Seat at the Table: Persons with Disabilities and Policy Making 9780773569195

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A Seat at the Table Persons with Disabilities and Policy Making

The Canadian Charter of Rights and Freedoms has been used to strike down fifty-eight statutes that permitted the exclusion of persons with disabilities, women, ethnic minorities, or gays and lesbians. While some conservatives see this trend as "rulings for the many by the few," those representing excluded groups view their successful court challenges against unjust laws as a long-awaited coming of age, allowing them to finally obtain a seat at the table. A Seat at the Table documents the participation of disability activists and organizations in public policy making in Canada. The authors combine studies of contemporary federal and provincial policy making with a historical perspective on the progress made by disability groups since World War I. The cases they discuss illustrate the tension between issues of human rights and personal capacities that the disability movement must deal with, but which have implications for other groups as well. An analysis of contemporary social policy networks in Canada makes it possible for the authors to suggest reasons for the inconsistent success that disability organizations have had in translating their requirements into policy. A Seat at the Table illuminates the key social-political factors of resources, roles, and reputations that must be taken into account by excluded groups seeking to gain a seat at the policy table. The insights it provides are important for the development of more professional lobbying practices by disability stakeholders as well as by women, Aboriginals, ethnic groups, the elderly, and the poor. WILLIAM BOYCE is director of the Social Program Evaluation Group at Queen's University. MARY TREMBLAY is associate professor of rehabilitation science at McMaster University. MARY ANN MCCOLL is professor of rehabilitation therapy at Queen's University. JEROME BICKENBACH is professor of philosophy and law at Queen's University. ANNE CRICHTON is professor emerita of health care and epidemiology at the University of British Columbia, j. STEVEN ANDREWS is consultant for Queen's University. NANCY GEREIN is a lecturer at the Nuffield Institute for Health at the University of Leeds. APRIL D' AUBIN is a researcher for the Council of Canadians with Disabilities.

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A Seat at the Table Persons with Disabilities and Policy Making

William Boyce, Mary Ann McColl, Mary Tremblay, Jerome Bickenbach, Anne Crichton, Steven Andrews, Nancy Gerein, and April D'Aubin

McGill-Queen's University Press Montreal & Kingston • London • Ithaca

McGill-Queen's University Press 2001 ISBN 0-7735-2180-1 (cloth) Legal deposit fourth quarter 2001 Bibliotheque nationale du Quebec Printed in Canada on acid-free paper This book has been published with the help of a grant from the Humanities and Social Sciences Federation of Canada, using funds provided by the Social Sciences and Humanities Research Council of Canada. McGill-Queen's University Press acknowledges the financial support of the Government of Canada through the Book Publishing Industry Development Program (BPIDP) for its activities. It also acknowledges the support of the Canada Council for the Arts for its publishing program.

Canadian Cataloguing in Publication Data

Main entry under title: A seat at the table: persons with disabilities and policy making Includes bibliographical references and index. ISBN 0-7535-2180-1 (bnd) i. Handicapped - Government policy - Canada, I. Boyce, William JL86.P64S42 2001 362.4'o4561'og71 000-901692-9

This book was typeset by Dynagram Inc. in 10/12 Baskerville.

Contents

Glossary of Organizations in this Study vii Paternalism or Participation? 3 1 From Asylum to Independent Living: Disability Policy Making, Past to Present

10

2 Theoretical Frameworks for Citizen Participation: Contextualizing the Case Studies 23 3 Constitutional Ferment: Proceeding to Patriation 38 4 The Canadian Charter of Rights and Freedoms: The Political Battle over Four Words 49 5 The Charlottetown Accord: Post-Patriation 66 6 The Ontario Advocacy Act: Representing Persons with Intellectual Disabilities 85 7 Adult Guardianship Legislation in British Columbia: Reform and Restructuring through Community Participation 108 8 Themes in Disability Policy Participation

124

9 The Potential for Influencing Policy 145 10 Recommendations for Research and Strategy 166

vi Contents

Notes 171 Appendix 185 References Index 203

187

Glossary of Organizations in this Study

ARCH BCACL BIA BOOST CACL CAILC CCD CDRC CHS CNIB COPOH CPA CPC CRCD DAWN LEAP OAC OACL OMA OFS PRAG PUSH SRRS

Advocacy Resource Centre for the Handicapped British Columbia Association for Community Living Brain Injury Association Blind Organization Offering Self-help Tactics Canadian Association for Community Living Canadian Association of Independent Living Centres Council of Canadians with Disabilities Canadian Disability Rights Council Canadian Hearing Society Canadian National Institute for the Blind Coalition of Provincial Organizations of the Handicapped Canadian Paraplegic Association Canadian Pensioners Concerned Canadian Rehabilitation Council for the Disabled DisAbled Women's Network Legal and Educational Advocacy Project Ontario Advocacy Coalition Ontario Association for Community Living Ontario Medical Association Ontario Friends of Schizophrenics Project to Review Adult Guardianship Persons United for Self-Help Seniors Resources and Research Society

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Preface

Disability issues represent an interesting nexus of public policy debate. Concerns for the basic human rights of persons with disabilities, which suggest their inclusion in policy making, are contrasted with concerns for defining the capacity of individuals to make fundamental life decisions. Members of the disability community find themselves in the middle of this tension and are often forced to adapt their focus. At the same time, interests of others (parents, families, professionals) may lead to radically different perspectives on policy issues. The result is a complex policy environment with a strong measure of impassioned debate. This book explores that environment principally from the perspectives of persons with disabilities and organizations advocating on their behalf. Two sets of federal and provincial policy initiatives are used in this book to illustrate this tension. The team for this study included the Council of Canadians with Disabilities as a full research partner, along with academics from three universities (Queen's, McMaster, University of British Columbia) in disciplines varying from law, philosophy, history, and sociology to rehabilitation science and epidemiology. The diversity of the team allowed us to address a variety of perspectives that revealed numerous interesting themes. A Seat at the Table will be of interest to researchers and graduate students in the social sciences; to disability organization leaders and members; and to federal and provincial government officials. It also offers material appropriate for courses in disability studies.

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A Seat at the Table

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Paternalism or Participation?

Voluntary citizen participation in governance has long been a valued concept and social practice in Western democratic societies. Citizen participation has been described as one of the five essential "localityrelevant functions" of any community system, along with an economic base, resources for socialization, social control mechanisms, and mutual aid arrangements (Warren 1963). Historically, citizen participation has comprised collective responsibilities for community self-improvement, voluntarism in charitable organizations, and citizen responsibilities for local governance. The process of participation in the area of governance and policy making is the subject of this book. The development of health and social policies in the disability field has always presented policy makers with a conundrum about citizen participation. On the one hand, well-meaning, yet paternalistic, efforts of bureaucrats and policy-makers to provide for persons with disabilities1 have made it difficult for individuals and their organizations to make their needs and views known. In most cases, they have not been invited to the table. This lack of involvement of persons with disabilities has resulted in significant gaps and inconsistencies in policy. The absence of democratic principles such as full participation has been detrimental to persons with disabilities. On the other hand, the involvement of persons with disabilities in the policy arena requires extra structural and personal supports for equal access such as those required for other minority groups such as women, youth, the aged, and ethnic groups. Thus, a government that is interested in the participation of persons with disabilities in policy making necessarily finds itself

4 A Seat at the Table facilitating particular policy principles and supports, in the absence of any formal agreements, just to proceed with the policy process. An incremental policy process rather than a transformational policy process may result, with gains being made slowly rather than with vigour, as disability advocates prefer. Thus, the process of participation of persons with disabilities in policy making is just as interesting as the outcome of their participation, since such participation itself both democratizes the policy process and demonstrates the types of policy support required. The study of policy participation of disadvantaged groups can illustrate the problems that may be experienced in later stages of policy implementation and help avoid expensive revisions of policy initiatives. The study of such processes increases our understanding of how governments can both meet the needs of people with disabilities, and indeed other marginalized groups, and facilitate their contributions to society. A brief historical note about the concept of citizen participation is in order. Pateman (1970) notes that the word "participation" became part of the popular political vocabulary during the late igGos. Dramatic changes had occurred in modern society in response to technological change, increased educational levels and professionalization, greater urbanization and mobility, and bureaucratization. These factors reduced the functional cohesiveness of communities and increased the need for a state role in community affairs (Ross 1960, Chetkov-Yanoov 1986). At the same time, post-colonial liberation movements worldwide had stimulated the emergence of new social movements in the West (for example, student, environment, urban renewal and women's movements), which demanded wider influence in public matters. Their resistance to state control, coupled with the state's inability to afford the level of public services that they demanded, provided the context in which early calls for citizen participation were advanced. More than ever, governments called upon community members to participate in local activities. At times, they encouraged citizen participation in order to improve efficiency through community-member contributions to public services. At other times, governments suggested that empowerment could be achieved through increased public involvement in decision making. Hopes for both cost-savings and legitimization of emerging political agendas were evident in these calls for participation. Thus, governments appeared to cede to external demands for citizen participation since it could be fashioned to meet the state's needs as well (Litwin 1986). This book takes the perspective that new social movements have entered into traditional interest group politics and in the process have transformed the political

5 Paternalism or Participation?

landscape. A definite moral agenda of human rights now pervades the political process. The policy field has also been strongly affected by these trends toward citizen participation. However, a definition of "policy" and a general understanding of the policy process in a liberal democratic system are necessary before proceeding further. Policy is "a purposive course of action followed by a set of actors in dealing with a problem or matter of concern" (Walt 1996). In the area of disability concerns, this general definition of policy can be elaborated further. Disability policy embraces courses of action that affect the set of institutions, organizations, services, and funding arrangements of the disability system. It goes beyond formal services and includes actions or intended actions by public, private, and voluntary organizations that have an impact on disability. In the context of policy studies, there are three possible foci for discussion. First, policy options, or content, can be examined for the substantive issues, rationales, assumptions, and values that any particular issue demonstrates. For example, one can study the various initiatives in Constitutional policy for their adherence to the principles underlying Canadian society. A second approach is to study the planning and execution of programs and the concrete initiatives that a policy prescribes. This approach is largely a study of bureaucracies and other bodies, such as the private and voluntary sectors, that are responsible for program implementation. Its questions are: What resources are available? Who is involved in implementation? How is policy implementation enforced? Does the policy achieve its objectives? Does it have unintended consequences? A third possibility is to study the process of policy making and the involvement of various actors at different stages of policy development. Researchers who choose this focus ask: How are policy problems recognized and turned into issues that get onto the policy agenda? How are policies formulated? Is the policy process a rational search for the best possible integrative solution to a particular problem, or is policy made up of small, incremental changes that are rarely innovative or emancipatory? Finally, which actors are involved and how much influence does each actor exert on the substantive policy result? This third area of enquiry, the topic of policy process, is the primary focus of this book, although an appreciation of policy issues and policy implementation is also important in understanding the roles of various actors in the policy process. The policy-making process involves two fundamental steps: problem identification and policy formulation. Problem identification, or issue recognition, involves studying why and how issues get onto the agenda. What are the mechanisms for uncovering issues and clarifying the

6 A Seat at the Table priority of problems? Issue definition and issue filtration, or deciding how to decide, go hand in hand in policy making. Governments are expected to be major actors in problem identification through feedback from constituents, through theoretical leanings, and through opportunities that arise in the social and, increasingly, the international environment. The influence of research on problem identification is often related to the nature and intimacy of links between policy makers and researchers. The media can also be gatekeepers for problem identification. The media's influence is related to their responsiveness to powerful versus less powerful groups, to their issue-attention cycle, to their historical impact on policy makers, and to the interaction with and use of the media by consumer organizations. Policy formulation, the second step in policy making, is more formal and bureaucratic. Research in this area looks at who formulates policy and how the policy-making process is structured, and identifies the roles of various government actors - political parties, the executive level, and the civil service, as well as non-government interest groups and individuals. Analysis of policy formulation reveals how policy objectives and priorities are set. Options analysis examines the establishment of assumptions, as well as forecasting scenarios to help predict implementation issues and likely outcomes of policy. Finally, the study of policy formulation examines the roles of various participants in developing policy strategy, and looks at the financial and technical aspects of a policy and its implications for management. The study of policy processes is not new. Up to now, however, this type of study has most often focused on powerful interest groups, or at least on well-organized community sectors such as neighbourhood associations. With the trend towards increased citizen participation in public affairs a similar enquiry is needed for marginalized groups. In the case of disadvantaged groups, there are reports of the relatively poor performance of strategies to involve citizen participation in many sectors, including policy making, in the United States (Windle 1981), in Europe (Watt 1988), and in developing countries (De Kadt 1982). The problems they reveal underlie our motivation to study the participation of disability organizations, which are arguably among the least powerful, in various policy processes. Overall, we have taken a sociological approach rather than a political science approach in this book, since disability organizations are still emerging as political interest groups and have not yet been institutionalized into political parties. Nor do members of disability organizations vote in solid electorate blocs. In the cases we have chosen to highlight, a sociological analysis has better potential to explore the dynamics of policy participation and describe the key roles of individuals in the pro-

7 Paternalism or Participation?

cess. Our sociological approach identifies the political-legal-economic, social-cultural, and organizational structures that affect the participation process. Although we recognize that the personal motivations and the inter-actional dimensions of groups are also important in understanding how participation develops, we believe that the structural dimensions of participation - particularly the organizational aspects that can be modified independently by disability organizations - are key in the policy environment and lead to useful recommendations. Canadian disability policy development was selected as the context for this study for several reasons: there is ample documentation available; articulate disability advocates and other policy participants were willing to be interviewed; and recent examples of policy initiatives in this area at both the federal and provincial level contain much material that bears close examination. For our study we used historical and qualitative research methods best described as historical ethnography. This type of study attempts to describe the development of political and organizational structures and processes that influence, and in turn are influenced by, a culture, in this case, the culture of disability organizations in Canada. We analysed four examples: the Charter of Rights and Freedoms; the Charlottetown Accord; the Ontario Advocacy Act; and the British Columbia Adult Guardianship Legislation. We selected these cases because they included a balance of federal and provincial examples, as well as a balance of human rights issues and issues involving concerns about individual capacity. Data for the study were assembled from forty interviews with key informants who had participated in one of the four policy cases. These respondents included disability advocates, government bureaucrats, politicians, and members of interest groups representing alternative views. They were identified through investigative contacts, review of pertinent correspondence, and historical accounts of the four cases. A sub-sample of respondents from three cases (the Charter, the Charlottetown Accord, and the Ontario Advocacy Act) was interviewed in depth to obtain additional information on the structural characteristics of disability organizations. The glossary at the front of the book lists the organizations mentioned in this study. The interviewees' name are listed in the appendix. Interviews generally took one to two hours, and some were conducted on more than one occasion. Researchers followed a semistructured interview format, although they tailored each interview to fit the role and affiliations of the interviewee. Transcribed interviews were read over by the researcher and, where possible, by the interviewee as well.

8 A Seat at the Table The researchers also reviewed extensive public and private documents, including letters, Hansard records, draft policy papers, newspaper articles, and legislative records. These were particularly useful in clarifying the social context of the policy issues, in building the case chronologies, and in assessing policy outcomes. Our researchers wrote separate reports on each case using a standard format that included the following aspects: the social and political context of discrete policy issues affecting persons with disabilities in Canada; the detailed chronologies of policy development in these issues; the characteristics of disability organizations and their advocates; the process of citizen participation, in particular the roles of disability organizations; and the policy outcomes, or an assessment of the benefits obtained by various groups. The form of analysis for these reports could be termed "historical" in that our researchers gave priority to chronologies of events and contextual elements in the policy environment. They verified factual information and claims that were made by consulting more than one source. They noted discrepancies between respondents and offered explanations for the differences. Researchers' personal impressions about the process of policy making or the veracity of claims about participation were clearly bracketed in the reports, so as to avoid confusion. In the comparative analysis of the structural characteristics of disability organizations, a traditional ethnographic analytic approach with three levels of coding was used. The analysis aimed to develop a framework for describing organizations that represent individuals with disabilities in legislative advocacy in Canada. This book is arranged in three parts. Part One begins with a history of the involvement of Canadian disability organizations in policy making, demonstrating important styles of interest group influence that have long been in practice. Recent development of the disability movement during an expansion of the social welfare state provided a unique opportunity for making major policy gains. Part One continues with a conceptual review of the literature about citizen participation, especially as it pertains to health and social policy development. We examine a variety of social change theories for their perspectives on citizen participation in the policy arena. We conclude from this review that participation of disability organizations is best examined from a structural perspective using new social movement and interest group theories. In Part Two we outline the four cases in this study: two federal constitutional processes - the Patriation of the Constitution (1981-82) (Bickenbach, D'Aubin) and the Meech Lake and Charlottetown Accords (1990-92) (Tremblay, McColl); and two provincial policy processes - the Ontario Advocacy Act (1990-95) (Andrews, Boyce,

g Paternalism or Participation?

