University of Toronto Press
Michael J. Prince - Canadian Disability Policy: Still a Hit-and-Miss Affair - The Canadian Journal of Sociology 29:1 The Canadian Journal of Sociology 29.1 (2004) 59-82

Canadian Disability Policy:
Still a Hit-and-Miss Affair

Michael J. Prince


Abstract
When the Canadian record on disability policy-making is reviewed a déjà vu discourse is clearly evident. Assessing disability policy reform over recent decades evokes a strong sense that we have been here before in terms of the problems identified and the promises made. From interviews with disability community leaders and documentary analysis, five explanations for this frustrating pace of reform over the last 25 years are examined. These are public attitudes and the lack of information; the relative powerlessness of the disability community; the constraints of economic thinking and public finances; federal-provincial jurisdictional issues; and the absence of robust accountability mechanisms for disability policy within Canada's welfare state. Drawing on Foucault's concept of governmentality, the article argues that governance arrangements and discursive techniques, and not only programs and benefits, need to be the focus of advocacy and scrutiny by the disability movement and by scholars in disability studies.

Résumé
Lorsque l'on examine le dossier canadien d'élaboration des politiques en matière d'invalidité, l'on ne peut s'empêcher d'être envahi par une impression de déjà vu au niveau du discours. De l'évaluation de la réforme des politiques en matière d'invalidité durant ces dernières décennies se dégage une forte sensation de statu quo quant aux problèmes identifiés et aux promesses réitérées. À partir d'analyses documentaires et d'entrevues avec des chefs de file de la communauté des personnes handicapées, ce document propose cinq explications de la lenteur frustrante des réformes au cours des 25 dernières années. Il s'agit des attitudes du public et de son manque d'information; de la relative impuissance de la communauté des personnes handicapées; des contraintes imposées par la pensée économique et les finances publiques; des questions liées aux disputes en matière de juridiction entre le fédéral et le provincial; et de l'absence de mécanismes solides de responsabilisation quant aux politiques relatives à l'invalidité au sein de l'État-providence canadien. En se basant sur le concept foucaultien de gouvernementalité, cet article avance qu'il est essentiel que le mouvement des personnes handicapées et les chercheurs dans le domaine de l'invalidité concentrent leurs efforts de représentation et d'examen sur les mesures de gouvernance et les techniques discursives, et non pas seulement sur les programmes et les avantages à l'intention des personnes handicapées. [End Page 59]



A quarter century ago, a major Canadian study on policies and programs for people with disabilities was aptly entitled A Hit-and-Miss Affair (Brown, 1977). Prepared for the Canadian Council on Social Development, the inquiry sought to discover what was happening in services and programs for people with physical disabilities across the country. Looking at the total policy system, Brown found that the network of policies for Canadians with disabilities was not functioning effectively. Gaps in service provision, late referrals and inadequate follow-up programs, insufficient linkages among social programs, and incomplete information systems were among the barriers. Brown concluded her study with two strong impressions: "The first was that there is a lively awareness of the many deficiencies in policies for disabled people in Canada together with a desire for constructive change. The second was a strong sense of frustration that the need to change is not being given an adequate priority at the level where decisions must be made" (Brown, 1977: 548). A growing awareness of the need for change coupled with a strong frustration with inadequate policy action meant that addressing the needs and rights of Canadians with disabilities was a hit-and-miss affair.

This description of the policy setting, I will argue, remains a fair portrayal of Canadian disability programs and services, especially so from the perspective of groups of, and for persons with disabilities. Why has there been relatively slow movement on the disability agenda in Canada in recent decades? To explore this question, the paper examines reports and observations by various disability community groups and parliamentary committees that critique the Canadian government's disability policy record since the early 1980s, spanning the International Year of Disabled Persons of 1981 to the current context in the early 2000s. 1 The slow pace of reform is evident by what I call the déjà vu discourse on disability reform and the disability issues circle.

Traditionally, disability studies as a field of inquiry included relatively little analysis of public sector governance and related policy processes. Canadian social science was a clear example of this custom that, happily, is changing with major contributions to problematizing the way people with disabilities and their experiences have been studied or ignored (Bickenbach, 1993; Enns, 1999; Titchkosky, 2000 and 2003; Cameron and Valentine, 2001). A key premise of [End Page 60] this article is that matters of governance and public policy are major determinants of the sluggish pace of reform. The paper therefore identifies several interrelated factors for why we are still a long way from meeting disability policy commitments on the Canadian government's agenda. Foucault's concepts of bio-politics and governmentality are used to inform the analysis and interpretation of this state of affairs. Following Foucault, the paper asks: What is conducting our conduct of people with disabilities in Canada? What, in other terms, is governing the governance of disability issues and claims?

The Significance of Disabilities and Disability Studies: Sociological and Otherwise

Disability is a personal experience and public issue of great significance in Canada. In 2001, an estimated 3.6 million people in Canada, or 12.4 per cent of the population reported some level and type of disability. For the purposes of this national survey, persons with disabilities are those persons with reported difficulties with daily living activities, or who indicated that a mental or physical condition or a health problem reduced the kind or amount of activities they could do. 2 Evidence in Canada and other countries suggests that both the number and severity of disabilities increases with age. As the population ages over the coming decades, the incidence of disability can be expected to increase as well. In the adult population in 2001, among Canadians aged 15 and over, an estimated 14.6 per cent reported a disability; of those in the 45 to 64 age group, an estimated 16.7 per cent reported a disability; and, among seniors, 40.5 per cent reported a disability. Among Aboriginal peoples in Canada, almost one-third of adults report a disability, more than twice the national average (Canada, 2002; Statistics Canada, 2002).

Compared to persons without disabilities, adults with disabilities in Canada tend to have lower levels of education, far higher rates of unemployment, lower earnings and lower household incomes. Persons with disabilities face further serious challenges of accessibility and affordability of housing, health care, transportation, learning, training and employment opportunities (Rioux and Prince, 2002).

As a field of academic inquiry, disability studies, while multidisciplinary, has a strong sociological foundation, paying close attention to the dynamics and interrelationships among various institutions, groups, and societal practices and processes (Barnes, Oliver and Barton, 2002; Prince, 2001a). Disability [End Page 61] studies and disability policies relate directly to central issues in contemporary sociology: stigma, normalcy and the role of the body; the politics of identity, recognition and difference; conceptual and discursive practices of power; and challenges of framing and achieving social change (Goffman, 1963; Kallen, 1989; Morris, 1992; Titchkosky, 2000, 2001 and 2003; Turner, 1986).

In examining the welfare state, the role of bureaucracies, and the struggles for citizenship, disability studies contributes to Canadian perspectives on political sociology, public administration and social policy (Baer, 2002; Cameron and Valentine, 2001; Prince, 2002; Rioux and Prince, 2002). A political sociology perspective, for instance, recognizes the unequal distribution of power and influence in policy processes and governance regimes. It acknowledges that certain individuals and groups are economically and socially disadvantaged; and, that the politics of policy reform include both the organized mobilization for, and resistance to social change.

