It's been about 37 years since the AIDS epidemic spread fear and havoc among women, men who have sex with men (MSM), transgender folks, and substance users in the United States. Many of us who are younger don't know what those days were like. But World AIDS Day should be a time when we remember those we have lost to the virus. This year, I spoke with some of the people in my hometown of Los Angeles who fought for the lives of our communities.
June 5, 1981 marked the beginning of the AIDS crisis in Los Angeles. Five gay men all shared common symptoms -- Pneumocystis carinii pneumonia, cytomegalovirus infection, and candidal mucosal infection -- as their immune systems began to deteriorate. By 1982, this mysterious plague would claim the lives of hundreds of people in the U.S. alone. It wasn't until the groundbreaking work of Michael Gottlieb, M.D., and the late Joel Weisman, D.O., that we had an appropriate name for this disease -- acquired immune deficiency syndrome (AIDS). The World Health Organization now asserts that more than 70 million people have contracted HIV globally, and about 35 million have died.
This era was a challenging time; people would watch their lovers and friends hold their last breath of hope. According to Richard Zaldivar, founder and executive director of The Wall Las Memorias Project, the AIDS epidemic was hyper-visible in major cities, like Los Angeles and San Francisco.
"What I remember in the '80s was gay men living in fear," he said. "I think the most telling experience I had was traveling to San Francisco. I was there alone. I wanted to get a feel for what it was like to be openly gay."
Zaldivar, who was not out at the time, went on to recall "walking into a bar in Castro Street. I thought it was going to be robust and popular, but I only saw about nine men. Their energy level was very down, like they were depressed. It was a scary time. That to me was AIDS in the 1980s."
Zaldivar worked in local politics in Los Angeles back in the late 1980s. He was not out about his sexuality, which is why he would make trips by himself to San Francisco to experience an intimate connection with what the city had to offer. The conversation between HIV and homosexuality -- not to mention the denial of bisexuality within the gay community -- was out of the picture.
"We also have to go back to that period of time and chat about homosexuality being illegal," he said. "We were dealing with a virus no one knew about, and on top of that, it was not legal to be gay. Times were different."
Artist and HIV activist David Wojnarowicz was appalled at the fact that the government could be so apathetic about the fact that people were dying from AIDS. "I want to throw up because we're supposed to quietly and politely make house in this killing machine called America," Wojnarowicz wrote. "I'm amazed we're not running amok in the streets, and that we can still be capable of gestures of loving after lifetimes of all this."
Wojnarowicz's provocative memoir, Close to the Knives, illustrates the madness that took place during the early AIDS epidemic. Doctors had no clue what was going on, and to top that off, they were mistreating patients by neglecting them, keeping them quarantined, and at one point even "injecting AIDS patients with human feces," as one doctor in Long Island was caught doing. Wojnarowicz's powerful depiction of the AIDS crisis reads as a manifesto and reminds people of the human condition. Art, activism, and scholarship were coming together to bring about much-needed change and awareness.
Related: Early Latinx AIDS Activism Holds Lessons for Today
"When I first heard about [AIDS], it was on the news -- they were calling it GRID (gay-related immune deficiency)," shared Salvador Fuentes, with Ventura County HIV/AIDS Advisory Committee in California. "This was eye-opening. I already knew I was gay and it was controversial. The epidemic wasn't visible, other than what I saw. But people were quietly talking about it at gay bars and other safe spaces."
Fuentes was diagnosed with AIDS in 1987; back then, doctors called it ARC (AIDS-related complex). He witnessed the death of close friends who had terrible side effects from AZT, which caused nausea, mood swings, and cramping.
"AZT only borrowed time," he said. "It did more harm than good … We were essentially lab rats."
Leaders such as Zaldivar took on the responsibility to fund HIV work at a time when elected officials were too cowardly to voice the need themselves.
Zaldivar's efforts to get Los Angeles County funding for HIV work was a success, with the help of a state assembly member and board members from The Wall Las Memorias Project, which consisted of mothers from the community, as well as Catholic priests. The Wall Las Memorias was founded in 1993, and although they received much pushback from elected officials and the Sierra Club, they were able to build an AIDS memorial in the Lincoln Heights neighborhood. Elected officials were scared of supporting such a controversial subject, fearing conservative Latinx voters would not re-elect them for another term. Meanwhile, the Sierra Club members at the time thought that the AIDS Memorial Project would be a conflict of interest with the city's Department of Recreation and Parks regulations.
Despite these hurdles, The Wall Las Memorias now celebrates their 25th Annual Noche de Las Memorias, a tradition that started on December 1, 1993. This vigil honors the people we have lost to AIDS and takes place in Lincoln Heights, where they have the AIDS monument. Zaldivar noted that it took the work of individuals to build the network of support for people living with HIV long before it became a popular cause to champion for celebrities and elected officials.
"We weren't waiting for politicians to make decisions, we were going to the community about this," said Zaldivar. "Nobody wanted to talk about HIV/AIDS. Nobody wanted to deal with this. So we did it."