Gerein) and the British Columbia Adult Guardianship Legislation (1989-95) (Crichton). The federal cases illustrate the interesting development of capacity building in certain disability organizations that have matured as advocacy groups but have not been consistently able to achieve policy gains. The provincial cases illustrate not only the divergence of disability groups' views on fundamental issues of capacity and decision making, but also differences in the latitude that they allow for the involvement of consumer groups in policy implementation and formulation. Part Three contains a comparative analysis of the strategies and tactics that disability organizations use in the policy process, and the structural requirements for their involvement in policy making. The discussion focuses on various issues and theories that are useful in explaining the participation of persons with disabilities in policy making in Canada. In the final chapter we offer some tentative conclusions and recommendations for improving the participation of organizations of persons with disabilities in the policy arena.

i From Asylum to Independent Living: Disability Policy Making, Past to Present

Disablement has traditionally been defined from a biomedical perspective that emphasized the causes or diagnosis of impairment and led to interventions such as medical and surgical services designed to help with the resulting physical problems. Disablement has also been defined from an economic perspective that emphasizes the impact of disability on society and on the sense of self-worth of the person with a disability. Currently, disablement is commonly defined from a socioenvironmental perspective that emphasizes the influence of physical, economic, social, and attitudinal constraints on the participation of persons with disabilities in society. This approach emphasizes the interaction between social handicaps and environmental problems, and leads to interventions directed at reducing community barriers to integration (Boyce 1999). In this chapter we present an overview of major initiatives in Canadian disability policy and review past research on the roles of persons with disabilities in influencing and shaping Canadian disability policy. We proceed to outline the more recent context in which the cases in this book occurred. It is important to note that there has been limited Canadian historical research on the roles of persons with disabilities in the development of policy, and more research is needed before a comprehensive historical analysis can be undertaken. Table i at the end of this chapter provides a summary of significant legislative initiatives, the disability organizations involved in the development of initiatives, and the key leaders in the disability movement.

11 From Asylum to Independent Living FIRST I N I T I A T I V E S

The earliest initiatives in Canadian disability policy were the provision of housing and care for individuals with mental illness or handicap, education for children with disabilities, and the development of Workmen's Compensation programs. These early initiatives were not led by persons with disabilities but rather by coalitions of individuals, government officials, physicians, labour unions, and employer associations, who were interested in the welfare of persons with disabilities. The Rise of the Asylum

In the nineteenth century, Canadian provincial governments gave the responsibility for dealing with mentally ill and mentally handicapped persons to the Provincial Secretary as a matter of maintaining "law and order." In some provinces, "disturbed" people were put in jails, but this practice was eventually seen to be an unsatisfactory way to cope with their problems. One of the earliest Canadian policy initiatives was the development of asylums to house persons with mental illness or a mental handicap and other persons, probably including individuals with physical disability, who could not find a proper place in society (Simmons 1982). Some of the earliest asylums, established in the first half of the nineteenth century, were designed on the principles of "moral treatment" to aid persons with disabilities to return to community life. By the end of the nineteenth century, however, most asylums had devolved into "warehouses" designed to provide custodial care for inmates throughout their lives. Many individuals with disabilities were also found in county homes or municipal houses of refuge (Struthers 1994). This practice of housing persons with disabilities continued well into the twentieth century.' Education for Children with Disabilities

The first initiatives in policy development in the area of education for persons with disabilities occurred in 1867 when an Ontario government report prepared by Egerton Ryerson, Ontario's first superintendent of education, recommended the establishment of special residential schools for blind and deaf children, to be funded by the provincial government (Ryerson 1868). The government passed legislation to provide funding for these special schools, paving the way for a school for the blind to be established in Brantford, Ontario, in 1871, and a school for the deaf in Belleville, Ontario, in 1872. (It is of interest

12 A Seat at the Table

to note that during this period the provincial government did not yet provide funding for general public education.) Some Canadian provinces followed the Ontario example and established residential schools, while others provided funding for students with disabilities to travel to another province for their education (Winzer 1993). By the 19205 many provincial governments had passed compulsory public education legislation and assumed the cost of public education from the tax base. New policies were developed to either exclude students with disabilities from public education or place these students in special classes. These new policies were often championed by physicians and proponents of eugenics who argued that the inclusion of children with disabilities in the classroom would interfere with the education of regular students (MacMurchy 1915; McLaren 1990; Simmons 1982). Education policies of this nature continued throughout most of the twentieth century. Indeed, by 1976, a major national survey of Canadian education noted: "Most provinces fall far short of adequate provision in public schools for handicapped children. The result is that, typically, these children must either be sent to expensive private institutions (with the parents bearing all or most of the costs), or the children are simply kept at home (which is quite legal). Thus the key pressing issue is not integration in regular schools or special provision, but adequate provision for handicapped children somewhere" (Noah 1976,4). The push for new legislation to provide tax funding for the education of students with disabilities was led during the 19605 and 19705 by coalitions of families of children with disabilities, advocates for children, and educators. In the late 19705 these coalitions of families also began to lobby for legislation to include students with disabilities in regular classrooms (Balance and Kendall 1969; Simmons 1982). Since the 19805, new groups of parents and disability advocacy groups have used the Canadian Charter of Rights and Freedoms to argue for education for all students in the regular classroom. Income Support, and Medical and Vocational Rehabilitation for Workers

The third major field of legislation affecting the lives of persons with disabilities was workers' compensation. During the late nineteenth century, legislation was introduced in Germany (1871), England (1890), Australia, and New Zealand (18905) to establish various forms of workers' compensation programs.2 Between 1890 and 1920, state and provincial legislatures in North America followed these developments and began to introduce similar programs. The first provinces to enact legis-

13 From Asylum to Independent Living lation were British Columbia (1902), Alberta (1908), Quebec (1909), and Manitoba (1910) (Babcock 1995). Labour union members were often the main proponents of new legislation because they were concerned both with accident prevention and with the provision of compensation to their injured fellow workers. Manufacturers, however, gradually supported compensation programs because they had an interest in protecting employers from liability for damages (Shaw 1994). The most significant legislation of this period was the Ontario Workmen's Compensation Act of 1914, which instituted the doctrine of liability without fault (Piva 1975). This principle meant that compensation was paid to the worker, as a right, without the necessity of proving negligence. Medical care and rehabilitation were also offered within a few years of the passage of the Ontario legislation (Guest 1985). Workers' compensation programs were financed by employers, who were required to pay insurance premiums that were assessed according to the hazards of their working conditions.3 It is important to note that there were no civilian rehabilitation or vocational training programs available until after World War II. At that time, the newly developed veterans' medical rehabilitation programs were first made available to civilian workers with disabilities, whose costs were covered by provincial workers' compensation boards. Canadian workers' compensation programs, however, did not provide income benefits for those who were injured or became ill outside of the workplace or for those who were unemployed, groups which represented a much larger proportion of Canadians. Persons in these categories could only look to municipal relief or assistance from philanthropic organizations until the passage of the Disabled Persons Act in 1954, which provided minimal relief solely on the basis of disability status. In the areas of early disability policy, although family members were involved in promoting policy development, persons with disabilities themselves were not involved. THE PIONEERS IN EARLY DISABILITY POLICY MAKING

World War I During World War I, the Canadian government developed a series of programs to provide medical care, rehabilitation, limited vocational training, and pensions to veterans with disabilities (Segsworth 1920; Kidner 1918; Todd 1918). Unlike workers' compensation programs, which provided only pensions and medical care, World War I programs also offered vocational training to veterans with disabilities who were

14 A Seat at the Table unable to return to their former occupations. Canada was one of the first countries in the world to develop these new vocational training programs (Morton and Wright 1987). Pension rates for disabilities were kept low, however, and were calculated on the income of an untrained labourer. Medical examiners awarded pensions solely on the basis of their examination of medical records. Fewer than 5,000 of the 70,000 pensioners from World War I were awarded pensions for full or near-full disability, while over 50 per cent were awarded pensions for disability rated at 20 per cent or less (Morton 1992). Indeed, an emphasis on returning veterans with disabilities to their regular employment was central to Canadian policy. Vocational retraining programs were offered only to those veterans who were unable to return to their pre-enlistment employment and were available only until 1921. Initial employment rates were impressive: 67.94% were reported employed as trained and 22.26% were employed otherwise; only 5.74% were unemployed in mid-igig (Morton, 1981). Despite early employment successes, however, as the Canadian economy declined during the Depression in the early 19205 and then again in the 19305, many veterans with disabilities became unemployed. Because of their inadequate pension levels, they often had to turn to the government for financial assistance (England 1943; Hyndman, Price, and Woods 1935). One important consequence of World War I was the establishment of some of the first organizations in Canada to be led by persons with disabilities: the War Amputations Association (War Amps); the Sir Arthur Pearson Association of War-Blinded Soldiers and Sailors (SAPA); and the Canadian Tuberculosis Veterans Association. These organizations were established by injured veterans working with interested citizens and were usually administered by veterans with disabilities. War Amps was led by Reverend Sydney Lambert and was formed to meet the needs of injured veterans. This was also the mandate of the Tuberculosis Veterans Association, which was led by Reverend John Kelman, and of SAPA, led by Captain Eddie Baker. These individuals received personal funding from the Department of Soldiers' Civil Re-establishment for their work in assisting veterans with disabilities to return to civilian life and for advising the department on policy. Following the war, veterans' organizations were effective in advocating for individual veterans and lobbying the Canadian government for changes in veterans' legislation. While the constitutions of these organizations specified that they should be led by veterans with disabilities, the members of their boards of directors were usually leaders in Canadian political, military, and business fields.

15 From Asylum to Independent Living

The development of programs and services for civilians with blindness began with the founding of the Canadian National Institute for the Blind (CNIB) in 1918. Eddie Baker and L.M. Wood, a wealthy Toronto financier, were the early leaders in this institution. Baker and Wood argued for services for civilians and placed blind individuals on the board of directors and in central administrative roles in the organization. The CNIB was the first national Canadian organization led by persons with disabilities. During the interwar period, civilians with disabilities relied on municipal or provincial government's or on philanthropic institutions for relief. There was no provision for medical treatment or rehabilitation except for those who qualified for workers' compensation programs. Social reformers of the period, such as Harry Cassidy and Leonard Marsh, recommended social legislation to protect against illness, accidents, old age, and unemployment (Research Committee of the League for Social Reconstruction 1935). The only legislative initiative related to disability during that period, however, was an amendment to the Old Age Pensions Act in 1937 that provided for payment of a pension to every blind person over the age of forty who was in financial need (Guest 1985). The legislation made no provision for treatment or vocational training, two other services that had long been sought by Baker, the CNIB, and the Canadian Federation of the Blind, which was formed in 1927 (Greenland 1976; Guest 1985). The new pensions were means-tested and reduced dollar for dollar by the equivalent of any income that a recipient acquired over a specified amount. World War II

In 1939 the Canadian government set up a number of committees to create plans for the reintegration of all Canadian veterans into civilian life following the war. By 1945 the newly established Department of Veterans Affairs began to provide medical treatment, rehabilitation, education and vocational training, war service gratuities, Veterans' Land Act provisions, and other benefits for all veterans. Veterans with disabilities were also offered income tax-free pensions, "helplessness" allowances, and funding for special equipment such as wheelchairs and prostheses. Finally, preference in employment was granted by the Canadian Civil Service Commission, and veterans with disabilities received the highest rating (Woods 1953). As a result of these programs, many Canadians with spinal cord injury, amputations, blindness, and hearing impairments returned to "Civvy Street," employed either in the public or the private sector. These veterans were often the first individuals with disabilities to enter

i6 A Seat at the Table the regular workforce, and their examples served as an impetus for the unfolding of policies to provide medical care and services to civilians with disabilities (Tremblay 1996). In 1948 the associations representing injured veterans formed the National Council of Veterans' Associations. This group, which continues today, was very successful in lobbying for policies that provided programs and services to support the full participation of Canadian veterans with disabilities in civilian life.4 The National Council of Veterans' Associations is the first example of interest group involvement in this issue. Two early leaders in the movement for improved services for Canadians with disabilities were veterans of World War II who had began their work in the area of veteran rehabilitation. Captain Edward Dunlop, blinded during the war, was the first chief of the Casualty Rehabilitation Section of the Department of Veterans Affairs. Under his leadership, a broad national program of vocational and economic rehabilitation for veterans with disabilities was established. The program actively recruited veterans with disabilities to become Casualty Rehabilitation Officers because of the belief that those who had successfully adapted to their disabilities could best provide counselling and advice to those with new disabilities. In the late 19405, Dunlop drew on his own experiences in veteran rehabilitation to develop proposals for new Canadian policies for civilians (Dunlop 1947). He was joined by other veterans in lobbying federal and provincial governments for the development of civilian rehabilitation and vocational training programs (Montreal Rehabilitation Survey Committee 1949). The second Canadian veteran who played a major role in changing Canadian disability policy was Lieutenant John Counsell. In 1945 Counsell, also working with L.M. Wood, established the Canadian Paraplegic Association (CPA). The CPA was the first organization in the world founded and administered by persons with spinal cord injury. Counsell and six other veterans with spinal cord injury formed its first board of directors. The first CPA constitution included a mandate to meet the needs of both veterans and civilians with spinal cord injury. The two central goals of the association were to provide "mutual aid" to individuals with spinal cord injury and to lobby all levels of government for medical care and rehabilitation programs for civilians with spinal cord injuries. The association expanded to have divisions across Canada by the i gGos and became one of the main lobbying groups for legislation for persons with disabilities. The directors of its divisions, such as Tony Mann of the Manitoba Division and Don Curren of the Maritime Division, were among the leaders in the development of lobbying efforts for provincial and federal disability policy initiatives between 1950

17 From Asylum to Independent Living and 1980. They, along with other veteran leaders in the CPA such as Ed Desjardins, were involved in the development of associations for civilians with disabilities across Canada. These included groups such as the Western Society for Physical Rehabilitation in British Columbia and the Manitoba League for the Physically Handicapped. Post-War Rehabilitation

During the early 19408, four significant reports expressed interest in the preparation of social legislation to protect all Canadians against unemployment, disability, sickness, and old age. The Report on Social Security for Canada (1943) by Leonard Marsh called for the development of a social insurance scheme, children's allowance, and a comprehensive system of health insurance. In The Dawn of Ampler Life (1943), Charlotte Whitton favoured instituting a living wage policy, a state system of medical care, and provincial programs of assistance for the unemployed, aged, mothers with dependent children, and persons with disabilities. The third proposal, Social Security and Reconstruction in Canada (1943) by Harry Cassidy, called for a federal program of social insurance to offer partial protection through cash benefits from federally funded, provincially administered old-age assistance, disability allowances, mothers' allowances, and general assistance programs. Finally, the Heagerty Report of 1943, which had been prepared for the federal government as part of its post-war reconstruction planning, offered a proposal for developing a federal-provincial health insurance program. This proposal was also discussed at the Dominion Provincial Conference on Reconstruction during 1945. However, after nine months of discussions relating to federal-provincial jurisdictional issues, the conference adjourned, unable to reach agreement on either social policy or health insurance (Guest 1985). During the late 19405, a small number of Canadian reports, surveys, and articles discussed the provision of rehabilitation, training, and funding for individuals with disabilities (Hudson and Jarmain 1944; Kelsey 1947; Andoff 1947; Montreal Rehabilitation Survey Committee 1949). One early group, the Council for the Guidance of the Handicapped in British Columbia, argued that "the disabled person does not want pity, charity or sympathy. All he wants is an opportunity to take his place among able-bodied men and women and prove ability to do any type of work" (Editor 1945). One of the first comprehensive Canadian reports on disability was The Rehabilitation Needs of the Crippled and Disabled in Canada (1947), prepared by Edward Dunlop, head of the Casualty Rehabilitation Section of the Department of Veterans Affairs. Dunlop wrote: "It

i8 A Seat at the Table is the task of Canadian society to organize itself in a manner which will enable each and every crippled or disabled Canadian who may require special services to avail himself of them. This opportunity for selfemancipation should be available as a right of citizenship, without reference to class, or the cause or source of disability" (Dunlop 1947) [italics added]. To further his ideal of self-emancipation, Dunlop called for the development of a national rehabilitation program, to be conducted jointly by the federal and provincial governments. He emphasized vocational training but did not address the provision of pensions or other funding benefits to individuals with disabilities. In 1951 the Canadian government appointed an interdepartmental advisory committee drawn from the Departments of Labour, Health and Welfare, and Veterans Affairs to advise on the development of civilian programs5. A federal-provincial conference held in Toronto in February 1951 resulted in the formation of the Advisory Committee on Rehabilitation. The work of this committee laid the foundation for the passage of legislation and the development of rehabilitation for civilians in Canada. Central to the work of the committee was the need to develop both medical treatment and rehabilitation programs, and vocational training and employment placement for Canadians with disabilities who were not eligible for veterans' or workers' compensation programs. During the 19505 and the 19603 the federal and provincial governments passed a number of pieces of legislation that affected the lives of Canadians with disabilities. The Medical Rehabilitation Grant, 1953, dealt with funding for medical rehabilitation. The Disabled Persons Allowance Act of 1954 established a joint federal-provincial program of vocational rehabilitation and allowances for individuals over the age of eighteen who had total and permanent disabilities. Finally, the Vocational Rehabilitation of Disabled Persons (VRDP) program and the Co-ordination of Rehabilitation Services Act of 1961 were passed to provide funding for vocational training for civilians. Eddie Baker, John Counsell, and Edward Dunlop played key lobbying roles in the establishment of the early advisory committees and in the ongoing development of legislation. They were joined by government officials, particularly from the Departments of Labour and Health and Social Services, by voluntary organizations, and by members of the medical community. Emergence of Cross-Disability Groups

