THE USE OF COMMUNITY LANGUAGE AND IMAGERY IN THE NORTH AMERICAN DISABILITY MOVEMENT: IMPLICATIONS FOR THE SOUTH

ABSTRACT

The language and imagery of community has deeply penetrated the international discourse on health and disability and is used often to describe, at various times, groups of people concerned about disability and people with disabilities themselves. Despite this, there has been little critical reflection on this central concept. This paper reports the findings of recent research into the meaning of this concept in the North American disability movement. The research reveals the following: first, that the disability movement tends to define community largely in opposition to institution, a polarisation that renders community inherently good; second, that there is a tendency to romanticise the concept of community, which can produce considerable disillusionment when the experience of community does not meet with expectations; and third, that community language and imagery are often deliberately used to achieve specific strategic goals. The insights generated in this critical analysis of language in the North American disability movement may provide valuable guideposts for those committed to improving conditions for people with disabilities in the South.

INTRODUCTION

The North American disability movement is a relatively new social movement. According to Driedger, this movement emerged in tandem with the 1960s civil rights movement in the United States (1), and spilled over the border to generate disability activism in Canada shortly thereafter (2). The disability movements in both countries were founded in response to perceived injustices toward people with disabilities, and were based upon the fundamental principles of autonomy and self-determination.

Prior to the influence of the civil rights movement in the 1960s, disability was widely understood to be a medical problem with a medical solution (3). Under the medical model, disability was defined as `sickness' or pathology that resided in the bodies of people with disabilities. Disabled individuals were thus viewed as defective and deficit, dependent upon medical science and powerful professionals for `cure'. The civil rights movement, however, generated a deeper public consciousness about the equality of all people, including women, visible minorities, and people with disabilities. Influenced by the `rights talk', people with disabilities began to reject both the medical definition of disability and the control of medical professionals over their lives. They re-asserted control by redefining disability in terms of social and political factors, and insisting that no one knew better what people with disabilities needed than people with disabilities themselves. According to the movement's most outspoken founders, disability was created by society's negative attitudes and substantial physical and social barriers. Society was thus responsible for a more appropriate response - a response the fledgling disability movement believed should be grounded in equity and political inclusion (1,2). All social movements however, require a core constituency and philosophical ideal. For the disability movement in North America, one concept was formative in both, and that was community.

Even a cursory review of the history of the North American disability movement confirms that the concept of community was central in its early development. First, there was `a community' of people with disabilities who joined together to fight to have their rights as citizens recognised. Second, this committed group of individuals struggled in `the community', the physical place where both disabled and non-disabled people worked and lived. The North American disability movement has therefore been portrayed as a people's movement, a political movement that was accessible to all (4).

Evidence of the influence of the idea of community can be found in the public rhetoric of the disability movement. For example, the movement is widely seen to be fighting for the rights of people with disabilities to live `in the community', often defending their position by claiming that `community-based services' are superior to those delivered in institutions. The language of community is clearly important, but can we be more precise about the meaning, importance, and use of this concept by the disability movement? What do leaders in the disability movement mean when they use the word community? Are they referring to more than locality and shared interests, the two most common meanings of community? And if there are other images associated with the word community, what are they, and how do they function in the disability movement? These questions focus on the `language and meaning' of community, which in turn, inform and drive perceptions, attitudes, and consequently the actions of those who belong to the disability movement. The purpose of this paper is to describe the meaning of community to the North American disability movement.

METHODS

This paper reports one aspect of the findings from the author's doctoral research project which focused on an analysis of the concept of community in the international disability movement, based on the independent living philosophy, and a branch of professional rehabilitation called community based rehabilitation (5). The kind of data included in the research project were: key informant data from interviews conducted with prominent leaders and spokespersons within the independent living movement and community based rehabilitation; participant-observations recorded over a course of 18 months in the field; and a plethora of archival materials, both published and unpublished, from both ideological and programmatic sources. The study was conducted within a comparative framework which included disability and rehabilitation representatives in both North America and the South.

