Disability CultureDiscussion Paper Based on High Beam Seminar May 5 1998February 1999 Introduction This paper was commissioned in 1998 by Arts In Action, South Australia's peak arts and disability organisation. It was prepared by Sally Chance as a follow from a seminar exploring disability culture presented at the inaugural High Beam arts and disability festival by Eddie Bullitis, Tony Doyle and Sally Chance. It is aimed at promoting discussion and debate among artists with a disability, artists, people with a disability, professionals working in the disability sector, professionals involved in community cultural development and people with an interest in furthering the aspirations of people with a disability. The disability culture movement is a global phenomenon, this paper being set primarily in an Australian context, drawing on a range of examples, with particular reference to activity in South Australia. It presents opportunities for readers to consider the concept of cultures of disability and how this might:
The paper makes the following proposition: People with a disability should have the option of identifying themselves in the context of a named 'culture of disability' which is a positive development, because society as a progressive force has a good deal to gain from the notion that people with a disability are contributing members of society, the arts providing a particularly appropriate vehicle for such a contribution. Background - High Beam Festival 1998A seminar exploring disability culture from the perspectives of three presenters, Eddie Bullitis, Sally Chance and Tony Doyle, was held at the Adelaide Entertainment Centre on May 5 1998 as part of the inaugural High Beam Festival, a ten day event in May 1998. A joint initiative of Arts In Action and the SPARC Disability Foundation, High Beam is arguably the largest and most significant arts and disability festival in the Southern Hemisphere to date. Work is well underway on the second High Beam, to be held in Adelaide in April/May 2000. 'A large arts event was seen as being able to provide a structure through which multiple outcomes could be achieved. In particular:
The disability culture seminar on May 5 1998 contributed to the High Beam Festival's commitment to debate and professional development for artists with and without a disability, in order to increase understanding and appreciation of disability issues in the arts. Eddie Bullitis, PHD student and tutor/lecturer in Disability Studies at Flinders University, South Australia, presented an overview of disability culture perspectives. He brought to the seminar a range of examples of disability culture 'artefacts' from Canada, the USA and Britain, as well as around Australia. Sally Chance, Artistic Director of Adelaide-based Restless Dance Company, discussed the cultural explorations of Restless and how the company has found it useful to define its methodology, philosophy and aesthetic from the point of view of disability culture. Tony Doyle, Director of South Australia's peak arts and disability organisation Arts In Action, provided his personal perspective of a definition of disability culture and drew examples from his experience of disability, his early employment in a sheltered workshop after experiencing the barriers presented to him by other employment, and the arts as a driving force for social and cultural development. The speakers presented separate papers representing a range of ideas and visions. This paper combines some aspects of the three presentations, as a starting place for offering the view that, within a global context, a strong disability culture movement is developing in Australia, to talk about positive models of disability cultural practice and to promote the view that concepts of disability culture need to underpin the thinking behind future services for people with a disability and are perhaps a significant force, driving action by people with a disability into the next millennium. HistoryTony Doyle states that 'disability culture has been around as long as people with a disability have been. Until recently,' says Tony, 'the culture has been one of apology, of institutionalisation and of absence from wider cultural affairs.' 2 Tony believes that the emergence of a contemporary disability culture movement is given legitimacy by its basis in the arts. He advocates the endorsement of the concept of cultures of disability by disability service providers and these services' policy makers, the arts and community cultural development industries and people with a disability. Eddie Bullitis describes disability culture as havimg evolved from a range of ingredients; issues with which people with a disability have always been grappling, such as segregation, tolerance, celebration, unity, common experience, oppression and barriers. To some people the very notion appears dangerous because it implies a return to past eras of segregation and separation and might be a cause of fear and confusion. However, one of the powerful objectives of identifying a cultural movement is to be able to bring about positive changes of attitude, systems and laws, through shared thought and action.' 