Overall, in the first half of the century, the most significant pieces of legislation for Canadians with disabilities were the workers' compensa-

i g From Asylum to Independent Living

tion programs, the Veterans Charter following World War II, and the legislative initiatives of the 19508 and 19605 to provide medical rehabilitation, pensions, and vocational training. The most successful lobbying organizations of Canadians with disabilities were the veterans' organizations. Indeed, beginning with its first successful lobbying effort in 1948, the National Council of Veterans' Associations provided a model of a very effective interest group. The council continues to be the main voice for Canadian veterans with disabilities, and indeed veterans' disability legislation has provided an important model for subsequent civilian initiatives. The early evolution of civilian organizations of persons with disabilities was often led by veterans with disabilities such as Baker and Counsell. They transferred the principles of mutual aid and support and lobbying for legislation from their work with veterans. The provincial offices of veterans' organizations often provided leadership to other organizations for persons with disabilities that began to arise in the late 19605. Initially, disability organizations, such as the Canadian Arthritis Association, for example, were formed to address the needs of specific disability groups. After the passage of the Disabled Persons Act of 1954, however, new organizations begin to focus on disability in general rather than on specific disabilities. As generic rehabilitation centres opened and brought together new groups of health professionals and people with a variety of disabilities, disability organizations begin to address broader issues such as barriers to employment, transportation, and housing. Organizations such as the Manitoba League for the Physically Handicapped, the Handicap Action Group Incorporated of Thunder Bay, and the Toronto Mayor's Committee began to form to work on societal access issues. A new type of cross-disability social movement emerged. TOWARDS I N D E P E N D E N T L I V I N G

The philosophy of the Independent Living (IL) movement underlies the evolution of recent policy participation by persons with disabilities in Canada. The IL movement arose in response to the growing militancy of persons with disability who rejected the control of professionals over their lives (De Jong 1979). The IL movement advocated that consumers have control over the organizations and resources required to achieve maximal independence in their communities. Traditional service providers addressed disability by employing professional program staff, by providing services for "clients," by emphasizing private charitable fundraising, and by focusing on specific disabilities. In

20 A Seat at the Table contrast, IL advocacy organizations emphasized what they termed "consumer control," education and advocacy programs, government responsibility for program funding, and cross-disability representation or involvement of persons with a wide variety of disabilities (MacEachen 1993). During the International Year of Disabled Persons (1981) the federal government established the Parliamentary Special Committee on the Handicapped to prepare a series of reports entitled Obstacles (Canada Health and Welfare 1981). The committee's recommendation for the establishment of IL centres provided a basis from which consumer groups could legitimately negotiate with the government for funding (Lord and Osborne-Way 1987). The early 19805 set the scene for advocacy responsibility within the disability movement. In 1981 the Coalition of Provincial Organizations of the Handicapped (COPOH, now known as CCD, the Council of Canadians with Disabilities) established an Independent Living committee. Valentine (1994) notes that "a key development from this committee was the conscious separation of individual vis-a-vis collective advocacy." Unlike the American Independent Living movement, which combined these elements, in Canada disability advocacy groups such as COPOH and Persons United for Self-Help (PUSH) took a lead role in policy and legislative activities, while IL centres focused on assisting individuals by developing their personal skills, providing information on resources, and negotiating services for them. By the late 19805 disability organizations in Canada were high on the federal and provincial governments' social service priorities as part of an expanded social welfare system. Governments had set up distinct bureaucratic structures to organize disability policy and fund community service groups; for example, the Ontario Office of Disability Issues and the Disabled Persons' Unit within the federal Secretary of State. Thus, a set of political opportunities was in place during this time in Canada that supported the demands of disability groups (Driedger 1989). The build-up of bureaucracies also led, however, to the need to find substantive roles for bureaucrats, such as managing the representation of disenfranchised minority groups. Such roles created legitimacy for these groups, yet simultaneously threatened their autonomy and created dependence (Pal 1993). The involvement of people with disabilities in the policy reform process grew out of two key concerns: integration and participation. By the late 19805 it was a basic axiom of disability rights organizations that full integration of people with disabilities into mainstream society was the goal - and responsibility - of public policy. Key examples of the results of disability group advocacy on this issue were:

21 From Asylum to Independent Living • the de-institutionalization of persons with mental disabilities into community-based housing, and the provision of community-based services for them; • the desegregation of children with mental disabilities from special educational institutions and classrooms into public schools; • the closing of sheltered employment settings and support for competitive work opportunities. Second, some people with disabilities had become convinced of the need for them to more actively participate in policy making so as to avoid the creation of new laws and policies that failed to secure their full integration into society. These people with disabilities and their organizations were mistrustful of state bureaucracies and health care professionals for failing to promote their basic interests in life. Thus, the norm of citizen participation became not simply a goal of disability policy but also a defining feature of a legitimate policy reform process itself. The history of the involvement of Canadian disability organizations in policy making reveals a gradual strengthening, from dynamic individual leaders to focused veterans' interest groups to broad-based coalitions jockeying for position in the social welfare state. This history parallels a more general empowerment of citizen groups in the policymaking arena. Certain cultural goals of group identity and autonomy are also served in the new disability social movement that evolved in this era.

22 A Seat at the Table Table i Early Involvement of Canadian Disability Organizations in Policy Making Legislation

Organizations

PRE-WORLD WAR I

Ontario Workmen's Compensation Act (1914)

WORLD WAR I

Pensions, medical care, vocational training for veterans (1918-20)

War Amps Association Canadian Tuberculosis Veterans Association Sir Arthur Pearson Association of War Blinded Soldiers and Sailors Canadian National Association for the Blind

WORLD WAR II

Veterans Charter (1944-48)

National Veterans Association Canadian Paraplegic Association

POST WORLD WAR II

Medical Rehabilitation Grant (1953)

Canadian National Association for the Blind

Disabled Persons Allowance Act (1954)

Canadian Paraplegic Association

Vocational Rehabilitation of Disabled Persons and Coordination of Rehabilitation Services Act (1961)

2 Theoretical Frameworks for Citizen Participation: Contextualizing the Case Studies

KEY CONCEPTS

We now turn to a discussion of concepts in the field of citizen participation that are essential for understanding the events analysed in this book. We also review a variety of theories of social change that are relevant to the process of citizen participation, as these theories will help provide a conceptual basis for the case studies on policy participation that follow. Citizen participation is a vast field of study that has been investigated in many sectors such as health, environment, governance, international rural development, and urban renewal. It has become a central value and strategy in these sectors for a variety of reasons including efficiency, equity, and social cohesiveness (Midgeley et al. 1986). Citizen participation, like other social phenomena such as education, can be conceptualized both as a means and as an end in itself. When understood as a means, the term "instrumental participation" is used, to indicate the process of involvement with the intent to achieve a predetermined common social goal or objective. Participation in this sense is a way of using existing physical, economic, and social resources to attain a valued outcome or benefit, and is also a means to achieving efficiency in organized activities. Examples of instrumental citizen participation in the policy development arena include presenting briefs, serving on advisory committees, and lobbying government. This form of citizen participation tends to be short-term and does not necessarily increase individuals' capacity to participate. Instrumental participation is often associated with interest group theories of policy making.

24 A Seat at the Table

When participation is understood as an end in itself, the term "transformational participation" is used. It indicates a long-term process intended to develop and strengthen people's capabilities to involve themselves in social development. Participation in this sense promotes ideological and normative goals such as social justice, equity, and democracy (Pitkin 1969). In the policy arena, transformational participation includes activities designed to build organizational reputations and develop capacities to become permanent partners in the policymaking process. Transformational participation is often associated with new social movement theories of policy making. The ends and means argument in citizen participation is linked to the interpretation of its purpose. Currently, there are three broad interpretations of the purpose, or function, of citizen participation (Cohen and Uptoff 1980, Oakley 1991, WHO 1991, Mikkelsen 1995). Citizen participation understood as contribution is the voluntary donation of people's resources to a common good or goal (participation as an instrumental means). For example, volunteers from within an organization may participate in activities such as bake sales or bingos to raise funds for their own organization. This purpose values the efficiency obtained in meeting instrumental objectives through people's own efforts. It implies that community interests are cohesive and that internal community conflicts can be resolved through democratic processes. Participation as contribution is often promoted by the state and does not necessarily imply that control and direction of activities pass to the local level (Cohen and Uptoff 1980). Citizen participation as organization is the process of organizing or arranging people in common activities (participation as both means and end). For example, participation in board of director development activities meets the purpose of organization. In this interpretation, the origin and form of organization are crucial. Some community organizations are conceived and introduced by external agents such as government bureaucracy, while others emerge and take shape from the process of community members' own involvement (WHO 1991). In either case, this purpose for participation values the process of organizational development to achieve social integration of individuals, group cohesiveness, and common objectives (Pateman 1970). A more recent interpretation is citizen participation as empowerment, which implies that people at the local level acquire management skills and the ability to make decisions that affect their lives (participation as a transformational end). For example, participation in political coalition or advocacy activities may achieve organizational empowerment. Participation as empowerment assumes that people have a right to

25 Theoretical Frameworks for Citizen Participation

organize themselves and that conflicts between social groups are resolvable at the local level. When the purpose of participation is empowerment, it acknowledges the need for community members to exercise power, and values the social equity that is achieved when power sharing happens. Barriers to participation arise from social conflict and can be addressed by seeking compromise on conflicting policies or by removing social barriers through political reform (Mikkelsen 1995). Analysis of citizen participation through an "empowerment" lens entails a study of the mechanisms by which participation addresses inequitable power relations (Stone 1992). Citizen involvement in policy making is a special case of participation that often involves advocacy. Neufeld (1991) identifies six levels of advocacy for disadvantaged persons, ranging from a focus on the individual and family (self-advocacy, family advocacy, and one-to-one advocacy), to a focus on collective society (legal advocacy, system advocacy, and public advocacy). If we propose that the legitimate purpose of citizen participation in disability policy making is empowerment and participation is conceived as a transformational phenomenon that influences the process of decision making, we discover a number of implicit assumptions (Arnstein 1969, Katan and Prager 1986, Rifkin et al. 1988): that citizens have a basic right to participate and that the objective of their participation is to introduce changes in social conditions; that active participation improves relationships between community members and community organizations, and thus reduces alienation; that through participation, disadvantaged groups can gain access to resources and positions of control; and finally, that participation results in attitudinal changes in community members, organizations, and society at large. Participation as empowerment emphasizes the exercise of power as a central feature (Rifkin 1986). However, the concept of power is itself problematic. Some authors equate power with force and coercion (Dahrendorf 1959); some use the notion of authority (Weber 1947); and others suggest that power is a bipolar concept entailing both dominance of authorities and dependency on the part of the oppressed (Emerson 1962). More recent formulations have incorporated Gramsci's concept of hegemony, according to which the dominance of a group rests upon its ability to translate its own world view into a pervasive ethos (Femia 1985). In the context of disability, the hegemonic notion of able-bodied dominance has been pervasive. In these recent views, power is not an object (which can be possessed), but is a medium or process through which social relations involving conflict are expressed (Giddens 1979).

26 A Seat at the Table It is essential to distinguish between the terms influence and power. Having influence does not necessarily imply having power or the ability to determine the outcome of a decision-making process. Influence only implies a contribution to the processes of information gathering, deliberation, and argument (Pateman 1970) and is akin to a neutralized form of interest group participation. Sociological theory suggests that concrete elements such as activities, division of labour, networks, social relationships, organizational groups, hierarchies, physical or material conditions, financial requirements, age, and environment can all be considered as structural factors that are relevant to citizen participation (Rocher 1972). These elements are reflected in observable social institutions that may affect citizen participation. Oakley (1991) divides these elements of structure into three categories that are relevant to participation. The social-cultural dimension includes structures of social relationships that have developed historically, such as the dependency and marginalization of minority groups and women. It also includes dominant norms and values regarding disadvantaged groups such as poor persons or those with disabilities. The organizational dimension includes administrative networks, procedures, and the attitudes of planners that shape decision-making roles. This dimension includes resources for participation as well as organizational history, mandates, and program objectives. Finally, the political-legal-economic dimension includes ideology, political entities, legislation, and economic systems that facilitate or limit citizen participation. The political-legal-economic dimension also includes policy decisions to include or exclude certain groups such as persons with disabilities from policy making. Any, or all, of these broad structural dimensions may be operative in a participatory setting. It is important to emphasize, however, that factors in these structural dimensions do not act alone but are mediated through the agency of individuals (Freeman 1983). Thus, macro- and micro-influences can combine in the phenomenon of citizen participation. In order to study them, methodologies that can capture their interaction are required (Kelly 1989). One possible methodology is the analysis of the perceptions of community members about structural influences on participation. We have chosen this methodology in order to focus primarily on the organizational dimension of participation, mostly from the perspectives of disability organizers themselves. Overall, a perspective on participation that recognizes a variety of structural dimensions, the role of human actors, and the importance of power appears to be needed for illuminating the process of citizen participation in policy development.

