Living with disability can get extreme sometimes. For me, living in the wake of so-called 'schizophrenia' has meant a lifetime of juggling the darkest emotions like tennis balls. My relationship with the illness has been a lifelong struggle... one of those things you are not meant to own up to.
It's a guaranteed conversation-stopper. Even within the disability community you are not guaranteed an empowering response. Reference to the illness can be a great way of losing acquaintances you are not particularly keen on in the first place.
The best you can expect is a conversation about how much better the medication is these days... as if the pharmaceutical companies were engaged in quality control of the neurological issues, heart problems and effects on the central nervous system which are endemic to all the anti-psychotics.
In an interview about definition and language on BBC Radio 4s Word of Mouth, Francesca Martinez asked "why not redefine people with schizophrenia as 'overly imaginative.'" In context she meant it as an understatement challenging the media's tendency to capitalise on the instant shock value to be gained from adding the 'schizo' word to a headline.
I saw a great ad at a multi-screen cinema recently... 30 seconds of blurry camera and dramatic sound introduce the oft-used cipher 'schizo' - leading you into thinking you're about to see a trailer for a violent horror movie. And then the image is cut with an ordinary family situation. A middle-aged man addresses the camera, telling the audience how he has lived with 'schizoprenia' for 12 years and has been able to live a full life with support from his family.
There needs to be more responsible open discussion of so-called 'schizophrenia'. As an illness it is all about irrational fear - as effect and as a cipher. Living with overly developed fear responses, is incredibly debilitating and hard work for those around you.
Societies mindless, sensation-grabbing responses don't help. Alison Wilde sent me an interesting analaysis of the nature of fear's companion, evil - in an article on a book titled On Evil by Terry Eagleton in The Independent.
It seems that we've never quite recovered from the boring name goodness and virtue made for themselves during the Victorian period. Despite the banality that accompanies evil; we have become obsessed by painting evil as romantic and glamorous.
During the Thatcher years we saw a reinvention of selfishness as 'altruism', in the desperate game of justifying greed. It set us up for a lot of fighting... and of course, we were the evil ones in demanding that support of our communities was a necessary part of finding strength to lead fulfilling lives.
But our community does continue to thrive... and will continue to thrive as the going gets tough...
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.
In the 1990s LDAF used to organise debates, which, truth to tell, became circular arguments centering around the question of what is Disability Arts? We somehow never seemed to get beyond celebrating difference and protesting righteous indignation that nothing should be made about us without us.
With disabled people at the helm the world was going to be a better place. Dissing the Social Model was tantamount to letting the side down and any critical debate was stifled by polemic disguised as Social Model rhetoric.
Irrelevant old Art didn’t get a massive reference. Few of the people at those discussions had ever been to a mainstream exhibition at Tate Britain or a performance at the National Theatre. Access was a massive problem then – on all counts. If you just consider wheelchair access - there was none at The Tate Britain which was fronted by an endless barrier of steps. You could go to the National Theatre – but more than one wheelchair user was said to represent a fire hazard, so you could only go on your own.
There was also little access to college education for disabled people, unless you were able to pretend you were non-disabled and throw yourself through all kinds of hoops in the process. LDAF fought for so many years for the right of disabled people to have a say and a place at the forefront of things. Had LDAF not existed would there now be access to mainstream art spaces? So much influence came out of LDAF, but times have now moved on and the conversations that need to happen are different.
The mid to late 1990s were angry times, understandably. The anger was positive in many ways, but there was a flip side to it. It meant that unless you conformed to a particular world-view within that circle, you became subject to that anger. The fire brought a lot of disabled people together, but equally a lot of disabled people trying to take themselves seriously as artists, either couldn’t relate to the rhetoric, or had disagreements with it that there was no space for them to air.
Aaron Williamson argues in his book ‘Performance, Video, Collaboration’ that Disability Arts organisations’ have become slaves to tick-box culture and the ideals behind social inclusion and as a result have been very resistant to avant-garde art or Art that presses buttons - in a desperate attempt to conform; to become ‘Normal’, as Paul Darke would argue.
One of the big problems for Disability Arts organisations has been about resolving who its constituency really are. There has been a lack of grounding in the history of Art for many disabled people working within disability-led organisations which has undermined our efforts to survive within a changing cultural landscape. Without those reference points we have struggled to support emerging artists beyond a certain level and provide opportunities for professional development outside of the Ghetto.
