A reflection on cultural understanding and misunderstanding in the areas of art, disability and the mainstream by Anne Teahan.
In Summer 2010 I participated in an exhibition at the Smithsonian Institution in Washington DC, called ‘Revealing Culture’. Fifty five artists showed work spanning the full range of contemporary art forms from installation to painting. All these artists shared two things in common: firstly, they had undergone a rigorous selection process from an international entry. Secondly, ‘Disability’ was one of the selection criteria. The ‘Revealing’ of the title referred to the ways in which their art might reveal their experience of disability.
The exhibition was curated by VSA – the Washington DC-based International Organization on Arts and Disability. The majority of artists came from across the US and Britain.
Inspired by this exhibition, I completed ‘Sharing Cultures’ an Arts Council research project, published and supported by DAO (Disability Arts Online) Britain’s cultural journal for Disability Arts, Axis the mainstream artists’ website and City Lit London’s largest institute of adult education, where I teach Art.
‘Sharing Cultures: Disability and Visibility’ consists of questions and answers which I put to American and British artists through interviews, email conversations and questionnaires.
I asked about their art, the impact of disability on creativity and the culture in which they work.
Since completing ‘Sharing Cultures’ I have been commissioned to write a reflection on my findings for City Lit, under the heading of ‘Equality and Diversity’ as it relates to disability as well as art. Doing this project has given me a fresh view of mainstream attitudes to this territory, which I will explore in my conclusion using City Lit as an example.
But first, using a question and answer format, I will reflect on the work and words of disabled artists on both sides of the Atlantic who were generous in addressing some challenging questions. I start by explaining my reasons for doing the project
The ‘D’ Word – questions:
1. Why do a project which asks artists about Disability?
Life and art are always entangled and disability is a key life experience.
Every artwork, regardless of form or content, on some level functions as a self-portrait. In showing how they perceive the world, artists show who they are. And disability, in all its forms, is intimately connected to one’s sense of self. Whatever the nature of the impairment, whether it arrives like an earthquake or slowly gnaws away at each moment, to be disabled is to have a front row view of how the mainstream judge ‘normality’. A disabled person has a deep – not necessarily welcome – insight into the issue of Identity.
The onset of impairment had a strong effect on my own identity and art.
I changed from a person with fluid spontaneous speech, to someone with a word-by-word struggle to be heard.
I learned that a physical condition has deep social consequences. I learned about the politics of conversation: who gets to speak; who gets heard; I realised that when my voice works I am a participant; when it doesn’t I became a passive onlooker. The nature of my interactions with people changed completely. All this fed into my art.
In parallel with this change, my two-dimensional drawings took on a different life when I fragmented and reformed them into paper sculptures. This wasn’t ‘Disability Art’ – but it was art which expressed a changing sense of self – and was certainly the result of disability.
In ‘Sharing Cultures’ I wanted to find out how other artists dealt with their own experiences of impairment or disability. In viewing an international exhibition in Washington, would disability be detectable, or submerged; would it shape the work or be irrelevant to such a wide spread of art and life?
I also wanted to know how artists felt about the ‘D’ word itself and exhibiting under a Disability banner. How much would cultural background influence their responses?
Having completed the project and gathered feedback from British and American sources, I find that many common threads and clear cultural differences emerge – especially in the use and meaning of words.
So before exploring the Art, it is necessary to define the terms. US and UK artists used the word ‘Disability’ to mean different things.
2. What did British artists mean by the word ‘Disability’
At the most political and purist end of the UK spectrum, the language rules were clear: the word ‘Disability’ should only be used to describe the social barriers which cause inequality. It should not be used to describe a medical condition. ‘Impairment’ was the word for bodily illness.
‘Disability Art’ was a distinct movement grown out of decades of political campaigning:
‘….the whole point of the international Disability Arts movement is to fight for human rights and equality.’
Art should not focus uncritically on a medical approach to the body, as this might reinforce old stereotypes of Disability as a medical tragedy. Art’s function was to change society’s perceptions.