27 Theoretical Frameworks for Citizen Participation TOWARDS A DEFINITION OF CITIZEN

PARTICIPATION

Considering the variety of possible analytic perspectives on this field, it is not surprising that there are numerous definitions for citizen participation. The challenge is to select or develop definitions that are consistent with the assumptions of the study. Specifically, a suitable definition of citizen participation in disability policy making should address human agency as well as structure. The definition should incorporate the means/end issue and focus on an organizational-empowerment interpretation of participation. Finally, the definition should explicitly address concepts of power. Citizen participation has a variety of meanings that focus on sharing in activities by virtue of entitlement or right and derive from the basic constructs of democratic theory (Neufeldt 1988). Pateman, in her classic political science work Participation and Democratic Theory (1970), notes that the notion of participation is used widely, often with an imprecise definition or no definition, to include almost any situation in which even a minimal amount of interaction takes place. This interaction might imply little more than that a particular individual was present at a group activity. Pateman suggests that suitable definitions of participation must include four elements: participation by someone, participation with someone, participation in something, and participation for some purpose. She accepts the following definition of citizen participation: "A process in which two or more parties influence each other in making plans, policies or decisions. It is restricted to decisions that have future effects on all those making the decisions and on those represented by them" (French et al. 1960, 3). Pateman interprets this definition of participation to exclude the following situations: where an individual merely takes part in a group activity; where an individual is merely given information on a decision affecting him or her before it is executed; or where an individual is present at a meeting but has no influence. From an egalitarian perspective, Pearse and Stiefel (1979) define citizen participation with a purpose of empowerment as: "the organized efforts to increase control over resources and regulative institutions in given social situations, on the part of groups and movements of those hitherto excluded from such control" (8). This definition reinforces the centrality of the issue of power in citizen participation. Pearse identifies the intended outcome of participation as "control" over resources and institutions by the "excluded." Changes in political and economic relationships are also implied. The community is seen, not as a cohesive whole with mutual interests, but rather as a constellation

28 A Seat at the Table of distinct advantaged and disadvantaged groups. This definition of participation satisfies Pateman's general criteria, addresses both the organizational and empowerment purposes of participation, uses a structural perspective, and is applicable to many disadvantaged groups within communities. With these conceptual and methodological issues in mind, we propose the following definition of the participation of citizens with disabilities in policy making: Citizen participation is the organization of activities by groups of persons with disabilities who are at a structural disadvantage, in conjunction with able-bodied persons who are not, to increase control over the means to influence the policy environment and, in doing so, to improve their quality of life. There are doubts as to whether this definition is appropriate to represent family member participation, or the participation of able-bodied advocates for persons with disabilities. THEORIES OF PARTICIPATION

Virtually every field that has attempted to involve community members in organized public activities has contributed to the knowledge base of citizen participation. There is an extensive literature in this area encompassing the disciplines of sociology, political science, management, psychology, health, social work, and environmental studies, among others. However, much of what has been written on citizen participation, and especially on its structural dimensions, is descriptive and non-theoretical (Sadler 1979, Howell et al. 1987, Canadian Council on Social Development 1988). The study of citizen participation has its primary roots in the disciplines of political science and sociology. Since we are trying in this book to understand the social context in which organizations of persons with disabilities operate, we focus principally on sociological theory but also present a brief overview of citizen participation in a political sense. A key issue in political science theories of democracy is the distinction between representative democracy and participatory democracy (Pateman 1970). Underlying this distinction is the struggle between the liberalist values of free choice espoused by Locke, Hobbes, Bentham, and Mill and the democratic values of equality promoted by Rousseau andJ.S. Mill (Weingert 1976, Wolfe 1977). Liberalist views are reflected in the "first generation human rights" of free speech and private property, and assert that all citizens have the right to influence political decisions that affect them (Howell et al. 1987). Some authors claim that representative democracy and political parties are participatory mechanisms to implement this view (Mill 1859,

29 Theoretical Frameworks for Citizen Participation

Mills 1959, Dahl 1961). Others claim that the concept of participation itself implies the breakdown of representative democracy: "At base, the demand for participation connotes criticism of the existing system of representation" (Sadler 1979). Disability activists have often expressed this view. "Second generation human rights" have emerged in this century from a broader view of democracy that recognizes that liberalism in most nations results in great differences between individuals in terms of political and economic power. The state has assumed the responsibility to ensure equal access to public service safety nets such as health care, education, housing, and social welfare. These services both prepare individuals for, and protect them from, the economic competition implicit in first generation rights (Howell et al. 1987). Notions of participatory democracy that are used to support this view primarily involve an educative process in which individuals learn to cooperate beyond their individual interests to achieve both public and private security (Pateman 1970). Thus, participation in the political science domain reflects fundamental tensions between the right to compete in a market economy and the right to an equitable standard of living. Political participation also reflects basic tensions between individual and collective rights. In the sociological domain, a variety of theories have been used to explain citizen participation. At the individual level, social exchange theories such as Olson's (1968) rational actor model and Knoke's (1990) motivational model of collective action can be used to explain personal reasons for participating in community activities. At the group level, theories such as negotiated order (Day and Day 1977) and collaboration theory (Gray 1989) can be used to explain group dynamics in participation. Our research found, however, that social change theories are more useful for exposing the structural factors that facilitate or limit participation and for explaining the emergence of a popularized notion of citizen participation. The major bodies of contemporary social change theory related to citizen participation in policy making are those concerned with community organization, social movements, interest groups, and political economy. This chapter illustrates the multiple approaches that one can take in analysing community participation. The micro-macro tensions between individuals' aspirations to contribute and influence policy and the state's interests in legitimation and relevancy are illustrated by considering a variety of theories. As well, the topic of citizen participation in policy making requires an approach that considers the motivations of all of the possible actors.

go A Seat at the Table Community Organization Theory

Community organization theories of participation assume the involvement of community members in groupings defined either by affinity or by geography. The literature on participation in community organizations can be divided into that which addresses functions of participatory organizations and that which addresses the process of participation. In a classic analysis, Rothman (1968) identifies three functional models of community organization: locality development, social planning, and social action. Organizations whose functions is locality development pursue community-wide economic and social change through the broad contribution of a spectrum of citizens in the community. Locality development takes a view of the public interest that assumes that a common good exists and can be determined instrumentally through a broad, cooperative decision-making process. Values of harmony and communication are implicit in this model, which appears to underlie calls for citizen participation in the public policy strategy of health promotion (Milio 1988). A second model, that of social planning organizations, emphasizes a technical process of problem solving to achieve rational, deliberate, and controlled change. Participation of consumers in the community varies depending on the problem, the organization, and the knowledge that expert planners judge to be needed. The social planning view of the public interest assumes that with the proper combination of expertise, judgement, and conscience the community's needs can be met. Professional elites often play the key role in a social planning model, which values rationality, objectivity, and professional purpose (Lalonde 1974, Epp 1986, WHO 1986). The third model, that of social action organizations, aims to make fundamental changes in local social conditions and institutions. Participation and empowerment of disadvantaged groups are emphasized. A social action view of the public interest assumes that a disadvantaged group's vested interest is legitimate. Central concepts in social action include inequalities in resources, imbalances in power, and values of community control and autonomy (Schler 1970, Morley et al. 1983). Values of social justice and equality are implicit in this model, which appears to underlie the community development approach in health promotion (Labonte and Penfold 1981, Dixon 1989). These social action concepts closely reflect the structural perspective on citizen participation. Rothman (1968) notes that these functional organizational models often overlap in practice, but in so doing often result in contradictory

31 Theoretical Frameworks for Citizen Participation

activities and confusion amongst staff and participants. Stirling (1989) suggests that the functions of community organizations have developed beyond early social action conceptualizations of enabling, mediating, and activism towards more recent trends of "institutional access," "local cooperation," and "intersectoral coordination." These trends demonstrate an increasing bureaucratization of the functions of community organizations in their relationships with the state. A second stream in community organization theory focuses on participatory processes. These concern the depth of citizen involvement, or their influence and power in local projects. In a key paper, Arnstein (1969) proposes that the process of citizen participation is fundamentally concerned with the institutionalization of power relationships. The process of participation in any project varies from nonparticipation, through tokenism, to full citizen control. Arnstein's typology implies a zero-sum power situation in which there is deemed to be a fixed amount of power or benefits in society. The power that one group wins is achieved only through loss of power by another group. Arnstein's "Ladder of Participation" is implicit in many of the efforts to develop scales for evaluating the degree of citizen participation (Rifkinetal. 1988). Alternatively, Susskind and Elliott (1983) propose a non-zero-sum gradient of participatory influence: from paternalism (centralized decision-making), to conflict (citizen confrontation over control of policies), to co-production (negotiated decision-making wherein power is shared and both parties gain information about community problems). Crenson (1983) notes, however, that while the co-production process tends to occur more often in low-income neighbourhoods, it usually benefits the high-income residents of these neighbourhoods. This imbalance raises the issue of who benefits from a negotiated decision-making process. Most community organization theorists view the practice of citizen participation as a blend of these organizational functions and participatory processes. Particular methods of community work are appropriate at different times for different issues. This conceptualization makes analysis and evaluation of community projects problematic. There is a consistency of view, however, that over time community organizations must address their relationships with outside groups, institutions, and social structures that influence the well being of the community (Jackson et al. 1989). Overall, community organization theory is concerned with explaining the structure, function, and process of participatory activities in local policy making and is important in the analysis of factors that contribute to successful community involvement and also in the

32 A Seat at the Table development of evaluation strategies for citizen participation (Rifkin igSi.Rifkinetal. 1988). Social Movement Theory A second stream in social change theory that is applicable to citizen participation in policy making is contained in the literature on social movements. Social movement theory is concerned with the development, maintenance, and impact of collective organizations of social change (Hannigan 1985). Early theories of social movement focused on the emergence of social problems and the motivations of aggrieved populations and leaders in responding to these problems (Turner and Killian 1987). However, these analyses of collective behaviour gave little explanation for the participation of non-aggrieved persons (Olson 1968) or the development of community organizations in the social movement (McCarthy and Zald 1987). Two social movement theories apply particularly to citizen participation in disability policy making: resource mobilization theory and new social movement theory. Resource mobilization theory proposes an economic analogy to explore the ability of specific social movements to acquire and use monetary and labour resources to facilitate organizational objectives (McCarthy and Zald 1987). The resource mobilization approach examines the variety of resources required, the linkages of organizations with their external supporters, and the creation of change in an organization by this resource dependency. In the context of policy making, resource mobilization theory can be used to explain the ability of community organizations to secure funds for citizen participation in advocacy and their resulting ability to become intermediary change agents between the state and the community. While this theory can explain how an advocacy organization is set up and how it maintains levels of citizen participation, it sheds no light on the reasons why organizations initially arise or on their potential for long-term survival. This issue is important in transformational participation and in the participation of disability agencies in coalition activities. New social movement theory addresses these transformational issues. Castells (1983) argues that recent social movements have developed in response particular historical and cultural events that are anti-institutional and self-identifying in nature. He asserts that the survival of a social movement organization depends on more than a rational mobilization of resources alone, since such a narrow focus inevitably leads to institutionalization and loss of purpose. Castells proposes that the future of such organizations depends on improved collective conditions, an autonomous community culture, and politi-

33 Theoretical Frameworks for Citizen Participation

cal self-management. Similarly, Touraine (1981) identifies autonomy and self-identity as crucial requirements for new social movements that are more concerned with reform or creating alternatives within the dominant society, than they are with increasing their own power. More broadly, Castells (1989) conceptualizes citizen participation itself as a component of a general social movement for local autonomy. In summary, social movement theories may help explain how citizen participation is supported, identify why it arises, and assess its potential for sustainability. Interest Group Theory

Another body of theory can be used to explain who participates in policy making and what benefits occur from participation. Interest group theory, the predominant political theory of Western democracies, assumes that societies are comprised of constituencies with different goals and that conflicts between competing interests can be resolved in various decision-making fora. Pluralism is a particular interest group theory that assumes that the government acts in response to the pressures of competing interest groups (Dahl 1961). Pluralist research attempts to identify who the competing parties are, to what extent their interests are mobilized, what resources they command, and what strategies are used to gain funding (Milio 1988). Pluralism has been criticized for assuming that competing interests have equal power bases and for neglecting structured power imbalances in society. The system of democratic pluralism is specifically criticized for its limited representation: the poor are the major collectivity excluded from full participation in the system (Herman 1983). Elite theorists argue that political power is concentrated in established elite groupings (Mills 1959). Neo-marxists also argue that elite groups control the political process through influence over the state, which acts as an instrument of economic class domination (Miliband 1969). An alternative interest group theory is concerned with identifying the dominant, challenging, and repressed interests in decisionmaking groups and assessing how their positions are maintained in relationship with the predominant institutional and class structures. In an analysis relevant to social policy making, Alford (1975) argues that the traditional power of dominant "professional monopolizers" has been challenged by "corporate rationalizers," or groups of health and social administrators, bureaucrats, and business persons intent on rationalizing the social welfare system to make it more efficient. Alford identifies community advocates as a third interest group that has largely been repressed in its attempts to gain influence. The

34 A Seat at the Table repression of community advocates can be partially explained by layprofessional conflicts (Young 1975) that are part of the disability movement's history. One of the limitations of interest group theories has been their inadequate conceptualization of the role of the state. Traditionally, the state has been viewed as a neutral mediator (Latham 1952), as an equal player (Dahl 1961), or as a body primarily interested in maintaining the status quo (Alford 1975). These views do not explain the current tendency of the state to actively promote a social agenda that is based rhetorically on fundamental change, for the advancement of persons with disabilities. Theories of political economy of the state help to clarify this tendency. Political Economy Theory

Why does the state espouse citizen participation as a primary strategy in policy making? Political economy theories relate the policy arena to society as a whole. They acknowledge the powerful interests that rule Canada, consigning an important role to ideology, and they adopt assumptions of critical theory such as emancipation, structural influences, and the power of knowledge (Salmon 1989). An additional core consideration in the political-economic view is the legitimation of different groups as participants in decision-making. Theories of political economy are generally concerned with the influence of broad economic and political factors on the role of the state and its actions (Dahrendorf 1959, O'Connor 1973). Theories differ on the basis of their views of the role of the state in a class society. In Dahrendorf's view of class structure, post-capitalist society has a new middle class, increased social mobility, and more equality between classes. Power does not derive from the economic base directly, but through relationships of political authority that the state controls. The state camouflages the real source of control by espousing "participatory democratic" institutions, of which citizen participation may be viewed as the most recent example. Dahrendorf notes that increased state control of the economy in a social welfare state brings a need to legitimize this control through citizen participation in order to augment the legitimacy usually granted by elections. In a purely representative democracy, electoral support for the ruling party does not sufficiently legitimize the increasing bureaucratization of society, and this deficit in support is actively solicited by those in power. The public, even those who are not supporters of the ruling party, are likely to accept their new role in citizen participation, since it seems to represent an opportunity to exert influence.

35 Theoretical Frameworks for Citizen Participation

Dahrendorf emphasizes this political function of citizen participation as a form of participatory democracy. The neo-marxist perspective on the state, in contrast, is based on a view of the capitalist state as the instrument of the economic ruling class (Miliband 1969, O'Connor 1973, Poulantzas 1974, Gough 1979). It perceives the state to be dominated by the ruling class principally for economic purposes, that is, to maintain capital accumulation (Poulantzas 1974), and also for reasons of class solidarity (Miliband 1969). O'Connor (1973) argues that the state must also have a legitimation function, in addition to its accumulation function, in order to maintain social harmony. Welfare state programs, which can include a "contributory" participation component (e.g., workfare), are seen to legitimize the participation of the public in non-economic activities (Gough 1979, Offe 1984). On a societal level, Navarro (1976) explains that highly capitalist states prefer democracy to be exercised through a limited electoral system that functions to legitimize the political process rather than to change it. At the community level, Navarro (1975) documents the domination of decision-making bodies within health institutions by corporate and upper middle class citizens. Similar dominance has been noted in Canadian institutions (Clement 1975). Citizen participation in policy development is viewed by neo-marxists as a legitimation strategy of the state through which the community can be given apparent control over non-economic aspects of the health and social sectors insofar as this perceived control does not result in capital accumulation problems (Waitzkin 1978, Midgeley et al. 1986). The state may also encourage citizen participation in order to gain support in its challenge to fiscally conservative interests that may, for example, wish to restrict access to health care and social services (Alford 1975, Crichton 1980). Castells (1989) also notes that major world forces such as technology, international political influences, and global economic network structures are weakening the effectiveness of intermediate social movements such as citizen participation. The potential for citizen participation to seriously resist these macrostructural determinants is doubtful, according to Castells' analysis. Neo-corporatism, an alternative political economy theory derived from liberalism, may have application to citizen participation since it is concerned with managing decision-making processes by the state (Mulgan 1984, Van Til 1984). Neo-corporatism asserts that important decisions should be made by three primary institutions: the state bureaucracy, large corporations, and labour organizations (Panitsch 1980, Cameron 1984). The process of "co-determination" by government, business, labour, and other key social sectors has been proposed

36 A Seat at the Table

as a mechanism to integrate economic, social/health, and environmental policy making (Hancock 1994). Although undemocratic in principle since they exclude the masses, neo-corporatist models may represent a functional advance over traditional "representative" majority-rule political bodies in their explicit acknowledgement that no single sector can unilaterally make structural changes. In addition, nee-corporatism may ensure a public accountability in corporations and the labour movement that is absent in the present system. Voluntary associations and groups of disadvantaged persons such as disability organizations have tended to be excluded from these more recent decision-making processes since they are not believed to control the resources necessary to affect basic socioeconomic conditions (Van Til 1984). There is no inherent reason, however, that disability groups could not participate in a neo-corporatist model. The key condition for participation is the perceived legitimacy of the community sector, a particular problem for those perceived to have diminished capacity (Mulgan 1984). Political economy theories are useful for studying the motivations behind the state's promotion of citizen participation and for understanding limitations in the state's ability to facilitate it. These theories also offer a framework for analysing the legitimation of citizen groups in decision making. In sum, political economy theories provide an important perspective on the motivations of the state and may explain the resources provided to citizen participation in policy making, and the state's expectations of it. They also provide a balance to theories of community organization, social movements, and interest groups by focusing on socio-political conditions. A C R I T I Q U E OF C I T I Z E N P A R T I C I P A T I O N

Numerous contradictions have been noted in regard to citizen participation (Tesh 1988). Farrant (1991) points out, for example, that, while participation is supposed to be a key strategy in public policy projects, there is little resource support for it in practice. Advocacy groups are often understaffed and limited in their funding terms, a situation that precludes public involvement in needs identification, skill development, and ongoing policy development activities. Although community members are supposed to be central in participatory strategies, competition between more powerful professional and bureaucratic sectors often marginalizes the community (Smithies 1987). Similarly, even though community experience is claimed to be the primary basis for planning local projects, funders often give more credibility to scientifically based knowledge (Stacey 1988).

