Photo: 120 Beats per Minute

Jeremy Goldstein and Dan Glass are two openly HIV+ writers and activists whose short film ‘A Queen’s Christmas Message’ made headlines on Christmas Day.  They recently took part in a conversation arising from an advance screening of ‘120 Beats per Minute’ - a passionate and defiant account of AIDS activism at the height of the pandemic as seen through the eyes of ACT UP Paris. ACT UP London will be organising a series of special events to mark the release of this inspiring new film in April.

Jeremy: I knew instantly, the film could have only been made by someone who was there. Sure enough the director Robin Campillo was a member of ACT UP Paris at the exact same time I was in ACT UP Melbourne. Wherever you were in the world, be it Paris, London, New York or Melbourne, the fight for HIV treatment during the pandemic was the difference between life and death.

I had always been active in the LGBTQ community but in December 1999, I found out I was HIV. Everything I had ever learnt about life changed with that one diagnosis. I had also become homeless in the same week, but in those days in London, being homeless and newly diagnosed HIV, was enough to get you onto the housing list, so within a week or two I was offered a flat. On the one hand becoming HIV sorted a lot of stuff out, but life can be hard enough without HIV, and even now there is still so much we don’t know. 

In 2014, ten years into taking my antiretrovirals, I had developed what looked like a large rash on my inner thigh.  After a biopsy the doctors said it was a mound of Kaposi Sarcoma lesions, so I freaked out and immediately assumed I had AIDS. As an 80’s kid, I knew these lesions as the kiss of death, but no, somehow I had become immune to my antiretrovirals. This life-support machine I had come to know in the form of a daily dose of pills had stopped working, and I was confronted with the precarious and synthetic nature of that treatment. Since the Kaposi Sarcoma, I’ve had various forms of HIV related cancers, but last year the shit hit the fan. I developed a stage four lymphoma, the treatment of which was a bone marrow transplant and several weeks in hospital. I finally got the all clear last June, but it just goes to show that although most people with HIV are undetectable, and live a happy, healthy, positive life, HIV is unpredictable and affects everyone differently.

Jump forward thirty years from those first meetings of ACT UP Melbourne and my own experience of grappling with the virus, I’m sitting in a central London cinema watching ‘120 Beats per Minute’ with a new generation of ACT UP activists. 

Dan, what went through your mind when you found out you were HIV?

Dan: I was a sexually promiscuous, happy-go-lucky, 20-year-old child of the 90’s growing up under the era of 'Section 28' which banned the promotion of homosexuality, so I was living under a culture of silence and didn't have a clue about HIV / AIDS. I was also a die-hard Eastenders fan, so I asked the doctor if I was going to die like Mark Fowler? After all, Mark Fowler was my reference for the AIDS epidemic, and all I could think of was what would Pauline Fowler and Peggy Mitchell say? It wasn't until I got home from the doctors and told my mate Gary who said his Mum died of AIDS that my world fell apart. A few hours later I was covered in my own wee, and the sense of grief and fear gripped me from out of space. All I could think was 'I don't want to die'. 

Jeremy: Ever since we met in 2012, I always imagined you as one of the original ACT UP warriors of the 1980’s, so how did ‘120 Beats per Minute’ make you feel?  If you could time travel to that period, what would you do?

Dan: Join the fight against government inaction and pharmaceutical greed. I owe the 80's and 90's generation my life. Simple as. At the screening we were surrounded by people of all ages who changed the course of HIV in London. We understood the scenes of lust, love, loss, fear, fragility, ferocity and community power. During the film we cried, laughed, flirted and felt the ghosts of lost husbands, daughters, friends and fellow freedom fighters we lost in the war that is the HIV pandemic.

Jeremy: Among the most memorable scenes for me were those on the dance floor. In the late 1980’s, our parties were acts of defiance in the face of death. Even dancing was a political act. We would survive it. I remember the anger, the fear and the uncertainty as if it were yesterday. I was also reminded of the candle lit vigils and political funerals, which when I think back on it were actually full of love and dignity. Of course the anger was there too, but it was the love I remember the most. 

