Whatever’s happened to true user activism, asks Daren Garratt.
‘I saw the best minds of my generation destroyed by madness, starving hysterical naked, dragging themselves through the negro streets at dawn looking for any angry fix.’ Howl, by Allen Ginsberg (1956)
What did we fight our battles for? What did we bury our loved ones for? Why did we galvanise, organise, demand our voices be both heard and acted upon and allow ourselves to believe we were actually changing anything? Why did we forge local, regional and national alliances, help bring waiting times down from 18 months to 18 days, advocate to move from 30ml ‘ceilings’ to optimal doses, or establish a culture of personal choice, clinical governance and equitable public health responses?
Why did we ever even bother wasting our anger, ’cos after ten years we’ve devolved into the pre-civilisation of user activism.
Now don’t get me wrong, I’m not writing this through a rose-tinted, halcyon haze. Of course we made mistakes. Of course we didn’t get it all right. Of course we were a divided, bitchy, back-stabbing, frustrating and oppositional bunch. It was a far from perfect movement that was riddled with faults and clashing egos, but at least we were united in a divergent cause.
As ‘newbies’ coming into the field we were inspired because we saw and heard the creativity and calculated risk-taking that UKHRA, the Methadone Alliance, Exchange Supplies, NDUDA, Mainliners, HIT and Lifeline were utilising to tackle inequalities, challenge the status quo, pioneer harm reduction initiatives and reduce drug-related deaths… and we picked up the torch, carried it on, shared in the successes, learned from the mistakes and suddenly we had Morph, NUN, the reconfigured Alliance, DDN and injectingadvice.com.
We were newly energised, had belief, dedication, support and, as activists, we had each other. We also had a (flawed but) functioning system of state-endorsed user engagement that encouraged and enabled locally commissioned flashes of brilliance to evolve, but because peer-led interventions were too reliant on the politics of location, personality and luck, it also proved unsustainable.
It was, I repeat, far from perfect but certainly inspiring and inspirational, and our conferences were our defining moments. They were our limited means to meet up, share ideas and best practice, hatch plots, put the world to rights, stick it to ‘the man’ and settle our personal wrongs… and they were effective.
I write this immediately after attending the 7th DDN conference, Make It Happen, and I just feel hollow, sad and… angry because I’m thinking about the sacrifices that were made in order to introduce equity, dignity, effectiveness, fairness and pride into the user activism movement, yet I saw no user activism present. The only movement was a sleight of hand; an illusion. It felt deceitful and fraudulent because this wasn’t our ‘user conference’ anymore. This was now a meeting of people who don’t take drugs anymore but insist on proudly and defiantly defining themselves, not by what they are but what they are not.
And because a large proportion of this demographic have clearly become so oppositional to active drug use and users, an ugly, pernicious streak has crept in. Now this isn’t a divisive sneer at ‘recovery’, because it is a viable lifestyle choice for some and deserves a celebratory platform. Neither is it a cheap, lazy criticism of DDN whose tireless commitment and organising is often unjustifiably maligned despite being only able to work with, and respond to, whatever local commissioners and market economies dictate.
No. This is a sad eulogy to a once vibrant movement that allowed the Make It Happen conference become the ‘Let It Happen’ one. The passion, spark, fight, resistance and anger has been replaced by a-whoopin’ and a-hollerin’, but in an area as emotive as drug use there is no ‘sense’ in ‘consensus’.
As John Lydon once said, ‘anger is an energy’, and energy propels, and propulsion is, literally, the way forward. But is there a way forward? Who are the next generation to break through and kick over the statues? Where’s the new breed? What will they howl? I can’t answer that, but I hope beyond hope that somebody out there can.
This article is dedicated to the memory and work of Alan Joyce. Ours is a fractured society in which the smallest of mercies are increasingly embraced with the greatest relief and I, for one, am relieved to know that at least the ‘Big Man’ didn’t live to see where our years of emotional struggle, direct personal action and targeted political activism have brought us.
Daren Garratt plays drums for The Fall.
Letters
The next issue of DDN will be out on 7 April — make sure you send letters and comments to claire@cjwellings.com by Wednesday 23 March to be included.
Show me the cure
I was very interested to read your report on the Creating Recovery conference (DDN, February, page 18), and welcome any initiative that looks to challenge stigma and celebrate recovery – especially one that comes with an announcement of new much-needed funding available to help community groups.
I was however incredulous at the reporting of the comments made by Benjamin Lloyd Stormont Mancroft, the 3rd Baron Mancroft. In your report you quote Lord Mancroft as saying: ‘The healthcare profession can’t cure addiction. Doctors do not understand addiction – it’s not in their radar.’ While the healthcare profession may not have all the answers to ‘cure’ addiction, I’m yet to encounter one type of treatment that can. A person’s recovery from addiction comes around from a combination of many factors, usually beginning with their desire for recovery, but aided and supported by a range of services including healthcare professionals. Doctors might not be perfect but are a group of well-trained individuals working with evidence-based treatment, who are often the first step on an individual’s recovery journey. To write them off in one sweeping statement is incredibly arrogant and ill informed.
Lord Mancroft went on to assert that the NHS was the ‘most dangerous dealer in the world, for prescription drugs’ and said that after ‘30 years of very close observation’ he had ‘never seen anyone benefit from substitute prescribing for any but a very short length of time’. His Lordship has previous for making sweeping statements that are not backed up by any evidence, and his comments on nurses a few years ago earned him criticism from all quarters including his own party leader who said he should ‘think more carefully before opening his mouth’. It seems he has not paid heed to this.
Baron Mancroft is as entitled to his views as any other service user and his inherited privileged position in society has given him a platform to make them, but it is important that they are not reported with the same weight as those of knowledgeable professionals. Unless, of course, he would like to provide the evidence to support them.
David Prentice, via email
Give us a clue
‘There are figures on both sides of recovery and human rights/harm reduction who share views and are looking for points of connection and trying to collaborate,’ says Mat Southwell in your interview (DDN, February, page 17).
This may be true, but the evidence in my area is very thin on the ground. Our attempts at a fully inclusive service user group have gone out of the window since our members became preoccupied over whether we’re a ‘user group’ a ‘service user group’ or a ‘recovery group’. Personally I don’t think it matters, but to many of our members the label has become more important than what we actually do. We’re in danger of degenerating into an unstructured mess and losing all our members.
So if there are ‘figures’ on any side who have advice on connecting and collaborating with those of us out there struggling to keep service user involvement alive, please give us some pointers!
Jane, by email
Have a star
‘What is the REC-CAP?’ ask the authors in their article, ‘How far have you come?’ (DDN, February, page 14). What indeed. So taking elements of established engagement, outcome and recovery measures can create a flexible online recovery mapping measure, can it?
Am I the only one to feel slightly depressed by the idea of a ‘clinical recovery tool’? We used to talk to our clients and make sure they had the right key worker. Now we are expected to process them and send them away with a great big recovery star – sorry, a ‘visual map of recovery wellbeing’.
Paul Ainsley, by email