ACT UP brought the focus back to the urgency for human lives

[]

Setting the scene

I was all emotional when I left the cinema on Monday having gone to watch a film titled 120 BPM (Beats per Minute) [French with English subtitles] that was brought to my notice by my friend.

It was a historical perspective of ACT UP Paris in the early 1990s created along the lines of the direct-action advocacy group ACT UP in the United States.

To the many of us who live with HIV or have had the amazing turn-around from full-blown AIDS, we owe the greatest depth of gratitude to the people who initiated the ideas behind starting the AIDS Coalition to Unleash Power (ACT UP) and how they carried through their advocacy until governments and Big-Pharma were responsive to the plight of all afflicted by the scourge.

At the expense of the dying

From the early discovery of that disease that began to cut a swathe through first the homosexual community, then drug users and unto haemophiliacs, the governments of Ronald Reagan, Margaret Thatcher and Francois Mitterand simply ignored the fact that people were suffering and dying from this new disease.

We saw pictures of emaciated bodies, scientists were involved in a race to understand the disease and especially in the United States mostly for personal glory and national one-upmanship rather than for those who stood to benefit the most from their research efforts. The people who were dying cut down in their prime out of institutional indifference and corporate inertia, there appeared to be no urgency towards the emergency.

I could not have felt a better sense of justice when The Nobel Prize in Physiology or Medicine 2008 honoured the French side of the research efforts and spurned the American side of the battle. Some of the people were playing with lives that were precariously at the precipice of total annihilation through AIDS.

Dragging their feet as people died

It was in the light of this discovery and understanding of the virus that pharmaceutical companies began to work on new drugs but were holding back research results and preventing the early adoption of experimental drugs that could possibly immediately health outcomes for people who already had HIV.

This is where ACT UP’s advocacy forced the question, pushed the debate and ultimately compelled governments and institutions to not only recognise the health emergency but get engaged in eradicating AIDS.

A primer on direct action advocacy

The film centred around the debating forum of ACT UP Paris with their Chatham House type of rules of engagement, the strategies for making the headlines, the resistance they faced from the authorities and pharmaceutical companies before they could no more be ignored and the real issue itself, for all the protests and advocacy, it was essentially about real human-beings, their private fears, their public rage, the loves of their lives and the loss of many who succumbed to AIDS.

More poignantly, ACT UP in its concept and activity was a model of activism that had people normally marginalised, usually persecuted, and generally ostracised decide they had had enough of being isolated and ignored by society, maybe even criminalised by the establishment to identify with a cause for which they had nothing to lose because many in their community including themselves were dying.

It was a movement of existential urgency and by that, it brought attention, engagement and radical change to the way HIV and AIDS was tackled and managed. There is no doubt that advocacy groups like ACT UP are needed today to fight for rights and freedoms that the comfortable and unafflicted enjoy. It is to those who found the courage to upset the status quo that I dedicate this, for without you, we would not be here.

If it is the only film you watch this season, it would have been worthwhile. 120 BPM (Beats per Minute) [98% on Rotten Tomatoes]