The findings reported here are based on the analysis of Canadian disability movement documents only. These data were collected with the assistance of the Council of Canadians with Disabilities and Disabled People's International - the official, largest, and two most prominent organisations of and for people with disabilities in Canada. Examples of core documents used in the analysis were: the United Nation's World Programme of Action Concerning Disabled People, ideological papers and philosophical documents such as the DPI Manifesto, published articles by prominent members of the disability movement, and conference proceedings published by the Council of Canadians with Disabilities and Disabled People's International.

The data analysis process was one of reading the written materials, writing and re-writing reflections, and then explaining and revisiting those explanations in the qualitative tradition of Glaser and Strauss' 'constant comparative method'(6). The process was an iterative, reflective one whereby new pieces of data continuously informed developing interpretations. And while not constituting a discourse analysis in the strict sense, the research sought, as Lupton states, to `display the reproduction of ideology, and the more subtle forms of control, persuasion and manipulation in the meanings inherent in discourse' (7). In short, the aim of the research was to clarify how the disability movement understands and uses community language. The ultimate intention was to reveal the complexity of what appears on the surface to be a relatively simple word.

RESULTS

The use of community language in health has a history. The World Health Organisation first put the idea of community on the health policy table in 1978 with the landmark Declaration of Health for All By The Year 2000 (8). This proclamation launched an unprecedented international revival of interest in wellness, prevention of illness and local control of services to improve people's health (9). The Declaration alerted the health services sectors in many countries that the attainment of good health centred less on medical professionals and hospitals than on concepts with an underlying democratic vision like participation, empowerment, health promotion, and collective action (10). Integral to these concepts was the idea of community.

From this early beginning in health, the idea of community quickly penetrated disability and rehabilitation. In Canada, for example, the importance of community as a guiding concept was established by its prominence in the high-profile document, the Obstacles Report, commissioned shortly after the announcement of the International Year for Disabled Persons in 1980 (11). The importance of community is proclaimed in Recommendation 75 of the Report which states, 'that the federal government promote a more suitable and cost-effective alternative to institutionalisation by introducing enabling legislation for cost-sharing with provinces and municipalities the provision of comprehensive services to assist disabled persons to live and function independently in the community' (11). Unfortunately, the Obstacles Report and many other disability policy documents like it, provide no definition of community and no analysis of this critical concept. If community is a place, we are not told where to find it. If community is a feeling or a sentiment, we are not told what emotions characterise it, let alone how to strengthen it. The reader is left to interpret community in the way she thinks best. One unfortunate outcome is that people differ in their conceptualisations of community and sometimes mistakenly assume their understanding is shared. Another problem is that connotations, rather than denotations, tend to dominate the meanings of community.

In the following section, it is argued that the word community in the context of the Canadian disability movement is subject to just such manipulation. First, it is shown how the word community is used to suggest a natural environment in opposition to the (unnatural) institution. In addition, it is pointed out that sentimental images of an ideal, traditional form of community tend to permeate the movement's discourse on disability rights, and that these traditional and mostly positive images of community may bear little resemblance to their functioning contemporary counterparts. Finally, it is shown that the language of community is sometimes asserted strategically to achieve specific goals, for example, to build internal movement solidarity and to defend the legitimacy of the disability cause to those outside the movement. Without critical analysis of the function of this fundamental concept, these alternate interpretations of community may not always be ascertained.

Community as Non-Institutional and Natural

Perhaps the most enduring consequence of the absence of a commonly accepted definition of community in the disability context is that community has come to be understood as everything that its opposite, institution, is not. For the Canadian disability movement, the meaning of community is also bound up with the movement's historical efforts to resist the institutionalisation of people with disabilities labelled sick and abnormal by health professionals. The medical model and the institution are powerful symbols of oppression, abuse, and control. By grounding itself in the opposite of institution, however, and by situating itself as a movement beyond the confines of the institution, the disability movement can perhaps recapture the positive features thought associated with community. In this way, the disability movement and `the community' can be, in many ways, the same thing, i.e., a desirable place of mutual support where a devalued identity and shaken sense of belonging can be rediscovered.