A socio-political model of disability fits well with this outlook. This model holds that attitudinal, economic market, legal and policy barriers, rather than physical and developmental limitations, are the main difficulties preventing people with disabilities from participating fully in society (Oliver, 1990; Finkelstein, 1980; Zola, 1982). In this model, reform concentrates on altering environmental barriers, changing attitudes and programs, plus advancing human rights. The focus of analysis and action, therefore, is on the state and ruling practices rather than solely or even primarily on individuals with disabilities and their families. Thus, disability studies promises empirical and theoretical payoffs for social scientists working in this or other policy domains.

Conceptual Framework: The Governmentality of Disability Policy

Fox and Willis (1989: 1) describe the phrase disability policy as "a convenient and recognizable, though still inadequate way, to characterize interventions that seek to enable people with impairments to live in ways that are personally satisfying and socially useful." From this conventional perspective, as they call it, disability policy is about methods and processes, and about what interventions are available or desirable. Disability is identified as a category of social need and as a threat to personal well-being and family security. Disability policy making is about formulating programs and providing services for people in need who have disabilities or who are at risk of developing a disabling condition. In turn, disability policy analysis involves describing and explaining the goals, instruments, and processes of these interventions.

By contrast, from the perspective of people with disabilities, disability policy is about addressing results and focusing on "what people aspire, or could aspire, to do." Disability policy making is, or should be, about "enabling people to function in and contribute to society" and about addressing "what [End Page 62] individuals should be enabled to do for themselves and for others" (Fox and Willis, 1989: 3). Thus, policy analysis from this perspective involves examining and assessing the impact of all programs on the aspirations and capacities of people with disabilities, their families and related networks. This can be described as a disability perspective.

While aspects of both the conventional and disability perspectives are evident, the argument presented here is that the traditional perspective still dominates Canadian policies, programs and popular discourse. Disability policy in Canada traditionally has been, and remains largely today, a dimension of the health, education, social services, and income security fields. But it is more than these programs. Along with providing programs and services, redistributing income, and regulating behaviours, disability policy entails constructing a discourse through the creation of structures and practices. The official delineation of disability policy in terms of vocabulary, scope, and priority is a fundamental part of the governance process.

This article offers a critique of the official textual representation of Canada's disability policy record over the last 20 years, drawing on Michel Foucault's concepts of bio-politics and governmentality. Disability policy is surely an aspect of what Foucault termed bio-politics, that is, to the strategic organization of power and knowledge to manage health problems and needs, among other issues, in the life of individuals and of the population (Foucault, 1980; Tremain, 2001; Titchkosky, 2003). Obvious examples in disability services are the needs of parents caring for children with disabilities for a range of technical and medical supports, personal respite, and other resources.

Governmentality, in Foucault's words, is "the conduct of our conduct" (Foucault, 1980). A central insight of Foucault is that the modern state is not a singular entity nor is it an omnipotent leviathan. People are citizens of a state rather than subjects of a sovereign (Burchell, Gordon and Miller, 1991; Dean, 1999; Martin, Gutman and Hutton, 1988). Though still a powerful institution in modern societies, the state both divides and shares governing power. Sovereignty has given way to governmentality, yielding a network of explicit and hidden power relations. Rules and practices governing individuals operate in and through various state and non-state institutions, organizations, tactics and procedures. The population is the primary object of political action, with state activities designed at managing the economic life, health, civil order and social mores of society. With this focus on bio-politics, the state becomes "governmentalized," that is, more administrative in orientation, structure and work. Power is exercised by inducing people to seek self-improvement and advancement. It is also exercised through a political and bureaucratic rationality depicting and thus controlling people by the use of countless categories and sub-categories for the purposes of policy and program eligibility or exclusion (Faubian, 1994). Persons with disabilities are thus constructed as a "unit [End Page 63] of the population — deserving special attention, but always with reference to ... the larger social aggregate" (Clifford, 2001:111).

With the administrative state exists a dominant discourse, an organization of knowledge, based on values, interests and practices associated with the market economy and medical science. These ways of framing issues and labeling people are encoded in files and records across the ensemble of institutions and organizations in society. As we will see, this governing discourse contains strategic accounts of what has happened to date in disability policy reform, what the status quo therefore looks like according to those in government, and what possible actions may lay ahead.

Canada's Disability Policy Record: 1981 to 2001

Frustration and disappointment are two major themes running through studies by advocacy groups, community service organizations and legislative reports on Canadian disability policy over the past two decades. Repeated reports by parliamentary committees at the federal level, along with reports by national disability organizations, Aboriginal groups, reviews by academics, and children's rights groups tend to be unfavorable (Council of Canadians with Disabilities, 1996 and 1999). They are disapproving of inaction by government on many disability issues, the incomplete implementation of promised reforms, and the apparent inattentionby government officials to the adverse effects of other policy decisions on people with disabilities. In addition, groups are critical of the disconnection between children with disabilities and their families from both the broader disability agenda and the National Children's Agenda (Prince, 2002).

"In critical ways," the Standing Committee on Human Rights and the Status of Disabled Persons (House of Commons, 1990a: 5) observed, the "achievements of the 1980s lived up to expectations. Pre-eminent among the advances for persons with disabilities was constitutional recognition. The inclusion of disabled persons in Section 15(1) and (2) of the Canadian Charter of Rights and Freedoms remains an outstanding achievement of Canadian governments — both federal and provincial." In fact, the authors of the achievement were disability groups. The original version of the Charter, proposed by the federal government in October 1980 did not include any reference to "mental and physical disability" as specific grounds of discrimination. The phrase was added to the final version of April 1981 after strong and persistent lobbying by disability organizations, which was supported by other social groups. The successful inclusion of this Charter guarantee of equality came from their struggle (Boyce, et al. 2001).

The Standing Committee also said of the 1980s, "we have seen new levels of awareness and sincere, if sometimes, patronizing goodwill. While there have [End Page 64] been some noteworthy achievements, progress has overall been modest. ... Sadly, the range of issues remains substantially undiminished. ... What is plainly needed now is action" (House of Commons, 1990a: 1, 3). In a follow-up report, later that year the Committee frankly stated in reply to a government response to their earlier report: "A convincing message that the government means business is still needed in the area of disability. ... Disabled persons are not, and have not been, a priority. Our report also sets out how successive governments have been ineffective in carrying out actions that would demonstrate priority action" (House of Commons, 1990b: 3, 4).

