By Myroslava Tataryn
Published in March 2008
Local democracy may be less about structured democracy and more about things that happen at the community level that connect people and cultivate sharing. Yet, even within this movement dedicated to inclusive community, people with disabilities are typically left out. What assumptions allow for the continued systemic marginalization of people excluded from generalized public considerations of “all people”? What ideas and principles of local democracy can help us to move away from this cycle of discrimination? How can Disability Studies deepen our understanding of concepts such as dependence, interdependence and reciprocity? And how can a social model of disability inform the development of democratic communities?
Principles of Local Democracy and Inclusion
Susan Mosoff writes, in the Manitoba Law Journal, that “exclusion from the mainstream of Canadian social and political life has been the historical norm for persons with disabilities.” The marginalization of people with disabilities is so ingrained in our society that most of us, even social activists, fail to see it. Bias against disability is so ubiquitous it seems “normal.”
Therefore, any authentic pursuit of an inclusive democracy, with “fostering relationships where people are real,” must become aware of the process by which our society, our organizations and groups, even on the small scale, exclude people with disabilities.
Recognizing disability bias is critical for social movements because, as Sherene Razak says in her book Looking White People in the Eye, “we fail to realize that we cannot undo our own marginalization without simultaneously undoing all systems of oppression.” Yet, ableism is one of the “isms” that has escaped our exploration of local democracy. However, I believe that there is much that the thinkers that inspire The Working Centre and the local democracy movement can contribute to a struggle against ableism, just as Disability Studies work can facilitate the realization of local, democratic, inclusive communities.
Recent Disability Studies scholarship resonates with the theories of Illich, Lasch and Berry as they critique institutionalization and call for truly community based, small-scale efforts to educate, care for and support people of all ages. The inclusion of all people regardless of physical differences demands a revisioning of social and cultural notions of dependence, interdependence and reciprocity.
What is Disability Studies?
Disability Studies is an emerging scholarly discipline that examines the construction and interplay of disability in society. As Tanya Tichkosky articulates, “disability as a space to critique the goings on of culture is still an alien idea overwritten by the need to simply ‘help’ Disabled Others.” Because the philosophy of The Working Centre rejects charity-based models of support, it joins the Disability Rights Movements’ struggle towards the construction of reciprocal communities that value its members’ diversity. But before we discuss the convergence of disability theory and Working Centre philosophy we must first stop to problematize the term “disability” itself.
The Social Model
Disability Studies and activism engages a ‘social model’ of disability instead of the institutionalized medical model. The social model of disability locates disability in societal relationships rather than in individual bodies. People are not disabled simply by virtue of a physical or cognitive impairment but rather by the social systems, structures, and attitudes that are set up for a certain type of body. As Susan Wendell explains, disability is socially constructed in many ways, “ranging from social conditions that straightforwardly create illnesses, injuries, and poor physical functioning, to subtle cultural factors that determine standards of normality and exclude those who do not meet them from full participation in their societies.” When considering cultural factors that disable people, stairs, ramp-less curbs and unshovelled un-maintained walkways come to mind; but far more subtle factors preclude people’s involvement in community, such as, for instance, ‘pace of life.’
An increasingly faster pace of life in our contemporary society disables “through expectations of performance” (Wendell). This idea conforms to calls to restructure work and ‘life pace’ in communities aiming at becoming less reliant on the increasingly globalized, corporate market with its commodities and pressures to consume while destroying environment and community. Wendell considers how the daily grind of poverty, abuse, neglect, overwork and stress all contribute to disability but they are not equally distributed amongst all sectors of society. Therefore a focus on disability issues brings to light broader social justice issues: “the social factors that damage people’s bodies almost always affect some groups in a society more than others because of racism, sexism, heterosexism, ageism, and advantages of class background, wealth and education.”
The social model of disability removes people with disabilities from the exclusive sphere of medicine and rehabilitation to the arena of social justice. Therefore the systemic exclusion of disability from everyday community considerations needs to be redressed in true community and democracy building.
Interdependence
One of the recurring themes in the consideration of local democracy is that of interdependence. If we want to cultivate vibrant, democratic, local communities, we must recognize our interdependence as humans and citizens of a society and a community. Interdependence is also central to the theories of many disability scholars.
Dorothy Day writes how “the only answer in this life, to the loneliness we are all bound to feel, is community.” Yet, our society exalts autonomy and independence. Even within the disability movement in North America, there has been a strong push for ‘Independent Living.’ But, as Wendell writes, this “tends to diminish the esteem of people who cannot live without a great deal of help from others, and to ignore or undervalue relationships of dependency or interdependence.” She explains how “the problem of formulating alternative ideals that would recognize, value, and guide relationships of dependency and interdependence is shared by those who want ethics to be sensitive to non-disabled women’s lives and those who want ethics to be sensitive to the lives of both women and men with disabilities.” Social spaces that celebrate interdependence enfold not only disabled people but also others who are relegated to social margins such as nursing mothers or the elderly.