37 Theoretical Frameworks for Citizen Participation Pederson et al. (1988) note that citizen participation often implies mass community activities, but that in reality specific interest groups tend to dominate. Participation may be intended to promote equity, but there is always a risk of inequitable distribution of benefits in a policy context, depending on who is involved and how the process is controlled. On a macro-level, Navarro (1984) notes that there is a contradiction in the state's advocating local autonomy while maintaining centralized, bureaucratic planning of public programs. At the local level, there is a parallel contradiction in the use of the rhetoric of empowerment without an understanding of power relations in the community (Farrant 1991). Similar concerns about citizen participation are voiced in Canadian jurisdictions. In Ontario, Pederson and Signal (1994) note ambiguity in government calls for citizen participation that on the one hand promise group empowerment and on the other hand expect individual responsibility. They question whether this ambiguity results in a false consensus in advisory groups such as the Ontario Premier's Council on Health Strategies, which can reflect individual members' perspectives rather than formal agreements by constituent groups. This confusion, which will be discussed later in a distinction between representativeness and representation of consumer groups, may mask internal conflict and make concrete policy progress unlikely. Overall, social movement theories and interest group theories seem to provide the most appropriate explanations for citizen participation in disability policy making. These theories tend to capture the resources required for participation, the unique aspects of disability culture, and the structured interests of opposing professional and bureaucratic actors. In contrast community organization theories of participation generally assume more established forms of organization than the emergent disability groups in these cases demonstrate. Finally, political economy theories of citizen participation, while attractive on a macro-level, require that data be collected on a larger scale than these four case studies can provide.

3 Constitutional Ferment: Proceeding to Patriation

Our case studies of the participation of Canadians with disabilities in policy making can be organized generally into federal cases - those dealing with rights of inclusion in Canadian society; and provincial cases - those dealing with capacity for decision making. The federal cases deal with policy making on issues of human rights, prohibition of discrimination, and access to services, which are topics of interest to many minority groups. The provincial cases deal with issues of capacity, decision making, and the role of personal advocates, and are of particular interest to persons with disabilities as well as to seniors. Since the advent of the Charter of Rights and Freedoms in 1982, Canadian politics has increasingly responded to the demands of many diverse citizens' groups for inclusion in the policy-formation process. Advocacy groups representing women, aboriginals, ethnic minorities, gays and lesbians, and people with disabilities have had a major impact on the legislative process at all levels of government. Many students of Canadian politics attribute this increased influence to the growing second generation "rights consciousness" evident among disadvantaged groups in our society: citizens have a greater tendency to demand official governmental recognition and support of their concerns and entitlements using the specific language of constitutional rights. And, according to Alan Cairns (1990), the clauses of the Constitution that single out particular characteristics of citizens, such as those related to our multicultural heritage, our different languages, and our unique religious beliefs, create new

39 Constitutional Ferment

civic and constitutional identities. We are no longer simply Canadian citizens, but people with specific social or political identities grounded in our differences. These differences in turn shape how we relate to each other and to government. Explanations of policy making from both interest group and social movement perspectives have been facilitated by this trend. It is within this context that advocacy groups representing individuals with disabilities emerge and find their place in the policy-formation process. Since section 15 of the Charter of Rights and Freedoms gives explicit recognition to the injustice of discrimination based on mental and physical disability, advocacy for the rights of persons with disabilities has become an extension of this constitutionally based set of legal rights and entitlements. Moreover, if effective advocacy requires participation in the complex machinery of governmental policy making, then groups representing people with disabilities must become significant players in this process. In each case study, we begin by sketching the context within which a specific policy issue emerged and by describing the interests of advocacy groups in that issue. We then present a detailed chronological overview of the main events in the development of policy regarding that case. We continue with our analysis of the organizational characteristics of the featured disability groups, in particular, their mandate, resources, and networks with other organizations, as well as their members' participation. A close look at the various processes of citizen participation follows. We trace the roles and strategies undertaken by key groups and coalitions in order to influence the legislation. In addition, we identify the basic mechanisms through which key advocacy groups gained access to significant policy-making centres. Finally, we confront the outcomes of disability advocacy group participation in these policy processes. Here we examine both the "objective outcomes" - the actual legislation achieved and the influence advocacy group members had in shaping it - and the "subjective outcomes" - the perceptions of the main stakeholder groups about their roles and influence. We also try to elicit the perceptions of key stakeholders about their successes and failures in these policy processes and about the lessons they learned over the course of their participation. Since the Charter of Rights and Freedoms represents the fundamental legal argument for including persons with disabilities in the policymaking process, it is important background for both federal and provincial cases. Thus, we start by reviewing the Charter's appearance on the Canadian scene as part of the patriation of the Canadian Constitution from Great Britain.

4-O A Seat at the Table

THE PATRIATION OF THE C A N A D I A N C O N S T I T U T I O N : A C H R O N O L O G Y 1971-1980 The Victoria Charter

In 1971 one of Canada's periodic attempts at constitutional accommodation went down to defeat. This round of constitutional negotiation and review had begun in 1968 and ended with Quebec vetoing the Victoria Charter in 1971, primarily because of the Trudeau government's refusal to grant Quebec jurisdiction over important aspects of social policy (language, income support, occupational training, and unemployment insurance). According to Peter Russell in Constitutional Odyssey, this defeat was significant in many respects. First, and most important, it represented the first "mega-constitutional" review process to fail. This was a constitutional review process that was concerned with fundamental questions about our political identity and not simply with narrowly defined amendments or specific technical proposals dealing with amending formulae. "Mega-constitutional" review processes are exceptionally charged events that question the very soul of our political community and the basis of our common citizenship. They tend therefore to reach beyond the various political elites and involve the general population more directly (Russell 1993, 75-92). Second, according to Russell, the Victoria Charter attempt was the first serious clash between traditional views of Canadian federalism, as articulated by Trudeau-brand liberalism, and emerging Quebec nationalism. Despite vows taken in 1968 by the Trudeau government that Quebec's concerns would neither dominate the agenda nor determine its final outcome, we see Quebec's interests winning out for the first time. A third reason for the significance of the Victoria Charter was that much of its substance was later to reappear in the 1982 Patriation document, the Meech Lake agreement, and the Charlottetown Accord. For example, Trudeau pushed for a "bill of rights" to be included in the Victoria Charter that later appeared as the Charter of Rights and Freedoms in the 1982 patriation of the Constitution. Also, the amending formula for constitutional change in Victoria was similar to the one found in the Charlottetown Accord. Finally, according to Russell, although the Victoria Charter process represented the cutting edge of constitutional thinking of Canada's political elites, and despite a formal agreement among first ministers as to the contents of the reform package, it suffered defeat at the hands of the Quebec legislature.

41 Constitutional Ferment

This first round of mega-constitutional deliberation was clearly dominated by various political elites, with the federal government exercising the lion's share of control over the process. For the most part, advocacy groups and citizens' groups were yet to make their appearance on the constitutional scene. Constitutional experts, and scholars studying the process of policy participation, tended to focus on intergovernmental negotiations, separate federal and provincial political initiatives, and questions concerning the legal status of various proposals. For example, according to Russell, during the mid to late 19705, Aboriginal rights were not generally thought to be part of the constitutional agenda, nor were rights for people with disabilities. This situation was not to change until the final stages of the patriation process in the early igSos, and even then these groups were still marginalized. This is not to say that various groups of citizens did not have legitimate concerns that might require constitutional recognition or protection. The point is that they had not organized into formal lobby groups to press their claims. Moreover, the federal Liberals were not particularly receptive to recognizing differences such as those based on disability and ethnicity, because the prevailing liberal conception of citizenship emphasized our common political bonds with respect to only one community - the community of a united Canadian federation. Also, the Liberals were hostile to Quebec's continuing claims for permanent constitutional differentiation and so they fought against any attempts to divide citizenship along so-called sectarian lines. Today, in the post-Meech Lake and Charlottetown Accord world of constitutional struggle, such exclusionary thoughts are virtually inconceivable. Since there is very little literature on the role of advocacy groups in the 19708, it is difficult to map out their activities during this time with respect to constitutional change. Nonetheless, we sketch the major political events between 1976 and 1980 as a background to the events that led to the patriation of the Constitution in 1982. It was not until the Special Committee of the House of Commons on the Constitution was struck in 1980 that we see any significant involvement of advocates for persons with disabilities in this context.l Motivating Round Two of the Mega-Constitutional Process

After the defeat of the Victoria Charter in 1971, constitutional negotiation receded into the background for five years. But in the early spring of 1976, with Quebec poised to elect the separatist Parti Quebecois in the upcoming fall election, Trudeau sent a letter and draft proclamation

42 A Seat at the Table to the premiers of the provinces that set out his plans for a proposed constitutional agreement.2 According to Roy Romanow, then attorneygeneral of Saskatchewan, "both the letter and the draft proclamation were based on the assumption that Quebec nationalism was the most important issue behind constitutional reform."3 Quebec nationalism was not the only important item on the constitutional agenda, however. Significant changes to the social, legal and economic landscape of Canada were making an impact on a renegotiated federalism. Three of the most important areas of changes were those associated with western Canada's newly discovered wealth in the petroleum industry, issues of Aboriginal rights, and increased regional alienation. In the early 19705, Alberta's rapid increase in wealth and urbanization, which was directly attributable to the skyrocketing international price of oil and the strong electoral support for the conservative government of Peter Lougheed, gave that province a newfound sense of power. The strengthened alliances forged between the petroleum industry and the Alberta government increased resolve that the province maintain control over this form of wealth creation. Could the Constitution adequately ensure provincial control over economic resources?4 Ottawa's initial reaction to the rapid increase in oil prices alarmed the provinces. According to Russell's analysis, the federal government's policy at that time was to protect Canadian oil consumers from price increases by keeping domestic oil costs well below international levels. It introduced an oil export tax to finance this policy (which, in effect, subsidized consumers, most of whom lived in central Canada) at the expense of the western provinces. Furthermore, to ensure that Ottawa, and not the provinces, had access to the major share of tax revenues generated by the oil boom, the federal government provided additional regulations that prevented oil companies from claiming royalties paid to the provinces as federal income tax deductions. And finally, in 1978 and 1979, two Supreme Court of Canada decisions found that provincial schemes to tax and regulate resource industries went beyond the provinces' constitutional powers.5 Thus, most westerners felt that the constitution left them unfairly vulnerable to the interests of central Canada. A second change that affected federalism in the 19708 concerned the status of the various justice-based claims advanced by First Nations groups. It is well known that constitutional recognition of land claims, and cultural preservation for First Nations, was not part of Trudeau's vision of the Canadian political community. Indeed, the group most often recognized as a legitimate minority within Quebec in need of

43 Constitutional Ferment constitutional protection for self-determination was not the First Nations but the anglophone minority. However, in 1973 the Canadian Supreme Court ruled in a landmark decision (Calder v. Attorney-General of British Columbia [1973] S.C.R. 313) that Aboriginal title existed in Canadian law. In this case the court was asked to rule on whether the Aboriginal title of the Nisga'a people to their ancestral lands had been forfeited by laws of the old colony of British Columbia. Although the courts did not find in favour of the Nisga'a people, they gave, for the first time, constitutional recognition to the Aboriginal right to advance land claims.6 This decision was the determining factor in the federal Liberal government's change of policy toward First Nations peoples. The federal government now recognized the need to enter into comprehensive land claims negotiations with First Nations groups. According to Russell, this was the first step to a broader constitutional recognition of Aboriginals as founding peoples. A third change concerned the rise of specific regional identities and the alienation this created. This alienation emerged essentially as a reaction to Ontario and Quebec's domination determining the constitutional agenda and to the centralization of decision-making authority with the federal government. A major effect of regional alienation on the political level was that during the 19703 the federal Liberal government had few elected representatives from the western provinces. This change in allegeance resulted also from the many federal policy initiatives such as official bilingualism and the national energy policy that centralized revenues in Ottawa. But rather than signalling a desire for retreat from federalism as such, this form of alienation led to demands for greater inclusion in decision making about public policy. As a result of these three trends, according to Russell, Canada was by the mid-1970s engaged in a serious effort to redistribute power to the provinces. Evidence of this power shift is that provincial and local government spending as a percentage of the Gross National Product rose from 15.1% to 23.1% and federal government spending fell from 16.2% to 15.5%. Provinces in Atlantic Canada were also concerned with increasing their involvement in federalism as well as with gaining more control over their natural resources (the fishing industry, offshore oil development). As a consequence, federal-provincial relations dominated the constitutional agenda during the mid- to late 19705. Significantly, the constitutional agenda was deeply elitist in nature: few organized interest groups or advocacy organizations outside of governmental structures had any influence over the constitutional process. With these background factors in mind, we turn to the actual events of the latter half of the 19705 with respect to the Constitution.

44 A Seat at the Table Round Two: 1976-80

Trudeau's draft proclamation, which was circulating among the premiers of Canada's provinces in the spring of 1976, was the first move in round two of the constitutional process. According to Roy Romanow, (Romanow 1984, 2-4) Trudeau's new proposals reflected most of what had been in the defunct Victoria Charter. For example, in the first part of the proposal, the same constitutional amending formula that was in the Victoria Charter was set out.7 In essence, these proposals stressed patriation, the Victoria amending formula, and minimal enhancement of provincial jurisdiction in the field of language and culture. It remained silent on issues of resource management, energy, and increased power for the western provinces. What is especially significant about Trudeau's proposals is the absence of any mention of a charter of rights and freedoms. In August 1976, the provincial premiers met in Edmonton to discuss Trudeau's new proposals. As Romanow argues, this process was marked by a spirit of cooperation in which each premier was trying to work out an agreeable solution to accommodate everyone's priorities. The overriding objective in this context was to present a united front to the federal government in order to gain a position of strength at the bargaining table. In the follow-up conference in Toronto in October 1976, it became clear that this was the first attempt since the Victoria Charter in 1971 to address an expanded agenda of constitutional issues. In a joint letter written by the premiers to Trudeau, the provinces outlined their needs regarding constitutional negotiation for patriation: an expanded role for the provinces in culture, communications, Supreme Court of Canada appointments, spending power, Senate representation, and mechanisms to deal with regional disparities. In addition, the premiers achieved consensus on the following issues of jurisdiction: greater provincial control over immigration; guarantees of English and French language rights; control over the taxation of lands, mines, minerals, and forests; a First Ministers' conference each year to discuss the Constitution; and the stipulation that the creation of new provinces be made subject to a new amending formula.8 After the Quebec election in November 1976 and the victory of the Parti Quebecois with its separatist agenda, the federal government initiated a series of constitutional conferences, workshops, and task forces to explore new constitutional initiatives. Two events stand out in this process. The first occurred in July 1977 when the federal government struck a task force to study Canadian unity. Its outcome was that the Pepin-

45 Constitutional Ferment

Robarts Task Force on Canadian Unity was set in motion. Its mandate was to travel across the country to collect and publicize the views of Canadians with respect to the state of the federation, as well as to provide the government with ideas and initiatives on Canadian unity. The second significant event was a week-long conference in October 1977, during which concerned citizens from across Canada gathered at the University of Toronto and produced a book entitled Options Canada? This was the first attempt by citizens' groups to gain input into the constitutional process. However, according to Russell (99-100), the proposals emerging from this document were ignored. At roughly the same time, Trudeau was pursuing his own agenda by preparing new constitutional proposals. In June 1978, the federal government released a new white paper on the Constitution, "A Time for Action." Almost simultaneously the government tabled Bill C-6o to give legislative import to its new proposals. "A Time for Action" proposed that constitutional reform proceed in two phases. Phase one would deal with matters that could be amended by the federal government without consent of the provinces. In addition, phase one would emphasize the reform of the central federal institutions, produce a statement of fundamental objectives of the Canadian federation (a type of "Canada Clause"), and, most significantly, provide for an entrenched charter of rights.10 This version of the charter of rights, however, would apply only to the federal government, although provinces could opt in if they wanted. Phase one of the constitutional process was to be completed by ijuly 1979, with or without provincial consent. Phase two of the process would deal with issues in which the consent of the provinces was required, in particular with the controversial division of powers between the federal and provincial levels of government. In addition, the issue of Aboriginal rights would be discussed. This second phase was to be completed by i July 1981. Bill 060 set out many of the details of the federal proposals with respect to phases one and two.'' What is important to note here is the scope of the rights and freedoms outlined in both "A Time for Action" and Bill 060: official bilingualism, minority language education rights (French in English Canada, English in Quebec), equality of French and English in federal government institutions and the courts, mobility rights, and liberal rights and freedoms (freedom of expression, association).12 Nowhere is there any mention, however, of equality rights or non-discrimination rights (as they were called in the first draft of the full Charter of Rights and Freedoms, 1980), or of affirmative action programs designed to meet the needs of disadvantaged groups.

