Published in Swain, J., Finkelstein, V., French, S., and Oliver, M. (1993). Disabling barriers - enabling environments. London, Sage Publications, in association with the Open University, ISBN 0-8039-8824-9. Prepared from presentation to London SHAPE Seminar on Arts and Disability on 20 November 1991.
Pressure for change
The cultural record
In every society human beings come together in groups and sub-groups so that their social and physical environment can be modified to improve the quality of life (in food, shelter and leisure). How these different groups actively engage in shaping the world they live in, the artefacts they produce and the mannerisms observed in their use, the different interpretations they make of their lives and the way they present and convey these views to each other, all form the sum total of a society's culture. In all societies, then, we can locate evidence of the real experiences and aspirations of different social sub-groups by the level and way their culture is expressed (especially in its concrete form in the arts).
However, from time to time different sub-groups can become dominant within a larger social structure, and the culture of this sub-group is then likely to become the dominant culture in the greater society. When any dominant group asserts its power by imposing its culture on others, or diverts wealth to its chosen art forms, then the cultural expression of other groups in the arts will be suppressed. The output of these groups may fail to develop, or their culture may disintegrate or disappear. If culture and artistic developments are interpreted as integral aspects of the human social condition, a sub-group's lack of artistic development could be seen as the result of its failure to develop an active social life, or as a reflection of the dehumanisation and suppression of that group. The very limited opportunities for disabled people to take part in all forms of the arts as spectators, creators or participants raises questions about whether or not we are an oppressed and marginalised sub-group and what we might be trying to do about this.
It is arguable that while the most powerful groups in society have placed their cultural tastes at the top of a
hierarchy of artistic forms not all people will be equally devoted to these fashions and traditions. The lower status of
their own customs could then well lead to a general loss of interest in the arts and this could gradually spread throughout
society. This could be expressed in encouraging school-children to think that careers in 'science' and 'maths' are for the
brightest pupils while 'arts' and 'vocational training' are for others. In this context it seems understandable why those
active in promoting empowerment through self-help organisations may not see an equally important role for disability arts
and culture in advancing the well-being of disabled people. Participating and enjoying disability arts could then be seen
as only a side-show in the drama of struggle for change, something to provide relief from the tensions of boring or
stressful committee meetings. In this paper we will argue that the presence or absence of disability culture, and
involvement of disabled people in the arts, is an indication of the general state of their success in reflecting upon and
managing their own affairs.
In our society cultural custody has, for the most part, passed into the hands of a small elite who acquire fame and fortune through support and funding from the most powerful sections of the community. Through its support the white upper middle and upper classes have come to dominate all arts and culture. Unsurprisingly then, in this climate, disabled artists may look for self-esteem and financial gain in the non-disabled dominated arts and media.
After all, when the little information that does exist about disabled artists is often patronising if not actually offensive then there will be a strong incentive to keep this side of one's life somewhat hidden. If disabled artists or musicians are recognised, living or dead, all too often their lives are seen in terms of their medical condition and their imagined ability to 'overcome' personal tragedy. Passivity and dependence are attributed to us, and our only collective identity is as 'the disabled' - as tragic individuals who, to a varying degree, are the recipients of care, unlikely to be creative without the stimulation and assistance of others often in an institutional setting such as the day centre or 'rehabilitation' unit.
It is very unusual for interpretations of their creative work to be analysed in relation to how (and if) the person's impairment informs their work. While we know Stevie Wonder is blind, there seems to be a lack of interest in how this might influence and enhance his music? Could insight about the music of one disabled artist have some particular relevance to other disabled musicians? Isolation due to lack of information about other disabled artists could encourage an individual to develop their creativity no further than as a tool for assimilation into the dominant culture and access to their arts. They may, then, easily become culturally dependent on the dominant sections of society and miss the opportunity to experience the growth in self-confidence that can follow identification with others who see themselves as members of a distinctive social sub-group with a unique, but equal, identity to other groups.