Five years later, the Standing Committee on Human Rights and the Status of Disabled Persons offered a blunt assessment of the 1991-96 National Strategy for the Integration of Disabled Persons, close to winding up at that stage. The Committee concluded that, "the National Strategy was not a 'strategy' but a series of 'tactics.' Consequently, the problems of leadership, coordination, and collaboration for various players within the government remain unsolved" (House of Commons, 1995: 11). Rather than a regime of policy coordination, the federal strategy was seen to be a loose set of marginal programmatic activities. A leading text on Canadian social policy reached a similar conclusion at around the same time: "Canada has no overall framework for social justice for persons with disabilities and, unlike for seniors or the unemployed, has never aspired to build one" (Armitage, 1996: 76).

These critiques and, more importantly, similar criticisms coming loudly from the disability community prompted the federal government to establish a Task Force on Disability Issues in 1996. The creation of the Task Force on Disability Issues was prompted by the federal government's response to the House of Commons Standing Committee report on the National Strategy for the Integration of Persons with Disabilities. The government response put forward the message, echoed by the then Minister of Human Resources Development Canada (HRDC), Doug Young, that there was little if any future role for the federal government in disability issues. This created considerable unrest in the disability community, and among Liberal MPs. This political backlash to Ottawa's apparent retreat on disability policy led to the involvement of the Prime Minister's Office and the idea of creating the Task Force.

A submission to the Task Force by the Council of Canadians with Disabilities argued a position shared by many other groups. The Council stated that Ottawa had abandoned Canadians with disabilities and that disability issues were conspicuously absent from Canada's political agenda (Council of Canadians with Disabilities, 1996). Largely in response to this critique and associated lobbying, in October 1998, the federal, provincial and territorial governments released In Unison: A Canadian Approach to Disability Issues. Articulating what government officials called a "new approach" to disability issues, the document speaks of governments agreeing to work toward a [End Page 65] "holistic and multisectoral approach to reform" (Federal-Provincial-Territorial Ministers Responsible for Social Services, 1998).

In November 1999, a coalition of disability organizations presented to Canadian governments A National Strategy for Persons with Disabilities: The Community Definition. "In recent years," the coalition noted, "the community of persons with disabilities has witnessed an approach to disability issues which is piecemeal and uncoordinated, favoring 'disability initiatives' and 'special projects' which do not have sufficient scope or depth to achieve the equality promised in the Charter of Rights and Freedoms" (Council of Canadians with Disabilities, 1999: 1). Here the coalition is touching on governmentality, on the way governments in Canada conceptualize their conduct of disability issues. The coalition's concern is that the federal and provincial governments are approaching disability from the conventional perspective (Fox and Willis, 1989) with a series of specific interventions to address specific needs, rather than adopt a human rights and equality perspective.

In Unison and related government documents are responding chiefly to persons with disabilities of working age, largely ignoring issues concerning children with disabilities and their families. A November 1999 report from the Canadian Coalition for the Rights of Children entitled How Does Canada Measure Up? was sharply critical of the treatment of various groups of children, especially children with disabilities. The Coalition argued that children with disabilities have varying opportunities to live full and decent lives and the supports they need are not considered an entitlement but are framed as a private privilege. Many families of children with disabilities do not receive adequate assistance. Early identification of needs and the provision of suitable services are not universally available, and the right to appropriate education in the most enabling environment is not guaranteed. Parliamentarians have tended to agree with such critiques. In June 2001, a joint report from the Sub-Committee on Children and Youth at Risk and the Sub-Committee on the Status of Persons with Disabilities concluded that, "while progress may be occurring, it is painfully slow and not without setbacks" (House of Commons, 2001: 14).

The Déjà vu Discourse on Disability Reform

After two decades of disability policy making, there is a strong sense that we have been here before. I call this phenomenon the deja vu discourse of disability. It entails the official declaration of plans and promises by governments and other public authorities, followed by external reviews of the record, and then official responses with a reiteration of previously stated plans and promises. To illustrate this déjà vu discourse on disability reform, two examples are presented, first, policies for Aboriginal children with disabilities [End Page 66] and, second, the idea of a disability lens for the policy process. Both cases, while briefly presented, exemplify a broader pattern of ideas proposed before by a number of committees and task forces.

Policies for Aboriginal Children with Disabilities

In a follow-up to their Obstacles Report,the House of Commons Special Committee first addressed the matter of native people and disabilities in the early 1980s. The Committee concluded there was considerable evidence to show that "federal departments do not consult among themselves in a systematic fashion when implementing policies and programs which affect Native people." The effect of this non-consultation, the Committee pointed out, was "wasted money and effort on the Government side, and confusion and mistrust on the part of those Native persons whom the efforts are intended to help" (House of Commons, 1981a: 11, 12).

The next parliamentary report on Aboriginal people with disabilities, called Completing the Circle, was released in 1993. This report echoed the problems of confusion and mistrust identified in the first report of the early 1980s: "Arbitrary legal classifications, such as those that separate status from non-status Indians, have too often served to confuse and complicate the lives of Aboriginal people with disabilities. Such barriers to progress must be eliminated" (House of Commons, 1993: v). Alluding to the repetitive cycle of policy talk, the Committee noted that, "while some things have changed since 1981, there has been little measurable progress in many areas" and that "over and over again, Aboriginal people with disabilities recounted their skepticism about promises made by the federal government. Talk has been plentiful, but actions have been few and far between" (House of Commons, 1993: 5, 6). Concerns of a lack of cohesive action in the federal government were again mentioned in promoting better lives for Aboriginal people with disabilities (House of Commons, 1993: 18).

A National Strategy developed in 1999 by disability organizations remarked that persons with disabilities within the First Nation, Métis, and Inuit communities "are faced with a confusing web of programs and eligibility requirements. As a starting point, responsibilities and eligibility rules should be reviewed and clarified, in consultation with the community of persons served by these programs" (Council of Canadians with Disabilities, 1999: 5). Once more, we read of the problems of arbitrary program categories, client confusion, and poor coordination within government, jurisdictional challenges, and insufficient consultation with affected communities. Starting in the fall of 2001, the Sub-Committees on Children and Youth at Risk and the Status of Persons with Disabilities, of the federal Parliament, began examining the circumstances of Aboriginal children from birth to age 12, including Aboriginal [End Page 67] children with disabilities, which the Sub-Committee calls "both a classic horizontal issue, and an issue in which the most vulnerable members of society "fall through the cracks" of our existing policies and programs" (House of Commons, 2001: 20-21).