3 Eddie refers to the power of language, slogans and symbols to effect positive social change with examples from The US and Scotland: In the United States groups of people with a disability are known to be rejecting well meaning, 'politically correct' terms and grasping labels of the past or inventing new ones. These include: The Deaf Community with a capital D, CP, crips, blinkies, wheelies and Downies In Scotland, a promotion of positive images of people with Down Syndrome is appearing on postcards with photographs and slogans such as Downright Sporty, Downright Stylish, Downright Smart and even Downright Spice Girl. Such images promote the ability of the individuals as well as awareness of their disability. Adelaide-based youth dance ensemble Restless Dance Company began to think in terms of cultures of disability in 1995 with a piece of dance theatre called Talking Down. The piece was created by the Restless dancers with and without a disability for Come Out, a youth arts festival in South Australia, and explored the idea that a culture (or sub-culture) of Down Syndrome not only existed but was long overdue for exposition and celebration. In some quarters the piece faced the reaction referred to by Eddie Bullitis above, of fear that the work would return people with Downs to the old days of segregation. However, Restless found that the piece was a means of initiating positive discussion by using the language of dance most appropriate for the expression of these ideas, particularly in schools where the piece subsequently toured, and particularly among people with Downs in Restless and in the company's audiences for whom dance is often more articulate a communication tool than words. DefinitionsIn order to present a range of definitions Eddie Bullitis's paper referred to Stephen Brown from the Institute on Disability Culture, New Mexico, USA, whose 1994 publication 'Investigating A Culture of Disability. Final Report' surveyed a number of disability culture activists at the forefront of an emerging movement, with the following responses: A legacy of customs and values that represent the common experiences of disabled people (p185)... different ways of coping, eating, shitting, making love, expression, laughing etc. (p186) 6 Eddie's paper referred to an acceptance and celebration of difference, a collective expression of values which not only communicated a specific perspective but also unified the movement and generating pride and strength in order to effect changes in the way people with a disability are portrayed. 3 Tony Doyle describes disability culture as 'a vehicle, all the components of which are scattered all over the place, since disability is common to every community and a natural part of life. If enough of these components are collected the vehicle will travel and achieve.' Tony prefers an inclusive definition of disability culture. 'If you're interested you can hop on the vehicle' he says, likening this concept of a disability culture which welcomes people without a disability, to sheer good citizenship. 2 The positive involvement of anyone with or without a disability who is interested is a powerful model, which can only enhance the contribution made by people with specific support needs. For example, professionals and other people without a disability who work alongside people with an intellectual disability can more effectively work in a spirit of collaboration within the context of such a movement to develop the contributions made by people with an intellectual disability to society. Some artists with a disability choose not to define their work in terms of disability culture, preferring to be regarded as making work in the same cultural contexts as artists without a disability. Other artists with a disability make work which is influenced or informed by their life experiences or by the nature of their disability. This needs to be a personal choice and remains so within the open disability culture model proposed by Tony Doyle which is not based on dogma or exclusiveness but on flexibility and inclusion. As South Australian artist with a disability John Ways puts it accommodating other people (without a disability) is my choice, not theirs. Artists with a disability might choose to make use of mainstream vehicles adopted by artists without a disability to generate new opportunities for the exposure of their visual or performing arts work or they may choose disability culture vehicles such as the High Beam Festival. In his seminar paper Eddie Bullitis refers to a number of other festivals, such as the Take Note Festival(Islington Disability Music Festival), in London ; The Awakenings Festival in Horsham, Victoria both since 1996, and possibly the biggest global celebration of the arts, disability and culture will be the Art and Soul Festival, a five day event to be held in Los Angeles in May/June 1999. These festivals show case performers with a disability in both professional and community based contexts. Tony Doyle from Arts In Action and Kat Worth from NSW dance Company Chaos will be attending the Art and Soul which is expected to bring over 3,000 artists and performers to Los Angeles. This choice making between mainstream or disability culture vehicles also applies to audiences, since artists with a disability do not expect to make work exclusively for audiences of people with a disability. 