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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

Defend disabled people's right to independent living

The Government's plans to do away with the Independent Living Fund (ILF) on 30th June are going to have an immense impact on many individuals Dao works with either directly or indirectly.

The ILF helps over 18,000 disabled people with high support needs to live independent lives in the community rather than in residential care. The fund was introduced in 1988 as the Conservative party at that time realised that supporting disabled people with personal care needs to live independent lives, in their own homes, was cheaper by far than residential care.

After June 2016 there will be no additional funding for already cash-strapped local authorities to meet their legal obligations. The LA’s budgets have already been cut by £991 million in 2011, £890 million in 2012, and they are being cut by a further 28% in 2013-15. 

There is no overall scheme to ensure the safety of the people who depend on the ILF. The overall sense of what will happen is that LA’s will not be able to supply the budgets needed for disabled people to continue to have the same levels of PA support. Individuals will be left to fight for their support needs to be recognised. 

The policy to scrap the ILF is not designed to save money. The implication is that most group 1 users will no longer be eligible for any funding due to tightening of local authority eligibility criteria. The average cost of the ILF is just £345 a week compared to the average cost of residential care being £738 a week. 

This is a direct attack on disabled people designed to divide, weaken and  destroy the spirit of an already fragmented community. More than 18,000 disabled people will lose an essential lifeline, devastating their quality of life. 

Please write to your local MP, and sign the 38 Degree Petition 

Posted by Colin Hambrook, 3 June 2015

Last modified by Colin Hambrook, 26 April 2016

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

Congratulations to Mat Fraser for the recent award given to Cabinet Of Curiosities: but isn’t Disability being firmly put back in a box?

It was good to hear that Mat Fraser has won the Arts and Culture Award category in the Observer Ethical Awards 2014 for his show Cabinet of Curiosities: How Disability was kept in a Box.

I interviewed Mat before the show went on tour and was wowed by his performance in the Science Museum earlier this year. For me it was akin to the kinds of cabaret performance we, in the disability arts movement, were lucky to see Mat do 20 years ago: Mat, angry, proud, projecting a cynical humour advocating for disabled peoples’ rights by giving exposure to the Social, Medical and Charity Models of Disability.

Always anarchic, linking karate-kicking raps with observations of how 'disability' is a personal and social role, which simultaneously invalidates people with impairments and validates those identified as 'normal'.

So it surprised me to read in the Guardian’s coverage of the award by Rhik Samadder that the journalist interprets the show, by saying “One of the show's aims is to normalise disability.”

Disability will never be ‘normalised’. Paul Darke, argued back in the late 1990s in his Now I know Why Disability Art is Drowning in the River Lethe paper, that the inclusion agenda was always in danger of sanitising disability to the extent that endangered disabled peoples’ rights.

The assertion of the potential normality of disabled people to fit in - went against the principles of Disability Arts precisely because it sought to ally with the cultural agendas of the arts establishment, rather than the values of the disabled peoples’ movement.

And it looks like Paul’s warning is coming to pass as the current dismantling of the welfare state continues to threaten disabled peoples’ lives. With precious little comment from the media, measures which, under the pretext of saving taxpayers money (but which with a  terrible irony are costing more than the sums allegedly saved) are leaving more and more disabled people in a desperate state of poverty.

The latest epistle under the reign of the current unelected government, is to do away with the Independent Living Fund - a fund set up because it was realised from an economic viewpoint that it was more cost-effective to give disabled people direct support in their own homes - as opposed to locking people away in institutions. So we are going to see disabled peoples’ support needs taken away and replaced once again with high cost institutions allowing little, if any, quality of life.

I wonder if the subtext of Mat’s show should be How Disability is being pushed back in a Box. In his show Mat compares Nazi propaganda images and asks how easily those images can be applied to the strategies of Atos and the DCMS, working specifically to disenfranchise disabled people.

The ILF helps over 18,000 severely disabled people to live independent lives in the community rather than in residential care.

The government announced on 6 March 2014 that it will close the ILF in June 2015.This is the second attempt by the government as last time the Court of Appeal found that the government had breached the equality duties.

The government now claims to have got around the court findings and says it will devolve the money to Local Authorities for 12 months with no ring-fencing.

After June 2016 there will be no additional funding for already cash-strapped local authorities to meet their legal obligations.

Please, help us in the campaign to stop the government's latest attack on disabled people.

Four easy steps to campaign:
1.    Email your MP now to help save the ILF and encourage all your friends and family to do the same
2.    Sign the ILF petition to government
3.    Tweet #savetheILF and Facebook the link to the e-action - www.pcs.org.uk/savetheILF - so others can join the campaign

Posted by Colin Hambrook, 16 June 2014

Last modified by Colin Hambrook, 26 June 2014