Several policy documents are examined here to see how this opposition between community and institution is constructed. The World Programme of Action Concerning Disabled Persons, perhaps the greatest policy achievement of the international disability movement states 'many persons with disabilities are not only excluded from the normal social life of their communities but are in fact confined in institutions. While the leper colonies of the past have been partly done away with and large institutions are not as numerous as they once were, far too many people are today institutionalised when there is nothing in their condition to justify it' (12).

The second example is the DPI Manifesto, a key philosophical document guiding the direction of Disabled People's International (13). The Manifesto states 'disabled people have the right to grow up and live in their natural environment. We therefore reject all forms of segregation, and we refuse to accept lifetime isolation in special institutions'. Another DPI document, the Statement on Equalisation of Opportunities (14), adds that only recourse to community living can remedy these historical wrongs: 'Traditionally, disabled people have been warehoused in institutions in the Western world, and in some of the developing nations. Because of this, disabled people have been cut off from the mainstream of the community. To participate fully in society, disabled people must live in the community like everyone else ...'.

In these documents, community is nowhere defined. However, an opposition between institution and community is constructed, with institutionalisation being clearly depicted as illegitimate - an affront to the freedom of the individual. As a result, life in the community is judged to be the only life that is normal, natural and good. In defining itself in opposition to the institution, the disability movement may have created for itself a preferable image - one that has aided in the development of greater movement solidarity, and perhaps even an enhanced public profile in terms of its efforts to improve circumstances for people with disabilities. However, another set of problems may be generated which has the potential to reduce support for the goals of the disability movement overall. First, the `pro-community' position has the effect of diminishing the contributions to the movement made by professionals working within medical institutions. Many physicians, nurses, occupational therapists, physical therapists, and related rehabilitation professionals have been, and continue to be, allies of the disability movement. Due to their institutional affiliations and the negative imagery associated with it, however, their support tends to be discounted. In the second place, an over emphasis on the community as the source of strength for the disability movement has meant that the recognition of other institutional players such as governments has been likewise downplayed. There can be no question that specific pieces of legislation and certain social policies have made a positive difference in the lives of many people with disabilities. In addition, many individuals with disabilities in North America have been the beneficiaries of highly specialised medical interventions, often delivered in institutions. If an embrace of everything community means a rejection of other benefits achieved via institutional channels, then important constituencies of support for the disability movement may be improperly disregarded. With respect to the British disability movement, Raymond Lang has recently said that great care must be taken to ensure 'that those who were hitherto oppressed do not become the oppressors of contemporary society' (15). Thoughtful examination of these issues in the Southern context is similarly recommended so that the most well considered and effective position for the disability movement in the South can be achieved.

Traditional Community - Community the Good

The second major finding of the research is directly related to the power of community language to create positive meanings. Simply saying the word community seems to conjure up in people's minds powerful images of what might be called ideal, traditional community - a place where members are well known to each other and they are loyal, both to each other and to the goals of the community as a whole (16,17). This traditional form of community seems to be grounded in a democratic vision, where members are generous and responsive in times of abundance but can also be counted upon during times of need. What is essential to recognise in regard to the disability movement is that the word community can and is at times used unreflectively. When this is the case, many of the features of so-called traditional community, for example warmth and mutual concern, may be assumed to be present in actual groupings of people called communities when in fact they are not. Brown (18) provides an example of this possibility when he relates the following experience at a disability conference: 'We left plenty of time for audience participation ... The room was alive with a feeling of community and oneness in a mutual struggle to break through both visible and invisible barriers to a sense of group freedom and appreciation. My belief in our common identity was reinforced'. In this excerpt, it is clear that community possesses the positive attributes mentioned above. And undoubtedly, there are times when a 'feeling of community', meaning a warm sense of support and solidarity is an accurate description for the circumstances. The point is, however, that there are other times when 'the community' is not at all caring and supportive, but rather confrontational and discriminatory. Because the disability movement has not chosen to explore the power of language and imagery and its function in the movement, words like community will continue to hold multiple meanings, mostly positive, that can be moulded to suit immediate motivational and/or public purposes.

