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Remembering the women of the HIV/AIDS epidemic

On the role women played during the AIDS crisis.

Pictures sourced from Nora Burns' archival Instagram.

There are many things we remember from the HIV/AIDS epidemic in the 80s without failure. For those of us who witnessed it first hand and for those of us who understand it through the pictures, stories and, more arbitrarily, a profound and indescribable connection to our lost chosen family whom we never met, there is a lot that we will never forget. We remember the faces of people who lived with HIV/AIDS pictured in sensationalist media. We remember that it took President Ronald Reagan nearly six years to even mention AIDS publicly and we remember subsequent inaction from governments all over the world. One thing we seem to forget about this tumultuous time for our community is women

There are probably a few reasons why we do not remember the women who found themselves in the middle of an epidemic that seemingly targeted gay men. In 1981, medical professionals almost completely overlooked women in research on the disease, aiming all their focus at symptoms that presented in men rather than women. This limited access to information and treatment has not only led to the rise of cases of HIV/AIDS in women but has also contributed to the lack of understanding of what it was to be a woman living with the disease  during the epidemic. Despite the fact that women living with HIV/AIDS in the 80s in the continent of Africa far exceeded the amount of men and by 1997 women accounted for more than half of cases of HIV/AIDS globally, we have nowhere near as many personal accounts or memories passed down by women.

The homophobic framing of the epidemic as a gay-related immune deficiency or “gay cancer” resulted in the redirection of fear of HIV/AIDS itself to the people thought to be most at risk of contracting it – a narrative which caused discrimination against the gay community and neglect of the women who lived with HIV/AIDS. In a world where the epidemic was treated as a universal issue, we may have had stories from women who lived with HIV and who died of AIDS-related illnesses. What is perhaps most worrying is the number of undiagnosed women whose stories, because of homophobic panic and reactions to the epidemic, remain untold. 

Another way in which women are forgotten is in the way we assume the fear of gay communities and homophobia was a universal feeling during the epidemic. Despite the divisive narratives medical professionals and governments created in order to create fear in seemingly unaffected demographics, many heterosexual HIV negative women were instrumental in the fight against the epidemic and homophobic discrimination. Some of these women were more visible than others. For instance, Elizabeth Taylor ran an illegal distribution of powerful but unapproved drugs to treat HIV/AIDS out of her Bel Air home. She even shamed President George Bush stating, “I don’t think President Bush is doing anything at all about AIDS. In fact, I’m not even sure if he knows how to spell AIDS.” 

Some lesser known stories of HIV negative women’s involvement in the epidemic are outlined by Victoria Noe in her book Fag Hags, Divas and Moms: The Legacy of Straight Women in the AIDS Community. She highlights the work of Rosa E. Martinez-Colon who helped educate people of all demographics in Puerto Rico about the challenges that people who lived with HIV/AIDS faced. Noe also writes about Trudy James, who aimed to bridge the divide between people living with HIV and religious groups. Noe herself appeared on the front lines, working with AIDS service organisations. 

One story in particular alerted me to the importance of women in the HIV/AIDS epidemic and this is the friendship of Nora Burns and David. Nora met David in a gay club in Boston in 1979, standing on top of a speaker with no shirt on. The two struck up an instantly fierce and intense friendship, and they moved to New York City together after graduating from college. Through her friendship with David, she found her home in the gay community of New York. However, what is most important about their friendship was her undying loyalty not only to David but to the community he welcomed her into. Nora did not turn her back on this community when the epidemic began and, after David died of AIDS related illness in 1993, she remained a fierce ally of the AIDS community.

This story is particularly striking for many reasons. It demands the visibility of women in the gay and AIDS communities and also asks us to remember the solidarity that women have historically shown for these communities. It is also striking because she continues to tell this story to this day. 

Through her Instagram, she archives not only her intensely important friendship with David, but to other gay people during the epidemic. Through sharing intimate photos and stories from a past we’ll never truly fathom, she brings to the foreground the importance of friendship between women and gay men during the epidemic. She also has performed a one woman show titled David’s Friend which, among New York, disco music and sexual liberation, discusses the importance of her friendship to David and others in the community she was adopted into. 

Remembering Nora’s and many other women’s involvement in the HIV/AIDS epidemic is vital in dealing with a past we may never come to terms with. It is in remembering these slightly less visible but undeniably important memories and stories that we can truly honour the women who, when they weren’t burying their loved ones, comforting them when no one else would and leading education on the epidemic in order to eliminate misinformation, were our friends in a time where it was dangerous to be. 

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