46 A Seat at the Table

Following the announcement of the federal proposals in June 1978, a number of constitutional conferences, task forces, and workshops sprang up, many of which were sponsored by the provinces, political parties, private citizens, and interest groups.13 Moreover, the federal government established another committee to travel across the nation and gather views and evidence about the constitutional proposals articulated in "A Time For Action." Thus, the Special Joint Senate/House of Commons Committee on the Constitution was formed (or the Lamontagne/MacGuigan committee after its chairs) to review the government's constitutional proposals and receive public input into the future of the Canadian federation. The nineteenth annual premiers' conference, held in Regina in August 1978, focused on the state of the economy and the Constitution. The discussions centred on the shortcomings of Bill 060 in particular, concluding that the bill amounted to an attack on provincial authority. Mobility rights, official language rights, and minority language educational rights, as set out in the charter of rights and freedoms sections of Bill c-6o, were thought to be objectionable on both practical and theoretical grounds. Objections were based on two factors: the costs of implementing official bilingual services where the numbers warranted, and concerns that the decision-making authority of legislative bodies would be usurped by the courts on matters of largely provincial jurisdiction. Bill c-6o went down to defeat as a result of the objections of the first ministers and objections raised in the House of Commons. The majority of the provinces judged the constitutional proposals articulated by the federal Liberal government to be simply unacceptable. In late October 1978, however, the provinces and the federal government met to discuss reforming the package of constitutional proposals of Bill 060. Trudeau agreed to modify his two-phase program and work towards the negotiation of fourteen items, which included the issue of division of powers that was close to the hearts of the provinces. In addition, the first ministers discussed and negotiated all aspects of the federal proposals. They also formed a committee of provincial and federal representatives to continue working towards a viable set of constitutional proposals. The Continuing Committee of Ministers on the Constitution (CCMC) met several times during the winter months of 1979 to develop a draft text for a reformed constitution. This committee continued meeting to refine constitutional proposals and, according to Romanow (who was co-chair of the committee), was extremely influential in setting the tone for all negotiations until 1980. Finally, in February 1979, the CCMC completed its "best efforts" draft, which enjoyed the support of most governments.14

47 Constitutional Ferment

The constitutional conference held at this time to debate the "best efforts" draft was, according to Russell (105-15), "as close as Canada's political leaders came during the Trudeau era to reaching a comprehensive agreement on constitutional reform." However, with the approach of a federal election, the spirit of non-partisanship moving these deliberations was coming to an end. In May 1979 the Progressive Conservative Party under Joe Clark formed the new minority federal government. According to Romanow (55), the policies of this new federal government towards constitutional reform were shallow and vague and did not involve the senior government officials who had been instrumental in the process under the Trudeau regime. Over the next several months, the Clark government found itself at odds with the provinces over many important matters, including natural resource policy and constitutional reform. At the end of 1979, with its new budget defeated in a vote of nonconfidence, the Conservatives were thrown out of office, and the Liberals under Trudeau were ushered back into power with a hastily called election in the spring of 1980. Trudeau's electoral victory signalled renewed faith in the process of constitutional reform, and he acted quickly to restore the integrity of the process he had initiated. The year 1980 became, in Russell's words (107), "a watershed in Canada's constitutional politics." With the Parti Quebecois government's term quickly running out and the defeat of the Quebec referendum on sovereignty, the time was ripe for pushing ahead with constitutional reform. By June 1980, Trudeau had the CCMC committee under way again with new draft proposals and a first ministers' meeting scheduled for September 1980. By October it was clear that the federal government intended to act unilaterally to secure a constitutional agreement if no workable compromise with the provinces could be reached (Russell, no). But the most significant event for purposes of citizen participation occurred when another parliamentary committee (Hays-Joyal) was struck to travel across the country and gather responses to the government's constitutional proposals. From late fall 1980 through to spring 1981, this special parliamentary committee met with individual citizens, interest groups, and advocacy groups across the country and had the hearings broadcast on national television. It is in this context that equality rights for persons with disabilities, gays and lesbians, women, and multicultural groups are mentioned for the first time. Many advocacy groups representing these individuals made strong presentations to the Hans-Joyal committee, and the government was keen on amending its constitutional proposals to accommodate their concerns, despite the lack of provincial government

48 A Seat at the Table support. As Russell summarizes: "The remarkable feature of this parliamentary committee and the key to its political efficacy was the extent to which its government majority was willing to accept (one might even say desired to accept) amendments to the government's proposal ... Among the accepted changes were the following: ... The addition of 'mental or physical disability' to the list of unconstitutional grounds of discrimination."15 According to Russell (115), these sorts of changes were directly attributable to the activities of advocacy groups. Moreover, not only did their activity increase popular support for the constitutional deal (made unilaterally without provincial agreement) but, as Cairns (1990) has persuasively shown, the process itself created a new public expectation about popular participation in constitution making. In addition, this process produced a whole new set of players in the arena of constitutional reform: the advocacy groups whose claims gained explicit constitutional recognition and whose perspective had usually been indifferent to federalism. Russell's point (115) is that federalism provides a perspective, and structures, that characterize the country as being a federal state, a state made up of provincial and federal communities. This constitutional concept, which had been in force since Confederation and had restricted the constitutional process to political parties and bureaucrats, does not in itself recognize interest groups as parties to constitutional reform. Russell (see also Cairns 1988) notes that interest groups were traditionally uninterested in negotiations on federalism itself (since they had nothing to gain from it) and were more interested in other ways of protecting their uniqueness, such as a charter of rights. However, disability groups were an exception to this general rule since they did have something to gain from federal-provincial negotiations on social welfare jurisdiction. Since persons with disabilities required public services that could be divided between the two sets of jurisdictions, they always had an "interest in federalism." At the most general level, the period from 1970 to 1980 represented the federal Liberal government's desire to repatriate and amend the Constitution and include a charter of rights and freedoms for the citizens of Canada. Indeed, the most significant moment seems to have been the spring of 1980 - right after the election of the Liberal Party - and the creation of the special Hans-Joyal parliamentary committee on the Constitution in late 1980. This period set the stage for a battle over the decentralizing priorities of the provinces and the creation of new constitutional players - advocacy groups for disadvantaged Canadians, not the least of which were organizations of people with disabilities.

4 The Canadian Charter of Rights and Freedoms: The Political Battle over Four Words

PARLIAMENTARY

COMMITTEES

AND THE CHRETIEN

FACTOR

The Canada Act Bill (or Patriation Bill as it was called), which included a draft version of the Canadian Charter of Rights and Freedoms, was introduced into Parliament in October 1980, and the final version was approved in April 1981. In that interval, several changes to the wording of the Charter were put into place, many of which occurred in section 15(1), the section that set out the constitutionally protected equality rights of all Canadians. The tabled version of section 15(1) of the Charter provided that: "Every person has the right to equality before the law and to the equal protection of the law without discrimination because of race, national or ethnic origin, colour, religion, age or sex." This wording was based on section i of the 1960 Canadian Bill of Rights, which provided a non-constitutional guarantee of equality, one which was widely felt to be inadequate, precisely because it was not part of the Constitution, the supreme law of the land. But for members of Canada's small and unorganized disability rights community, the wording of the proposed constitutional guarantee was more than inadequate; it was an insult. Though section 15 purported to prohibit discrimination and guarantee equality to all, it did not even mention physical or mental disability. The political battle to add four words to section 15(1) - the words "mental and physical disability" began. The events leading up to 28 January 1981, when these words

50 A Seat at the Table were formally appended to section 15(1), provide an intriguing, and telling, glimpse into the role of disability advocacy groups in the lobbying process.l For neophytes in the game of political lobbying, the issue of the wording of section 15(1) presented an ideal focus for advocacy. It was evident that the Government of Canada was proposing a constitutional statement of the equality rights of Canadians that did not include people with disabilities, thereby implicitly sanctioning discrimination against them. Symbolically, this exclusion was a slap in the face for Canadians with disabilities, and so became a challenge to advocates and activists. And it was a challenge that had to be addressed: If disability advocates did not pick up this gauntlet, how could they remain credible? Fortunately, too, the stated aim of putting four simple words into section 15(1) was a discrete and understandable political objective that most Canadians could easily sympathize with. Nothing concrete was being demanded — no new disability pension funding scheme or requirement that employers tear out stairs and put in ramps. People with disabilities were merely asking for inclusion in a general legal statement prohibiting discrimination. If the federal government was not willing to come out against discrimination levelled at people with disabilities, how could its other policies be supported? Behind the symbols, as legally trained disability advocates knew only too well, there was a great deal at stake. It was conceivable that courts might interpret the list of prohibited areas of discrimination given in section 15(1) (and by extension the list of legally recognized equalityseekers) to be exhaustive, thereby permanently undermining potential claims of discrimination by people with disabilities. Moreover a suspicion lurked - confirmed by later events - that the omission was deliberate. On the other hand, if disability advocates were successful and persuaded legislators to extend to people with disabilities the legal protection and guarantee found in section 15(1), this inclusion would create novel legal opportunities for the advancement of their cause. Indeed, to this day, there is still no other country on earth that has a constitutional guarantee of equality rights for people with disabilities. The brief, perfunctory, yet unanimous vote of a Parliamentary Committee on 28 January 1981 to formally append the words "mental or physical disability" to section 15(1) was in fact a considerable lobbying coup - an unqualified, untarnished success on the part of disability advocates. That this fact never made the newspapers, and indeed has faded into historical obscurity, can be explained by considering the sweeping background events that overshadowed this victory. The reinstatement of the Continuing Committee of Ministers on the Constitution (CCMC), which had been sidelined during the Clark

51 The Canadian Charter of Rights and Freedoms

Conservative administration and the defeat of the Quebec referendum on sovereignty, defined the moment for Trudeau to push ahead with constitutional reform. As mentioned earlier, by June 1980, the CCMC had begun to consider new draft proposals, and a first ministers' meeting was held in September 1980 to chart the course for patriation. During that meeting it became clear that the federal government intended to act unilaterally in order to secure a constitutional agreement. With drafts of what was to become the Charter in hand, a new parliamentary committee was constituted, one which sought, for the first time in this long process, the inclusion of equality-seeking groups, including people with disabilities. Two distinct fora were to address disability issues in the crucial months spanning 1980 and 1981. One was the Parliamentary Special Committee on the Handicapped, an all-party committee chaired first by MP Walter Dinsdale and then later by MP David Smith, which was created in 1980 to enquire into the status and needs of persons with disabilities in Canada. The creation of this committee, which was later transformed into a standing committee that still exists, had nothing directly to do with the Constitution or with patriation; it was, rather, Canada's response to the United Nations' designation of 1981 as the International Year of Disabled Persons. It was a stroke of good luck fully exploited by disability advocates that the theme of the UN'S International Year of Disabled Persons was "Equality and Full Participation." The Parliamentary Special Committee on the Handicapped held hearings on disability issues across Canada during the summer of 1980 and listened to the testimony of some 400 witnesses. Although there was no formal link between this committee and the patriation process, the committee provided disability advocates with much-needed evidence that people with disabilities could plausibly be viewed as a disadvantaged minority group, on a par with other groups that were named in section 15(1). The committee's final report, entitled "Obstacles," included among its many resolutions that: "If Parliament decides to enshrine human rights in the patriated Constitution, the Committee feels that complete and equal protection should be extended to persons suffering from physical and mental handicap" (Canada Health & Welfare 1981). The second forum to focus on disability issues during this period was the updated Special Joint Committee of the Senate and the House of Commons on the Constitution of Canada known as the "Hays-Joyal Committee." As earlier mentioned, this parliamentary committee was convened to obtain public input and review the draft provisions of the Constitution embodied in the Canada Act Bill that had been tabled before Parliament in October 1980.

52 A Seat at the Table

Three disability advocacy groups made formal presentations before the Hays-Joyal Committee from mid-October 1980 to 12 January 1981, when the Committee began its clause-by-clause review of the Canada Act Bill. These groups were the Coalition of Provincial Organizations of the Handicapped (COPOH), a Winnipeg-based federation of provincial advocacy groups; the Canadian Association for the Mentally Retarded (CAMR), a research, advocacy, and service-providing agency serving people with developmental disabilities; and the Canadian National Institute for the Blind (CNIB), an agency providing rehabilitative and other support services to blind and visually impaired Canadians. The able-bodied representative of CAMR was also accompanied by a spokesperson for People First, an advocacy group for people with psychiatric conditions. At this time, these groups were not represented directly by persons with disabilities. That trend did not begin until the late 19808. The Hansard records of the Special Joint Committee proceedings reveal some of the political dynamics of those two months of hearings. Although dozens of groups were represented at the hearings, the presentations relevant to disability issues can be separated into two stages. The first stage began in mid-October with the tabling of the first draft of the Charter and lasted until the Christmas break. Justice Minister Jean Chretien revealed in his remarks to the Special Committee that the "best advice" from his advisors in the Justice Ministry was that there would be considerable "drafting problems" associated with defining what constituted a disability and that rights for people with disabilities, had not yet "matured" in Canadian society. Chretien stated that it was best to leave the reference to persons with disabilities out of the wording of section 15(1) and wait for the provinces and federal government to agree, at some later date, to amend the Constitution by adding disability rights expressly (Hansard, Issue no. 27). In the first stage of the lobbying effort, representatives of COPOH, CAMR, and the CNIB all presented complete, formal submissions. They were supported from time to time by sympathetic remarks included in the submissions of other groups, most notably the Canadian Human Rights Commission (represented by Gordon Fairweather) and the New Brunswick Human Rights Commission (represented by Dr Noel Kinsella). COPOH 's submissions were presented primarily by Yvonne Peters, Ron Kanary and Jim Dirkson, while David Vickers spoke for CAMR and David Lepofsky testified for the CNIB. These submissions were principally directed at the general condition of people with disabilities in Canada, and references were frequently made to the findings and recommendations of the Parliamentary Special Committee on the Handicapped.

