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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

Disability Arts is dead! Long live Disability Arts...

In a recent Guardian blog theatre critic Lyn Gardner quotes the late Chinese Communist leader, Mao Zedong: “Works of art which lack artistic quality have no force, no matter how progressive they are politically.”

Gardner goes on to talk about ‘quality’ in relation to Disability Arts, specifically Learning Disability Arts and the Creative Minds conference, which took place in Bradford recently. Posted on the Dao FB group. It provoked a fair bit of response from a few Disability Arts old-timers, asking what Disability Arts? And what 'quality'?

Disability Arts as was died over a decade ago with little sign of a younger generation of disabled people picking up the mantle. For a time from the early noughties there was a concerted effort to improve inclusive education and to remove barriers to an arts education for disabled students.

But in the last five years there have been increasing barriers to arts education generally. According to the recent Warwick Commission report on the Future of Cultural Values, between 2003 and 2013 there was a 50% drop in GCSE entries for design and technology, 23% for drama and 25% for other craft-related subjects. 

We have seen investment in the Disability Arts sector slowly whittled away over the last 15 years. The report goes on to to say that disabled people are largely invisible within the arts both as creatives and as consumers: “Only 1.6 per cent of artistic staff, 2.8% of managers and 3.9% of Board Members within the 2012–15 National Portfolio Organisations and Major partner museums consider themselves disabled.

Not surprisingly the value of the idea of organisations and projects being disabled-led has all but disappeared. We’ve seen a rise in a few individual disabled arts practitioners finding a place within the mainstream, but largely Disability Arts as an expression of our experience of disability and what it means to live in a disabling society has disappeared.

Unlimited is one of the few remaining initiatives commissioning work of artistic quality whilst holding on to a vestige of the political intent that Disability Arts set as a challenge to the discriminatory values of non-disabled society. And it appears Unlimited within its limited capacity, is having some effect. 

For over a decade I’ve complained year on year of the lack of programming of disabled artists in Brighton Festival. But this year with Ali Smith as Guest Artistic Director, there is record amount of performing and visual arts being programmed - and no pro-assisted suicide theatre, which the Brighton Fringe has showcased, in recent years.

This year, Unlimited 2012 award-winner Claire Cunningham is bringing a new show to Brighton Festival. ’Give me a reason to live’ commemorates the lives of the disabled victims of the Nazis Aktion T4 program and of those who have died under the austerity measures of current UK government’s ‘welfare reform’.

One of the rising stars from Unlimited 2014, Jess Thom, is also taking her riotous show 'Backstage in Biscuitland' to the Brighton Dome’s Studio Theatre. StopGap Dance are appearing in the Without Walls programming and Outside In have also been invited to present a showcase as part of HOUSE.

The politically driven Disability Arts movement of the 80s and 90s was, thank goodness, significantly devoid of work with ‘artistic quality’, that is If you measure 'quality' by 'what's made it' within the judgement of the likes of the Guardian. How many Damien Hirst’s or Jake and Dino Chapman's creating acclaimed masturbatory artworks, do we need?

I got involved with Disability Arts because it was about art that was about real life, not dull concepts full of cynicism and devoid of imagination. The question is, where do we go next?

Posted by Colin Hambrook, 26 April 2015

Last modified by Colin Hambrook, 27 April 2015

Colin Hambrook reflects on the second Artists Debating Identity event at Shape

On Thursday 15 October Shape held their second informal conversation, led by Michèle Taylor - this time targeted at performing artists. Recognising the current lack of a platform for disabled and Deaf performers to come together to share ideas and talk about prevalent issues, Shape has created an ongoing event where 20 or so disabled and Deaf people can come together to talk openly and honestly.

Michèle set the tone by opening the debate with a showing of Liz Crows’ film about her iconic piece of performance on Anthony Gormley’s plinth, which was created to coincide with Resistance - a moving image installation, which is currently on tour. Liz Crow's performance has now reached the Guardian's Top Ten, which has been selected from the 2400 people who have each spent one hour on the empty plinth in Trafalgar Square.