For other British artists ‘Disability’ had dual meanings, which shifted according to context: it might mean both physical impairment and social consequences.
Where artists put the emphasis, sometimes reflected the very different life experiences of people born-disabled and those with acquired impairments.
3. What did US artists mean by the word ‘Disability’?
American artists used ‘Disability’ to refer to their specific impairment, illness or medical condition which might be described as a ‘constant companion’, the source of artistic inspiration or a much resented foe:
‘I didn’t ask for it’ ’.
But this medical definition was only a starting point which extended into a wide range of artistic, practical, social or psychological considerations. Some explored disability rights and stigma; others derived inspiration from medical imagery.
There was no unified disability-led US art movement, but many artists expressed a strong feeling of connection with others in the Smithsonian exhibition. Most rejected the phrase ‘Disability Art’ in favour of ‘Artist with a Disability’ in line with the US ‘person first’ philosophy.
The respectful US language rules were described in VSA’s exhibition catalogue:
‘People-first language helps us remember that everyone is a unique individual, and their abilities or disabilities are only part of who they are… ‘
Pittsburgh artist Bill Shannon commented:
“ .. the British tend to harbour an irreverence for the preciousness of the disabled experience whereas Americans hold to a more pious trend in language and action.”
4. How did British artists describe the creative effect of Disability on their art?
How did disability emerge in their work?
For UK artists there was a spectrum: for some, disability politics was the primary purpose and motivation of art, for others, it might fuel, inform or influence their work, but art had its own momentum.
In the Washington exhibition, three British artists explored themes of Eugenics and Euthanasia.
Liz Crow’s film ‘Resistance’ was direct. Her story from the Disability Holocaust, rooted in war-time Germany, was a warning against contemporary attitudes to euthanasia
Ju Gosling’s body-related imagery functioned as a critique of the process of labeling and medical classification; in ‘Abnormal 2’ she listed her own attributes, ‘lesbian’ ‘kyphoscoliotic’ , ‘myopic’, in colour-coded typography as a reference to genetic coding.
Simon Mckeown acknowledged both medical and political aspects of Disability in his interview. He described his childhood experience of brittle bones as a kind of artistic ‘training’. During long periods in bed or hospital waiting for broken bones to repair, he created his own artistic amusements and cultivated an intense concentration.
This became the foundation for his work in animation, which requires painstaking, frame by frame attention.
His film ‘Motion Disabled’ used animation to celebrate the rhythms and poetics of difference in bodily movement. Politically the film was an antidote to a eugenic approach to disability.
Sophie Khan’s Smithsonian catalogue statement made no reference to disability or impairment. Her haunting film showed a dancer’s body emerging from deep, rich space. A medical subtext was suggested by her body-scanning approach to image-making, but the artwork shown in Washington maintained its mystery.
5. How did US artists describe the creative effect of disability on their art
How did Disability emerge in their work?
All but one US artist acknowledged that Disability informed their work in some way. Their answers ranged widely. At one end of the spectrum there was an insistence that Disability was irrelevant:
‘Never think of it till I have to move 50 lb of clay’.
At the opposite end, it was the driving force. The psychological legacy of childhood bullying, fed one young artist’s steely determination to succeed: ‘I’ll show them..’
Many positive statements were made:
‘Disability gave me art’ said Janet Yagoda Shagam of her beautiful prints, made after the onset of epilepsy; ‘I consider the anniversary of epilepsy to be another birthday’.
Some said it was ‘neutral’ but then went on to give elegant and thoughtful explanations of how it influenced the flow or development of their work.
Without the British ‘medical’ prohibition, US artists were more willing to describe how the physical or emotional restrictions of their specific impairment were utilised in a creative way.
For Sunaura Taylor from Arizona, it informed both process and content. This is her VSA catalogue statement:
‘I do everything with my mouth – I cook, clean, kiss, sing, carry and paint through my teeth, jaw, tongue and lips, and my mouth is very close to my eyes.’
