Friday, June 28, 2013

...our existential choice

A North West Arts and Health Networking event is happening as part of Culture Shots 13, on Wednesday 3rd July, starting at 6:00pm and ending at 8:30pm at The Manchester Eye Hospital Atrium. FREE Using my recent paper as a starting point - A Bird in a Gilded Cage - I am going to frame an evening of work around innovative approaches to healthy ageing and dementia through two presentations and conversations with Claire Ford who has developed work around iPad's and Sarah Lawton who has been working in India on a craft's project with older people. There'll be lots of opportunities for you to share your work too. Informal and relaxed as ever.

On the 5th July, Dr Iona Heath, author of Matters of Life and Death and recent President of the Royal College of General Practitioners opens MORALITY and gives a free public lecture: Memento Mori. On the 8th July, Consultant Oncologist and founder of Medicine Unboxed Dr Sam Guglani; Palliative Care Manager and author Molly Carlile and singer songwriter Victoria Hume all contribute to a range of exhibition themed free events. Details by clicking on the flyer.

This week I attended the Culture, Health & Wellbeing international conference in Bristol and had some amazing conversation with people I had never met before. Thank you to all of you who made the effort to talk with me. Before I forget, I think Alex Coulter of the South West Arts and Health Network and all her team deserve acknowledgement for their co-ordination, planning and seamless delivery! This was the first international conference of its kind in the UK since the one held at MMU in 1999, and it did the UK proud.

As chair of the National Alliance for Arts, Health and Wellbeing it was fantastic to make contacts old and new from Wales Scotland and Northern Ireland and I hope that we can forge even greater links for partnerships with you all (...and of course, those of you from further-flung places).

Chief Executive of the Royal Society for Public Health, (RSPH) Professor Richard Parish opened proceedings and chaired the first day in his own compelling and inimitable way - charming, erudite and astute. John Wyn Owen was the first key note and he invited us, (via his RSPH account of arts/health over the last 15 years), to reflect on the recommendations of the Francis Report encouraging us to adapt and subvert its call for a ‘cultural barometer’, playfully suggesting that we interpret this by freely focusing less on its intended health-culture change and more on reimagining what a caring modern NHS might aspire to be. This was followed by a panel discussion on inequalities and how the arts might impact, or be of relevance. If I’d have had more time here, I’d have shared the work of Kate Pickett and Danny Dorling, which questions some of the points raised in the Marmot review, but time didn’t allow this, so click on the photo of shoe-shining below to read Against the organisation of misery? The Marmot Review of health inequalities.

When a passionate, and well-intentioned voice of one of the delegates stated with seeming authority that Randomised Controlled Trials (RCT) were the only way to influence national policy, I had to stifle a cry of frustration, not least, as I didn’t have opportunity to respond, (and this was a debate on inequalities, not pathology and morbidity). Is this perspective based on the pharmaceutical industries oh-so-honest publication of the ‘positive’ outcomes of its trials and its historical neglect to publish negative data. Or perhaps, in a world where dissatisfaction has been reconstituted as illness and big pharma now has to find ‘virgin’ control groups for RCT’s and is moving into Africa to conduct its objective studies on an as yet, unpolluted public for their tests?

National policy only influenced by hard objective data? What about our governments regular u-turns, based less on hard evidence and more on ‘middle England’s' public opinion and media backlash. Let’s not kid ourselves, we live in a climate of policy based evidence and not evidence based policy and one that is mediated by the vested interests of big business and the media.

I actually believe that there’s a small place for the RCT in the arts/health agenda, but specifically in the health/morbidity arena and less in that of wellbeing. Some of the attempts to understand the impact on physiological outcomes, perception of pain and mental ill health are really interesting and could produce significant results, but for this conversation - about inequalities - it seemed a desperate attempt to yet again, reduce the way we understand impact of the arts to a scientific model, denying the rich data that mixed methodological approaches offer.

In this session, I wanted to discuss inequalities and I’d hoped to ‘tell a story’ of my recent time in Taksim Square to illustrate the potential of the arts to give voice, but alas and alack, no window of opportunity was offered. More of that in a moment.

Of course, the icing on the cake at this conference, was the contribution of Lord Howarth of Newport. Alan Howarth really did us proud and gave an address that not only set us a challenge or two, but that was considered, intelligent and spoken from the heart. The paper is available in full by clicking here, and of course, there’s my awful little video just above. Some of the key points he made (for me at least) are here for your delectation.