'High Beam received high levels of approval from audiences as an initiative that was long overdue and one that they were keen to see occur again...60% of people surveyed felt that they also gained an appreciation of the creative abilities of people with a disability.' Disability culture and mainstream culture can operate alongside each other.Disability culture does not have to be exclusive and is more positively developed by being open to anyone with an interest, including people with a disability, carers, friends, support workers, artists and families as well as the general public. Disability culture and notions of integration are not only compatible but are important mutual components of arts and disability activity in Australia. The performance work of Australian performing arts organisations Restless Dance Company and No Strings Attached in South Australia, Back To Back Theatre and Big Bag Band in Victoria and Company Chaos in New South Wales, all illustrate this with their work driven by performers with a disability for performance by people with and without a disability, which is recognised for its excellence in both disability culture and mainstream contexts. Tony Doyle describes integration not in terms of a melting pot but as a celebration of difference. For Tony, this notion has parallels with indigenous, gay/lesbian and multicultural movements. It was the parallels with other cultural or political movements that steered Sally Chance and Restless Dance Company to think in terms of cultures of disability in 1995. Sally cites the development of Deaf culture as an inspiring parallel movement. Deaf culture, with its language, cultural artefacts, pride, desire for separateness in contexts chosen by deaf people and powerful political agenda, seemed to Sally to be a concept which was compelling. This led her to a personal revelation that some deaf people might have no desire to change who and what they are in order to be more normal. At the time of founding Restless Dance Company in 1991 Sally aimed to redress the historical imbalance of dance not including people with a disability. This notion was a motivating force behind the founding of Restless, but the concept of disability culture now allows the thinking behind Restless's work to be far more complex and exciting because the dancers with a disability are not merely joining in a mainstream context defined by people without a disability. They are redefining the nature of dance theatre in their terms. For this reason the company's art is unique and sophisticated. Sally says: 'Restless dancers are not merely taking part in a mainstream activity because they now have access to it. They have unique dance skills to offer the development of dance in Australia, which has been recognised by audiences, other people with a disability and arts funding bodies. Federal arts funding body, the Australia Council has been providing the company with financial assistance for its performance work since 1995 on the basis that Restless is advancing the art form of dance Australia-wide.' 4 Tony Doyle supports this view, describing disability culture events as providing stepping stones between people with a disability and the 'mainstream.' How is disability culture being forged as a group identity?Eddie Bullitis summarised key factors that impact on the development of a group identity as oppression, resilience, history and heritage and perhaps the most obvious factor, creative expression through artistic forums. Popular culture can be a particularly powerful indicator of a shift in cultural attitudes. SBS sit-com 'House Gang,' with its cast of characters with an intellectual disability has been bought by Channel Four in the UK. The AAA (Disability in the Arts, Disadvantage in the Arts, Australia) network in Australia is a manifestation of such a cultural movement. AAA is an affiliation of organisations and individuals concerned with promoting the cultural participation of people with a disability and people disadvantaged by social conditions and currently is represented by people with and without a disability. The High Beam disability cultural festival which presented a program of 60 events during ten days to an estimated audience of 20,000, was another powerful manifestation of disability culture. Tony Doyle described High Beam as 'a disability led initiative which took into account the particular sensitivities around people with a disability, endeavoured to include people with a disability at every level of its organisation and had something to offer the broader community.' The festival forged a sense of collective identity among a huge range of people with a disability, who were present as performers, artists, community participants, audience members and workshop presenters. Tony Doyle says that 'the notion of a quite sizable festival inspired and excited people constantly and consistently. I don't remember any negative responses (from people with a disability) to the idea at all.' 5 The spirit of High Beam grew out of a monthly disability culture event, Club Contagious, initiated in 1994 by Arts In Action. Known as Club C, the event is a regular music, art, performance, workshop and social event, with a bar and good food available, held at the Governor Hindmarsh Hotel, Adelaide and well known among people with a disability, service providers, recreation organisations and, importantly, the broader community. Club C is a strong manifestation of disability culture forging a group identity and providing a disability led community activity to which everyone is welcome. Other clubs include Club Wild, a music and social event in Geelong, Victoria, forming part of a series of master classes and workshops hosted by Back To Back Theatre and Big Bag Band. The papers presented at the High Beam seminar offered personal perspectives without