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Who draws the line on what is or isn’t a useful life?

The journalist Matthew Parris has a bit of a thing about ‘usefulness’ as an important human trait. When interviewed by disability activist and wheelchair user Baroness Jane Campbell on BBC Radio 4’s first Today programme of 2016, he branded her as “a clearly useful person” because of her place in the House of Lords.

Parris makes his politics clear. His recent article in the Spectator was headed: ‘Some day soon we’ll all accept that useless lives should be ended’ meaning, of course, the lives of disabled people: not ‘good’ disabled people like Baroness Campbell who contribute by virtue of being part of the Establishment, but ‘bad’ disabled people who are deemed by the media circus to ‘cost money’.

According to Parris, legislation supporting assisted suicide is of no consequence: “the Darwinian struggle for survival” means that “tribes that handicap themselves will not prosper.” His argument is that the acceptance of assisted suicide will come in only a matter of time. He believes that we will learn to elect to end our lives, because history has taught us “that suicide can be a fine and noble thing”.

But did Darwin believe that ‘natural selection’ was dependent on life being able to compete as is understood by the ideology invested in the term ‘survival of the fittest’?

Dr Ju Gosling takes a critical look at Darwin’s theories and their impact on society in her book ‘Abnormal: How Britain Became Body Dysphoric and the key to a cure’. She concludes that a generally accepted misunderstanding of Darwin’s ideas, “appropriated by economists and politicians to give scientific credibility to the field of eugenics”, is responsible for “the biggest impact of all on the way in which we view our bodies today.” P.25

Gosling goes on to explain that by ‘fitness to survive’ Darwin meant the flexibility within species to be able to adapt to their environment. By ‘natural selection’ he meant for example, that “a species that had a thick coat during an ice age was likely to develop a thinner coat during a period when the earth was hotter, or it would become extinct…”

“All of this natural selection depended on there being as wide a range of attributes to choose from as possible, underlining the importance of continuing diversity within a species.” P.26

Living in harmony with other members the species and being physically suited to an environment are critical qualities on the journey towards adaptation. Darwin had little truck with theories of ‘biological determinism’ that were attached to his scientific research, often used to support the beliefs of eugenicists that “humans could be ‘improved’ by allowing only the strongest, sanest, fittest and brightest people to reproduce.” P.27

Going back to Parris’s article, his concept of “the Darwinian struggle for survival” is deeply flawed and far too simplistic to bear relation to what Darwin wrote and believed.

The notion of what and who is ‘useful’ is very subjective and a dangerous imperative. As Quentin Crisp said: “everyone knows the uses of the useful; but no-ones knows the uses of the useless.”

I’m sure that Baroness Campbell sees her ‘usefulness’ to society in very different terms to Parris. On the Today programme she said: “The world is still a barrier to disabled people, but there is an even bigger battle about perception; people thinking of disabled people in terms of the welfare system. You’re either a benefit scrounger or an Olympian.”

Over the last 15 years, society’s attitudes have shifted ever further towards equating the value of human life with monetary worth. Poverty has often been regarded at different periods in history as a sin. During Darwin’s time eugenicists regarded poverty as a crime, rather than a consequence of circumstance.

When, for example as reported recently in The Independent, the Department of Work and Pensions is able to get away with spending more taxpayers’ money on punitive fit-to-work assessments designed to punish disabled people than the programme is actually set to save, then we can see that vested interests are shoring up an insistence that impairment is to be feared and eradicated. It also becomes clear that the argument of economic necessity actually bears little relation to the facts.

Baroness Campbell dedicated a fair bit of the Today programme she edited in reviewing the changes in attitudes 20 years on from the Disability Discrimination Act. “The predominant attitude [then] was pity; that’s still there, but at the time we were not visible in society; not on the streets, not in jobs, not in schools. That’s changed, but we’ve a long, long way to go.”

And there lies the rub. Institutions have closed down and we are more visible, but the reality is that society is scared of what disabled people represent.

I’m not usually a fan of crime drama, but last week BBC One’s ‘Silent Witness’ proved an insightful and entertaining watch. It carried a storyline exemplifying ways in which it is now understood that that fear could manifest.