Many disabled people feel that there cannot be any such thing as a 'disability culture'. Even amongst the more informed the idea that our shared experiences and perspectives might contribute to the birth of a culture can generate anxiety. There appears to be two general reasons for hostility towards the growth of a disability culture: 1. In Britain many people believe that 'culture' equals 'opera and art galleries' where the middle class visit instead of watching football. Viewed this way, culture is seen as a possession of the elite and a pursuit of the rich. 'To be cultured', it is imagined, is to be rather like a pearl, understated, refined and in the best possible taste. It is often seen as having nothing to do with the 'real' world - ie. as a reflection of one's experiences and perceptions quite independent of those of the dominant group. Recognition of the importance of participation in the arts and culture of one's own group, as part of human development, is not something that is cultivated in the British character.
2. Many disabled people believe that encouraging a disability culture can only reinforce negative images of 'disability' - ie. they have not questioned the tragedy view of disability and when they think of a disability culture they assume that this must mean art forms which only present the negative side of disabled living. They ask, 'why should I give credence to a life that has imposed barriers on me? What is there to celebrate and explore when my life is so grim?'
Both these reactions miss the point. Discrimination against people on the grounds of 'non-normal' bodies or intellectual
capacity places them outside the mainstream of social life. In order to participate meaningfully within the community
members of this group must actively engage in the issues that confront them. In doing this they provide the material for
their own cultural development that is self-determining and self-governing. This activity is an affirmation of existence
despite insistent illustrations all around us which portray what we will never be!? For example, a deaf person goes to the
theatre and experiences a hearing writer being translated; or a wheelchair user finds art gallery paintings endlessly drawn
from the shoe using artist's point of view. The struggle against disabling barriers, however, is an active and creative
engagement. From this point of view the struggle to remove barriers could be regarded as the seed bed for human arts. For
us, the only difference is that the barriers which we have to address are dissimilar to those faced by able-bodied people.
Of course not all disabled people accept that they are incapable of functioning independently and equally with others in society. The discussion amongst organised and informed disabled people has always focused on finding new ways to integrate into the mainstream community but on their own terms. Thus the day to day experiences of disabled people can be characterised as involving a unique tension which at one level involves the passive experience of being prevented from controlling one's own life while at the another level actively struggling to overturn this situation. Both the absence, and recent emergence, of disability arts and culture might be thought of as a mirror reflecting the current status of this tension between passive and active roles.
As long as traditional media imagery etc. represents disabled people as tragic individuals, with no collective voice and with little access to each other, we can expect the activities of disabled people to go no further than personal complaint. At an early stage in coming together in associations, then, the first choice is almost always to make a combined plea to those in power for greater access to resources. If joint action is undertaken, these associations often settle into the familiar pattern of 'pressure group' politics - ie. appealing to existing power structures to be relieved of their debilitating situation.
Arising out of the struggles of individuals pressure group politics encourages the development of an elite leadership
who then negotiate with those who hold power. In pressure group politics the struggle for civil rights is controlled by the
active few, while the mass of disabled people remain in their traditional passive relationship to others. Only now the
'others' are not able-bodied benefactors but other disabled people. For this elite, negotiating for an improved quality of
life, there is unlikely to be sensitivity about the absence of disability arts. This is because they are concerned with
clarifying and presenting their own perspective of the issues and an inactive membership has little to express when it is
in a passive relationship to others.
Pressure group politics can be the natural first line of action when disabled people come together. However, organising a collective voice may perversely end up by only transferring the microphone to the voice of the elite. The presence or absence of a disability culture and the numbers of disabled people involved, frequency of performances and general social recognition for disability arts can provide important insights into the progress of disabled people moving from passivity to an active role in their own affairs.
