Rethinking Knowledge and Power: Reflections on the Disability Community in Canada

A panel presentation to the Canadian Disability Studies
Association/Association Canadienne des Études sur L'Incapacité
Wilfrid Laurier University
May 31, 2012

Sponsored by OISE/University of Toronto, the Canadian Journal of Disability Studies, the Canadian Philosophical Association, and the Equity and Diversity Portfolio of the Canadian Federation for the Humanities and Social Sciences at Congress 2012

Michael J. Prince
Lansdowne Professor of Social Policy
Faculty of Human and Social Development
University of Victoria
mprince@uvic.ca

Working Draft
Comments welcome

Introduction

It is an honour to have been asked to participate on this panel, along with these highly accomplished colleagues, as part of the Canadian Federation's Equity and Diversity Portfolio's series at Congress 2012. We have been asked to discuss how taking a disability studies approach offers original or imaginative ways to think about knowledge production. To do so, we were invited to reflect on our own experiences and theorize what the future will hold for disabled peoples.

I draw on my own location and experiences within the Canadian disability community as an academic, consultant, and participant. I am, at times, an 'outsider' and at other times an 'insider,' roles that inevitably overlap creating insights as well as tensions. I am an 'insider' in the disability rights movement in that I work closely with certain national disability organizations as well as advise federal and provincial levels of Canadian government and Parliament on disability issues and other social policy topics. From 2004 to 2010, I served as a board member of the British Columbia Association of Community Living, a province-wide federation that advocates for children, youth, and adults with developmental disabilities and their families to ensure justice, rights, and opportunities in all areas of their lives. And, I am an 'outsider' writing as an academic reflecting on the development and absences of policies and programs. For example, I have been involved in writing action plans and generating reform options put forward by national disability organizations. As an outsider, I perform a role as a 'public intellectual,' conducting research on policy and social issues of our times, conveying findings through the media and in presentations to community groups, legislative committees, and administrative officials. As an insider, I perhaps perform a role akin to a 'movement intellectual' (Haluza-Delay 2003), an academic working collaboratively with social movement organizations in developing policy plans, designing reforms, and monitoring trends.

This paper explores the following questions: what kinds of knowledge circulate in and around the disability community in Canada? How does this knowledge connect the disability community with the Canadian state and other institutions in society? And, what might the future hold for more creative and innovative knowledge production for disability studies, disability activism and social change?

My remarks can be summarized in three statements. First, the Canadian disability community comprises several arenas of social action. The community is a diverse sector of service organizations, a policy community of interest groups and coalitions, a comparatively new social movement, a constitutional category of citizens under the Canadian Charter of Rights and Freedoms, and it is a research and knowledge production network (Prince 2009). As a consequence, divergent perspectives on ability/disablement, politics and possibilities circulate within the community, the state and wider society. Disability, knowledge and power may be characterized by a discourse of charitable paternalism, a spiritual humanitarianism, practices of medical expertise, welfare or warfare statism, forbidden narratives, experiential stories versus official rhetoric, and by the effects of systemic oppression.

The second statement is that governments have at their disposal numerous practices that structure social relations, the status of groups, and their life chances. In an assortment of ways and for a variety of reasons, political and bureaucratic officials engage in structuring the production, dissemination, suppression and regulation of information and research. Recognizing the operation of such power dynamics is crucial to a critical study of disability and to a creative rethinking of knowledge.

The third is that thinking of the disability community as a knowledge production network raises implications that should figure in decisions about future research directions and funded projects. Disability Studies must embrace a conception of power and knowledge that acknowledges both negative and productive effects; that takes into account the full range of governing mechanisms and policy instruments at play in state and civil institutions; and, a conception of power and knowledge that recognizes both the continuities and disjunctures in the exercise of authority, and thus the possibilities for resistance and social change.

Disability and Knowledge Circulation, Production, and Contestation

The Canadian disability community can be viewed as consisting of five arenas; that is, five interacting sets of individuals, organizations, ideas, interests, and processes engaged in social actions that affect disability. In part, knowledge production is an input to all these facets of the community; knowledge that supports service provision and administration, litigation or tribunal hearings, government lobbying, and cultural politics.

Specific-impairment organizations are a familiar feature in cities and communities across Canada. As a custom, specific-impairment organizations do not participate directly or regularly in public policy and political processes. Most organizations of this kind are concerned mainly with the provision of services and the acquisition of funds, staff, volunteers, and other resources for running their operations. Most, as well, are locally based non-profit agencies that receive funding and service contracts from governments (Bach 2002). Thus, the disability service community—as distinguished from the disability policy community—includes individuals, groups, and agencies which are primarily or wholly engaged as caregivers, service providers or brokers, referral agents, consumers, and fundraisers. Their main orientation is to their members and clients.