judgment about the success or otherwise in disability culture terms of projects other than those with which the speakers were involved. It is interesting to consider the ways in which disability culture is represented by groups of people with a disability who are fully and positively integrated into a mainstream context which they are likely to profoundly influence but which is not defined by them. The most positive outcome of this kind of integration is obviously that the disability of an artist or community participant is not an issue. In Adelaide, South Australia, Southern Youth Theatre Ensemble's membership of young people represents a successful model in which young people with a disability are integrated into the company's youth theatre works for performance. The Divine Kiss, an opera created in 1998 by IHOS Opera and Access Arts, Brisbane, aimed to involve performers with a disability making opera just like any other performer. Approaches to performance might invite the performers with a disability to drive the work's style and aesthetic because their disabilities create unique approaches to art making or might disregard their disabilities in order to promote their mainstream skills. Both models could be argued to be contributing to disability culture, representing interesting differences of approach. Perhaps the key lies in Tony Doyle's vehicle analogy in which everyone is welcome to contribute but which includes the 'reverse integration' of people without a disability being invited into contexts defined by people with a disability, such as Club Contagious. Sub culturesThe work of Restless Dance Company, a youth ensemble of up to twenty performers with and without a disability, operates from the broad point of view of cultures of disability. In the past the specific perspective of a culture of Down Syndrome has been explored by the company because at the time the majority of the company's dancers were people with Downs. Since then the membership has broadened to include other young people with an intellectual disability. The culturally specific aesthetic sensibility of the dancers, which exists because of their disability, informs the work of the company. People with an intellectual disability make successful dance because it seems to be their most powerful and comfortable form of communication. In 1995 one of the dancers, Melanie Creaser, began to talk in terms of her culture, which endorsed the idea on behalf of the company. I speak Down, I have an accent. This is my culture, she said. Melanie collaborated with director Caroline Daish and the other Restless dancers on the company's 1995 piece, Talking Down , in which Melanie took enormous cultural pride. Talking Down was devised for the 1995 Come Out youth arts festival and performed at the Lion Theatre, Adelaide and subsequently on tour to schools in regional South Australia. Through Talking Down Restless discovered a range of approaches to devising dance and running dance workshops, and even devised new words and movement ideas, which continue to strike an instant chord of recognition and understanding with other participants with Down Syndrome in Restless workshops. In keeping with the culture, the response is not verbal but comes from their understanding of where the movement comes from. One major discovery for Restless was that understanding is not just cognitive and does not merely reside in intellectual processes. Understanding is also physical and emotional. These discoveries have formed the basis of Restless's work, in which having a disability is advantageous. The 'reverse integration' referred to earlier with regard to Club Contagious, applies in the sense that the dancers without a disability are the people doing the integrating into an alternative normality defined by the dancers with a disability. The Restless dancers with a disability are often required to be role models themselves for other participants with and without a disability attending dance workshops. In this way the Restless dancers with a disability are promoting the development of their culture through the company by allowing themselves and their language of dance to be imitated and broadened. Not long ago the idea of young people with an intellectual disability imitating one another would have horrified parents and professionals because they would have been seeking to iron out the very differences which Restless's dance activities celebrate and to make young people with a disability as normal as possible. As role models for each other the modelling and imitation among young people with an intellectual disability is now powerful and appropriate because the Restless dancers demonstrate skills and values to which other people with an intellectual disability can aspire. Since its beginning in 1991, the impact of the company's work on the dancers' sense of who they are and what they have to offer society has been enormous. Gaining confidence and being among people who enjoy mutual respect and understanding are the two major reasons cited by the dancers for being involved in Restless. A high profile arts activity, whether in a disability culture context such as the High Beam Festival or a mainstream youth arts event such as the National Youth Dance Festival held in Darwin and attended by Restless in September 1997, is a means of promoting the skills and qualities of people with a disability. What Benefits Can be Achieved By The Development of Disability Culture?