The first two episodes of the new series followed the investigation of two murders made to look like suicide by the perpetrator. On establishing that both individuals had terminal illnesses, forensic examiner Clarissa Mullery (played by the fabulous Liz Carr - read our recent interview with her here) questions whether the killer saw the murders as “acts of mercy”. The plot later revealed that the motive was revenge, but the storyline suggests the scriptwriters understood how attitudes towards disability have moved further towards ideas of eradication over cure.

Disability is understood in terms of deficit, and the value of disabled peoples’ lives is always going to be in question as long as the attitudes that underline those values persist. But where do you draw the line on who is and isn’t ‘of use’ to society? Who decides? In the current climate there is a dangerous idea that there is a simple equation for what is or isn’t a productive life – centred around monetary worth. And there is a narrow band of members in society whose say counts.

But are asset speculators useful to the continuation of the human race? Are the genes of reality television hosts essential to healthy cultural values? Many would (perhaps justifiably) see the bleating of the middle classes not as ‘culture’ and ‘art’, but as an essentially useless activity. Should we simply euthanise these ‘useless’ people and their pursuits? The idea seems preposterous. Unfortunately, to many like Parris, the idea is not so ridiculous when it comes to disabled peoples' lives.

Posted by Joe Turnbull, 14 January 2016

Last modified by Colin Hambrook, 15 January 2016

Katherine Araniello and Simon Raven do 'The Golden Gherkin'

Unveiled in the same week that the UK government scrapped the Independent Living Fund (ILF), a debate about the artistic merit of Damien Hirst’s 'Charity' (2003 - 2004) ignited on Dao’s FB group. 

A 22-foot painted bronze likeness of a Spastics Society (Scope) charity collection box from the 1960's-1970’s depicting a sad disabled child, the press lauded it as a statement about disability rights and exclusion. Why? Because in Hirst’s depiction, the giant charity box has been prized open with a crow bar and it's contents stolen. It's lazy art for lazy people lacking imagination or any understanding of disability representation.

As Mark Harrison commented on FB: “Art business & disability business - match made in heaven... both making money from crips.”

In response artists Katherine Araniello and Simon Raven decided to set up a fake artisan pickled gherkin stall, 'The Golden Gherkin', beside the 'Charity' sculpture installed next to 'The Gherkin' building in central London.

“Come and get your juicy, cheeky gherkin, all in the name of charity… spastic disabled gherkins made on Damien Hirst’s disabled farm…. Free. Dig down deep. £78… Hard to stomach.. Free gherkins.” 

You can see edited highlights below. The joke is clearly lost on most city workers who walk past in a hurry. To my mind the dark humour here sums up the cynicism of the city and the corporate art it supports.

Although apparently one man did donate a pound, so maybe all is not lost.

Posted by Colin Hambrook, 29 July 2015

Last modified by Colin Hambrook, 29 July 2015

To define or not to define: the dirty 'disability' word

A stimulating discussion unfolded on Dao’s FB group last week in response to the Shape Open Exhibition, which was launched at Shape’s Gallery in Westfield Shopping Centre, Stratford last week.

The call-out for Shape’s annual Open Exhibition was for the third year opened out to disabled and to non-disabled artists specifically asking for work on the theme of [in]visible.

The question posed was whether Shape should be supporting work by artists who didn’t necessarily see themselves as disabled people?

When I got into Disability Arts in the 1990s there was a massive energy from disabled artists making work that was based on real-life situations. I was attracted by the fact that disabled artists were making work that had a correlation with the reality of stuff that happens in everyday life.

In the 1990s there was a swell of activism by disabled artists. Indeed Shape’s CEO Tony Heaton was at the centre of an agit-prop Art protest that received massive media attention.  Shaken Not Stirred had a knock-on impact on ITVs telethon and indeed that particular charity fundraiser defining disabled people as poor, needy objects of pity, was abandonned.

In the 1990s there was a lot of action by disabled people against the charities that are supposed to represent us, who largely – then as now – are very adept at playing the ‘worthy cause’ card to fundraise, but actually do little in the way of providing the kinds of services we actually need or to even employ disabled people within their workforce.