Her oil painting had an intense sense of surface. Her subject matter directly touched on disability rights and animal cruelty.
For Massachusetts artist Liz Doles, Disability changed the process. Grave’s Disease and the disintegration of sharp close-up vision lead her to work with a pinhole camera made from an old detergent box. The resulting series of images – magical views of a strangely lit world from ground level – transformed familiar places, such as Macy’s department store in New York, or a Buddhist shrine in Katmandu. Both took on a sense of mystery.
Sometimes Disability was a lens through which other human struggles were viewed.
Loretta Bebeau, who worked with fragmented words and graphic symbolism, explained that she was interested in Communication in general rather than Deaf issues in particular.
Washington-based Gwynneth VanLaven’s medical waiting room installation at the Smithsonian, was part of her larger critique of drug companies and their marketing of anti-depressants. This in turn linked to her work about advertising and false hope.
A sense of engagement with the world in general rather than disability in particular, ran through much of the US work in the exhibition.
Leni D Anderson’s paintings, inspired by Medieval artists such as Bosch, explored apocalyptic themes – perhaps informed by the effect of his experiences serving in the first Gulf war. But he also talked about the therapeutic effect of painting as a process.
Rhonda Zwillinger, from Arizona made work about disability on two levels. The onset of Multiple Chemical Sensitivity (MCS) transformed the physical nature of her art.
‘…. Now everyday chemicals cause life-threatening reactions, causing me to switch from traditional art materials…’
Her creative solutions to MCS in the Smithsonian were witty and surrealist combinations of rusty objects and textiles woven from safe materials.
Elsewhere, her Art is stark. ‘The Dispossessed’ is a book of black and white portrait photographs which document the MCS culture of isolation.
People with MCS must live away from the urban environmental contamination which harms their health. For her, disability, art and environmental campaigning became merged.
1. Reflections on Opposites
The artists in my research are nourished by two different cultures. And on the surface at least, they seem to approach Art and Disability in opposite ways.
Between Heaven & Earth
The US approach is ‘top down’. VSA the primary US organisation for disabled artists, supports creative projects across the vastness of America and internationally, within a philanthropic culture.
The British approach is ‘bottom up’. Decades of grassroots disability campaigning have penetrated the mainstream and now influence Arts Council policy.
Both share a common language, yet words have different meanings and describe different concepts. For some British artists, ‘Disability Arts’ is a battle cry against discrimination. For most US artists the same phrase diminishes the seriousness of their work, because it positions the ‘D’ word before their Art:
‘..why should my work be undermined?‘
The style of discourse is different. On being asked to comment on each other’s cultures US artists either avoided critical comment, or were mostly diplomatic.
British artists were more argumentative and critical – especially where an unwillingness to be ‘out and proud’ was detected. When US artists expressed professional reservations about exhibiting under a ‘Disability’ banner (‘as long as it’s not in the title’) it prompted British accusations of ‘closeting’.
Busser Howell from Ohio wrote:
‘I do feel that the disabled are more organized in England … much more militant than we are – good for you.’
But elsewhere, the activist flavour of the British websites gave a negative impression: ‘..seems like it’s working on the fringes of cultural inclusion…’
Leni Anderson from Ohio felt that the UK wanted Disability to be a separate culture:
‘… it seems the British set a line in the sand between people with “disabilities” and people who do not have disabilities ……I do not think we should have a division between ‘Us and Them’.’
British artist Deborah Sowerby commented in response to the research:
‘…I would argue that being part of a collective, even an oppressed minority group, can be empowering… to know that one’s experience is not altogether unique.’
One culture’s idea of segregation was the other’s expression of solidarity.
2. Reflections on Prohibitions
All cultures have subjects which are openly discussed, but also ones which are more difficult to question. Here again these take opposite forms.
In the US, VSA showcase the work of disabled artists within a culture of praise and support. But their website has no artist-led forum to discuss the social realities of being an artist with a disability. And VSA are not disability-led, so they cannot discuss these things on someone else’s behalf. They promote and celebrate artistic success; they do not expose the raw politics of social exclusion or prejudice.
