“That right there, is what I call inspiring…” – ACT UP London is Born!

Thank you to activist and top choreographer from the ACT UP tribute show ‘Shafted?!’ Clare Roderick who wrote the following reflection blog following our first meeting ……

“I attended the first meeting of 2014 for ACT UP London on Monday 13th January, 2014 at the Unitarian Church, Newington Green, arguably one of the most historically significant meeting places of social dissenters to be found in the city. The building, in which Mary Wollstonecraft cut her teeth as the Godmother of early British feminism, was the ideal backdrop to a meeting of minds of those seeking justice to a continuing problem that is not going away, no matter how much we as a nation like to ignore it.

Those attending the meeting were a rich mix of people from a wide range of backgrounds. I was encouraged by seeing senior clinicians, researchers, and student campaigners joining with hardened activists, theatre-makers, and full-time charity workers to discuss the growing need for grass roots-style activism at a nationally visible scale. We were joined by a number of individuals from groups such as Stop Aids, Positively UK, Pink Panthers and PROUD. What united everyone in the room unanimously was a passion for justice, and clear empathy for those in need of support, whether affected by HIV or indeed otherwise.

It was certainly refreshing to be in a room with a completely open, non-judgemental atmosphere in which a gathering of people could discuss the normally seat-shiftingly uncomfortable topic of HIV without a whisper of prejudice. There was a tacit understanding between those who were infected and those who weren’t that there was no real distinction between them. All voices were heard equally and with respect.

As the group settled down with cups of tea, huddling to keep warm in the winter chill, what ensued was a thoroughly engaged dialogue about the various problems facing those living with HIV in the current social climate. Touching upon the taboo of HIV/AIDS as an accepted part of the everyday reality for HIV positive people was, from what I was hearing, in some ways a slightly less important issue for the moment than the need to challenge the cuts to NHS services, which threaten to affect the lives and plights of people all over the UK. Unsurprisingly, the issue of public health reared its head consistently throughout the meeting, as all seemed in agreement that a health system that fails to treat people from a holistic viewpoint is unlikely to support those who need it.

The topic of medication brought with it a gentle reminder that pills cannot be relied upon solely as solutions to complex health problems, nor should HIV services amount to little other than “pill-dispensaries”. Complacency among service providers and the sub-contracting of ATOS, the company effectively charged with the responsibility of deciding who is ill enough to receive benefits in the UK (a decision made by clinicians normally unqualified in the particular area of healthcare needed by claimants) mean the risk of a welfare system combined with a healthcare service both united in looking for reasons not to support vulnerable individuals was identified as a toxic situation for the nation’s HIV affected population. The possibility of cuts to public expenditure leading to situations where clinical decisions came down to moralistic judgements was seen as a dangerous trend that should be avoided by all means.

Our discussion delved deeper, looking at public education or rather lack of it. What does the risk of catching HIV mean to young people these days? Who could care less when they are off their heads and all they really know about HIV is it’s a manageable condition nowadays, so party on right? What does the general public understand of the reality of living with HIV anyway? And where HIV can be seen as a manageable condition, how can people be shown that it is “a condition that you really don’t want to get” (as one attendee put it)?

As the meeting drew nearer to its end those present were asked what can be done. It was one thing to identify problems but forming a campaign strategy was another altogether different process. In a go-round of the group many answers came out. The never-ending quest to challenge taboos and end stigma was a clear goal from the start, along with public education, protecting the NHS in a way that can also improve it, the financial logic of preventing further transmissions vs. the cost of a lifetime of medical treatment. The need for real and noticeable civil disobedience brought with it a new and essential conversation about the aims and risks of such action (for which there was not nearly enough time left over so this was parked for the next meeting). There was no question that the only way to victory can be through well-informed, considered and carefully planned activism. Everybody seemed to agree that when it came to the discussion of taking direct action, finding issues that might resonate with those unaffected by HIV but who might otherwise sympathise with a shared grievance over healthcare reform seemed a sensible approach.

It is true that ACTUP London is today working with different criteria from their Californian forerunners. The fight in the UK now is less about preserving lives as much as preserving quality of life. Yet the original intent to uphold and cherish the sanctity of life is still there. Those who remembered the original ACTUP movement, the electric atmosphere and the power of the fight for survival, seemed quietly intrigued by the notion that ACTUP may yet again bring about change by way of a new generation of activists drawing a fresh battle ground. How we go about that from here is entirely our choice; from teach-ins, awareness workshops, activist bootcamps, theatrical performances, and good old-fashioned banners (sometimes the old ways are the best) there is no end to the creativity and shared imagination when people put their heads together and unite in the struggle for justice.

One person’s reply to the question of solutions particularly resonated with me. When the possibility that we, as a generation, “may take responsibility for our own behaviours” was offered as a practical strategy for overcoming obstacles, I felt that familiar little shiver down my spine. The suggestion that we, in this lifetime, might just possibly reverse the relentless poisoning of ourselves and our planet by taking back our own lives from the corporations and governments that rule them, and rule nobody but ourselves – that right there, is what I call inspiring.”


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