The Social Model defined ‘disability’ as the problem society has with accommodating anyone different from the ‘norm’; and it was key to a collective politicised will for change. Then around the year 2000 the climate went through a dramatic transformation.

The Disability Arts Movement had been very effective in drawing disabled people to it and creating opportunities for disabled people to take part. Disability Arts had largely been about disabled people entertaining other disabled people. In the 1990s there had been a thriving scene of Disability Arts cabaret, which gave disabled performers an opportunity to talk about discrimination. The DDA came in and the Capital Lottery Fund (with massive insistence from people like Paddy Masefield) had disability access provision enshrined into planning as a rule for any public building looking for money for new build or refurbishment.

Disability Arts was largely seen as Community Arts and key funding bodies like the Arts Council who had supported Disability Arts changed tack towards what was termed ‘excellence’ in the arts. And disabled-led organisations that had been incredibly effective in supporting and empowering disabled people were suddenly put into the position of having to think of ways to ‘mainstream’ the disabled artists they worked with, in order to survive. There was a bid to get curators and producers from wider arts organisations to recognise the ‘quality’ of the work that they were supporting.

Paul Darke saw the writing on the wall back in the late 90s when he wrote a dissertation called Now I Know Why Disability Art Is Drowning in the River Lethe He realised that the political will for Disability Arts to follow the Social Model and to subvert the idea of being ‘normal’, was being overturned by the idea of inclusion: that disabled people could become part of the fabric of society with a move towards an enlightened dismantling of the physical and attitudinal barriers backed by access provision.

And so a message went out that the job was done and the majority of disabled-led arts forums fell by the wayside. Shape has survived by stealth. Tony Heaton, Shape’s CEO, inspired by Adam Reynolds, saw the potential for Disability Arts to rise out of the ghetto and to take a more ‘mainstream’ focus. 

Part of Shape's aims are about getting the work of disabled artists into mainstream galleries and through programmes like Unlimited, supporting a new wave of Disability Arts that is focused on the Art and which perhaps expresses disability politics in more subtle ways. [Or less subtle, perhaps if you consider the recent Adam Reynolds bursary winner Carmen Papalia using the services of a brass band to announce his access needs.]

But there is another strain of thought of behind the principles of the Shape Open. There has always been a real difficulty in promoting the understanding that ‘disability’ is constructed by society. A significant number of disabled people have always resisted defining themselves as disabled people because of the stigma that comes with that identity. My own father, who is ageing rapidly and has become severely impaired, won’t see himself as a disabled person, because he sees it as ‘giving in’. He can’t be persuaded to use a wheelchair, because although it would obviously give him more independence and quality of life, he sees using a wheelchair as immediately defining him as ‘dependent’, as ‘less’ or as ‘other’.

And so by making the Shape Open available to disabled and non-disabled artists, there is an attempt by Shape to allow entry for artists who might define as disabled people, but are uncomfortable with framing their Art within that definition. By asking artists to respond to what [in]visible means to them, there is an opportunity to attract work that expresses what ‘disability’ means within a broad parameters and so at least to get people thinking about it.

Whatever you think of the idea of society becoming more inclusive and the agenda for inclusivity, it is perhaps the sole idea that remains – and that only in a very piecemeal way from what was a thriving movement. Unless there is a new surge of energy to organise and make some noise that rattles the cage of the status quo, then disabled peoples rights will continue to rapidly diminish, as they have done in the last four years.

By Colin Hambrook

Posted by Colin Hambrook, 27 October 2014

Last modified by Colin Hambrook, 29 October 2014

Colin Hambrook on the 10,000 Cuts and Counting, memorial service and protest

I was asked by Occupy London to find disabled performers to take part in the memorial service and protest against ATOS and the Work Capability Assessment which took place on Saturday 28 September in Parliament Square.

And so my thanks go to Sophie Partridge, Penny Pepper, John Kelly and Dickie Lupton who took to the stage to join their voices with those of many other disabled activists, MPs, GPs, the War On Welfare (WOW) petition and the Dean of St Paul's, the Reverend David Ison, who was instrumental in the organising of '10,000 Cuts and Counting'.

