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'I feel I'm dying of being untouchable': The hidden history of women with HIV in the 1980s

3 27 11
23.02.2021

Last week saw the concluding episode of Russell T Davies’s ground-breaking series, It’s A Sin. The mini-series shines a light on the history of the HIV/Aids pandemic in Britain and its devastation on the gay community in London in the 1980s and 1990s. It is a beautiful, harrowing and much needed piece of work, and one that will undoubtedly change public understanding of the early years of HIV. The history of how the queer community came together to fight not only the disease, but also the prejudice, stigma, and abuse people with HIV endured, is one that must be heard.

But It’s a Sin can only tell the story of one group of people in one city. There are so many more voices and stories that have been hidden, hushed up, and silenced through years of stigma and misunderstanding. The stigmatising narrative that HIV was a ‘gay disease’ was so entrenched and pervasive that those who contracted the virus and were not gay men often found themselves shut out of the conversation entirely.

In the mid-1980s, the little support available was largely organised by and for gay men. As the gay community rallied to protect the sick and fight for treatment, women who contracted the virus often found themselves isolated with no sense of community at all.

It’s A Sin is beautiful, but it neglects the women who also died of Aids

Women like Amanda Heggs, who was diagnosed with HIV at the age of 28, in 1986. Hoping to raise awareness of women living with HIV, Amanda gave an interview to The Guardian in June 1989. She spoke of the surprise and disbelief she encountered when she disclosed her diagnosis and of being the only woman to attend the various HIV support groups, but most of all Amanda spoke about how lonely it was. “More HIV positive women and women with Aids are ‘coming out’,” she said, “but they even have to borrow language from the gay community. Unlike homosexual men with Aids, women do not have an entire network with friends who understand the problem.”

Fighting stigma with no community to turn to left Amanda isolated and longing for contact. “In months, the only people to touch me have been medical staff. When I think of the future, I think, either I’ll die of Aids or have to live the rest of my life alone. I don’t know which alternative appears the most daunting . . . I feel I am dying from being untouchable.” Amanda passed away in 1992.

Amanda’s story was far from unique. The Chief Medical Officer’s report for 1986 found the ratio of male to female of HIV cases in the UK was 33 to one. By 1989, it was estimated that women accounted for a third of HIV cases worldwide, with several thousand diagnosed in the UK and upwards of 8,000 women........

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