​fighting the silence that still surrounds hiv/aids

ACT UP succeeded in the 80s in the getting the issues around HIV/AIDS into public consciousness and government policy changed. Here, members from ACT UP past and present reminisce on the activist group, and explain why it’s just as important today as...

by Tom Rasmussen
13 November 2015, 2:00pm

No one really talks about HIV today. If anyone does, it's often about how HIV was huge in the 80s, how it's a gay thing, how it's big in Africa right now. But this, by a million miles, is not the whole picture.

Since its outbreak HIV/AIDS has killed 39 million people worldwide. Today, 35 million people live with the virus. Infection rates are rising at record speed globally - a statistic not restricted to the global south, with new diagnoses in the UK hitting an all time high year on year for the past three years. So why is there silence?

The AIDS Coalition to Unleash Power — better known as ACT UP — was formed originally in New York in 1987 to answer this question. Dubbed as "the last successful social movement in America", by renowned activist Sarah Schulman, the eventually international direct action activist group was victorious in raising public awareness and forcing the government to provide healthcare to those who were dying of AIDS related illnesses. But ACT UP is not just a thing of the past — across the globe it is reforming.

Here, members from ACT UP past and present, and around the world, offered their voices to help paint a picture of the spirit of meetings then and now, the international situation, and the diversity of groups that ACT UP brought together.

Jeremy Goldstein, Secretary of ACT UP Melbourne recalls the spirit of meetings during crisis. "I remember the anger, the fear, and the uncertainty and the release we found on the dance floor. In those days, our parties were acts of defiance in the face of death. Dancing was a political act. We would survive it."

Trinidad and Tobago had the second highest incidence of deaths from HIV in the 80s. Jason Jones, founder of the I am One project, speaks about how his community was decimated. "I lost over 300 friends. The lack of education, and being a very small place — it was petrifying. ACT UP in New York was the first organisation that actually mobilised us and gave us a voice. In Trinidad it is illegal to be homosexual. And there is a correlation between HIV infection rates and the criminalisation of homosexuals."

Andria Efthimiou-Mordaunt, an ex-injection drug user who lost her husband in the early years of the crisis, says she learned a lot, but at great cost. "I had just come out of rehab for injection drug use — and 13% of that community of 50 of us were already diagnosed as HIV positive — I knew a few things… that it clearly wasn't just a gay disease. I got active. And I was in this rehab and people were being treated really badly. It was like 'hello… you can't just carry on regardless, these people are sick.

"I was taken by a researcher to an ACT UP meeting in New York. There was this guy — Alan — who walked to the front. 'I am a recovering addict, alcoholic extraordinaire'. It made me feel good, for a moment. 'Wow, I'm not a dirty devious drug addict, I'm an extraordinaire', I thought. This is what I got from ACT UP in the end. HIV forces you to look past all of the stigma, to the individual."

But the goalposts have changed since ACT UP's first formed. Faith Taylor, a current ACT UP organiser, addresses the reasons to stay active in 2015. "HIV/AIDS is a pivotal point around which so many different struggles meet. It encapsulates race, sexuality, and gender — all particular stigmas attached to HIV/AIDS. Now, in 2015, there is enormous potential for marginalised groups to come together united in anger and be a powerful voice against that orthodoxy.

"In meetings today, there's always an explicit emphasis on openness and sensitivity about bodies — which is something that isn't present in other groups."

Dan Glass is the person who decided to reform ACT UP London. He was inspired to speak up because of the gravity of the group's heritage. "When I got diagnosed nearly ten years a go I was a numpty, I knew nothing about it. Eventually, I started being more open about it. The political became the personal. And since I discovered ACT UP nothing's really been the same.

"We have so much to thank the original ACT UP activists for, and so much to learn from them — if it wasn't for them I wouldn't be here. ACT UP turn grief into love. And powerful love is the ultimate power."

Now, we are at a crucial time. In the West, HIV is no longer a death sentence, but stigma toward those who are positive prevents people from seeking treatment, learning their status or living safely. The global situation is much more urgent. 34 years since the first outbreak of HIV in the USA, silence still = death. It is dialogue, and action, that equals progress. So learn your status, and join in the conversation.

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Text Tom Rasmussen
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Keith Haring
Tom Rasmussen