If disabled political activists and disabled artists see little point in supporting each other we can be sure that progress towards equal rights has not yet moved beyond the efforts of individuals to escape their own personal restrictions. The disabled political activist is likely to be locked into pressure group politics, escaping a passive disabled lifestyle by becoming the active spokesperson for others, who continue in their passive and dependent lives. Similarly, the disabled artist could be locked into expressing personal life events in the hope that fame will allow escape from the dependency role that society expects of its disabled citizens.
On the other side the spontaneous growth of a disability culture, in the absence of support from organisations of
disabled people, can be regarded as a symptom of ordinary disabled people losing interest in the issues that an elite
leadership regards as a priority. A developing disability culture can not only increase insight into the progress of
disabled people becoming active in the area of civil rights, but can provide important opportunities for individuals to
gain confidence by forming a new and independent social identity. From this point of view the formation of a distinctive
and vibrant disability culture is a vital component in the construction of an accessible route to empowerment.
Many people are uncertain about accepting that disabled artists might also be accountable to a disabled constituency. Art involves personal creativity and some people may have difficulty in seeing the disabled artist as anything other than an independent and uncontrollable misfit. They may dismiss creative works with 'Well, that is only their view', or confuse personal dislike of an art form with the observation that the person is generally 'no good'. While the portrayal of disability issues in the arts arena should be viewed with the same critical eye as the presentation of issues in the political arena we should also take care not to under-estimate the role of the arts in assisting the processes of change.
While there is broad agreement amongst disabled people in the UK that the portrayal of the disability experience is
generally both negative and inaccurate, it is participants in the arts who can breathe life into alternative images. This
should mean that while we share a common understanding of disability we may express this in many different forms and in
different arenas. Taking part in the arts should also be viewed as much as a tool for change as attending meetings about,
say, orange badge provision.
Gaining access to new ideas or creating challenging alternatives when passivity predominates amongst the disabled community can be hard work. Charity imagery, tales of tragedy or outstanding courage in the media, fairy tales and other children's books loaded with disabled villains can all combine to undermine a view of ourselves as valid human beings. If one of the creative activities of art is to present a mirror to society, what we generally see is a distorted reflection of ourselves. Disability arts, on the other hand where, for example, sculpture is designed to be touched as well as to be seen and songs are written about the world as we see it, can redress the balance and engage a lot of people in questioning assumptions that their exclusion from society is a fact of life.
The arts can have a liberating effect on people, encouraging them to change from being passive and dependent to being creative and active. We may not all want to be 'artists', producing and performing work, but arts events can provide another accessible route for looking at the world in relation to disabled people. Meeting together at a Disability Arts event can also provide rare opportunities for disabled people to exchange ideas. Having someone on stage communicating ideas and feelings that an isolated disabled person never suspected were shared by others can be a turning point for many.
However, unless there is a flowering of cultural activity new artists will not be inspired to develop more sensitive
presentations of our place in society and to inform future generations. One of the ways of understanding long gone
societies is to look at their 'cultural artefacts'. If historians only uncover images of disability in charity advertising
and stories of helplessness or courage, with no alternatives, what will that mean for a future population of disabled
people? Evidence of pride in ourselves is also provided by the legacy we leave behind. Our cultural development will
provide not only a record of an active journey, a passing view of ourselves as we are, but also a perspective on the world
for future generations to build and develop.
Arts should provide disabled people with ways of confirming their own identity and as a secondary gain inform, educate and attract the non-disabled world. Until recently the arts have placed too much emphasis on educating non-disabled people rather than providing a media for communication with each other. What is needed is that disability arts (and the disability movement) does not simply imitate the view of the world that pleases white, middle class males. The arts, and the new cultural development, can provide space for reflection on disability life from the rich variety of experiences of different groups of disabled people. Helping disabled people to ensure an integrated role for disability arts and culture in the nation's repertoire of cultural life can provide an opportunity to challenge narrow thinking, elitism and dependency on others. Introducing disabled people to the social role of artistic creativity and opening a debate about disability culture is a dynamic way of assisting disabled people to challenge their assumed dependency and place in mainstream society.