In addition to generating a picture of naturalness and goodness, community language can also create a powerful sense of identity, unity and cohesion. This theme is captured in a poem by Keny Aviles from El Salvador (19) who writes about his disabled comrades: 'They were always strong, they always looked ahead, and never felt defeated. On the contrary, they wanted to conquer, show their true worth'. The image created in this poem is one of personal strength and transformation. By banding together in a larger group (i.e., a community), the implicit assumption is that people with disabilities can overcome more widespread social oppression. As Cohen (20) has said about the psychiatric survivors movement in North America, disabled consumer leaders have at times presented a rather wholesome and simplistic picture of community life in their efforts to lobby for de-institutionalisation and more humane treatment of individuals with mental disabilities. Cohen rightly points out, however, that an uncritical and overly positive view of community creates as many new problems as it eliminates if the imagery invoked is one where 'small is beautiful, people are not machines, experts don't know everything, bureaucracies are anti-human, institutions are unnatural and bad, the community is natural and good'. Such a characterisation of community as a repository of all happiness and security may not be completely correct. Community as place or locality, and community as shared interests and values are likely to be of far greater complexity. Furthermore, and despite the persistence of positive language and imagery, it is also far from evident that traditional community 'has ever existed', either in the historical past or in so-called primitive cultures. Moreover, the disability movement is clearly not a traditional community in several respects. The disability movement lacks a geographical dimension; its members are scattered world wide. People with disabilities as a group are also extremely heterogeneous, in contrast to the homogeneity of traditional community. Also, while disabled persons' organisations claim to speak for all disabled people, many do not identify with or feel their views are adequately represented by the movement or, indeed, feel any commonality with the disability movement at all. For example, women with disabilities have, at times, found themselves very much at the margins of the disability movement. Driedger (19), commenting on the founding of the disability movement internationally, writes, 'in Canada, women's issues were not considered serious issues by disabled men in the 1970s and early 1980s. Only when women brought up "important" issues such as transportation, accessibility or housing were they listened to. Few women held leadership positions and they often felt patronised and laughed at'.

Although individual persons within the disability movement may feel empowered, the disability movement's celebration of community with its emphasis on collective unity and solidarity can lead to profound disillusionment when the dissonance between expectations and behaviours becomes evident. During interviews for this research, a recently disabled person described his experience within a disabled consumer organisation in the following way: 'The majority of people with disabilities are very supportive in terms of what you're going through. But there are some people with disabilities who then say to you: "You're not as disabled as I am, so what are you complaining about?" That is a total shock! You just go, What? What is happening here?' Interviewer: 'So there is this hierarchy?' 'Yeah! But it was the first time I personally experienced it ... I would say this is the most shocking thing I have encountered. It is very disappointing. Loss of faith, almost. Yeah. Loss of faith in the movement'. The experience of this individual suggests that the disability movement may not be as supportive as the official rhetoric suggests, or at least to the degree that some people with disabilities expect. Like anywhere else, there can be competition, vested interests and hierarchical structures that do not always meet the needs of individual people.

What lesson can be learned from this experience with community in the North? Are there applicable insights for the disability movement in the South? It does appear that a romantic depiction of community implies that diversity issues such as gender representation and cross-disability representation can be obscured. Without a conscious awareness of the power of this word, the 'goodness' of community can also paradoxically dis-empower certain segments of the disabled population rather than empowering them. The use of positive community language may thus create a superficial facade of inclusion and deflect attention to the potential exclusion of less powerful voices within the movement overall. Disability advocates may therefore wish to examine the related issues of disability identity, disability movement membership, and disability movement representation, for the question of who may legitimately speak for whom strikes at the very heart of the founding principles of the disability movement - equality and self-determination. The official leaders of disabled peoples' organisations must also seek to understand why and confront the reasons why people seek membership in the disability movement. It is difficulty enough to try to improve the social position of those they represent in such a way that does not erode their individual status as equal and participating members. It is another to determine in what ways individuals have their individual interests advanced as well as disregarded through such participation and in what ways the language and imagery of community functions in this regard.