Dan: I can always relate to the love. I saw the HIV / AIDS activists portrayed in the film as my parents, my ancestors, and my family. Family in the truest form, is about who provides you with a sense of belonging, tenderness, purpose and above all that love. So many of us have had to re-imagine the meaning of family in a world where our identities as faggots, dykes, junkies or more are silenced, marginalised and ignored, so whether I'm time travelling through 1980's Paris, or living in the harsh reality of here and now London 2018, I will tighten my grip on those around me and push forwards. 

Jeremy: You have to don’t you…

Dan: AIDS is still a political crisis. It’s not over. It's hard not to get impatient with anyone who thinks it’s over, when every day you and your community are suffocated out of existence because a few people in society try to steal your life-support machines.

Photo: Holly Revell (ACT UP London with Ed Hall - 2nd from left, Jeremy Goldstein - 4th from left, Natalie Bennett - 3rd from right and Dan Glass - 2nd from right)

Jeremy: And there’s just as much stigma as there ever was. I mean look at what’s going on in America. Years of political progression undone in the last twelve months alone, and they don’t even know it. It’s starting to feel as if we’re returning to the darkest days of the Reagan era or worse.

Dan: Put it this way – if HIV / AIDS primarily affected rich, white, heterosexual men, would there have been such a tragic genocidal response in dealing with it? Take a look at who sits on the top tables of Governments, corporations and pharmaceutical companies and it all becomes clear. 2018 is the 70^th birthday of the NHS and the politicisation of healthcare becomes as clear as day.

Jeremy: So Dan, what will ACT UP London be doing to celebrate the release of ‘120 Beats per Minute’?

Dan: We will be hosting a series of special screenings in soon-to-be-announced exciting places with an array of inspiring panels. We will be strengthening, educating, empowering and loving our community to confront the root causes of the privatisation of the NHS through a series of creative art-interventions and civil disobedience actions.

Bell Hooks says ‘loving friendships provide us with a space to experience the joy of community…to cope with differences and conflict while staying connected.’ ACT UP has a lot to contribute to this through building a loving community for activism whilst helping to heal the trauma experienced by those living and affected by HIV+.

Jeremy: In 2016 you took part in the first ‘Truth to Power Café’ at Soho Theatre.  What does speaking truth to power mean to you now?

Dan: Thirty years ago ACT UP changed the course of history in challenging pharmaceutical greed and government inaction to get medication for all, so ACT UP London is in a great position to campaign against the sell-off of the NHS. In Britain it’s happening at a much faster rate than most people realise. Living with HIV+, I am amazed by the difference between the public and the private face of HIV; between what the public is told and what we know to be true. Soon we could be paying thousands of pounds a year for treatment, so to be a force for change, we must understand the economic system which prioritises peoples’ survival. Privatising health care makes the economy unstable as without comprehensive and holistic support for those affected by HIV, the lifelong costs will be a drain as subsequent illnesses rear their head. Binge drinking, drug abuse, depression, suicide, relentless nihilistic hedonism and other manifestations of a severe lack of self-love, are all interwoven in living with the precarious nature of terminally-declining conditions.

In this wave of renewed HIV / AIDS activism, the reciprocal relationships between compassionate doctors and activists on the ground, will prove vital. Doctors, nurses and many others witnessing the destruction of the NHS, are coming to our meetings eager to fight for what they believe in. It provides us with the opportunity to paint a picture of what life looks like from the point of view of the dominated not the dominator – to speak truth to power!

Dan Glass is an HIV activist, writer and member of ACT UP London.  He also runs Queer Tours of London – A Mince Through Time who this year are commemorating the 30^th Anniversary of ‘Section 28’ which banned the promotion of homosexuality in education at a time when HIV / AIDS was at plague proportions.  Their upcoming events include a ‘Bang Bus special for International Women's Day’ on 10^th March; and on 8^th April ‘George Michael Wants You!’ celebrating the 20^th anniversary of ‘Outside’.

Jeremy Goldstein is a writer and creative producer whose new show ‘Truth to Power Cafe’ is about to make its international premiere at Festival 2018, the Gold Coast 2018 Commonwealth Games arts and culture programme in Australia. Read more about it here.

‘120 Beats per Minute’ is on general release from April.