Liz Crow’s performance was deliberately provocative. It consisted of her appearing dressed in a veil which was drawn aside to reveal her in nazi uniform. Significantly the performance took place on the 70th anniversary date of the Nazis Final Solution programme intended to end the existence of disabled people, amongst other minority and ethnic communities.

As well as drawing peoples' attention to a bit of overlooked history, it is truly about making people think about discrimination as it exists in the present day. In conversation, several people said that the atmosphere at Trafalgar Square on the night was electric.

The film gave an opportunity for people to discuss how there seems to be little space these days for people to talk about their experience of discrimination. These are not the kind of conversations that we are having as disabled people any more.

Disability arts became established through the cabaret circuit. It was a safe space for many disabled and Deaf performers to hone their craft in a space where they knew their audience would understand where the work was coming from. It was also a campaigning ground – especially for pushing access issues to the fore.

The fact is that we still live under a cosh as to whether or not we are ‘persons worthy of living'. The more ‘normal’ we can present ourselves as, the more likely we are of getting through the net of who is and who isn’t 'of value’.

I say this from a personal and emotional space. My mother was killed by a psychiatrist - one of the many Dr Shipman-types who inhabit psychiatry because of the lack of accountability that makes it possible for some psychiatrists to basically do what they want to you without fear of any comeback. As a ‘nutter’ you won’t make any sense anyway – so what does it matter if you complain?!

There is a notion that things are different now; that we have acceptance etc. But only six years ago when I tried talking to a GP about my mothers’ death. She told me that if my mother hadn’t died of the medication, "she would certainly have died of the schizophrenia.”

I come from a line of three generations labelled as schizophrenics. I am proud of being a human with a brain split into two halves. The challenge is understanding why people are so scared of a fancy medical word invented with a bit of Latin jiggery-pokery. ('schizo' means 'split' and 'phrenic' means 'of the brain')

The identity debate provided an opportunity to air some our stories. Julie McNamara talked about a Survivors’ poetry gig where she was told by a dignitary that she thought it "marvelous that mentally ill people are allowed out these days to do their own thing.”

The position now is that we don’t see ourselves as a Movement. We have lost cohesion and don’t consistently have the opportunities for conversations about the politics of disability that were part and parcel of the scene up to ten years ago.

Tony Heaton made the statement that we are struggling to get through a glass ceiling. Without critical debate we can’t move on as artists, writers and performers – yet there isn’t a coterie of professional disabled journalists who understand the issues who can write critically about the art and performance.

Mandy Colleran made the point that recently there has been a proliferation of research PhDs around disability performance, but they are all written by non-disabled academics, who cannot ever own the space, or truly understand the voice that the disabled performers’ experience is drawn from.

I think we struggle within the movement to fully grasp each others’ access issues. It can be hard enough to even own our own access issues, let alone moving into other impairment territories. There was a lot of discussion around how certain disability performing arts companies have made choices that have excluded impairment groups – another part of the division which has brought us to where we are.

The real dilemma that we face, is that we are stuck with the fact that people from outside the disability community will more often than not look at us and at our work from a medical model perspective. Liz Bentley talked about having to feel comfortable that what she delivers is going to be understood by her audiences. As a performer fairly new to the Disability Arts scene, it is only in recent years of doing disability gigs that she has developed disability material. Before going on she therefore has to make a decision about her audience and chooses what material to give them, based on a quick judgement.

The politics of disability arts has been diluted by our efforts to move into the ‘mainstream.’ Stephen Hodgkin made the point that we have been colonised by mainstream thinking. We find ourselves struggling with the fact that our voices and experiences are being owned by others with a medical model attitude.

I guess it comes down to motivation. What drives you to get up on a stage in the first place. I can’t attempt to summarise much more of the conversation here, so I’d like to leave it on an unequivocal statement from Katherine Araniello that for me summed up my feeling about why the hell keep banging on about disability arts in the first place. She said she is driven to make the work she makes because she hates the world - with all the stereotypes and tight-fit ways of representing difference as tragedy and loss.

Posted by Colin Hambrook, 16 October 2009

Last modified by Colin Hambrook, 8 December 2010

Colin Hambrook needs to learn to take it easy ...