Perhaps this reflects US culture in general: in Washington one was forever looking up: at plinths and monuments, at flags and expressions of national pride. Even the ‘Revealing Culture’ exhibition elevated the work on a small platform above the gallery floor.
In British Disability culture, politics and art are often merged and openly and widely discussed on a disability-led forum. But the core philosophy is very hard to question. The medical and social models of disability are placed in complete and exclusive opposition to each other. An acceptance of this polarity underpins all cultural discussion and some artistic opportunities. In my research, medical references within art were judged to be disempowering unless placed within this context.
In the US, artists felt free to draw on many sources of inspiration, including the Medical. For some, a fascination with neuroscience or biology was a rich source of ideas, and could lead to fruitful art-science collaboration.
One artist seems to straddle both cultures. Katherine Sherwood, a Berkeley professor of Art, explores and promotes the work of disabled artists in her teaching. As the only US artist to prefer the British ‘Disability Arts’ approach, she judged the US to be ‘still heading in the direction of ‘Very Special Arts’.
Her art is inspired by brain imagery. Large-scale canvases look like aerial dreamscapes or magnified cellular events. A stroke caused her impairment and is credited with transforming her art. So for her biology is visually fascinating and not disempowering.
3. Reflections on Shared Experience
Despite these apparent cultural differences, looking a little under the surface, I found many things which are instinctively and mutually understood by artists on both sides of the Atlantic.
Firstly there’s the ’two-sided’ nature of the disability experience. Simon McKeown put it succinctly when asked whether disability was friend or foe:
‘Medically it is sometimes not my friend, but artistically it is 100% my friend’.
One artist described disability as her ‘artistic foundation’ but added, ‘I’d be rid of the pain – I’d just throw it out the window’.
Variations on the phrase ‘It’s part of who I am’ cropped up repeatedly, as did the assertion that even the most painful or unwelcome experiences could be artistically fruitful: ‘Even when it’s bad, it’s interesting’.
But it was also acknowledged that the exhaustion of managing impairment within a disability-unaware environment or the interruption of medical interventions, take a heavy toll. Disability offers creative insights into the human condition, but it also saps creative energy. Reactions to this contradiction varied from despair, through frustration, to philosophical acceptance and sometimes defiance.
On both sides of the Atlantic, there is also a shared anxiety about creative identity. Artists have sensitive antennae when it comes to cultural labeling. And people experiencing disability know where the ‘D’ word sits in the wider world. They see life from outside and from within. They have a deep understanding of the psychology and politics of identity.
Many artists I contacted felt real solidarity with other disabled artists, but wanted to resist the baggage or stigma attached to the ‘D’ word: ‘Our culture has a negative view of Disability’. Some described bruising occasions when their work was denied a review or rejected because it was exhibited under a ‘Disability’ banner. ‘It shouldn’t be like that but it is.’
All the artists were ambitious for their work, wanted to show in the best venues and make their own choices about definitions. How they tackled this depended on individual circumstances as much as culture.
Should anyone care how art is labelled? As Gwynneth VanLaven from Washington put it ‘if they’re put off by Disability then….. they’re not my audience’.
But if you can’t get your work reviewed because of it, perhaps you should care.
Liz Doles from New York was positive about the question:
“I’m happy to show in any worthy venue such as the ‘Revealing Culture’ show and to show with artists of such accomplishment.
How others may receive the work is not my concern. I’m not proud or ashamed of having a disability but I do admire my fellow artists’ determination to pursue their dreams and activate their talents.
I do see the potential to be categorized as a “disabled artist” and the potential to be dismissed or marginalized as such, but that happens in every aspect of daily living .. I show in non-“disabled” exhibits as well .. but I do feel good about participating in these “disabled” events because I think that here art can do more than be a commodity, that art’s function as a vehicle of renewal and regeneration has more room to happen . . .”
