Disability Studies Quarterly Spring 2002, Volume 22, No. 2 pages 34-50 <www.cds.hawaii.edu> Copyright 2002 by the Society for Disability Studies What Is Disability Culture? Steven E. Brown Institute on Disability Culture I have been asking (and being asked) the title question for at least the past dozen years. I have identified and shared example after example to demonstrate the existence of disability culture, but it is much more difficult to define the phrase. There are many reasons for this. The words, "disability," and "culture" are each value-laden, charged with emotion in every culture I have encountered. Almost all of us identify with more than one culture. Growing up I knew, for example, that I was male, that I was a Midwesterner (United States), that I was Jewish, that I was middle class, that I was white, and probably many other things I am forgetting as I write this paragraph. The point is that each of these examples could be considered cultural. I was also a person with a disability during most of my youth, but it was much later in my life that I identified myself that way. Moving to an international perspective the word "disability" has different connotations to diverse cultures just as the word "culture" does. The definition of disability that may have become the most known is that of someone who has a major life impairment preventing them from participating easily in a major activity such as walking, seeing, hearing, thinking. But that definition is one of only dozens in the United States alone. Worldwide there may be hundreds, if not thousands, of definitions of disability and I would venture the same applies to the idea of culture. Any word that has such historical and contemporaneous significance will create controversy and interest. In the past two years I have been asked to describe and stimulate discussion about disability culture on two websites. As a result of these efforts I have sought quotes about disability culture from sources around the world. The bulk of this paper will consist of other people's words with some (hopefully) descriptors about why these particular quotes are being used. One note about style and language. I have attempted to maintain the styles I found these words first formatted in out of respect to the authors and their wishes. In the same vein, I have kept the language in its original spellings. I begin quoting myself from Investigating a Culture of Disability: Final Report published in 1994 after receiving the first monies from the Department of Education to do research about disability culture. This paragraph was first used in my proposal to the National Institute on Disability Rehabilitation Research (NIDRR) to start this work: The existence of a disability culture is a relatively new and contested idea. Not surprising, perhaps, for a group that has long been described with terms like "in-valid," "impaired," "limited," "crippled," and so forth. Scholars would be hard-pressed to discover terms of hope, endearment or ability associated with people with disabilities. (Brown, Investigating a Culture of Disability) The following quote I found online while searching for descriptions about disability culture from other countries. I know nothing about the author: Disability can be represented as a culture, though the range of differences among the disabled is enormous. The disabled community is the most divers[e] there is. It is therefore important to include self-reflection and self-criticism in disability studies programmes. Some difficult questions have already been asked: have these differences been used as a means of division and separation? Are people with severe developmental disabilities or learning disabilities regarded as full members of the club? Or is the expression `physical disability' a disguised strategy for drawing a line, even if it is common knowledge that (develop)mental disabilities have physical markers too? (Ine Gevers: Non-Symbolic Cultures, <http://users.bart.nl/~5star /N/about.htm>) Harlan Hahn, perhaps the first scholar to write about disability being beautiful, wondered, "Have you ever thought about going to McDonald's as part of your cultural heritage? He says for people with mobility disabilities fast food restaurants are a cultural icon." (VSA arts New Mexico website: <http:// www.vsartsnm.org/>) Understanding Disability Culture (New Zealand) A New Zealand website I found included many links to disability culture and focused, as does much of the world, on employment. Encouraging and educating the public so society is informed and understands disability culture. One way this can be achieved is by ensuring a disabled person is included on employment interview panels. Ensuring the rights of disabled people are promoted and upheld. This can be achieved by ensuring a complaints process is understood by disabled people using particular services. Providing employment opportunities for disabled people. This can be achieved by ensuring employment criteria does not disadvantage disabled people. Foster leadership by disabled people. This can be done by ensuring disabled people are invited to training and education courses with other staff. Support quality living in the community for disabled people. One way to achieve this is to offer a choice of living and support options for disabled people. Increase the collection and use of information about disabled people, issues and services. Promote participation of disabled Maori. This can be done by ensuring that they are included in discussions on policy development and service delivery. Promote participation of disabled Pacific Peoples. This can be done by ensuring disabled Pacific People can be involved and contribute to various organisations. (The Implementation of the New Zealand Disability Strategy Auckland Regional Forum) Celebration of Disability (South Africa) A South African Minister identified "disability culture" as a way to celebrate disability: The struggle for inclusion is going to be a long one as the evolution of "disability culture" is still in an infant stage in our country. A key function of "disability culture" is the celebration of the uniqueness of disability. It is my belief however that it will blossom as people with disabilities increasingly identify with each other and begin to express themselves more artistically and participate in the cultural life of society as a whole. (Speech by the Minister of Arts, Culture, Science and Technology, Dr Ben Ngubane at The Celebration of Disability Awards 25 November 2000, Durban, South Africa) Disability in the Arts, Disadvantage in the Arts (Australia) An Australian website includes a multi-tiered plan to utilize the arts, disability culture, and disability pride to focus on people with disability contributing to Australian society. Below is a small sampling of what's on their website: 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. Arts In Action, South Australia Eddie Bullitis describes disability culture as having 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. Disability 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: Disability culture is about visibility and self value. As with many groups in society, recognition by others only comes with self awareness within the group of the groups' differences and strengths. Disability culture offers ways for people with different disabilities to pursue their own, as well as shared goals. Tony Doyle suggests the following outcomes from naming disability culture: debate is stimulated[,] myths are challenged[,] cultural contributions are made, which shatter the image of people with a disability being only "needy" and the reality is reinforced that people with a disability are not only consumers of services but have something to give. Disability 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 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 future 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.