I’ve been at sixes and sevens the last couple of weeks. You know how it is – sometimes impairment can get the better of things. I count myself lucky to be in a position where I can do work which affords me the comfort of allowing me to manage the daily slog of M.E. related restrictions.

I have just met with Gaelle Mellis – the dynamic artistic director of Restless Dance Company in Adelaide. We talked a lot about that thorny issue of identification. It is so understandable why disabled people don’t want to be saddled with a label – but the fact is that our fight to get equal participation in society won’t happen without facing what disability means to us – the ways that discrimination impacts on us in our daily lives.

At the fine edges of attitudes towards disability is the fact that there are so few role models of disabled people to counteract the argument that if we can’t be cured, our lives are not worth living. Debates around the assisted suicide bill have been raging on dao through the summer – thanks to the Julie Birchall of Disability Arts – otherwise known as Crippen.

In response I just wanted to publish a link to Clair Lewis’ moving and well argued blog against the rationale behind assisted suicide on Heresy Corner
Titled ‘My life is unbearable - don't fix it, just kill me’ Clair argues that we should be fighting for inclusion, independent living and assistance to live – rather than assistance to die.

Getting disabled people having fun on the streets of London is one way of countering the notion of ‘tragic lives’ that is the generally accepted view of impairment. I enjoyed this years’ Liberty Festival as much as ever – despite the fact there was no LDAF-run film tent. On the plus side the stages were much better set out to accommodate the lively mix of arts that is Liberty. It’s the one big open event in the disability arts calendar – when disabled people gather to catch up with old and new friends, and see some of the latest work coming out of the disability-related arts scene.

There is always an emphasis on the performing arts with several stages for music, dance and a tent for comedy, cabaret and spoken word. One of my highlights was seeing Sophie Woolley perform excerpts from When to Run

Described by Irvine Welsh as a "A stunning, electrifying show full of imagination and verve," the show comprises of four compelling monologues from a teenage athlete, a highly strung professional, a lifestyle guru and a dog walker. The writing is gripping, dark, with a fast paced hilarity, matching the intensity of the various characters running exploits.

Generally, Liberty presents a mixed audience of disabled and non-disabled people who are generally fairly subdued and difficult to play to. Aside from the smattering of disability arts regulars Liberty is largely giving exposure to a crowd who are experiencing the work for the first time. You can tell from the quizzical looks on peoples’ faces that they are finding their way into it. I think this is one of the festivals greatest strengths – even if it makes it hard for the performers.

The biggest crowd pleaser this year was Kuljit Bhamra who did a great job of getting the audience to take part, chanting Liberty and humming themes on the hundreds of plastic kazoos he handed out. He is a celebrated tabla player and composer who is lauded for having bought Bhangra to the UK. He was the perfect act to end the festival on, conveying warmth and passion.

This years’ festival seemed to showcase dance more than anything else – possibly because dance works well in an outdoor space. It all looked very sleek and professional. Blue Eyed Soul did a sterling job entertaining the crowds with a variety of aerial dance work throughout the day.  

One of my favourite acts was Penny Peppers’ spoken word spot in the cabaret tent. Call me old school, but I think there is more of a need than ever to name those disability elephants which hold us back from taking part. Penny’s spoken word stuff does just that, in a sexy, humorous and engaging style. I think if she could find a way over the hurdle of performing from the page – she’d find a way of making her act that much more dynamic.

Going back to my meeting with Gaelle. She is looking at ways of getting the fantastic Oska Bright Film Festival over to Australia. The Team of Learning Disabled Film-makers who head that project have done amazing things this past year and half. The Oska Bright Festival coming up in November is bound to be a highlight of the year.

Carousel, who are the learning disability arts organization who facilitate Oska Bright have just come up with another great initiative called ‘Shut Up and Listen!’ It is the culmination of a years work with people with learning disabilities who have an interest in music. It will be an outlet for their music to be heard and promoted through a learning disabled led radio show.

Posted by Colin Hambrook, 25 September 2009

Last modified by Colin Hambrook, 6 October 2009