1. Britain, Disability and the Mainstream
By researching American and British approaches to this area, I have gained a fresh view of home. I have learned that within Britain there are two completely separate cultures in relation to Disability.
City Lit where I teach art, is London’s largest institute of adult education with a successful and vibrant Art department. It therefore offers me a first-hand example of a mainstream British approach to the territory and a forum to present my conclusions.
At City Lit, ‘Disability’ under the umbrella term of ‘Equality and Diversity’, is a category for teacher training days, applied to students who have systems in place to ensure that obstacles to their learning are removed. This ‘tutor-student’ model assumes that the professionals who deliver courses are not disabled, but some of the students may be.
As an employer however, things are different. There is no clear system of Access hard-wired into the working environment. The onus is on the individual employee to find ways of disclosing and explaining how illness or impairment affect their ability to work. This confuses the ‘student-tutor’ model and is a source of misunderstanding and occasional conflict. The word ‘disclosure’ itself has unintended undercurrents of secrecy and exposure.
For people with life-long and highly visible impairments, ‘disclosure’ may be a ludicrous concept – especially if they work in a disability-led environment. But within a mainstream context, it is the thorny issue on which sustaining a working life depends. How do employees go about coming out? To whom do they do the disclosing? And if their disclosure is kept ‘confidential’, they may find themselves in the strange position of being both in and out of the closet simultaneously.
In art or drama this tension might be a rich source of comedy. For artists in my research, the subtle social torture of managing hidden impairment was a recurrent theme.
This problem has a simple cause. The core concepts of disability rights are not generally understood. The social model of disability (which states that society disables, and not illness) and the concept of Access – so familiar to artists and organisations in my research – have not yet penetrated everyday working life.
British mainstream and Disability cultures are different worlds with completely different frames of reference, far more separate than the US and UK cultures in my research. So my first conclusion is simple: they need to know about each other. An injection of clarity from Disability rights experts, with decades of experience, would help the well-meaning mainstream understand the social model: how impairment is different from disability; how explaining Access requirements is more empowering than asking to be helped … Clarity is easier to translate into policy than good intentions.
2. Disability and Art on both sides of the Atlantic.
When it comes to US and UK approaches to Art and Disability, I struggle to reach clear conclusions. Both work effectively within very different cultural climates and I find myself torn. My artistic and social impulses face in opposite directions.
Artistically I strongly prefer the US approach for its openness to the full spectrum of artistic and life experience. In the Washington exhibition multiple themes of disability were revealed within the work of 54 individual artists. By going lightly on the ‘Disability’ labeling, the audience were free to respond to the work with an open mind, and authentic human experiences will inevitably surface in authentic art.
In the UK, activists ascribe a single purpose to Art, which is to challenge old, disempowering medical definitions of disability. Artists in my research who saw things differently, were judged harshly as though colluding with the enemy. In these circumstances the phrase ‘Disability Art’ becomes prescriptive; it suggests an art made solely by and for disabled people and assumes they must all see the world through the same lens.
Socially however, my instincts are pulled in the opposite direction. The British ‘Disability Art’ label can also invoke a strong desire to penetrate and change the mainstream. It can be used as an umbrella term for a flourishing variety of cultural practices; for artists and writers who spearhead cultural organisations, initiate creative projects and form online communities engaged in robust and critical discussion.
At a time when British popular culture is overloaded with ideas of bodily perfection, and with Channel Four freak shows, it seems important that disabled artists are there at the centre of things, offering a critique of contemporary values and challenging shallow media identity clichés.
Furthermore, in mainstream public discourse, there is an increasingly strong shift toward entirely medical rather than social ‘solutions’ to ‘problems’ of disability, illness and old age – often camophlaged by the language of compassion. Some of the artists in my research are tackling these ideas head on, but their work is not yet widely exposed.