“What the Alliance and its international partners are engaged with is of the most profound importance. We are at a moment when western societies face an existential choice. Your mission to mobilise the arts in the service of health and wellbeing symbolises and illuminates that choice. Are we, in our society and in our public services, to embrace the values of creativity, humanity, empathy and reciprocity? Or are we to continue with the barrenness of materialism, competitive self-seeking, anomie and bureaucratic crassness?

The malaise so extensive in our health and social care systems is born of a political culture, in the UK and US at any rate, which has destroyed social capital and devalued the public realm. Monetary and competitive values have been implanted in our public services. Most extremely in the USA, but also insidiously in the UK, healthcare is commercialised; powerful business interests, subsidised by governments, influence health policy; suffering is commodified and exploited for profit; and the poor are excluded or made to put up with inferior service. 

The view of human nature taken by so-called classical economics, the economics of the free market, that people are all self-seeking utility maximisers, is false and degrading. After forty years of that intellectual hegemony we have brought into being societies, and indeed a world, riven by inequalities, as seen in health and morbidity statistics. {…} the time has come for leaders of research to form up and present a manifesto in which they set out where they’ve got to and say these are our methods, they are robust and productive, they demonstrate clear and substantial value of work in arts, health and wellbeing, and those in a position to fund work in the field have no excuse for not doing so.”

The National Alliance for Arts, Health and Wellbeing is indeed working with the partnership that makes up the UK Arts and Health Research Network to do just this, but developing that rich contextual framework, or Cultural Barometer, that isn’t skewed to simplistic reductionism and that allows rich narrative to sit alongside more quantitative methods will only work if its not driven by narrow interpretations of arts/health and that isn’t driven by commercial gain or organisational ego. Critically, this work needs to be developed through receptive consultation and not reductionist dogma.

Let’s not loose sight of what it is that this arts and health agenda is predominantly about - creativity, culture, the arts and humanities - on one hand, how we humanise health provision and on the other, human wellbeing and social justice.

I had a slight frustration on the international panel, that I didn’t get the opportunity to counter what felt like a bias towards clinical environments and addressing disease, (evidenced by an aspiration to develop a Cochrane-like library...dear God, no). I felt the vast majority of the delegates (at least those I’d spoken with) were more interested in tackling inequalities, and who saw health and wellbeing as something to be addressed in the wider world - not just in health settings!

What I’d have liked to have said, but didn’t have the opportunity or time -  particularly around the deeply important issue of giving services users a voice - links into my earlier disability to fully contribute to the inequalities debate. So, here is a thought on this important question.

The crux for me, is key message number 9 in the Marmot Report:

‘Effective local delivery requires effective participatory decision-making at local level. This can only happen by empowering individuals and local communities.’

This is critical if we are to address inequalities, and I argue regularly, that what good arts interventions and processes offer, is the opportunity to ‘have a voice,’  may I shout this? HAVE A VOICE. This is what the MANIFESTO was and is all about.

Think about those people in the Francis Report...the voiceless, marginalised, neglected and abused. OK. Now think about that Big Issue seller, whose eyes you don’t meet. Or that scary character shouting inappropriately in the street. The list is endless (I’m afraid). The marginalised and poor are not only unequal, but they are hated by many. OK that sounds a little strong, but I don’t mean feared, I actually mean reviled and yes in our grotesquely unequal society: hated. Picket and Dorling again illustrate that any attempts of ‘poor’ people to engage with the Marmot Review only opens them to the vitriol of the knee-jerk, sensation-hungry media, best typified by the Daily Mail’s mediated comments pages. Here are some examples of hatred:

“Perhaps Prof. Sir Michael might revise his recommendations from hard working taxpayers being bled even more to pay for feckless wastrels, to relocating ‘poor’ people to remote mountainous regions and subsistence occupations? - Penny, London, 14/2/2010 19:34


“Why are the poor replying to my thread? GET A JOB and stop scrounging. Who is paying for your Internet? I’d sterilise the lot of you! - Anthony, Esher, Surrey, 11/2/2010 12:56

So the question of how we get users voices heard, is a good one (and one I apologise for not being given the opportunity to respond too at the conference), but it’s a premature question. We need to step back even further and ask, if we’re able to allow marginalised voices to be heard, how do we get them to be listened too and taken seriously - and just how the hell do we deal with a media that thrives on vitriol and which mediates wider public debate? Marmot tells us we need to empower people, but when they speak, they are demeaned. Ultimately silenced.

