Two days before Christmas 1986, 20-year-old Joan Baker received the results of her HIV-antibody test: Positive. Baker had gotten tested as an act of solidarity with a friend, not because she thought she was at risk. Her diagnosis was a shock. 

She was living in San Francisco, and while the city had been a model of AIDS care to the world, there were few services for HIV+ women when Baker was diagnosed. In 1986, many HIV care providers and activists knew women could contract HIV/AIDS, but this knowledge did not translate to widespread services or research, or compassionate coverage from the media. During the AIDS crisis, an epidemic that exposed the brutalities of fear and stigma, HIV+ women, particularly HIV+ lesbians like Baker, were rendered invisible. Baker would spend the last seven years of her life shattering this invisibility by being transparent and open about her HIV status and a vocal activist dedicated to her community.

In studies of the AIDS crisis, a prominent narrative has emerged that represents the epidemic as healing a divide between gay men and lesbians, which stemmed from 1970s gay liberation and lesbian separatist politics. But Baker’s story disrupts the tidiness of this communal healing narrative. At the time of her diagnosis, AIDS was still seen as an issue solely affecting gay white or IV drug users, who were often represented as straight but never exclusively as a male or female. These stereotypes prevented people living with AIDS beyond the bounds of these identity markers from accessing the resources and support they needed. Baker challenged stereotypes of who got HIV and articulated the needs of HIV+ women, both gay and straight, to service providers. 

Despite Baker’s visibility during her advocacy, accounts of HIV+ women, particularly lesbians in the 1980s and 1990s, have been minimal in recent mainstream histories of the AIDS/HIV epidemic in the U.S. There is little archival evidence of Baker’s efforts. Because of this, oral histories and interviews conducted with those who knew Joan are vital to filling in the archival gaps and promoting a more inclusive, truthful narrative. The silence enveloping experiences of HIV+ lesbians limits current understanding of the impact the AIDS epidemic had on historically marginalized communities. It obscures lessons HIV+ women like Joan Baker could offer our present moment, most notably when it comes to issues of shame and stigma. 

In an interview with Lady Science, Jenn Maeader, Joan’s partner for the last three years of her life, shared much of Baker’s personal background. The youngest of a large family, Baker was born on October 25, 1966 in Riverside, California. Her parents were originally from the U.K. and moved Baker and her siblings several times from southern California to Washington state and then to England in the late 1970s. Eventually, she left her family in England after coming out and returned to southern California, moving to San Francisco in 1986.

Baker had just moved in with a girlfriend prior to her testing positive for HIV. After she broke the news, Baker’s girlfriend broke up with her and kicked her out of their apartment. She was briefly homeless before moving to the Tenderloin neighborhood’s queer-friendly, single-resident occupancy establishment, The Ambassador Hotel. It was here she connected with Jacquie Hansen, a Community Health Outreach Worker (CHOW). CHOWs worked with and served as care navigators for people with AIDS/HIV or those seen as at risk of becoming positive in the Tenderloin. Through Hansen, Baker connected with several programs, including the San Francisco AIDS Foundation, where she attended the first ever women with AIDS support group that had started in early 1987.  

These connections, according to Hansen, made Baker into “an accidental icon.” It was never Baker’s intent to become known for being an activist or HIV+, but to gain access to services, she had to assert a level of visibility. Photographer Jim Wigler had Joan sit for his black and white portrait series “Faces of AIDS,” and photographer Ann P. Meredith documented Baker in her series on women living with AIDS, “Until That Last Breath!: Women and AIDS.” Baker appeared on local talk shows, promotional materials for pharmaceutical companies and care organizations, and spoke at public events. She attended protests organized by the direct action groups AIDS Action Pledge and ACT UP/San Francisco and carried the “Fighting for Our Lives”' banner at the fifth annual Candlelight Memorial March with other Persons with AIDS (PWA) activists in 1988. And during the unfolding of the AIDS Quilt at the 1988 Gay and Lesbian March on Washington, she read the names of people who had died of AIDS emblazoned on the quilt.

Jenn Maeder recalls, “She was the kind of person who would walk down Castro Street and say hi to everyone … She was just very open and not guarded in terms of interacting with people … So, I think that’s why she knew so many people in the HIV/AIDS community.” Sadly, Baker’s openness was not a total escape from the stigma of HIV. 

Many with HIV+ patients found themselves interrogated by mainstream society about how they contracted the disease. Being an HIV+ lesbian brought out people’s judgements of how the virus was contracted. “It wouldn’t be very overt, but you could just tell … by the way the conversation shifted, Maeder says. “She [Baker] could tell whether someone dismissed her as less than or a bad person because they decided ‘this” was how she got it.’” 

Baker was subjected to invasive questions, asking if she was an IV-drug user or if she had sex with men. Baker’s response to these invasive questions is key to her legacy of AIDS advocacy. Instead of engaging with questions about her personal life, she challenged people to reimagine what an HIV+ person looks like: “It doesn’t matter how I got it, it’s the fact that I have been diagnosed and I am coming out as a woman with AIDS, because a lot of lesbians still think that they can’t get AIDS, and I’m here to say it can happen.” 

One story Maeder recounts took place in the final year of Baker’s life when her health was declining. “I was calling people who I thought may want to say goodbye when they had the chance to. So I had been trying to reach [a woman Baker had dated]. I got her voicemail and left a message … And this woman eventually called me back and was furious with me for leaving that message on her voicemail.” Maeder interpreted the woman’s angry reaction as being rooted in a fear of association with Baker and her HIV status. 

In the last year of her life, Baker was surrounded by a strong support group. On September 3, 1993, Baker passed away in her home surrounded by her loved ones and many pets. On October 23, Baker was honored with a political funeral at Dolores Park, organized by Lesbian Avengers activist Judith Cohen. At the time of Joan’s passing in 1993, activists from ACT UP began organizing political funerals honoring those who had died of AIDS, bringing their private mourning out into the public sphere. Activists carried the literal remains of activists through the streets of New York City and Washington D.C. and even scattered their loved one’s ashes on the White House’s lawn in 1992 and 1996. Baker’s political funeral reflected the messages of her life living out in the open as HIV+ proud lesbian.

Joan’s political funeral brought together the Lesbian Avengers, ACT UP/Golden Gate and ACT UP/San Francisco, WORLD, as well as members of the Public Health Department and Lyon-Martin Health HIV Services. Hundreds gathered for the rally, which included Maeder, HIV+ lesbians and straight women, and other AIDS activists as speakers. The crowd carried signs with images of Baker on them and marched to Harvey Milk Plaza in the Castro neighborhood, escorted by Dykes on Bikes. At the Milk Plaza, Maeder made a speech about the importance of Baker and her visibility in the AIDS epidemic, “Imagine if a woman here today who might be at risk now gets tested, and if we can tell her she has a life, she has a future, she has a community that supports her.” 

Twenty-eight years have passed since Baker’s death, and her story is only now reaching a larger audience. The historical narratives of AIDS activism including HIV+ women like Joan Baker are few, and this dearth of stories reflects a continued societal discomfort with HIV+ women and their powerful truths. Oral histories, like this one with Maeder, fill archival gaps, particularly when other sources are scarce, but they can also blow them wide open and shine much needed light and attention onto their stories

Image credit: Candid moment of Joan during a photo session for a Shanti Project newsletter, 1989. Photograph by Joseph Lane.

Correction: A previous version listed Joan’s age at 22 when she received her HIV+ diagnosis.