This is not to suggest that these impairment-based service organizations do not have political effects. For example, local service agencies stratify relationships, producing, intentionally or otherwise, a hierarchy or pecking order among clients, front line providers, program managers, and agency executives (McKenzie and Wharf 2010). One profound difference in this service sector concerns the particular disability perspective embraced by specific organizations. An organization may be working in accordance with a perspective on disablement that gives more or less emphasis to biomedical factors, economic and labour market concerns, environmental barriers to integration, or a human rights and equality approach (Bickenbach 1993; Rioux and Valentine 2006).

Personal interactions with disability service agencies in local communities, under the auspices of charities and their public sector counterparts, provide a growing body of critical autobiography, oral history, and other narrative forms by people living with disabilities. This can involve a shared production of knowledge on disability between the editor/researcher and the narrator/storyteller (Church 1995; Crooks 2007; Krause 2005; Moss and Dyck 2002; Raoul et al. 2007; Tremblay et al. 2005). Such narratives connect the private and public domains of a person's life, and cast light on coping and the healing, as well as controlling, provided by community services and by peers and families.

Some traditional care and service agencies are undergoing deliberate changes to adopt new values and innovative approaches, shifting from an ethic of benevolence and compassion towards a philosophy of self-determination and person-centred supports.

In this regard, Lord and Hutchison (2007) distinguish between service agencies with a traditional approach that emphasizes 'client hood' and 'victimhood' among families and individuals living with disabilities, and a new approach ,at least for those agencies, which promotes personal choice and self-determination. It is the latter approach, which is the emerging pathway to social inclusion, especially by 'user-led' and so-called 'consumer-driven' or controlled organizations, such as independent living resource centres, that has arisen in the non-profit sector since the 1970s. Examples of national consumer-driven disability organizations controlled mainly by people with disabilities, are the Alliance for Equality of Blind Canadians, Council of Canadians with Disabilities, People First of Canada, National Network on Mental Health, and the Canadian Association of Independent Living Centres.

A considerable part of disability research is in clinical and pharmaceutical trials, bio-medical studies, engineering research and development, and rehabilitation treatments and protocols. As well, a growing segment of the research community is involved in the area of disability management—with links across business, government, organized labour, medicine, and the insurance industry—addressing issues of recruitment, retention, return-to-work, injury prevention, and workplace accommodations. Frequently, the view of disability here is in terms of health problems and impairments of the individual.

Disability studies programs in Canadian colleges and universities are another part of this arena, one of growing significance. Disability studies scholars and students are producing, critiquing, and disseminating artistic, comparative, historical, and theoretical forms of knowledge on disability and normalcy. Academe evaluates policies and practices as well as assists in bringing to wider audiences the narratives of people and communities. When done in an emancipatory manner, such research enlightens and empowers. When done imaginatively, such work shifts the boundaries between private and public domains, making personal troubles into policy issues, drawing attention to the absolute importance of 'the family' in understanding inclusion/exclusion and citizenship.

Policy-related disability research considers public policy development and program delivery; examines the effects of policies and programs the social environments, life transitions, and opportunity structures of persons with disabilities; and critically assesses conceptions of disability contained in laws and social practices. Intended to be usable by policy makers and practitioners, such research may serve any number of purposes: the definition and understanding of an issue; the more effective response to and management of a need or problem; the resolution or alleviation of a problem or need; the expression of voice by a group and the recognition of their experiences; the empowerment of a group through the research process; and the identification of additional lines of inquiry.

In Canada today, at the national and provincial levels, is a blend of general think tanks and specialized disability-oriented think tanks. Within federal, provincial and territorial governments plus the university sector are departments, agencies, advisory councils, academic programs, and research groups involved in policy-related disability research. In our imperfect system of citizen participation and public accountability, legislative committees are significant political institutions for disability groups and disability policy. Parliamentary committees serve several useful functions for disability policy research and analysis, as well as for the wider disability community: raising and debating issues, engaging with groups in public forums, gathering information, reviewing legislation and considering bills, scrutinizing government performance, and recommending policy developments and program or administrative reforms (Boyce et al 2001; Chivers 2008; McColl and Jongbloed 2006; Valentine and Vickers 1996).

