. Its goal was to impress upon the federal government—and the American people—the scale of the AIDS epidemic, and the desperate need for increased federal funds in the fight against it.
The brochure reads, “With the Quilt, we’re able to touch people in a new way and open their hearts so that they no longer turn away, but rather understand the value of all these lost lives.”
By the end of the 1980s, nine years after the CDC’s first reported cases, nearly 90,000 Americans had died of AIDS. Many more groups would form in the years to come to fight for more effective AIDS treatments and against the slow-moving bureaucracy that stifled such research. And many more actions would directly confront the American public with the scale of the crisis, skillfully using media coverage to amplify their message. But when no one was watching—or seemingly caring—the efforts of individuals and groups like those documented above made sure the American people and their government could no longer turn away from AIDS.