Furthermore, the nature of service provision for people with a disability is likely to broaden under the influence of the disability culture model of perceiving people with a disability as a driving force in society, because this provides an alternative or complement to the clinical or medical model of thought, which has traditionally placed people with a disability on the receiving end of services. An arts model of disability culture accommodates a range of skill levels of activity and motivation. This allows for the involvement of people with a disability at the level of community celebration or at the level of art form development and professional show case. An example of community level involvement was the Opening Parade of the High Beam Festival for which participants with and without a disability created lanterns to be paraded by over 2000 people through the streets of Adelaide. Canadian arts workers Trevor Found and Elaine Avila from Theatre Terrific wrote to Arts In Action saying this ignited a feeling of integration and pride. Trevor and Elaine's letter to Arts In Action offered an example in Restless Dance Company's The Flight, of artists with a disability making skilful use of an art form to create performance for a general public audience. The work had a successful High Beam season at the Space Theatre, Adelaide Festival Centre. Trevor and Elaine said: Now and again a moment of theatre or dance can remind you what it means to be alive... Restless Dance's The Flight...provided a full hour of this kind of peak artistic experience. The development of disability culture does not only benefited people with a disability. There are commercial gains to be made through such high profile events as the High Beam Festival. Statistics provided by the High Beam Report prepared by Deodar Williams show that 30% of an overall High Beam audience figure of 20,000 came from country South Australia, with a further 12% coming from interstate and overseas. 1 This represents success from a cultural tourism point of view since all of these people needed accommodation, food and transport and were able to access other tourism opportunities while in Adelaide. Tony Doyle makes an analogy with the Sydney Gay and Lesbian Mardi Gras. In its early days it was a very marginal event, designed to have benefits only for the community it served. Mardi Gras has grown to become a huge public extravaganza with a global profile and vast budget, providing commercial opportunities for Sydneysiders and spectators and participants with a program of events bursting with cultural pride. ConclusionChoiceDisability culture offers people with a disability another framework of possibility or choice. Sally Chance states that the idea of belonging to a culture of disability is offered to the members of Restless, within the specific context of the company, as a possible means of forging individual identity. Often this is a means of counterbalancing the views of some members of society. It is a choice among many possible choices of a means of identifying oneself. Visibility and Identity
Tony Doyle suggests the following outcomes from naming disability culture:
The concept of cultures of disability lends the drive towards these outcomes political clout, leading to opportunities for creative involvement at a community and professional level. A confident and forward thinking disability culture perspective is a powerful mechanism with which to voice the issues, legitimise our collective claims within health and sociopolitical contexts, as well as the arts, and gain support. A disability culture movement can move the thinking behind the artistic practice, social relations and service provision by, with and for people with a disability beyond the simplistic notion of people with a disability being 'included' in these structures rather than driving them. The FutureDisability culture is already being advanced by developments in technology, which are facilitating communication in ways unheard of in recent times. Bulletin boards have been a standard form of networking and sharing information for some years while the internet can only develop this form of communication. South Australia based Heather Rose was able to create the scenario and screen play for the movie Dance Me To My Song , realising her own artistic skills due to developments in adapted technology. An Australian Model of Disability CultureAbove all, this paper proposes that an Australian model of disability culture is emerging, exemplified by the High Beam Festival, and worth consideration and discussion by artists with a disability, artists, people with a disability, their families and friends, professionals and volunteers working in the disability sector and people working in community cultural development, because it is open and flexible, attracting people through their interest. An event has a disability cultural emphasis because of its spirit and energy not because the movement has stipulated, for example, that 50% of its participants are people with a disability.
The disability culture movement's basis in the arts ensures that the issues are voiced in ways which allow the imagination of our fellow human beings to be touched. The disability culture movement is dynamic, responsive and developing as greater numbers of people with a disability are able to contribute to its progress. The movement provides a powerful medium for the voice of people with a disability to be heard with dignity, in a spirit of collaboration with people with and without a disability, pointing to a future direction not merely based in social justice and redressing inequalities but in the pursuit of common goals. For more information or to contribute to the discussion contact: Tony Doyle at Arts In Action on phone 08 8224 0799, fax 08 8224 0709 Sally Chance at Restless Dance Company on phone/fax 08 8212 8495 or at restless@adam.com.au Eddie Bullitis on phone 8201 3358 or fax 8201 3210 The AAA network can be contacted via Arts Access Australia Coordinator on phone 02 9251 6844 or fax 02 9251 6422 or e mail dadaanat.net.au 1 Deidre Williams High Beam Report 1998 2 Tony Doyle Disability Culture Paper, High Beam Seminar 1998 3 Eddie Bullitis Disability Culture Paper, High Beam Seminar 1998 4 Sally Chance Disability Culture Paper, High Beam Seminar 1998 5 Nick Hughes, quoting Tony Doyle in an article about High Beam '98, Artwork magazine, September 1998 6 Brown, S.B. 'Investigating A Culture Of Disability. Final Report.' 1994 New Mexico, Institute On Disability Culture 
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