53 The Canadian Charter of Rights and Freedoms The second stage began on 12 January 1981 when Justice Minister Chretien tabled a package of amendments that his government was prepared to accept in light of the testimony presented to the committee before Christmas. The justice minister revealed that, though he had considered the proposal to add "mental and physical disability" to the list of protected classes, he had decided against it. This sparked a vigorous debate and a heightened pitch of lobbying activities that lasted until 28 January 1981, when Chretien informed the committee that he was prepared to endorse the so-called handicap amendment despite opposition by the Justice Department. At this point, after a motion by MP David Crombie, the words "mental or physical disability" were formally appended to section 15(1) by unanimous vote of the Hays-Joyal Committee. During this second stage, the disability activists had to address Chretien's three principal objections to adding disability to the list of protected groups. First, Chretien argued that his government was leaving room for disability to be addressed by judicial decision: "If there is positive discrimination against handicapped and nobody is acting, in my reading of that section, the courts could intervene." (Hansard, Issue no. 36, 22). Second, he repeated his earlier claims that disability rights had not yet matured in Canadian society, as evidenced by the problems in defining the population to be protected. Finally, Chretien argued that the provincial statutory human rights codes that were already in place, and those to be developed in the near future, obviated the need to protect disability rights constitutionally. There was, however, a fourth objection that was never fully expressed by Chretien, although nearly every submission in the two-week period had vigorously disputed it in one way or another: that a constitutional protection of the rights of people with disabilities would be too costly to recognize. Once these objections were aired, the work was cut out for disability activists who were in Ottawa to address the Special Joint Committee. Many of the arguments that were needed had already been provided by the report of the Parliamentary Special Committee on the Handicapped. Some of the more specific legal arguments were addressed by David Lepofsky, a 23-year-old blind lawyer who had just finished articling and was in the middle of the bar admission course, as well as by David Vickers of CAMR, and Ron Kanary and^Wonne Peters of COPOH. The record makes clear that throughout this period there were a handful of MPS who actively supported, and often provided key arguments for, the disability activists. Of note in this regard were Svend Robinson and Neil Young, both of the NDP party, Walter Dinsdale, James McGrath, and David Crombie of the Progressive Conservative

54 A Seat at the Table

party, and Bryce Mackasey of the Liberals. At various points, in what turned into an active debate with Justice Minister Chretien, one or another of these MPS was able to push along the case for inclusion of disability rights. But the most interesting dynamic revealed by the record of both stages of these meetings was the ambivalence of Chretien himself. From the start, Chretien made it evident that he was not in full agreement with, and in cases was even embarrassed by, the "best advice" he was being given by his advisors. From the record, one can see Chretien's unease that the line he was taking was exploited by both the witnesses and the other politicians. When grilled by Bryce Mackasey, for example, Chretien defended his decisions not to include disability, and then added: "Myself as a human, as a politician and as a man who has always been preoccupied with the disadvantaged groups in this society, I am not happy to give you that answer" (Hansard, Issue no. 37, 23). And to Svend Robinson's challenge that Chretien go back to his advisors and seriously consider the possibility of adding disability as an additional ground of discrimination, Chretien sheepishly replied: "You understand my problem. Yes, I will go back to my advisors ... There is nothing that would please me more to add that word there. But I have at the same time to make sure that we are not creating a problem that will be very difficult for the administration of the law, the judgement of the court, the legislature and so on" (Hansard, Issue no. 37, 23). Even during the technical debate over how to legally define disability, Chretien revealed a side of himself that suggested a basic sympathy with the disability cause: "There are many types of handicaps in this society. We all have handicaps ... perhaps the way I talk is a handicap" (Hansard, Issue no. 37, 22). In the end, the four words "mental or physical disability" were added to section 15(1) of the Charter. The public record speaks clearly about the dedication of a small handful of activists who managed to keep up the pressure during the crucial two-week period between 12 and 28 January 1981, when the government, represented at the Hays-Joyal Committee by Justice Minister Chretien, completely reversed its position and included people with disabilities as a group explicitly protected against discrimination in the Constitution of the country. THE ADVOCATES AND THEIR O R G A N I Z A T I O N S

The dominant organizational player in this lobbying effort was the Coalition of Provincial Organizations of the Handicapped (COPOH), an

55 The Canadian Charter of Rights and Freedoms

organization composed of representatives from provincial disability organizations. COPOH was originally chaired by Allan Simpson, a longtime disability organizer who had been instrumental in creating Canada's first national disability organization. In the mid-1970s, Simpson was involved in the formation of the Manitoba League for the Physically Handicapped and then helped to form an alliance with the Voice of the Handicapped (Saskatchewan) and the Alberta Action Committee for the Handicapped. With these regional structures in place, Simpson realized that the movement needed a national, as well as a regional, presence to influence federal policy. This plan necessitated linking up with like-minded groups in Ontario, Quebec, and the Maritimes, as well as British Columbia. After a few halting attempts to pull an organization together, COPOH came into existence in 1976. In the summer of 1978, during the planning stages for COPOH's scheduled national convention in Winnipeg (sponsored by Canada Manpower and Immigration) Jim Dirkson, recently hired as a fulltime COPOH staff member, began to think about the potential role of disability advocacy in the constitutional debate. Dirkson, who was to become national co-ordinator of COPOH and hold that position throughout the patriation process, had recently graduated from the University of Manitoba and had read widely about the disability movement in the United States and events leading up to the passage of the Vocational Rehabilitation Act of 1976 and its antidiscrimination provisions. As Simpson relates, Dirkson used the national convention to turn COPOH into a lobbying organization at the federal level. At that meeting, Simpson recalls, "Jim Dirkson pointed out in a very sharp and analytical way that Trudeau was beginning to move on the Constitution, and that if the Charter of Rights was ever to be enacted in Canada, and if it defined categories of people entitled to protection from discrimination, and if that listing - a simple listing of categories of race, religion, colour, creed, sex - did not include persons with disabilities, then the court systems and the judgments in the precedent cases would put a priority on those categories which were defined."2 Since many delegates to the 1978 convention had experience with human rights legislation in their home provinces, they were familiar enough with the legal details to be highly receptive to Dirkson's plea that a strategic planning process begin. However, some of the provincial organizations that were recruited to join COPOH - the United Handicapped Groups of Ontario, for example - were primarily social and recreational networks and were wholly unused to political activity of any sort. As Dirkson characterizes these groups: "They had a much older model of wanting to serve the

56 A Seat at the Table

membership with recreational and social opportunities, largely in a ... social universe where people with disabilities were segregated in one way or another from others, or isolated from one another, and their concept of change was more in the sense of role models, or public education, or general encouragement of society from a very low key, low energy way of going ahead."3 And some of these organizations, Dirkson notes, had had many decades of a particular kind of service. The Winnipeg League of the Hard of Hearing, for example, had been serving people with hearing problems since 1925. Over the years, COPOH made a conscious attempt to politicize its affiliate membership, and in some cases, to directly assist more radical members of the national group to change their constitutions to become more activist. These moves were not always successful. Dirkson recalls that during an annual meeting of one disability group, a proposed change to the constitution to allow political lobbying lost by a handful of votes and "there were tears in people's eyes. I recall quite clearly that the activists who had struggled so hard to transform that existing organization into a more active one, were bitterly disappointed in that struggle..."4 More often, however, COPOH became a model that local organizations readily adopted. For example, Persons United for Self-Help (PUSH) Ontario, which had a strongly activist philosophy, grew directly out of meetings with COPOH activists in the Ottawa area. It is interesting to consider in this light one of the other major players in the amendment process. David Lepofsky, who was to represent Ontario's branch of the CNIB throughout the process, relates how, while chairing a committee of the Ontario branch dealing with public education and advocacy, he persuaded the managing director of the provincial board to call on the CNIB national board to authorize a member to lobby for disability rights to be included in the Charter. Lepofsky was to be that member. Although the Ontario board of the CNIB was always sympathetic to Lepofsky's lobbying work, they did not have, as he puts it "a rigorous understanding of some of the details ... [The board] was predominantly made up of sighted, retired business people who knew very little about blindness, very little about social services, and nothing about equality rights."5 Lepofsky, who had worked earlier to extend rights to people with disabilities under the Ontario Human Rights Code, had seen the need for action at the federal level. He had had no contact whatsoever with COPOH before finding himself at the table with them arguing for the same cause. To further its national agenda in the late 19705 and early 19805, COPOH began organizing meetings in Ottawa with federal bureaucrats

57 The Canadian Charter of Rights and Freedoms and politicians in employment, transportation, and other policy areas that deeply affected people with disabilities. Simpson argues that grass roots members of COPOH, the various provincial representatives who were beginning to feel comfortable in the political arena, were greatly encouraged by the mere presence of COPOH in national arenas. A meeting with the Canadian Transport Commission in 1979 was held in the Pearson Building "in this large boxing rink atmosphere with the judges in the middle surrounded by people with disabilities, from all walks of life, from story to story to story." People with disabilities gained experience and developed advocacy skills, making presentations at the federal level, "and so, step by step, the experience of lobbying cross-country grew into the concept of a movement."6 When the Parliamentary Special Committee on the Handicapped was created in 1980, Dirkson was asked to join as a consultant for a four-month period. He notes: "Most of my time was spent resourcing the parliamentary committee that wrote the "Obstacles" report. However, in the background and on my own time, I was very busy gathering information on the political lie of the land in Ottawa around the Charter issue and feeding that through to the COPOH executive and board and staff."8 Back in Winnipeg, Yvonne Peters, a lawyer working with the Saskatchewan Human Rights Commission, became chair of the newly created Human Rights Committee of COPOH and was beginning to think about strategies for dealing with the inclusion of disability rights in the Charter. Also active on COPOH's council were the two Nova Scotia delegates to COPOH, Ron Kanary from Sydney and Shawn McCormick from Halifax, both of whom, in different ways, were to become actively involved in the amendment process. Despite its activism, COPOH was surprisingly lacking in organizational structure, a lack which many of the participants interviewed for this study found to be a positive factor. Although they did have people with political experience such as Dirkson and Simpson to provide guidance, most of the actual activism was spontaneous, serendipitous, and highly creative. Peters recalls that their lobbying efforts were not governed by an elaborately structured organization: "I mean, the whole idea of self-help and a disability rights movement was still such an empowering and exhilarating experience that I don't think we had ... the structures in place to ... deliberately sit down and analyse and deliberate on a policy or a particular strategy or action."8 Consequently, especially during the crucial second stage in January 1981, those who were making arguments to the politicians in Ottawa were not being directed from Winnipeg or anywhere else, because they could not be. COPOH was, of course, an organization of organizations,

58 A Seat at the Table

so there was some concern about whether it had a mandate to act unilaterally without consulting its members. Peters recalls that since only the three advocates were on the scene participating at the hearings, they had to be spokespersons for the movement, with or without instructions. Still, "we were on the scene, we were representative of our various provincial affiliates, so I think we felt like we had the mandate of the organization to ... undertake this kind of action, whether or not people in Regina really understood the significance."9 For the most part, Kanary, Peters, and Dirkson, as individuals, were wholly in control of the substance of the legal and social arguments that were being presented to the Special Joint Committee. On the question of whether COPOH had the mandate to act, Dirkson has no hesitation in conceding that in many respects it marched into lobbying activities that many of its affiliates would never have associated themselves with: "More often than not, their reluctance to appear rude, or offensive, or rock the boat - their sense of their social identity [was] peace and good order in an obvious sense." Dirkson admits that there were a few members of the disability community who were opposed to including disability as a ground for equality protection, or who thought COPOH's efforts were a waste of time. Still, he says: "The majority of the people, once they understood what it was about ... either didn't have time to contribute, or they were willing to contribute. They weren't hostile."10 Dirkson's secondment to Ottawa and the Parliamentary Handicap Committee was indicative of how COPOH financed itself during these crucial months. Dirkson referred to the technique as "piggybacking" (in his more blunt fashion, McCormick called it "skimming"): COPOH had representation on various committees on transportation and employment issues, supported by the responsible federal ministry, that brought their members to Ottawa for days, weeks, or months on end. As Dirkson put it: "We would kind of piggyback [on] their presence in Ottawa ... we had a few committees and other task forces meeting there, but between those times and after those times it was a group of people in Ottawa with disabilities that we kind of organized, or helped organize, who gave us a presence in the committee room every day of the week."11 Simpson remarks that the politicization of COPOH and its affiliated provincial organizations had an effect on resourcing. Disability groups that were primarily organized by parents and those that welcomed medical professionals were apt to be funded by the public out of a sense of charity. But "people just don't usually give donations for human rights ... so we upset a number of apple carts here."12 This situation meant that COPOH found itself seeking governmental support, which it

59 The Canadian Charter of Rights and Freedoms

readily accepted for its own political agenda. Dirkson defends the practice of going directly to the federal government for advocacy funding: "The federal money that we negotiated for our member groups ... gave them a great deal of liberty in their field of operation."13 McCormick has other views. Although he fully participated in COPOH'S activities from 1978 right through the patriation debate in 1981, and held the office of vice-chair at one point, he felt at the time that COPOH was compromising its activism by seeking federal funding. The early years, when COPOH operated on a shoestring, were the best years, McCormick claims: "Beyond that, I think we started to slide into the abyss of back-room meetings ... it just became more co-opted, almost totally, by the bureaucracies in Ottawa. " 14 THE ACTIVISTS

RECOLLECT

By the time the first version of section 15(1) was tabled in Parliament in early October 1980, the activists who would in the next months mount a sustained lobbying effort to add people with disabilities to the list of protected groups were fully aware of the significance of the political objective they were seeking. Either from their legal training - as in the case of Lepofsky and Peters - or from close observation of the previous decade of consumer and civil rights movements in the United States - as in the case of Dirkson, McCormick, and Simpson - they had a clarity of vision in their lobbying efforts. Peters relates that after the first version of section 15(1) became public, COPOH held a council meeting in Ottawa: "That Sunday evening we made a decision just prior to leaving for the airport that some of us would stay on. And it called for some emergency action that we had to stay on the heel, that we had to lobby, that we had to really start pressing our issue."15 Jim Dirkson and Kanary were already in Ottawa acting as consultants to the Parliamentary Handicap Committee, and McCormick, who had appeared before that committee, had agreed to stay on, taking a leave of absence from his job back in Halifax. Simpson went back to Winnipeg to provide linkage with COPOH'S home base. The question then arose: "What do we do?" Altogether, ten or twelve disability activists, without funding or resources, decided to bring the issue to the public. The obvious strategy, familiar to those who had watched the American political scene, was to organize a demonstration. So this they did. Peters recalls: "I remember we made signs and did it all. It was a personal risk you know ... I was employed with the Saskatchewan Human Rights Commission and was told that whatever work I did was fine but please don't be the first to throw the blood on

6o A Seat at the Table

the steps."16 Sympathetic local people were phoned; the press was notified; and a press release was written and distributed. McCormick recalls: "I remember very strategic meetings we had in Ottawa planning how we were going to approach this issue, sitting at the Delta Hotel for hours and hours. Finally somebody said, 'It's time to stop talking about this goddam shit and get up and get the placards. ' My memory is of us making placards in the room at the hotel, buying bristol board and going up to the hill to march — the people with Seeing Eye dogs and people in wheelchairs - and that caught the press. That's where we had to bring the thing into the public, and that's what COPOH did."17 Emboldened by this event - which was well covered by the media McCormick and others perhaps more comfortable with direct action than with back-room strategizing, planned other events: "I remember a whole group of us sitting at the bottom of the stairs where the Prime Minister comes down to enter the House. We were all sort of looped around the bottom of the stairs and Trudeau came in with his aides and we sort of interrupted his move and he was fairly terse about the issue. I remember him saying, 'You get the provinces to agree and you got it. They're the ones who don't want us to amend this.' " l 8 Although he was not in Ottawa during this period, Simpson argues that the most effective strategy used conventional lobbying techniques. Prevailing opinion changed by "meeting people near the parliamentary committees and the various caucuses and then their advisors too; it changed by experience; it changed by one-on-one relationships; it changed by having personalities such as Yvonne and Ron and Monique Kanary and others who were able to go in and win trust and respect and with reasonable, solid arguments."19 It was, he believes, the forcefulness of the arguments rather than their technical accuracy, that won the day and helped to build relationships with the bureaucrats and politicians. The COPOH team took great care during the Hays-Joyal hearings to fine-tune their submissions. Peters relates: You made your very brief, ten-minute, presentation. You then answered questions. So that part of the process was very carefully organized. There were three of us who appeared before the committee, and there were long discussions into the night about how to frame the argument ... We wanted to frame it, not in a totally emotional kind of argument, but we wanted to almost reassure people that including people with disabilities was not going to be a traumatic thing to do ... I think we were trying to respond to their fears of cost. That was a big factor. And so I know we spent a lot of time about how to frame the arguments, I mean, how to get across the real discrimination, first of all - that people with disabilities really do experience discrimination and inequality.