Within Canada's policy research community various perspectives on disability circulate. One perspective, a social model of disability (and variations on that model) appears in the work of the Council of Canadians with Disabilities, Canadian Centre on Disability Studies, Caledon Institute of Social Policy, and university programs such as the Ryerson RBC Institute for Disability Studies Research and Education. This orientation emphasizes the values of equality rights and full citizenship, and usually employs a critical analysis for studying social structures and public policies (Oliver and Barnes 2012). Another perspective prominent in disability research deals with functional impairments, rehabilitation, and integration. Disability management and rehabilitation therapy programs at certain universities reflect this perspective. So, too, do particular research centres on children and health services. In this orientation, people with disabilities commonly appear as individuals with special needs, facing possible risks, with official identities as program clients and care recipients.

Countless associations of different kinds and at different scales populate the disability policy community. On behalf of a cluster of interest groups or service agencies, associations may represent a particular disability, a distinct client group, a specific provincial or regional area, or a functional activity such as legal advocacy. The community differentiates significantly by perspectives and structures. A number of umbrella associations—at national, provincial/ territorial, and urban levels—represent the relevant interests of a constellation of groups. Illustrations are the Canadian Association of the Deaf, the Canadian Hard of Hearing Association, and the Canadian Association for Community Living, the Canadian Association of Muslims with Disabilities, the Manitoba League of Persons with Disabilities, the Ethno-Racial People with Disabilities Coalition of Ontario, and the Action des femmes handicapées in Montreal.

Taken as a whole, both the disability community and the Canadian state contain various perspectives on disablement, some of which are in sharp tension or conflict with one another (Bickenbach 1993; Devlin and Pothier 2006; Titchkosky 2003a).

The Canadian State as a Site of Knowledge/Power

What is the relationship between knowledge, disability and power? And how do we understand the role of the state? Depending on social location and status, and one's assumptions and interests, this relationship of disability, knowledge and power may be characterized by a discourse of charitable paternalism, a spiritual humanitarianism, practices of medical expertise, welfare or warfare statism, forbidden narratives, experiential stories versus official rhetoric, and by the effects of systemic oppression (Bickenbach 1993; Charlton 1998; Church 1995; McCreath 2011; Poole 2011; Vanier 1998).

Disability Studies as a field of academic inquiry, I would suggest, generally characterizes power as exercised in a top-down manner and in having negative consequences for marginalized people. This is unsurprising given the dark history and still troubled conditions of most people with disabilities. In relation to disabled people, this exercise of power has the harmful effects of denying being human and diminishing personhood, ignoring fundamental freedoms and rights, producing absences and reproducing exclusions. In this representation, the core mechanism of power is regulatory - whether delivered in the form of an income benefit, service program or care facility - with intense coercive aspects and punitive results.

In disability activism too, these distressing features of power are recognized. At times, power is additionally conceptualized in more positive terms. Canadian disability groups look to federal and provincial governments, along with city governments, as defenders of human rights, providers of public services, and enablers of social inclusion (McCreath 2011; Prince 2012; Stienstra 2012). The potential of public power is seen in offering affirmative recognition and protection of differences; dismantling barriers and building up supports and services; and shifting public attitudes more favourably toward issues of accessibility, disability and inclusion. In this context, a range governing instruments are targeted by disability movement groups: legislative powers, for sure, as well as program expenditures, income and retail tax measures, public services and community delivery systems, and symbolic resources.

For disabled people and disability organizations, the effects of power can seem all pervasive and unyielding in cultural, economic or environmental terms. Sometimes, however, the deployment of power by the state or other major institutions in society is not so comprehensive and uniform in the way it is exercised. This is because of the history of fragmented program developments which reflects, in part, the range of recognized and contested diagnoses and impairments (Moss and Teghtsoonian 2008; Withers 2012); because of the division of legislative powers between federal and provincial orders of government (Rice and Prince 2012; Stienstra 2012); because of shared responsibility among the sectors of society for disability; and, because of the periodic retrenchment of services and the intermittent reorganization of delivery systems (Bach 2002; Lord and Hutchison 2007). Results involve a fragmentation of knowledges across organizational silos and program systems as well as discontinuities and inequalities in relations of power.