Also, taking into account the increasingly multi-cultural nature of our communities in Canada and in the K-W area, it is also important to note the cultural/situational and arbitrary nature of what is considered dependent. Susan Wendell writes that, “few people in the city would consider me a ‘dependent’ person because I rely on others to provide me with water out of the tap, electricity …Yet if I rely on someone else to help me out of bed, help me use the toilet, bathe me, dress me…most people would consider me very ‘dependent’ indeed… it is instructive to remember that, to people who meet their own needs for water, food, shelter, and clothing more directly, all of us who live in industrialized societies may seem as helpless as infants.”
In discussions of local democracy we must ensure that our talk of the importance of one’s own handy-work and self-sufficient production is mediated with discussions about the importance of exchange and the possibility of non-tangible and non-material contributions to community. Otherwise, we risk fostering ableist communities that exclude people unable to work but who should nevertheless be seen as invaluable community members. As Wendell Berry explains:
“There are people who will always need a lot of help from other individuals to survive…and there are people who sometimes need a lot of help to survive. To the extent that everyone continues to consider ‘independence’ necessary to respect and self-esteem, all those people will be devalued. Moreover, some people will always expend tremendous energy being ‘independent’ in ways that might be considered trivial in a culture less insistent on certain forms of self-reliance; in a culture that valued interdependence more highly, they could use that energy for more satisfying activities.”
One of the consequences of an exclusive focus on “independent living” and employability is a disregard of the importance of reciprocal relationships. Too often, people who are unable to be independent (read employable) are simply rejected as “people,” dumped into institutions or left to be cared for (with little or no support) by families.
This brings to mind a recent dinner conversation about deaths of long-time acquaintances and health in old age. We concluded that, above all, what keeps people going, regardless of their age, is to be needed by someone else. This is a fact so often ignored in our society, with its push for independence and its materialism. Yet, acknowledging the merit of being needed would transform the way we view dependence as a society. Caring for another could be seen as a necessary element for individual and social wellbeing. The persons requiring care could be seen as valuable service providers.
Institutions
In our contemporary society, too often care-giving, particularly for people with disabilities, is relegated to institutions. However, as Ivan Illich observes, institutions betray relationship. People with disabilities are forced into the “system world” versus the “life world” discussed by Ken Westhues. In his book, Who Cares?, David Schwarts describes the integration of a woman who had spent most of her life in an institution: “Although Nancy and others who had moved with her were physically living in a community, they were actually still almost as isolated as they had been when they had lived in an institution. Just as in an institution, everybody who was involved in their lives was paid to be there…they had no real friends.” This led Schwartz and a colleague to ask community members, church members to get involved. Schwartz labels their role as “askers,” finding that people were happy to get involved, if someone asked, explained the need. Yet, I find, in a society that values independence and autonomy, asking is more often burdensome and stigmatizing. The idea of “askers” may be positive but its practice requires a larger restructuring of society and societal values. The integration of people with disabilities into our communities, their emancipation and that of their caregivers calls for “a restructuring of the workplace to make work schedules far more flexible, career patterns less rigid and predictable and criteria for advancement less destructive to family and community obligations. Such reforms imply interference with the market and a redefinition of success” (Christopher Lasch).
A Canadian governmental survey found that Canadians without “disability labels” generally believe that governments address disability needs. The survey demonstrated that there is little popular understanding of disability issues and a widespread ambivalence towards people with disabilities. The survey illuminates the crucial need for us to understand how we, as a society, treat people with disabilities in order to approach just communities (Prince). As Lasch explains, through time “capitalism came to be identified with immediate gratification and planned obsolescence…a growing impatience with the constraints imposed by long responsibilities and commitments…the right to make a fresh start whenever earlier commitments became unduly burdensome.” For people with disabilities, these attitudes encourage institutionalization and even euthanasia: the removal from society of that and those who seem too “demanding” or too “burdensome.”
Our society decries the murder of female infants in countries where girls are perceived as a burden on the family, and yet, here in Canada, there is widespread support of Robert Latimer, who killed his disabled daughter. The philosophical principles of a liberal, capitalist society where unpaid labour bears social stigma and where independent living and material accumulation mark success suggest that dependent lives are not worth living.
Conclusion
Our quest for local democracy linked with an openness towards the struggles of people with disabilities offers hope for a society that values and includes all people in the “life world” of our communities: a world that is messy, incomplete and unpredictable. Frustration with the shortcomings of western medical institutions, rising rates of disability occurrence due to an accelerating war machine in North America and increasing evidence of how our abuse of nature compromises our health, may, ironically, provide the impetus to create spaces of authentic inclusion. For, as Joe Mancini writes, “the only way to overcome our collective alienation from nature and each other is to create conditions where human relationships flourish, where there is commitment to diversity support…where there is respect for disorderly order.”
Myroslava Tataryn joined The Working Centre two years ago and modeled for us the combined role of receptionist and outreach worker, and has also worked on the Housing Desk. Myroslava leaves for Uganda in March to work for the Stephen Lewis Foundation working with local communities to develop community-based responses to AIDS and disabilities.