In these circumstances it seems particularly pressing that they are seen and heard in the mainstream. They have an expertise in the essentials of life which should be shared. They know more than everyone else about social exclusion; about how our public spaces are constructed; they can challenge glib assumptions about what makes life worth living and who gets to decide these things. Artists with a life-long knowledge of all this, and a sometimes formidable record of campaigning for disability rights, have a rich source of subject matter and a well of simmering anger, to draw from.
Liz Crow said in her interview:
‘ I don’t actually see my work as being about disability – it’s about ‘place in the world’. Identity..’ Her films look at people ‘ … who don’t have an easy fit.’
Not being an ‘easy fit’; the sense that the rest of the world is having a party to which one is not invited, and cannot gain entry, may apply to all sorts of situations including and beyond Disability.
At the end of this research I find that I am weary of definitions. For me neither the word ‘impairment’ nor the word ‘disability’ adequately describe the variable and muddy merging of medical and social experiences that exert both productive and destructive influences on making art; for me they are no more satisfactory than the medical diagnoses I have acquired. The more one looks at definitions the more they seem to evaporate into ‘just life’.
The most valuable parts of a long research project were artistic and humanistic.
I have discovered some powerful art and I retain the memory of intense imagery: the luscious oil paintings of Sunaura Taylor; haunting stills from Liz Crow’s film Resistance; magical images made by artist Liz Doles from a detergent-box camera … all of these took the imagination in different directions and prompted thoughts and feelings which do not translate into words.
I have also learned about the motivations of individual people – how they endure and survive and nourish their creativity despite an awesome mountain of difficulties. For example, I now know there are US communities in Arizona and elsewhere, who lead separate lives because of environmental illness, documented by artist Rhonda Zwillinger. (see ‘The Dispossessed’).
But I also realise that to represent all this in heroic terms, is to risk reviving stereotypes of disability-as-suffering-transcended, so better to end with a more earth-bound approach to the subject.
I have learned through this research, that the more you look at cultural differences the more you see human nature at work – sometimes building walls and divisions but then dismantling them and creating new connections. And of course all grassroots political movements are the same in some respects: they both resist and seek integration; they have purist, separatist tendencies and liberal, generous ones; they start out challenging the mainstream, but in the end, to be successful, they must insist on becoming an indispensable part of it.
LINKS AND ACKNOWLEDGEMENTS
Links to Sharing Cultures: Disability & Visibility
Questions and answers, interviews with artists
Reflections on the VSA exhibition at the Smithsonian in Washington DC
Axis webzine article ‘What has Art got to do with Disability ?’
Many thanks to participants in Sharing Cultures
Colin Hambrook editor of Disability Arts Online
Axis the online resource for contemporary art
Participants from the smithsonian and vsa
Ellen Dorn, Director of Special Exhibitions at the Smithsonian Institution for her interview.
Stephanie Moore, Director of VSA in 2010 and organiser of Revealing Culture.
Michelle Lisa Herman, Washington DC, US
Gwynneth VanLaven Fairfax, Virginia US
Liz Crow Bristol, UK
Simon Mckeown, North Yorkshire, UK
Leni D. Anderson Columbus Ohio
Loretta Bebeau Minneapolis, Minnesota
Allen Bryan Saugerties, New York
Liz Doles Cambridge, Massachusetts
Joan Fabian San Antonio, Texas
David S. Forbes Queensland, Australia
Barbara Freeman Tujunga, California
Ju Gosling aka ju90 London, UK
Busser Howell New York, New York
Sheri C. Marshall Holy Springs, Mississippi
Amy Miller Venice, Florida
Janet Morrow Bedford, Texas
Isaac Powell Richmond, Kentucky
Janet Yagoda Shagam Albuquerque, New Mexico
Bill Shannon Pittsburgh, Pennsylvania
Katherine Sherwood Rodeo, California
Rhonda Zwillinger Paulden, Arizona
Jamshid Agayev Azerbaijan
Martin Charlot Burbank, California
Emmet Estrada Warren, Rhode Island
Pedro Luis Mejia Granja Guatemala
Sunaura Taylor Oakland, California
Anne Teahan London, UK