A Disability Lens for the Policy Process

The idea of a "disability lens" for the public policy-making processes of the federal government is another case of a proposal oft repeated over the last 20 years but yet to be implemented. The 1981 Obstacles Report observed that most federal decisions are taken without regard to their impact upon the lives of children, youth and adults with disabilities. Accordingly, the Committee recommended that the federal government establish a review at the cabinet level similar to that for the Status of Women, which would ensure ongoing consideration of the concerns of people with disabilities, including children and their families. The government's response at the time was one of general interest and an expressed intention to explore implementing the proposal. Three governments and 14 years later, another parliamentary committee reached a similar finding. "Federal institutions have not succeeded in bringing about the systemic changes that are required to build disability-related concerns into the basic premises that guide policy formulation and programme implementation" (House of Commons, 1995: 5). That Committee recommended that, "all memoranda to cabinet and other relevant cabinet documents should immediately include a mandatory section that assesses the impact of any proposed measure on persons with disabilities" (House of Commons, 1995: 22).

Four years later, yet another parliamentary committee found that as ministers outlined their departmental activities to the committee, members "could not but notice the uneven understanding and uncoordinated activities undertaken by the various federal departments." In addition, "many decisions about the nature of initiatives ... fail to take people with disabilities into account." The committee proposed that, "using a disability lens on government policies, programs and legislation could assist in breaking down the barriers between government departments and programs" (House of Commons, 1999: 2). Disability organizations have made a similar plea for an "access and inclusion lens" to be "applied to all activities of all governments, from human resources practices to the broad range of programs delivered" (Council of Canadians with Disabilities, 1999: 4). As of 2003, federal officials were still studying the concept of an access lens and how to introduce it to Ottawa's administrative and policy practices.

Along with being about words, déjà vu discourse includes a series of practices by various governmental and political actors: actions, inaction, and reactions. In disability policy, governmental practices of déjà vu discourse have included the following strategies or tactics: [End Page 68]

  • Stressing gains made on the surface while overlooking the structural gaps;
  • Consciously not taking action on further measures, an example of non-decision making;
  • Downplaying disability as a human rights issue and, at times, discrediting the use of litigation and the Charter of Rights and Freedoms to advance equality and equity claims; and,
  • Promising additional actions, often in unspecified tomorrows, to be taken up, in accordance with the principles of limited government and shared social responsibility, by various institutions and groups.

Laden with values and power relations, this discourse aims to discipline the way people in the general population as well as in the disability community think about what to date has been accomplished, what remains to be done and to what ends, by what methods and processes, over what time frame, and by whom. For state officials, déjà vu discourse offers a political and bureaucratic rationality for producing forceful responses to these core questions of governing (Foucault, 1980).

Disability policy analysis, advocacy and evaluation seem to circle back to the beginning, time and again. Consumer and advocacy groups that have participated over this period have no doubt become more cynical. They also have learned to recast issues and ideas in different ways, tailor analysis and advocacy to shifting contexts, and to come equipped with data where possible. As yet, we have not been able to break free from this déjà vu discourse to make significant advances in the policy agenda for children with disabilities and their families. Possible ways of overcoming this frustrating circle and advancing a policy reform agenda bring us back to matters of governance.

Governmentality: How the Canadian State Conducts the Conduct of Disability Policy Reform

Why we are still a long way from meeting prior commitments to coordinate reforms and provide concrete resources for children and adults with disabilities? Why is disability not a fundamental policy priority for governments? Why, in other words, are we trapped in a déjà vu discourse? These are questions regularly posed and examined by legislators, disability advocates and clients — but rarely so by governments. At times, governments touch upon these questions in responses to parliamentary reports and critiques by disability groups and by child and family organizations.

The archetypal position of governments, found in official texts, contains several elements. 3 First, governments claim they do have a vision for disability [End Page 69] issues and, more fundamentally, for people with disabilities. This vision is of an inclusive society, as articulated in various documents including In Unison, the Social Union Framework Agreement, Future Directions,and various Throne Speeches. Federal and provincial governments point out that they have assumed leadership for disability issues over the years. Significant actions taken by Ottawa alone and in conjunction with other governments and sectors, helped build an extensive range of activities for removing barriers and offering opportunities. Consequently, the disability domain looks quite different in the early 2000s than it did in 1981, though deplorable conditions persist.

Canadian governments admit that there is much more to do on disability issues in Canada, that the agenda remains unfinished. In a basic sense, it always will be. The policy agenda changes and grows as public attitudes and perspectives on disability evolve, and it adjusts in response to program developments, pilot projects, and court cases, among other factors. Government officials also argue that realizing the vision of citizenship — the full participation of people with disabilities within Canadian society — is a responsibility shared among all sectors, and not the sole responsibility of governments and the state.

Getting people with disabilities on the agendas of governments in the form of plans and strategies is one thing. Receiving serious attention and sustained action by policy-makers and officials is quite another. For example, the 1991-96 National Strategy for the Integration of Persons with Disabilities, a deputy ministers committee on issues concerning persons with disabilities was established, but it met infrequently. This coordinating function was delegated to a committee of assistant deputy ministers who, in many cases, further delegated this role to more junior departmental officials. Over time, this invariably led to a diminished commitment by senior management and cabinet ministers to coordinated action across federal government agencies and departments.

This official narrative or story line by governments comprises a significant part of the governmentality of disability, involving the use of various techniques by authorities for taking some action, abridging other actions and not taking some action at all in relation to Canadians with disabilities. A close and critical examination of governmental depictions of Canada's disability policy record reveals there has been more advancement in certain jurisdictions, in certain policy sectors, and in certain time-periods than in others. Some progress has been made in the areas of shelter and transportation but relatively less in income maintenance and home support services (Prince, 2001b; Valentine, 2001).

Disability organizations, community advocates and parliamentarians mention a number of explanations for this differential pattern and frustrating pace of reform. I have grouped these explanations into five types. These are the [End Page 70] public attitudes and lack of information; the relative powerlessness of the disability community; the constraints of the economic context and public finances; federalism in the form of inter-jurisdictional bargaining, buck-passing and suspicions; and bureaucratic factors and weak accountability mechanisms.

Public Attitudes and Lack of Information

Established public beliefs and lack of awareness is one factor noted by government officials among others to account for limited policy reform and social change. Public interest in, and support for disability-related initiatives for children and adults seems favourable but diffuse. Jenny Morris explains, "The experience of aging, of being ill, of being in pain, of physical and intellectual limitations, are all part of the experience of living. Fear of all these things, however, means that there is little cultural representation, which creates an understanding of their subjective reality" (Morris, 1992: 164). The federal government's strategy paper on disability, Future Directions, has similarly observed that "attitudinal barriers ... still exist among many people who do not understand that persons with disabilities can and do make a positive and meaningful contribution to our society" (Canada, 1999a).