The Strategic Use of Community Language

The leaders of the North American disability movement confront a significant difficulty when they aim to advocate for the rights of people with disabilities. For in so doing, the movement must portray itself as a disenfranchised group viz-a-viz the rest of society, a group much in need of empowerment and a larger slice of the social resource pie. At the same time, however, the movement must seek to identify with the non-disabled majority, to portray its members as no different from everybody else. It is interesting to see how the movement attempts to achieve this. For example, an excerpt from a speech made during a Disabled People's International conference states: 'I believe that one day history will look back on us and realise that ... we [have begun] to take back control of our lives. No longer will we as people with disabilities, tolerate being treated as second class citizens... Let the commonality of disability unite us. Our similarities should enable us to overcome all the barriers in our way... The opportunities before us are in the here and now. By sharing our ideas and our experiences we can become stronger. We are in a very powerful position to raise a "Voice of Our Own." Let us be heard around the world! We will be heard and listened to for we demand our rights as full and participating citizens (21). This is a call to solidarity that focuses on the external (oppression) and not on the qualities of the disability movement itself, although it is assumed that common experiences are a powerful unifying force in the movement.

On other occasions to build solidarity the disability movement focuses internally, to the social qualities of the movement and it is here that community language comes to the fore. One informant interviewed for the thesis research said a sense of belonging is found in communion with like others and went on to describe how the disability movement establishes this: 'Who am I to say this is your experience of disability and this is what you need. The point is, the disability movement is there to validate your concerns as an individual. No judging. It is like a safe place. We are an accepting community, and we have an important role to play in teaching others in the community how to be accepting too'. Now, instead of a neglected segment of society, the disability movement depicts itself as a welcoming place of personal fulfilment and support. The emphasis is on warmth and inclusion, clearly imperative for a movement wishing to expand its membership and foster recommitment of the core constituency to the central tenets of the movement. The movement therefore holds itself out to be a community in order to rally and sustain the troops.

Another way that community language is used within the disability movement is to define itself in relation to society in more conciliatory terms. Here the purpose is to emphasise the similarity between disabled people and broader society rather than pointing to their differences. We see this in the remarks of James Derksen, one of the founding members of the Canadian Disability Movement, who says, 'I sometimes think human society is asleep and dreaming a dream where some people are perfect, beautiful, and powerful and others are flawed, un-beautiful and powerless. In the dream the perfect people play their immortal parts and the imperfect people are rejected from human life. We are helping to awaken humanity to the reality that all people are flawed and yet beautiful, and each one limited in his or her unique way and yet powerful.' (22). What Derksen suggests is that, in essence everyone is disabled in some ways and gifted in others - this is a diversity that everybody shares. Hence, everyone in society is equal. The so-called community of disabled people represents just one of many groups which are on equal footing. Interestingly, and perhaps even counter-intuitively, the idea of difference effectively disappears in the idea of diversity. Thus, it appears that the disability movement (or at least key activists in the movement) uses the language of community in various ways depending on the purpose.

Importantly, the two purposes of community language and imagery in the disability movement discussed here highlight an essential tension. To increase group cohesion and enhance member solidarity, and to argue that it is deserving of societal resources and support, the movement must portray itself as a special group, different from mainstream society. At other instances though, to reduce discrimination against people with disabilities and to establish its member's position as equal citizens, the movement uses community to emphasise its similarity to non-disabled society. The plasticity of the idea of community permits this alternate casting of disability as sameness and disability as difference. This research suggests that the Canadian disability movement has, at least until now, been able to sustain such a balance. This research also suggests that the positive language and imagery of community and its malleability plays an essential role in this process.