In regards to knowledge on and of disability, state institutions in Canada exercise several methods of manufacturing and managing knowledge. These methods encompass:

• Production of data and the dissemination of information through various social surveys and related articles and reports, typically conducted by Statistics Canada. Since the late 1980s, Statistics Canada has undertaken national surveys of people with disabilities, an initiative widely endorsed by Canadian disability organizations. These surveys, some of which are being terminated to be replaced by other ways of gathering and reporting disability data, yield invaluable information on the lives of children, youth, and adults with disabilities and, in comparing their circumstances to Canadians without disabilities, document the depth of their precarious citizenship. Other administrative data sets reside in provincial workers compensation systems, corporate insurance schemes, and health care facilities, much of it inaccessible or rarely made available to the public. At both levels of government data are also created via contracted work to academics, think tanks and consultants, although such information is not usually publicly available.
• Suppression of information sharing and of knowledge generation and contestation by means of official rules and bureaucratic practices of widespread secrecy and confidentiality or inaccessibility. Failure to provide information in accessible formats and in plain language effectively stifles a straightforward giving out of knowledge relevant to citizens. Other state activities that have suppressive effects include the reluctance or outright refusal by officials (usually because of dictates from political superiors) to engage in meaningful consultations with community groups; retrenchment in funding to groups to be able to participate in such consultations; and, the cancellation of the Court Challenges program, that assisted groups to intervene in strategic cases dealing with equality rights under the Canadian Charter (Prince 2009). These organizational and procedural tactics, which are a form of the mobilization of bias in politics (Schattschneider 1960), have direct consequences for the way issues are defined and priorities established, and by whom.
• Hierarchical classification of knowledge by some scale of evidence-base, scientific rigor and dominant notions of legitimacy. Typically, stories or narratives from individuals or families are at the low end of the hierarchy of evidence, followed by the opinions of stakeholder groups, evidence from a qualitative study, then evidence from a well-designed quantitative analysis, perhaps followed by a precise control trial or cohort study, and then a randomized controlled trial, culminating with a meta-analysis of all applicable evidence-based studies on a topic, group or program. While such hierarchical ordering of information and knowledge is not new, today evidence-based practice is a major trend in nursing, medicine and other areas of clinical work as well as infusing many areas of social policy and practice. One effect of this ordering of knowledge is to eliminate and disqualify as insufficient or unproven "what people know at a local level" (Foucault 2003: 8; also see Foucault 2004 and 2006).
• Regulation of information production and circulation by civil society organizations, in particular registered charities. Tax rules administered by the Canada Revenue Agency on which organizations qualify for registration as a charity and thus eligible to charitable donation tax credits are a thorny issue for the voluntary sector, including disability rights organizations. As Susan Phillips explains: "The determination of status as a charity is important because it enables such organizations to have potentially greater access to resources by providing incentives to give (on both an annual basis and through estate planning), but it is also an important indicator of legitimacy" (Phillips 2006: 130). She adds that: "In spite of a decade of pressure for reform, the federal [Liberal] government … resisted action on … liberalizing restrictions on public policy advocacy by charities" (Phillips 2006: 148). Indeed, the Harper Conservative government is moving to further tighten such restrictions, certainly with respect to environmental non-profit organizations.
• Cooptation or annexation of innovative ideas and critical discourses from community groups and movement organizations into traditional state discourses and ways to thinking. This may optimistically be viewed as a way of renewing a bureaucracy, although it is more frequently interpreted as a classic tactic by government bodies to neutralize perceived threats and to manage challenges from outside groups. Disability studies scholars and activists alike recognize these dangers of appropriation for the disabled people's movement and groups regularly struggle with such risks of collaboration with government officials (Boyce et al. 2001; Oliver and Barnes 2012).

Overall, knowledge of disability should always be thought of in terms of numerous ways of manufacturing, managing and manoeuvring data, information and discourse. The politics of knowledge production is not so much about generating evidence in contrast to ignorance, as it is about multiple forms of knowledge interacting with, and struggling against each other within particular fields of power relationships. One example, briefly, is the tension between evidence-based practice and embodied health movements (Brown et al 2004), in which social movement groups challenge undue reliance on certain scientific accounts and established medical practices. The multiplicity of perspectives on disability—charitable, community-based, humanist/spiritual, medical, rights-focused, social welfare administration—compete and conflict because of their different origins and contending ideas; their separate institutional arrangements and often dissimilar interests; their different objects of analysis and targets of intervention or non-intervention; and, the varied identities and consequences for specific groups of people with disabilities.

The Future for Disability Studies

As an academic field of inquiry in Canada, studying disability is coming of age. Several colleges and universities now have undergraduate and graduate programs in disability studies. In 2004, a network of Canadian researchers, advocates, academics, and policy officials formed the Disability Studies Association/Association Canadienne des Études sur L'Incapacité. In 2011, the Canadian Journal of Disability Studies was established and the first issue arrived in early 2012. Important books in Canadian disability studies have appeared in recent years, including works on the politics of blindness (McCreath 2011), mental health recovery (Poole 2011), disability rights (Stienstra 2012), issues of space and access (Titchkosky 2011), and disability politics and theory (Withers 2012).