This explanation reflects traditional sociological analyses of disability, which emphasize bodily impairments, normalcy and stigma (Titchosky, 2000 and 2001). When compared against societal standards of what is regarded as "normal," an image promoted through advertising, the mass media and general discourse, people with disabilities experience "precarious social identities," resulting at times in segregation, sterilization, disqualification of citizenship rights, and denial of "full social acceptance" (Goffman 1963; Prince 2001b). It must be noted too, that other beliefs such as, 'the child is the responsibility of the parent(s)' and that, 'women are the primary caregivers in families' are further deep-rooted attitudinal barriers to adequate services for, and properly valued work by families and caregivers (Beauvais and Jenson, 2000). Surveys continue to find that unpaid female family members and friends do most of the caring work, including the provision of disability-related supports (Statistics Canada, 2002).

As well, information about the nature and extent of disability among Canadians, children more specifically, and especially Aboriginal children and youth is outdated, incomplete or even inaccurate, although there have been some modest improvements in recent years (Canada 2002; Statistics Canada 2002). For close to 20 years now, mental health programs and services for children and youth have been topics of policy discussions in Canada, but we still lack adequate information on the well being of children (Mahon, 2001). Likewise, the state of data on program expenditures for children with disabilities, whether for a specific budgetary year, over time or across jurisdictions, [End Page 71] is appalling. We simply do not know how much or little in public resources are devoted to fostering the full inclusion and equal opportunities of children with disabilities.

Policy is often based on the knowledge derived from data. No data, no problems to address. Until quite recently, the Health Activity Limitation Survey (HALS) survey of 1991 was the only national survey on disability topics. A follow-up survey planned for 1996 was cancelled due to budget cuts. After extensive lobbying and discussion, led by the Canadian Institute of Child Health, a survey was done in 2001 called Participation Activity Limitation Survey (PALS). The change in focus from HALS to PALS and the fact that a new round of current information is presently being generated is an important aspect of the social policy process (Statistics Canada 2002). Also in 2001 an Aboriginal Peoples Survey II (APS) was conducted as a post-census survey, a follow-up to one done in 1991.

Such attitudinal, cultural and informational features have important public policy implications. As a parliamentary committee noted not long ago, "the Canadian public needs to be educated or disability issues will fall off the public, and political agenda" (House of Commons, 1999: 1). To promote change in the attitudes and awareness of Canadians, the disability community has a necessary part to play, although the public sector has a fundamentally central role in partnership with other sectors. Many attitudinal barriers and cultural biases are embedded in programs, policy designs, administrative data sets, and service delivery systems. The classic paradigm in social policy of the "worthy poor" remains in effect today across many program files, with the result of excluding or segregating disability issues and people with disabilities from the public domain (Rioux and Prince, 2002). This problematic positioning is repeated with the marginal status of disability studies in most universities and think tanks in Canada.

The Relative Powerlessness of Children with Disabilities and their Families

Bio-politics and the governmentality perspective relate to this explanation by pointing out inequalities in the distribution of power, opportunities, conditions and life chances. Groups representing children or youth with disabilities are generally far less powerful than business and industry groups and even other social policy groups representing, for example, broader health care or education interests. Some disability studies also call attention to the existence of multiple conceptions of, and organizations for disability. This multiplicity and diversity fragments somewhat the disability movement that can have the consequence of diminishing their effectiveness.

Most disability, family or parent groups lack regular and easy access to senior government decision makers and, in the aftermath of program cutbacks [End Page 72] in the 1990s and more recently, relations of trust between governments and the disability community are weak and in a process of rebuilding. This relative powerlessness reflects the highly marginalized status of children with disabilities and their families, whether measured by income, employment, educational attainment, or the absence of supports and incentives. These multiple dimensions of subordinate status translate into marginal resources and limited capacity for influencing governments and other governance regimes. Moreover, coalition building and networking with other social groups has not been as advanced as might be. Writing in the early 1990s, Brian Wharf commented that, "the powerful social movements — labour, women, and First Nations — have neglected child welfare. In a very real sense children are the orphans of the major social movements in Canada" (Wharf, 1993: 103). A decade later, this remains the case for children with disabilities.

That policy reform processes generate resistance to the intended social or economic changes is a basic fact of political life. This political truism seems especially the case when a group actively seeks new or enhanced rights of citizenship. Bryan Turner has written that "citizenship provides a challenge to existing patterns of power and authority and therefore any growth of citizenship will be met with political struggles by dominant groups to preserve their advantages within the status quo" (Turner, 1986: 104). In disability policy, the drive to achieve greater inclusion within school systems, introduce a comprehensive disability income insurance plan, and strengthen human rights provisions have all been met with some resistance by various interests (Morris, 1992; Prince, 2001a).

The Constraints of the Economic Context and Public Finances

For most of the last 20 years in Canada, fiscal austerity, deficit reduction, public service downsizing have been profound drivers of the public policy context for all issues, including disability issues. This period was marked also by two serious recessions in the Canadian economy. These events and priority concerns both reflected and reinforced broader shifts in policy thinking (evident across many nations), away from state intervention and social issues, and toward market approaches and economic issues. Consequently, "proposals for persons with disabilities have not formed a prominent part of the debate on the future of redistributive social policy. This is partly because their relationship to issues of the global economy is slight, and partly because of the way issues of equity have been sidelined by economic issues" (Armitage, 1996: 77).

Part of the reason that children with disabilities have been ignored or insufficiently linked with the wider disability and children's agendas is that when "welfare" left Health and Welfare Canada in 1993 and became part of the then newly formed HRDC, and responsibility for disability went with it, the [End Page 73] federal government's focus on disability has centred on employability. This emphasis on employability is part of the federal government's broader theme in social policy of "investing in people." Certainly, expenditure implications associated with major program reforms have been and remain a significant factor in government thinking. The great unstated concern deals with the worry of what economists call the "moral hazard" of social programs, especially insurance programs for certain risks. The theory behind this notion, and hence the worry by officials, is that establishing or expanding programs will give people more of an incentive to self-identify as having a disability and, conversely, less of an incentive to avoid risks that may produce a claim for compensation. This perspective is rarely stated in documents or given emphasis in public by policy makers. This does not mean, however, that it is not a concern of government bureaucracies. Proponents for reform, however, believe that financial costs to the public purse have been overplayed and used as an excuse to avoid taking responsibility and demonstrating leadership on matters of equality. Emphasizing costs to the public purse tends to ignore the human costs and social benefits, and to downplay the financial costs to private household budgets in caring and advocating for children with disabilities. 4

Federalism in the Form of Inter-Jurisdictional Bargaining, Buck-Passing and Suspicions

Delays and inaction in implementing child rights and disability reform plans are partly explained by the need for federal-provincial agreement on a number of recommendations put forward by parliamentary committees, children's groups, disability groups and government advisers. Inter-jurisdictional agenda setting, planning and bargaining take time. Also critical is that most disability groups in Canada, even provincial and national associations, feel powerless in dealing with federal/provincial/territorial working groups of officials, lacking the information and capacity to penetrate this labyrinth of intergovernmental relationships.