Pickett and Dorling again suggest, that what we need is, “the political courage to deal with the root causes of those social determinants. Why people smoke, rather than trying to get them to stop. Why people eat too much, commit violence, trust each other less, invest more money in their children’s education, rather than trying to understand the social inequalities that stand in their way.”

So, what relevance does all this have to my few days in and around Taksim Square? What relevance eh? Well, I don’t mind admitting, I have a jaundiced view of young men in oh-so-distant countries, shouting, rioting, covering their faces and throwing stones at ‘peace-keepers’ in the name of some higher-power. But wait on - I’ve already established that my poor old distorted opinions are mediated by the TV news. It has to be true - its on the BBC!

So, finding myself in Turkey at the height of the ‘riots’, I decided to follow those intriguing sounds I could hear, into the warm night of the city. For one thing, it was easy to find where it was all ‘kicking off’, you could just follow the families - the excited children and their grandparents up the high-street. True, all the cash machines had been spray painted with anarchist logos, but people were still using them and true, the crowds were singing and chanting, but it didn’t feel in the slightest bit daunting, in fact far more family-friendly than any football match crowds I’ve walked with.

And the crowds were seriously big - the largest I’ve ever been in - all laughing, talking, singing. People selling cans of spray paint and V-for Vendetta masks and variants of the Turkish flag had popped up everywhere. It took me about an hour to walk a five minute journey...and then I was there. Taksim Square. And there were vehicles piled up and burnt out, barricades on all streets leading into the square. But here’s the thing. My first thoughts were of Glastonbury - only without the commercialism. People camping everywhere. Kids having graffiti lessons. There are singing groups everywhere. And men, those terrible feral beasts that plague our news bulletins, are linking arms and dancing, SO heartily dancing. This goes on through the night. In the day time, there are stall-holders sharing political manifestos. Variants on socialism I’ve never heard of, but all good spirited and eager to talk about the current situation. I can’t get over all the spontaneous arts sessions happening. There’s one with children decorating a tree with all their aspirations - and the food - oh the food, everywhere you turn something is on offer. Then there’s Taksim Square Book Club, which encourages reading as a silent protest.

Then the police come. BOOM. A small moment of resistance, quickly subsumed and dissenting voices are quashed. Decent, articulate and motivated people, creative and passionate.

I’m constantly taken back to the anti-war demonstrations across the world that saw an estimated 30 million people in 600 different cities across the world, take to the streets on February 15th 2003 and demonstrate against the war in Iraq. What was the impact of such a groundswell of civic voice? Our governments chose to ignore public opinion, because of overwhelming evidence of weapons of mass destruction. You know the rest of the story.

Marmot genuinely wants to hear the voice of marginalised people and the arts in part, enable this story to be told. But if those in power don’t like your contribution, they stop you, or else allow the media dogs on you.

Art and artists tell powerful stories. Participatory and social engaged artists enable others to tell theirs and potentially, change society.

What I’d like to see over the next five years is connected to this, in that I believe we’ve been fixated with describing arts/health in terms of science and medicine, and whilst Evidence Based Design has evolved elegantly from Evidence Based Medicine, I’d like to see 21st century healthcare embrace ‘service users’ voices whoever they might be and influence more enlightened health practitioners towards Experience Based Medicine. This of course, requires our practice to encompass education more systemically, and not only the education of our health and cultural partners, but the personal, social and health education of our children.

The thought of the arts being reduced to a ‘mainstreamed’ intervention, tried, tested and force-fed the passive sick, like great ailing geese, only to provide researchers with a bucket of precious foie gras for their own satiation - repulses me. The argument too, that an arts intervention needs testing just like pharmaceuticals need testing, is a little spurious. Oh that it were so simple - medication after all, may work wonders for one person, but have little effect on another's individual symptoms, or worse, have terrible effects.

I love the connections between art and science. I’m inspired by science and exquisite engineering and those people who are pursuing a notion, or a hunch based on their investigations and the available evidence. They’re pursuing a hypothesis. Testing, experimenting and refining. Wonderful. But the arts too, have the richest of languages, and it's my hunch that its through our cultural inventiveness, our curiosity and our inherently provocative nature that the way we understand our diverse practice and its impacts, will best be understood by and through the arts.

This is my hypothesis, prove me wrong.

...and finally. The wonderful conference exposed me to some quite profound work - far too much to share. Here is one piece however, that touched me so, so deeply and gives voice to people with dementia. I Will Get Up and Go Now, is a film by Andrew de Freitas commissioned by the Sensory Trust, with Mo Codd in conversation with the poet Karen Heyes. You don’t need any words from me. This is for you.