The history of the HIV/AIDS crisis is often remembered as a dark time in the 1980s and early 1990s when a deadly virus claimed the lives of thousands, primarily gay men. Yet, woven into that history is a lesser-known but equally powerful story: the role of lesbian activists in fighting the epidemic. Though HIV/AIDS disproportionately affected gay men, lesbian activists became central figures in the battle, providing support, raising awareness, and advocating for policy changes. Their contributions were born out of solidarity and a deep commitment to community care, and their efforts are a testament to the power of collective activism in the face of immense adversity.
The HIV/AIDS crisis emerged in the early 1980s, hitting the LGBT+ community with terrifying speed. At the time, little was known about the virus, and misinformation spread as rapidly as the illness itself. Gay men, the group most visibly affected, faced not only a deadly disease but also harsh societal stigma. AIDS was often portrayed as a “gay disease,” leading to widespread fear, discrimination, and government inaction. It became clear that a massive public health effort was needed, but political leaders were slow to respond.
During this time, lesbian women saw the devastating impact it was having on their gay brothers and the LGBT+ community as a whole. Many felt a moral imperative to step in. While much of society looked the other way or, worse, ostracised people living with HIV, lesbians stepped forward, offering support where it was most needed.
One of the most significant contributions made by lesbians during the HIV/AIDS crisis was providing care for those who were sick. In the 1980s, when the disease was little understood and widely feared, many patients living with HIV, and AIDS were discriminated against by hospitals and medical professionals. The dignity and respect that is often promised to patients was in short supply, and so, lesbians stepped into this void, serving as caregivers, nurses, and hospice workers. Despite often not being trained medical professionals, these women tended to patients, offering not only medical care but also emotional support during a time of intense isolation.
Organisations such as the Gay Men’s Health Crisis (GMHC) and ACT UP (AIDS Coalition to Unleash Power) were key players in the response to the epidemic, and many of their volunteers and leaders were lesbians. Women like Dr Joyce Hunter, a founding member of GMHC, and Maxine Wolfe, a key figure in ACT UP, worked tirelessly to advocate for policy changes, raise awareness about the epidemic, and fight for the rights of people living with HIV.
Lesbians also played a crucial role in fundraising efforts. Benefit concerts, bake sales, and art auctions became common ways to raise money for AIDS research and to support those who were sick, as well as blood drives within the lesbian community to support those living with HIV. Groups like the Lesbian Avengers, known for their bold and direct activism, organised events that helped bring attention to the crisis while also providing much-needed financial support for care and research.
In addition to providing direct care, lesbians also worked to combat the stigma and misinformation surrounding HIV/AIDS. Early in the crisis, AIDS was wrongly seen as an issue only affecting gay men, and many people did not understand how the virus was transmitted. This lack of knowledge led to widespread fear and discrimination, both within and outside the LGBT+ community. Lesbians, along with their gay male counterparts, fought to educate the public about the realities of HIV, pushing back against the harmful narratives that fueled further marginalisation.
One of the most prominent efforts in this regard was the creation of the ACT UP Women’s Caucus. Women in ACT UP, including lesbians, realised that HIV was not just a “gay men’s issue,” but one that affected all people, including women. The Women’s Caucus worked to raise awareness about how women were also vulnerable to HIV infection.
They fought to ensure that women were included in clinical trials for HIV treatments and that women-specific issues related to the virus were addressed in public health campaigns. Their work expanded the understanding of HIV/AIDS beyond the narrow lens through which it had initially been viewed, ultimately helping to shape more inclusive healthcare responses.
Lesbian activism during the HIV/AIDS crisis was not limited to caregiving and direct action; it also involved building broader coalitions for long-term change. Many lesbians worked within existing LGBT+ organisations, while others founded new groups to address specific needs. The Lesbian AIDS Project, for example, was established to provide education and services to women who were at risk for HIV.
While the peak of the HIV/AIDS crisis has passed, the need for continued activism remains. HIV/AIDS continues to affect marginalised communities globally, and the fight for access to affordable healthcare and life-saving medications persists. The legacy of lesbian activism during the crisis serves as a powerful reminder of the strength and resilience that we have to offer. Their work not only saved lives but also transformed the conversation around HIV/AIDS, challenging stigma and advocating for a more compassionate world.
Today, an end to new transmissions of HIV is within reach. The Terrence Higgins Trust, in collaboration with governments across the UK, has set an ambitious goal of ending new transmissions by 2030.
Their groundbreaking 2023 TV campaign, supported by the Scottish Government, highlighted that the greatest threat to those living with HIV today is stigma. Medical advancements have made HIV a manageable condition, yet stigma continues to prevent people from seeking care or knowing their status, deepening inequalities.
As HIV activist and campaigner Matthew Hodson often says, “HIV has changed. Tell everybody.” This simple but powerful message is key to achieving the goal of ending transmission by 2030. The truth that “undetectable means untransmittable” is life-changing news, and it holds the promise of transforming public perceptions of HIV in the 21st century.
The lesbian community, which stood firm in solidarity during the height of the crisis, can once again play a critical role in spreading this message and fighting stigma.
As we continue to confront health disparities and discrimination, the legacy of lesbian activism during the HIV/AIDS crisis serves as a model for building a more just and equitable future.
The power to change the conversation around HIV, and continue to improve the lives of those living with HIV is within our reach. It’s up to us to ensure that those living with HIV are met with understanding, compassion, and dignity, and to honour the activists who paved the way for the progress we’ve made.
By looking to our elders and drawing from the strength of our shared history, we can continue the fight for justice, equality, and health for all.
Our history, and our elders are a blessing, and we must hold them dear as we move ahead.
In times of hardship, solidarity and love remain our greatest tools for resistance.
Donate to the Terrence Higgins Trust today and join the movement to end new transmissions of HIV by 2030.
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