For international statements of human rights for people with disabilities to have the force of law in Canada, they must be accepted by the federal, provincial and territorial governments and incorporated into various statutes. [End Page 74] Evelyn Kallen makes the important point that: "Canada's adoption of the declaration, covenants, and protocol does not automatically update the rules, policies, and laws of every company, organization, and level of government in the country. At every level of Canadian society there are formal regulations and informal practices that are contrary to the principles of human rights. Violations of omission and commission in the innumerable laws and regulations enacted in the past require considerable time and attention in order to be properly redrafted so as to conform fully with international human-rights principles" (Kallen, 1989: 12).

The division of powers associated with federalism presents incredible complications and jurisdictional barriers for Aboriginal peoples of all ages with disabilities. In particular, there is ongoing buck-passing between the two orders of government over which order is responsible for funding and providing services for urban-based Aboriginal children, youth and adults living in cities rather than on reserves (Prince and Abele, 2000). Moreover, there is a residue of suspicion by provinces toward the federal government because of past federal initiatives that were followed by unilateral cuts in transfers. Thus, in the new post-deficit era, provinces may see an examination of broader reforms as a federal attempt to increase its influence in the disability, health or family policy sectors, all of which are primarily provincial jurisdiction.

Federalism, to be sure, is a fundamental feature of the regime of public power in Canada. The close and ongoing contact between the two orders of sovereign governments, involving a mixture of techniques and processes in cooperation and conflict, can therefore be regarded as a defining element of governmentality. By and large the population accepts the authority of both the federal state and provincial states, and are compelled to accept the various agreements reached between the political elite of each order on matters of social, economic and fiscal policy.

Bureaucratic Factors and Weak Accountability Mechanisms

The structure and operation of the government is widely and continually cited as a major reason for the delays and modest results in addressing the concerns of Canadians with disabilities. Indeed, this is probably the most oft repeated reason cited by disability groups, child and family organizations, and parliamentarians for the lack of substantial and sustained action on disability issues by government. Governments generally seem unable to deal effectively with cross-departmental or horizontal issues (Savoie, 1999; House of Commons, 2001). And with disability and children, we have two such horizontal issues.

As an early report stated, "the crucial obstacles which prevent the Government of Canada from responding directly, appropriately, and continually [End Page 75] to the needs of more than two million Canadians have nothing to do with motivation. They have to do with the systems of communication, organizations and decision-making within the Government of Canada, and within Canadian society in general" (1981a: 5-6). A 1990 report by the relevant standing committee made a related observation: "The absence, within the federal government, of an effective and accountable mechanism for change is one important reason why Canada's commitments to people with disabilities remain only partially fulfilled" (House of Commons, 1990a: 33). A subsequent report on Aboriginal peoples with disabilities was far more critical. It stated the federal government had taken "a strikingly fragmented approach" with responsibility scattered amongst different departments and programs, "turf wars among bureaucrats," and "definitely no concentrated focus on disability." This fragmented focus was "a clear illustration of the ad hoc approach that departments are taking to the needs of people ... with disabilities" (House of Commons, 1993: 13, 17). The Scott Task Force report employed more temperate language, but the message was similar.

Because disability issues cut across the federal government's organizational lines, they often get lost in a bureaucratic shuffle. In some instances, a positive action by one department may be lost because of the inaction of another that unintentionally cancels out the first. In other cases, a department may have the will to act but needs the support and input of others to get the job done. While government departments are able to join forces to meet disability-related goals, it is important to establish clear lines of accountability at the federal level

(Canada, 1996: 25).

Parliamentary committee reviews of federal disability policy done in 1999 and 2001 again focus on the processes and structures of government. The committee reported a "lack of departmental responsibilities, an absence of strong program structures, fragmented service development and inconsistent standards" (House of Commons, 1999: 18; House of Commons, 2001). Matters of access and inclusion for children, youth and adults with disabilities are not routinely a part of legislative and policy and program development. The lack of input by disability and family organizations in setting goals and desired outcomes compounds this problem.

The departmentalized nature of government has a number of dysfunctional consequences. Hierarchies separate policy development from program administration within departments, with the result that departmental managers are accountable for the vertical rather than the horizontal management of programs. The same is the case for planning documents and performance reporting systems. Cross-departmental coordination and accountability are frustrated by the deep-seated reliance on individual departmental portfolios and ministerial responsibilities. The need for a strong government-wide accountability mechanism is again noted. "One of the major problems in implementing disability policies and programs is that no one has ever been clearly accountable [End Page 76] for results." The committee acknowledged that even the lead minister for disability issues, presently the Minister of HRDC, has a difficult job since lead ministers cannot force action.

Conclusions

Over twenty-five years ago now, the Canadian Council on Social Development noted that policies and services for people with disabilities was a hit-and-miss affair, a situation reflected in "the excellence of many individual programs and the fragmentation and lack of organization in the system as a whole" (Brown, 1977: 460). From a value stance, this reality was apparent in the incomplete realization of human rights and lack of choices to individuals and families in enjoying a decent and dignified life. "Not the least of the problems of this policy area is that disabled people do not fit neatly into the categories with which people identify, or into which policy-makers decide their activities" (Brown, 1977: 451).

This review of subsequent political and policy debate on disability issues as reflected in parliamentary, governmental and advocacy group documents yields a similarly disturbing if not even more discouraging conclusion. A strong and widespread sense of frustration persists within the disability community in Canada, based on personal experience and engagement with authorities, that the political will to act by the federal and provincial governments, while evident at times through the 1980s and 1990s, has, for the most part, been haphazard.

Foucault's notion of governmentality offers some insights into this case study of Canadian disability policy. The analysis here exposed certain mechanisms by which power is exercised. Policy issues and government track records are framed by those in positions of state authority through discourse technologies that include consultations, statistical surveys, parliamentary studies, action plans and ministerial speeches. Government structures and programs shape individuals in relation to their particular health status in performing daily living activities. The discourse embodied in such programs and structures link these health issues and conditions to the wider interests of the general population, in which the prevailing culture and "art of government" rest largely on political economy and medical science.

Governmentality as a way of thinking and talking is observable in the déjà vu discourse of disability. This discourse naturalizes the limited scale and pace of reforms in disability policy and services (Tremain, 2001). More dangerously, the discourse not only perpetuates a pattern of relentless incremental changes but also conceals the erosion and decline in existing programs and benefits to persons with disabilities. The language of shared societal responsibility for addressing disability issues further legitimates a limited role by the [End Page 77] Canadian state and places duties on individuals and families themselves as well as on other institutions, most notably the corporate and voluntary sectors.

In these ways we can see how specific governing concepts of disability lie behind the variety of failed, inadequate and unfinished reforms and endlessly repeated promises to do more. Disability continues to be primarily understood and approached by governments as a category or set of categories of discrete needs. Despite rhetoric to contrary — expressed in official documents of equality, inclusion and citizenship — disability remains framed by governments and other institutions, such as the health care industry, rehabilitation and psychiatry, within a bio-medical paradigm.