CONCLUSION

This analysis has shown community to be a nebulous, yet powerful and integral concept in the North American disability context. And while the notion has deeply penetrated the disability movement discourse, those who are actively involved in the implementation of community-based disability projects and the formulation of disability policy are forced to confront the ambiguity of this concept. This paper has argued that many complexities are obscured when insufficient attention is paid to community language. Unless we get behind the language of community however, we will not uncover the various contradictions, agendas, values, and interests suppressed far beneath the surface of this elusive word. We will remain further away from a fundamental understanding of what attracts individuals to the disability movement, what sustains their participation, what needs are satisfied in belonging to the disability movement and what the most effective mechanisms are by which to achieve social change to benefit all people with and without disabilities.

ACKNOWLEDGEMENT
The author wishes to acknowledge the helpful comments of the anonymous reviewer on this paper and to thank both Dr. Joseph Kaufert and Dr. Stewart Neufeld for their insightful comments and encouragement during the PhD research.

REFERENCES

1.Driedger D. The Last Civil Rights Movement : Disabled People's International. New York: St. Martin's Press, 1989.
2.Valentine F. The Canadian Independent Living Movement : An Historical Overview. Ottawa, Canada : The Canadian Association of Independent Living Centres, 1994.
3.Schlaff C. From Dependency to Self-Advocacy : Re-Defining Disability. American Journal of Occupational Therapy 1993; 47(10):943-948.
4.Shapiro J. No Pity : People with Disabilities Forging a New Civil Rights Movement. New York : Times Books, 1994.
5.Lysack C. (Re)Questing Community : A Critical Analysis of Community in the Discourse of Disability Rights and Community Based Rehabilitation. Unpublished doctoral dissertation, University of Manitoba, Canada, 1997.
6.Glaser B, Strauss A. The Discovery of Grounded Theory. Chicago: Aldine, 1967.
7.Lupton, D. Discourse Analysis : A New Methodology for Understanding the Ideologies of Health and Illness. Australian Journal of Public Health 1992; 16(2):145-150.
8.World Health Organisation. Alma-Ata Declaration on Primary Health Care. Geneva : WHO 1978.
9.Brownlea A. Participation : Myths, Realities and Prognosis. Social Sciences Medicine 1987; 25(6):605-614.
10.Stevenson H, Burke M. Bureaucratic Logic in New Social Movement Clothing : The Limits of Health Promotion Research. Canadian Journal Public Health 1992; 83(Suppl.1):47-53.
11.Obstacles Report : Report of the Special Committee on the Disabled and the Handicapped. Ottawa, Canada : Parliament of Canada 1981.
12.World Programme of Action Concerning Disabled Persons. New York : United Nations 1983.
13.The DPI Manifesto. Winnipeg, Canada : Disabled People's International 1982.
14.DPI's Statement on Equalisation of Opportunities. Winnipeg, Canada : Disabled People's International 1989.
15.Lang R. A Critique of the Disability Movement. Asia Pacific Disability Rehabilitation Journal 1998; 9(1):4-8.
16.Lysack C. Critical Reflections on the Meaning of Community. ACTIONAID Disability News 1996; 7(2):43-47.
17.Hawe P. Capturing the Meaning of 'Community' in Community Intervention Evaluation : Some Contributions from Community Psychology. Health Promotion International 1994; 9:199-210.
18.Brown S. Creating a Disability Mythology. International Journal Rehabilitation Research 1992; 15:227-233.
19.Driedger D, Feika I, Giron Batres E. (Eds.) Across Borders : Women With Disabilities Working Together. Charlottetown, Canada : Gynergy Books, 1996.
20.Everett B. Something is Happening :The Contemporary Consumer and the Psychiatric Survivor Movement in Historical Context. Journal of Mind and Behaviour 1994; 15(1):55-70.
21.Equalisation of Opportunities. Proceedings of the 3rd World Congress of DPI April 21-26, 1992, Vancouver, Canada : Disabled People's International, 1992.
22.Derksen, J. The Disabled Consumer Movement : Policy Implications for Rehabilitation Service Providers. Winnipeg, Canada : Council of Canadians with Disabilities, 1980.

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