The title of the service acknowledged the 10,600 people who died during or within six weeks of being put through the Atos Work Capability Assessment between January and November 2011. The figures relating to the numbers who have died since that date have not been released by the Department of work and Pensions. 

It seems that the climate of silence in the media surrounding the fact that disabled people with the highest level of support needs are being hit 19 times harder than the average person is something the government want to suppress. Why else would the ATOS boss Thierry Breton have been awarded a bonus of nearly £1million in 2012? 

Many people have said that the austerity cuts have taken us back to the situation we faced in the 1980s, fighting the struggle to organise and get our voices heard. In truth it feels like we have stepped back further in time into the climate of Victorian England when lives were cheaper than ditch water. 

Without the backing of the Church of England last Saturday's protest would have been deemed illegal. The Rev David Ison gave us the parable of Jesus' curing the blind, which was something many of us would have taken umbrage against, but his heart was in the right place, comparing the story of the plight of disabled people now to that of the struggles of disabled people in Palestine 2,000 years ago.

The efforts of those engaged in the event focussed around handing in a letter titled The Downing Street Demand to David Cameron. The letter supported by the British Medical Association and signed by the Reverend Ison calls for an end to work capability assessments.

10,000 Cuts and Counting also gave a platform to the WoW petition, which is seeking another 40,000 signatures to bring it up the 100,000 needed to bring a debate about WCA into the House of Commons.

Please urge everyone you can think of support WoWs demands and click on this link to sign the petition.

Posted by Colin Hambrook, 29 September 2013

Last modified by Colin Hambrook, 25 October 2013

Colin Hambrook asks where do we find Disability Arts and activism?

The Disability, Arts & Diversity Symposium: 'From the Personal to the Universal' at Salisbury Arts Centre last week, promised to be "an in depth look at Disability Arts and activism from the viewpoints of artists, producers, presenters and policy makers."

There are myriad implications for Disability Arts and its activist role in the wider social context, but to my mind the Symposium itself did little to address the issues. I wonder if somewhere along the way, the glory of Unlimited has gone to our heads? Many of those commissions address discrimination through talking about marginalisation, through telling personal stories and creating social engagement - through for example asking a wider public about their attitudes to the wheelchair - and all in all, like most art on public display, through entertainment.

But to my mind none of those works are actively challenging the status quo. All of the work comes from a middle-class elitist response to the barriers placed in front of disabled people. If it wasn't would it find a home in the Southbank Centre, or Salisbury Arts Centre?

In his address at the symposium Hassan Mahamdallie (Senior Strategy Officer, Arts Council England) talked about Standpoint Theory - based on the idea that those who are marginalised have more to give because we have to understand the centre as well as our own position in the scheme of things, whilst those at the centre don't have to understand anything beyond their own viewpoint.

We are seeing this now with the clash of class consciousness over the decision to spend £10 million on Thatcher's funeral - as if the whole country has a duty to mourn this one person. For those in the ruling classes there is no consideration of the worth of the millions whose lives were destroyed in one way or another through policies that directly demeaned and challenged our very existence.

Mahamdallie went on to talk about work that makes a virtue of being an outsider. Yes, I would say the work of Outside In, the work shown in the People Like You exhibition does that. But does it have an activist role? Who is art as activism for? We have the Disability Movement to thank for galvanising us to find artistic ways to protest through organisations like the London Disability Arts Forum in the 80s and 90s. The clarion call of disabled artists like Johnny Crescendo and Ian Stanton were a lynchpin for activism. Where and who do we have to turn to, now?

Liz Crow's 'Bedding In' to my mind, took an activist stance in giving a voice to those disabled people who are not seen and not heard. But where was the context in looking at how we develop approaches to giving a platform for the dispossessed? I would have cited the cartoons of Crippen or the visual poetry of Vince Laws in taking an agit-prop look at what's going on in the real world. I would have talked about the work of the Atos Stories Collective who are attempting to challenge the media and by writing plays about individuals experiences and getting the monologues out there.

Who would you cite?

Posted by Colin Hambrook, 15 April 2013

Last modified by Colin Hambrook, 16 April 2013