According to Foucault, an essential development in the art of modern government was the "introduction of economy into political practice" (Burchell, Gordon and Miller, 1991: 92). A political economy discourse of resource scarcity or, even in times of budgetary surplus, of fiscal prudence to avoid government deficits again, profoundly circumscribe the scope of debate and the political room to maneuver by disability advocates and client organizations. This discourse of economy is apparent in the priority emphasis given by governments to the employability of adults with disabilities, compared to the lower priority to children with disabilities. It is apparent too in government talk and action concerning the financial sustainability of such disability-related programs as the Canada Pension Plan, workers' compensation and social assistance. These are powerful arguments, tied to powerful interests that conduct the conduct of others. The findings additionally support the view that as the state became more governmentalized, it became more complex, complicated and compartmentalized in terms of programs, services and relationships with the general population and a multiplicity of particular clientele groups. This poses serious problems of public transparency, accountability and citizen access, problems which political sociology needs to further take up as pressing issues of democracy.

Given disparities in economic and social status as well as the rights and equality discourse of citizenship, reforms are wanted and expected by families, parent groups, youth, disability organizations, other voluntary sector groups, service providers, and Aboriginal communities. Reforms are necessary for addressing gaps, overlaps and inequities in policies, programs and services for preschool and school-aged children and youth with disabilities. Major changes are required to move toward a more inclusive and integrated set of governance arrangements. Minor tinkering with programs and structures will simply perpetuate the frustrating pattern of the past generation, with disability issues seemingly trapped in a circle. Fundamental reforms in several arenas are essential for advancing the vision of full citizenship and inclusion for all people with disabilities. [End Page 78]

In sociological terms, inclusion is multidimensional. It happens on an everyday or episodic basis, in formal and informal ways, and on interpersonal, organizational, interagency, intergovernmental, and intersectoral levels. In policy terms, integration has an important dualism. First, it means building disability considerations into mainstream programs and policies in all service and practice areas. At the same time, the integration of people with disabilities means supplementing mainstream programs where necessary with complementary services and supports for addressing the additional disadvantages faced by children and adults with disabilities.



Michael J. Prince holds the Lansdowne Chair in Social Policy in the Faculty of Human and Social Development, University of Victoria. His most recent book is Changing Politics of Canadian Social Policy, with James J. Rice (University of Toronto Press, 2000), which was short listed for the Innis Prize for best social science book in Canada. Other recent publications about disability issues can be found in Canadian Journal of Political Science (2001), Canadian Public Policy (2001) and Canadian Public Administration (2002). He is completing a book on the history of the Canada Pension Plan Disability Program.
mprince@uvic.ca

References

Armitage, Andrew
1996 Social Welfare in Canada Revisited: Facing Up to the Future. Toronto: Oxford University Press.

Assembly of First Nations
1998 First Nation's Position on Disability. Ottawa: Resolution. (http://www.afn.ca/resolutions/1998/con-dec/res71.htm)

Baer, Douglas (ed.)
2002 (Ed.) Political Sociology: Canadian Perspectives. Toronto: Oxford University Press.

Barnes, Colin, Mike Oliver and Len Barton (eds.)
2002 Disability Studies Today. Cambridge: Polity Press.

Beauvais, Caroline, and Jane Jenson
2001 Two Policy Paradigms: Family Responsibility and Investing in Children. Ottawa: Canadian Policy Research Networks.

Bickenbach, Jerome
1993 Physical Disability and Social Policy. Toronto: University of Toronto Press.

Boyce, William, Mary Tremblay, Mary Anne McColl, Jerome Bickenbach, Anne Crichton, Steven Andrews, Nancy Gerein, and April D'Aubin
2001 A Seat at the Table: Persons with Disabilities and Policy Making. Montreal and Kingston: McGill-Queen's University Press.

Brown, Joan C.
1977 A Hit-and-Miss Affair: Policies for Disabled People in Canada. Ottawa: Canadian Council on Social Development.

Burchell, Graham, Colin Gordon and Peter Miller
1991 The Foucault Effect: Studies on Governmentality. Chicago: University of Chicago Press.

Cameron, David and Fraser Valentine (eds.)
2001 Disability and Federalism: Comparing Different Approaches to Full Participation. Montreal and Kingston: McGill-Queen's University Press.

Canada
2002 Advancing the Inclusion of Persons with Disabilities: A Government of Canada Report, December 2002. Ottawa: Human Resources Development Canada.
1999a Future Directions to Address Disability Issues for the Government of Canada: Working Together for Full Citizenship. Ottawa: Human Resources Development Canada. (http://hrdcdrhc.gc.ca/socpol/reports/disability/conte.shtml) [End Page 79]
1999b Government of Canada Response to Reflecting Interdependence: Disability, Parliament, Government and the Community, the Sixth Report of the Standing Committee on Human Resources Development and the Status of Persons with Disabilities. Ottawa. (http://www.hrdc-dhrc.gc.ca/dept/general/response.shtml)
1996 The Will to Act: Equal Citizenship for Canadians with Disabilities, Report of the Federal Task Force on Disability Issues. Ottawa. (http://www.hrdc-drhc.gc.ca/hrib/sdskForce/English/report/html)

Canadian Association of Community Living
2000 CACL Campaign 2000 — Disability and the Federal Government, Support to Families. Toronto: Canadian Association of Community Living. (http://www.cacl.ca)

Canadian Coalition on the Rights of the Child
1999 How Does Canada Measure Up? Toronto: Canadian Coalition on the Rights of the Child. (http://www.rightsofchildren.ca)

Council of Canadians with Disabilities
1996 Federal Leadership on Disability and Citizenship Rights Required. Final Presentation to the Federal Task Force on Disability Issues. Winnipeg. (http://www.pcs.mb.ca/~ccd.tskfrc.html)

Council of Canadians with Disabilities, with 13 national disability organizations
1999 A National Strategy for Persons with Disabilities: The Community Definition. Winnipeg: Council of Canadians with Disabilities. (http://www.pcs.mb.ca~ccd)

Clifford, Michael
2001 Political Genealogy After Foucault: Savage Identities.London: Routledge.

Dean, Mitchell
1999 Governmentality: Power and Rule in Modern Society. London: Sage.

Enns, Ruth
1999 A Voice Unheard: The Latimer Case and People with Disabilities. Halifax: Fernwood Publishing.

Faubian, James D.
1994 Power: Michael Foucault, Essential Works of Foucault 1954-1984, Volume 3. New York: The New Press.