A promising part of the future of disability studies lies in remembering the past and in recovering historical knowledge. Written records in the archives and file boxes of disability organizations are a valuable source of knowledge that offers insights. Histories of disability activism are much more than just describing bygone events or recalling forgotten actors, although these are important undertakings for any social movement. Disability history creates a collective vocabulary and memory; a knowledge of struggles and tactics, of setbacks and achievements in services, equal rights and inclusion (Panitch 2007; Reaume 2000 and 2012; Stienstra Wight-Felske 2003; Tremblay, Campbell and Hudson 2005). As a shared knowledge of struggles and successes, disability history can be deployed as a strategic resource within contemporary contexts of policy to inform movement tactics and to possibly modify social relationships and practices (Chivers 2008; Foucault 2003; McKenzie and Wharf 2010).

Such historical knowledge can also serve as a cautionary tale in regards to claims of major shifts in societal beliefs and practices—whether actual or aspirational - from the asylum to independent living (Boyce et al 2001); from charity to parity (McCreath 2011); from stigma to identity politics (Anspach 1979); or from paternalism to rights (Valentine and Vickers 1996). We must carefully probe the material and discursive particulars of any such claims of social progress.

Thinking of the disability community as a knowledge production network raises implications that ought to figure in decisions about future research directions and funded projects. One such consideration centres on attracting organizations into this research community that previously have not been involved, thereby adding new players to the network, such as groups that represent employers, professionals, seniors, or unions. A second is the possibility of using research in the humanities and social sciences for fostering partnerships among organizations in the community and/or with actors in a related policy realm. Another is leveraging resources from the foundation sector, which, in Canada, is not a major source of funding for policy institutes and think tanks.

Still another consideration is to ensure that disability organizations of people with disabilities are adequately included in research agenda setting, resources, processes, and products of policy-related disability research. The ways of actually doing a disability knowledge strategy must involve empowering and inclusive social relations: nothing about us without us (Charlton 1998; Oliver and Barnes 2012). This is absolutely crucial—otherwise, other efforts at expanding capacity could inadvertently result in crowding out and further marginalizing of disability organizations within the research community.

Disability is a social field that contains contending forms of knowledge and agendas of action and inaction. To paraphrase Schattschneider (1960), some ideas and information on disability are organized into public debate and policy making while other ideas and information are organized out of official politics. Going forward, I suggest that Disability Studies embrace a conception of power and knowledge that acknowledges both negative and productive effects; that takes into account the full range of governing mechanisms and policy instruments at play in state and civil institutions; and, a conception of power and knowledge that recognizes both the continuities and disjunctures in the exercise of authority, and thus the possibilities for resistance and social change. Power relations found within disability policy and disability studies are linked to particular forms of knowledge (expert and lay), discourses or political rationalities (official or dominant and oppositional), and social structures (civic, economic, familial, gender/sex, and religious).

Power resources and power effects are rarely distributed evenly. Different interests have distinctive capacities to act, and they articulate diverse ideas and contrasting views of what priorities should be in disability in regards to identities, rights or services. Each viewpoint produces particular power outcomes. Consequently, there are patterns of power over (domination), power with (collaboration or partnerships), and power to (the capability to do or influence something). At times, the structures and processes of power relations may be experienced as non-zero-sum, whereby all participants feel their voice is respectfully heard and their interests have been substantively advanced. More frequently, however, relations of power come across as zero-sum relationships of starkly forced tradeoffs and significantly unequal policy outcomes.

Like other social movements, the Canadian disability movement does emphasize post-materialist values of cultural meaning. Renee Anspach (1979) describes this activism among disabled people as a shift from stigma to identity politics. Anspach uses the term 'identity politics' in reference to altering self- and societal-conceptions of people with disabilities from passive, deviant, and powerless to positive, self-created conceptions for themselves. In contrast to service organizations, such as charitable agencies and self-help groups, disability movement organizations are political in outlook not therapeutic, of the disabled rather than for the disabled, and adopt a more polemical tone in their activities. "Identity politics," Anspach concludes, "is a sort of phenomenological warfare, a struggle over the social meanings attached to attributes rather than an attempt to assimilate these attributes to the dominant meaning structure" (773).

Then again, struggles of the disability movement are not to the exclusion of material issues of employment, accessible education, and income security or of governmental issues of public participation in policy making. A politics of socio-economic redistribution is at the core of disability activism in Canada, complemented by a politics of recognition and a democratic politics of representation, the latter of which involves claims for more accessible, empowering, and accountable policy making structures and processes.

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