Things aren’t brilliant now, access-wise, but they are a hell of a lot better than they were ten years ago. The DDA has come in incrementally and the Disability Arts movement has struggled to identify its vision within a rising tide of artists who live with impairment and disability, but who are resistant to taking on the disability label.
Shape in its bid to rebrand itself as an organization that is about artists as well as audiences, has begun to host a series of evenings inviting artists under their roof in Camden to discuss. Crafted by Michele Taylor’s seemingly effortless ability to take us on a journey, we were introduced to Katherine Araniello, Tanya Raabe, Aaron Williamson, Jon Adams and Noemi Lakmaier who all presented pieces of their current artwork.
Michelle asked what it means to us, as artists, that we are disabled people? I think all the 25 or so people present, agreed that being a disabled person was part of their identity as an artist. But, crucially the degrees of identification with the term disabled artist, were wide ranging. Some marketed themselves as both artist and disabled artist, keeping all the eggs in the basket.
Tanya Raabe talked about fiercely identifying with being a disabled artist as a mark of pride. She presented some of her Who’s Who in the context of wanting to document some of the history of our movement. Disabled people have been invisible for so long and we need a sense of history in order to value what we have achieved. Work only really gets recognized for its value after it has undergone the test of time.
I think there needs to be more of an uncovering of the disability experience – work that was begun by Leicester Universities’ Buried in the Footnotes programme – a reevaluating of the institutionalization that influences peoples’ perceptions of where Disability Art is coming from. Tanya has shown her Who’s Who in 13 galleries to date. She has had 2 galleries reject the exhibition, one notably from a gallery who didn’t get the connection between the portraits and Disability Art. This success would suggest, that whilst old perceptions die hard, the tide is turning and there is a wider consciousness to embrace disability as a part of the human condition. Perhaps?
Both Aaron Williamson and Katherine Araniello are skilled at taking perceptions of disability and turning them into artwork that challenges prejudice by using a subversive humour that can shock and tease at the same time. And both have had success at taking their work into non-disability settings and gaining some evaluation from what we loosely call ‘the mainstream’.
Noemi Lakmaier talked about her work as having disability reference points. Her work is crucially about identity but whether or not this is seen as disability is not a major concern for her. It is what individuals’ can read into the work from their own experience that is the starting point for its being understood. She showed some work in development that is about ‘imposter syndrome’ – a psychological condition that stems from a lack of security in being who you are. Her portraits presented herself as an office worker, drenched with water and wearing inappropriate clothing.
Who we are, who we think we are and how others see us are such different and divergent things. Jon Adams refuted the term disabled artist as a nonsense. You wouldn’t buy a disabled car or call on a disabled tradesman, so why would you call yourself a disabled artist? He challenged the notion that Disability Arts battles against others’ prejudices asking whether the barriers can sometimes be put there by us? Jon is one of a new generation of artists making work that is about or informed by experience of disability, who is challenging how we feel about Disability Arts in a way that may enable us to move forward. The language we use and how we present ourselves is so important.
Is the phrase Disability Arts useful? For all of us there are universal elements to our work – but how important is it to reference the disability bit of it? Disability is a qualification, like a landscape artist or a surrealist artist it provides a reference point. The barriers the term creates is qualified by peoples’ perceptions and prejudices. But the opportunities it opens up for providing a bridge to an Art which is rooted in lived experience – and as such has the potential to create a deep and unique resonance. It is what drew me in to Disability Arts, having always been disillusioned with work which purely comes from an academic place, with historical reference but little or no emotional commitment.
A barrier has always been that Disability Arts communicates to other disabled people, but leaves non-disabled people out in the cold. As Aaron said during the discussion, we have reached stasis at the moment. Disability Arts has to be taken out of the ghetto and into the mainstream, but on its own terms. The challenge for organisations like DAO is in finding collaborations within the bigger picture that we can nurture in a the bid to give the work we are passionate about a wider audience.
This first event had a focus on contributions from visual artists. The performing artists will come next and I suspect will have a very different flavour. One of the greatest strengths and most undermining weaknesses for Disability Arts has been its ambition to cover all the artforms. It allows for more cross-fertilisation working across disciplines, but equally means that the separate needs of visual artists in comparison to performing artists has made the job the sector has to do in trying to embrace everything, that much harder.
There has always been a pressure on Disability Arts organisations to be all things to all people. May be this should be the subject of a future debate? Certainly there is a strong need for a platform for bringing people together to talk openly. This is something that has been very thin on the ground over the last ten years. So bring it on!