Federal-Provincial-Territorial Ministers Responsible for Social Services
2000 Public Report on the Public Dialogue on the National Children's Agenda — A Shared Vision. (http://www.socialunion.gc.ca)
1998 In Unison: A Canadian Approach to Disability Issues. (http://www.socialunion.gc.ca)

Finkelstein, Vic
1980 Attitudes and Disabled People. New York: World Rehabilitation Fund.

Foucault, Michel
1980 Power/Knowledge. New York: Pantheon.

Fox, Daniel M. and David P. Willis
1989 "Disability Policy: Restoring Socioeconomic Independence." The Milbank Quarterly 67 (Supp. 2, Parts 1 and 2): 1-7.

Goffman, Erving
1963 Stigma: Notes on the Management of Spoiled Identity. New York: Simon and Schuster.

House of Commons
2001 A Common Vision: Interim Report. Standing Committee on Human Resources Development and the Status of Persons with Disabilities. Ottawa: June 12. (http://www.parl.gc.ca/IfoComDoc/37/1/HUMA/Studies/Reports/report4-huma-e.htm) [End Page 80]
1999 Reflecting Interdependence: Disability, Parliament, Government and Community. Sixth Report of the Standing Committee on Human Resources Development and the Status of Persons with Disabilities. Ottawa: June 8.
1995 The Grand Design: Achieving the "Open House" Vision. Report of the Standing Committee on Human Rights and the Status of Disabled Persons. Ottawa.
1993 Completing the Circle: Aboriginal Canadians with Disabilities. Report of the Standing Committee on Human Rights and the Status of Disabled Persons. Ottawa.
1990 A Consensus for Action: The Economic Integration of Disabled Persons. Report of the Standing Committee on Human Rights and the Status of Disabled Persons. Ottawa.
1981a Follow Up Report: Native Population. Report of the Special Parliamentary Committee on the Disabled and the Handicapped. Ottawa.
1981b Obstacles Report. Report of the Special Parliamentary Committee on the Disabled and the Handicapped. Ottawa. (http://www.hrdc-drhc.gc.cahrib/sddi/documents/obstacles.html)

Kallen, Evelyn
1989 Label Me Human: Minority Rights of Stigmatized Canadians.Toronto: University of Toronto Press.

Mahon, Rianne
2001 School-aged Children across Canada: A Patchwork of Public Policies. Ottawa: Canadian Policy Research Networks.

Martin, Luther H., Huck Gutman and Patrick H. Hutton (eds.)
1988 Technologies of the Self: A Seminar with Michel Foucault.Amherst, Mass.: University of Massachusetts Press.

Morris, Jenny
1992 "Personal and Political: A Feminist Perspective on Researching Physical Disability." Disability, Handicap & Society 7 (2): 157-166.

Oliver, Mike
1990 The Politics of Disablement. Basingstoke: Macmillan.

Prince, Michael J.
2002 "The governance of children with disabilities and their families: Charting the public-sector regime in Canada." Canadian Public Administration, 45(3): 389-409.
2001a Governing in an Integrated Fashion: Lessons from the Disability Domain.Ottawa: Canadian Policy Research Networks. (www.cprn.org)
2001b "Citizenship by Instalments: Federal Policies for Canadians with Disabilities." in Leslie A. Pal (Ed.), How Ottawa Spends 2001-2002: Power in Transition. Toronto: Oxford University Press.
1992 "Touching Us All: International Context, National Policies, and the Integration of Canadians with Disabilities." in Frances Abele (Ed.), How Ottawa Spends, 192-93, The Politics of Competitiveness. Ottawa: Carleton University Press.

Prince, Michael J., and Frances Abele
2000 "Funding an Aboriginal Order of Government in Canada: Recent Developments in Self-Government and Fiscal Relations," in Harvey Lazar (ed.), Canada: The State of the Federation 1999/2000. Kingston: Institute of Intergovernmental Relations.

Rice, James J., and Michael J. Prince
2000 Changing Politics of Canadian Social Policy. Toronto: University of Toronto Press.

Rioux, Marcia H., and Michael J. Prince
2002 "The Canadian Political Landscape of Disability: Policy Perspectives, Social Status, Interest Groups and the Rights Movement." in Allan Puttee (ed.) Federalism, Democracy [End Page 81] and Disability Policy in Canada.Montreal and Kingston: McGill-Queen's University Press.

Savoie, Donald J.
1999 Governing from the Centre: The Concentration of Power in Canadian Politics. Toronto: University of Toronto Press.

Statistics Canada
2002 A Profile of Disability in Canada, 2001. Catalogue Number 89-577-XIE. Ottawa. (http://www.statcan.ca)

Titchkosky, Tanya
2003 Disability, Self, and Society. Toronto: University of Toronto Press.
2001 "Disability" A Rose by Any Other Name? "People-First" Language in Canadian Society." Canadian Review of Sociology and Anthropology. 38(2): 125-140.
2000 "Disability Studies: The Old and the New." Canadian Journal of Sociology.25(2): 197-224.

Tremain, Shelley
2001 "On the Government of Disability." Social Theory and Practice.27(4): 617-36.

Turner, Bryan S.
1986 Citizenship and Capitalism: The Debate Over Reformism. London: Allen & Unwin.

Valentine, Fraser
2001 Enabling Citizenship: Full Inclusion of Children with Disabilities and their Parents. Ottawa: Canadian Policy Research Networks.

Wharf, Brian (ed.)
1993 Rethinking Child Welfare in Canada. Toronto: McClelland and Stewart.

Zola, Irving K.
1982 Missing Pieces: A Chronicle of Living with a Disability. Philadelphia: Temple University Press.

Footnotes

1.The main methods used for this study include a textual and thematic analysis of numerous government, parliamentary and disability community documents over the past 20 years; a review of the academic literature on Canadian social policy; interviews and focused conversations with approximately a dozen key informants inside and outside of government in this policy field in 1999 and 2000; and comments from 20 participants at a Roundtable held in Ottawa in May 2001, sponsored by the Canadian Policy Research Networks. I am grateful to the Roundtable participants, who comprised governmental and advocacy representatives, for their constructive and challenging comments. For more details on the Roundtable, see Prince (2001a).

2.This estimate is likely conservative since the survey was of the 10 provinces and people living in households and did not include people living in the three territories, First Nations people living on reserves or people living in institutions such as nursing homes.

3.I generated this list of themes from a survey of federal government documents spanning the last 20 years, typically made in response to parliamentary reports. The relevant documents are listed in the References.

4.A recent parliamentary report endorsed by members from all five federal political parties noted: "We recognize that during a period of cutting costs, administrative measures need to be put in place that contain expenditures but we share the concern of independent policy analysts and disability organizations that the current disability income support programs operated by the federal government, notably the Canada Pension Plan-Disability (CPP-D), has not recognized the fundamental realities of many people who live with a disability" (House of Commons, 2001: 17).

Share