61 The Canadian Charter of Rights and Freedoms The effective arguments, which, of course, appear in public documents such as Hansard where they can be studied and assessed, were also accompanied by other, more direct strategies. McCormick notes that the statement found in the "Obstacles" report that proved to be so persuasive during the Hays-Joyal hearings was the result of a chance encounter: "I was on a flight to Ottawa one morning and as it happened it was the same morning that they [intergovernmental affairs ministers] were going up to do their constitutional presentation. And on the flight, we sat beside each other, and the premier [of Nova Scotia] at the time - Buchanan - was on it. So it gave me a good chance for an hour and a half of lobbying, you know."21 As an example of lobbying of a more basic sort, Dirkson tells of tactics such as "following people like Jean Chretien ... to the washroom, to lobby them while they were taking a washroom break ... I mean we were accused of making some of the members dribble on their shoes at the stalls because we kept distracting them ... So it was a certain amount of 'sticking to it,' you know."22 Lepofsky, in Toronto, had different strategies, occasioned by nearcomplete isolation from COPOH and almost complete lack of funding for his costs. He had no idea that the CNIB would be asked to present evidence at the hearing: It's 5:00 p.m. and I'm in the kitchen at my parents' house and the phone rings, and I answer. "Hello," and some voice at the other end goes, "Is this the CNIB?" and I said, "Who are you looking for?" and they said, "Well, we're looking for David Lepofsky." "But I'm in my mother's kitchen." "Well, we're with the Joint Committee of the Senate and the House of Commons ... and we want to invite the CNIB to make a presentation" and I said, "When?" and they said, "Friday morning, 9:30." This is Wednesday afternoon at 5:00, and I turned a lighter shade of pale and said, "Couldn't we maybe come next week?" I was entirely overwhelmed. I couldn't believe that we were invited. I had done nothing to prepare a presentation, but I said, "Okay, let's go for it." 23

Drawing on volunteer legal advice from disability lawyer David Baker and relying on connections made through the Coalition on Human Rights, formed in 1980 to lobby for changes in Ontario's Human Rights Code, Lepofsky managed to fly to Ottawa and make several persuasive and well-informed submissions to the Joint Committee. Lepofsky relates that strategic decisions about how to craft arguments were more or less left to him personally: Because of the internal politics of some organizations, because lobbying was not part of the mainstream of non-consumer groups, or service agencies

62 A Seat at the Table particularly, and because it was happening so fast, you have to understand CNIB or some other groups would say, "Oh shucks, we'd like to argue for this, but we've got to wait for next month's board meeting, and present a resolution, and if it passes quickly that's great, but if it doesn't, you know, there may be a need for a committee or a debate or whatever, and these things don't turn around quickly." As a result, the only coalitioning I was able to do was to call the March of Dimes that had organized the Ontario Federation of the Physically Handicapped and get them to write a letter on their behalf that I carried to Ottawa when I testified.24

Because COPOH was more organized and prepared, it had been able, to a limited extent, to coordinate its efforts in Ottawa and form linkages with various players. There was almost no successful coalition building between the disability groups and other equality seekers. Simpson had encouraged Peters to seek out women's groups to join forces and collaborate. But Peters relates that her efforts were often stymied by adverse reaction from the disability community: "I don't really understand this completely, but there was ... it seems, ... a real nervousness, I might even call it paranoia, about making links with other equality-seeking groups, that somehow the women's groups, the feminists, are going to distort disability-rights analysis, or that if we get too involved with other groups, that somehow our issues will get lost."25 Linkages with bureaucrats were even more difficult. Bureaucrats, it became clear, had been the principal source of objections to putting disability in section 15(1) originally, and had advised Justice Minister Chretien not to accede to the demands of the disability community during the first stage of hearings. Peters says that it was very difficult to get access to the right people, but when she did talk to an undersecretary of Chretien, he expressed reservations about what it would mean if disability was included in the constitution, claiming that it would "bankrupt the country." Politicians, on the other hand, were almost universally sympathetic to the disability lobbying effort. McCormick made a point of tracking down Chretien on several occasions where he was speaking and asked him whether he was going to amend section 15(1). On each occasion the same answer came back from Chretien: "It is a high priority of ours to do it, but we have difficulty getting the provinces on board." And NDP MP Neil Young, an active member of the Haysjoyal Committee, was always on side: "Neil was a very big advocate and perhaps was the one who kept feeding information and raised questions in the House."26 Lepofsky reports that during the second stage of the hearings in particular he could sense that Chretien had come around: "And it was interesting because then the Opposition started questioning Chretien

63 The Canadian Charter of Rights and Freedoms during clause-by-clause, and he would give answers which, if you read them, look very much like he was working from ... briefing notes that were given by the bureaucrats. But he didn't really believe it, because he kept saying, 'You know, I'd really like to do this.' I mean it turns out of course, I didn't know this at the time, but the man has a disability. And I think he was very sympathetic to our situation."27 There is some indication, though Lepofsky cannot substantiate it, that the Justice Ministry had come around to the view that it should no longer oppose the amendment of section 15(1) well before 28 January 1981, when it formally made that announcement. In any event, on that date, the loose coalition of disability groups, relying primarily on the creative talents of a handful of spokespersons at the hearings of the Special Joint Committee, on creative financing, and on a sympathetic eye from key politicians, could declare a victory for this lobbying campaign. RECOGNITION AND INCLUSION

The objective outcome of this case is obvious: the inclusion of people with mental and physical disabilities on the list of populations explicitly recognized as protected groups under the constitutional guarantee of equality rights. Canada became the only jurisdiction on earth with such a constitutional guarantee. From an interest group perspective alone, the outcome of the lobbying efforts of COPOH, CAMR, the CNIB and the key players of other organizations can only be described as spectacular. How did those who participated in the process perceive it? Here the response is more complicated. On the one hand, all agree that this was a symbolic victory of great, and indeed unique, importance. Peters puts it this way: " [The victory was] symbolic in a psychological kind of a way, and in a recognition way. But I think if I look at it first of all from the point of view of the movement, the disability movement in Canada, I think the idea that we were able to secure recognition under [section] 15 gave us a real feeling that we could do things, and was very empowering."28 Those immersed in and convinced of the American style of disability activism, in which judicial decisions and legislative provisions guaranteeing equality are of key importance - in particular Dirkson, Lepofsky, and, though perhaps with less vigour, Peters as well - insist that the victory was more than symbolic since it opened the door to equality litigation that would have ongoing positive results for the disability community. As Lepofsky puts it: "I'd say we've straddled from symbolism to substance, but symbolism becomes substance. I mean, what people with disabilities need is a world in which the requirement

64 A Seat at the Table of equality becomes an accepted axiom. We're not there, but we're a hell of a lot further ahead with it in section 15 even on symbolic grounds alone."29 Finally, Simpson expresses the strongest, most positive view of the outcome when he says: "It was a very strong symbol that had tremendous repercussions for us. It not only set a precedent, but it would ensure an equal approach to planning and to public perception, to political perception." Simpson believes in particular that COPOH'S intervention in federal politics created an optimism in the disability community that can still be felt: There was a growing confidence and awareness as the day arrived that it [the amendment] would probably be accepted and approved by the committee and would go on, and when it did arrive, by then we were all on to new battles; but it was a real relief, a great sense of achievement that the country could come together and that the disability community had a chance to practise its democratic role, to have a tangible result that it could point to in history, that together the country made it happen, and that it won the respect of the politicians and decision makers in a constructive way, and that it would be a good foundation for other kinds of things in the future. 3° Disability had arrived as a new social movement in Canada. But there is another perception about the outcome of this episode, one that looks beyond the objective and symbolic outcomes, and questions whether they really represent a genuine victory. The dissenting voice is that of McCormick, and the substance of his comment is important: COPOH had its finest hour when, without organizational structure or even funding, it managed to stir the souls of people with disabilities and get them into the streets to protest. When it was over, McCormick argues, two negative results followed. First, "Everybody and their dog, disabled or non-disabled, came to the conclusion that everything that we ever needed to take care of for the disabled was happening. Let's all go home, you know. I think it was the worst thing that ever happened to the disabled." Second, he feels that COPOH changed. In part it was co-opted by the federal funding it now needed to survive. However much they deny it, McCormick claims, COPOH must be compromised in its activism now that it is so closely tied to the federal bureaucracy. COPOH has stagnated and has lost "the fire in the belly." McCormick suggests that the senior staff in all disability organizations should be changed every four years, to force it to look for new, and more radical, blood to lead people with disabilities.31 Peters says she has heard these concerns about resource dependency before, but argues that the funding question poses a practical

65 The Canadian Charter of Rights and Freedoms dilemma that cannot easily be solved. Resources provide recognition and credibility; but when the resources come from the government, that recognition is tinged with conflict of interest. She also admits that, as one who has been around from the "good old first days," she has a stake in the way the organization has evolved. "I think it's very hard to let go of that because the kind of work we do is so personal to our lives, and it's so important, that it really speaks to [you] ... and it's very hard for people to back off and let go." In her view, resources and a measure of policy success brought a degree of institutionalization to COPOH that helped to meet the real needs of a social group trying to increase its legitimacy.32

5 The Charlotte town Accord: Post-Patriation

Although the Constitution was patriated in 1982, the province of Quebec refused to formally accept the document. This refusal led the way to repeated crises in Quebec between the separatist Parti Quebecois and the federalist-leaning Liberal Party. Eventually, the Mulroney government, which had a large Conservative membership from Quebec, reopened negotiations to seek Quebec's approval of the Constitutional Act of 1982. This process, in which participation was essentially restricted to provincial governments, resulted in the Meech Lake Accord. When this new agreement failed to be ratified by the provinces, a more open process was initiated, which culminated in a national referendum to ratify the Charlottetown Accord. The efforts of Canadian disability rights organizations to lobby for changes in provisions for equality rights in the Charlottetown Accord are the subject of this chapter. * The 19805 were seen by many members of disability rights groups as a period of growth and increased interest in the development of policies to improve the participation of Canadians with disabilities in all aspects of Canadian life. This goal included increasing the involvement of people with disabilities in federal and provincial Human Rights Commissions and the development of a number of federal and provincial committees concerned with disability policy. Many drew considerable pride from the fact that Canada was the first country in the world to have enshrined the rights of persons with disabilities in its Constitution. The Charlottetown case provides a unique opportunity to examine the participation of Canadian disability organizations in the development of Canadian legislation at a point ten years after the passage of the Canadian Charter of Rights and Freedoms.

67 The Charlottetown Accord THE LESSONS OF MEECH LAKE

What factors led the federal government to initiate the process of constitutional reform in the wake of the failure of Meech Lake? Generally speaking, we can identify four kinds of problems that intensified after that round of constitutional negotiation. First, the failure to bring Quebec into the constitutional framework of Canada had served to increase popular nationalist sentiment across that province.2 Moreover, Quebec was poised to respond to the eventuality that Meech Lake might be unsuccessful, by striking a special parliamentary commission on the Constitution to study the political future of Quebec within Canada. On 22 August 1990, the Belanger-Campeau commission was announced by both Quebec Premier Bourassa and by Parti Quebecois leader Jacques Parizeau. Second, the Oka crisis that began on 11 July 1990 once again forced the federal government to confront the issue of Aboriginal selfgovernment and unresolved territorial jurisdiction. Scenes of an armed stand-off - first between Mohawks and the Quebec police, and then between Mohawks and the national army - over the building of a golf course on disputed territory brought home the volatile nature of federal-Aboriginal relations. The popular support this action gained throughout the First Nations community in Canada, and the forced resolution of the stand-off, increased fears that peaceful settlements might be in jeopardy if Aboriginal demands for constitutional recognition were delayed any longer. Third, the regional concerns of the premiers of western and Atlantic Canada had never been fully accommodated by the proposed Meech Lake Accord. These concerns made an appearance again during this round of constitutional debate in the form of calls for a reformed Senate. The primary issue here was the overly centralized decisionmaking authority held by Ontario and Quebec. Both Western and Atlantic Canada demanded a more effective role in national policy making; Quebec sovereignty and Aboriginal self-government were not the only constitutional issues yet to be resolved. Finally, there was a kind of Canadian nationalism forming on both the political right and the political left that advanced specific social and economic policy options for a renewed federation. Those on the right wanted a more efficient and stronger central government in order to compete in the global market; and those on the left wanted a strong central government in the hopes of shoring up national social programs such as health care and social assistance. These four factors Quebec nationalism, Aboriginal self-government, regional alienation, and Canadian nationalism - all spurred the federal government into action on renewing constitutional negotiations.3

68 A Seat at the Table The inclusion of people with mental and physical disabilities in the list of populations explicitly recognized within section 15 of the Canadian Charter of Rights and Freedoms in 1982 had been hailed as a victory by many Canadian disability organizations.4 It was viewed as the first major successful effort of the national cross-disability organization, the Coalition of Provincial Organizations of the Handicapped (COPOH). During the consultation process for constitutional reform in the late 19808, disability rights groups such as COPOH and the Ontario March of Dimes submitted briefs outlining their perspectives on the needs of Canadians with disabilities. COPOH'S Brief to the Special Joint Committee on the 1987 Constitutional Accord expressed its members' grave concerns about the changes in spending power of federal-provincial cost-shared programs, the equality rights provision of the Charter, and the lack of consultation with groups representing Canadians with disabilities (COPOH 1987). Disability advocacy groups continued to show their particular interest in federal-provincial social welfare jurisdictional issues, fearing that people with disabilities might fall between the cracks. COPOH argued that proposed changes in federal-provincial spending power would have a profound effect on lives of Canadians with disabilities. Existing cost-shared programs such as the Canada Assistance Plan (CAP) and the Vocational Rehabilitation of Disabled Persons program (VRDP) provided limited national standards to facilitate the integration of persons with disabilities into the community. With respect to equality rights, the brief pointed out that the struggle to include persons with mental and physical disabilities in section 15 of the Charter had been led by Canadians with disabilities. COPOH argued that because of the "long and difficult battle ... we must be constantly vigilant of the Equality rights guaranteed to disabled persons under the Charter" (COPOH 1987, 8). The brief maintained that the new proposed text for section 15 seemed to imply a two-tiered system of rights by including Aboriginal and multicultural rights but excluding persons with mental and physical disabilities from consideration. COPOH sought a specific reaffirmation of the commitment to equality by the inclusion of the following statement: "Nothing in the Constitution of Canada abrogates or derogates from the rights and freedoms in the Canadian Charter of Rights and Freedoms" (COPOH 1987, 8-9). During ongoing negotiations in 1988 and 1989, other disability groups supported COPOH'S position (Ontario March of Dimes 1988; Pearce 1988). The Ontario March of Dimes, in their 1988 Brief to the Legislative Committee on Constitutional Reform, argued that the

6g The Charlottetown Accord

Meech Lake Accord would jeopardize some of the hard-won rights that persons with disabilities enjoyed under the Charter of Rights and Freedoms and "the ability of the Accord to provide consistent social programs coast to coast."5 In 1990 COPOH and the newly formed Canadian Disability Rights Council (CDRC) submitted a joint Brief to the Select Committee on the Proposed Companion Resolution (the McKenna Proposal) on the Meech Lake Accord. They argued that Canadians with disabilities were uniquely "aware that equal treatment does not mean equality of results and thus understand the need to recognize the distinct nature of the Province of Quebec" (COPOH and CDRC 1990). They suggested that the proposal by New Brunswick Premier Frank McKenna to ensure that the rights of women were specifically protected was similar to COPOH's original 1987 position that the rights of "all those who are protected by Section 15 of the Charter" are in jeopardy. In addition, the Brief outlined continued concerns about the provision allowing provinces to "opt out" of national programs. COPOH and CDRC argued that this option would erode national standards and have a profound effect on Canadians with disabilities who had access to few services outside of CAP and VRDP. The report concluded: "In summary while we support the distinct society clause and welcome Quebec into the constitution, however, neither the Accord nor Premier McKenna's Companion Agreement address the issues of national standards or equality. These two fundamentals concerns have been clearly identified for more than two years yet there has been no effort by any government to address them. We cannot support the Accord nor the Companion Agreement without these fundamental concerns being addressed in a significant manner" (COPOH and CDRC 1990, 2). In a letter to COPOH, on 9 May 1990, Prime Minister Mulroney indicated that he believed that "nothing in the Accord takes away, overrides or supersedes Charter rights" and declined to make changes in the Accord (Mulroney 1990).b On 8 June 1990, COPOH, in conjunction with the Canadian Disability Rights Council and the DisAbled Women's Network (DAWN Canada and DAWN Toronto), issued a press release stating their opposition to the Meech Lake Accord on constitutional change. Disabled people of Canada, women and men, worked hard in 1980 and 1981 to be included in the Canadian Charter of Rights and Freedoms. We are proud that Canada is the only country in the world that includes both physically and developmentally [sic] disabled people in its Charter ... Therefore, we - the disabled people of Canada - cannot accept any constitutional change which would override the Charter of Rights and Freedoms, our only protection

70 A Seat at the Table before and under the law ... We welcome Quebec's continued commitment to Confederation, and have always done so. However, we are mindful that there are disabled people in every part of Canada, and we believe that all disabled people should be entitled to the same basic equality guarantees ... None of the first Ministers has given any sign of being aware of the interests of disabled people of Canada in the current round of constitutional talks. However, we remind you that we are here, in our thousands, expecting that the Charter of Rights and Freedoms will not be compromised by anything you do. 7

By the end of June 1990, the Meech Lake Accord had failed to gain approval from all Canadian provinces, and discussions ended (Kallen 1998). While disability rights groups had argued for changes, most political analysts did not consider their concerns to be among the prime forces that led to the Meech Lake failure. They were, however, recognized as part of an increasing number of Canadians who felt a "sense of outrage at the illegitimacy of governments perceived as playing fast and loose with a Constitution which they had forgotten was no longer theirs alone" (Cairns 1988, 256). The failure of Meech Lake and public perception of the lack of inclusion laid a new groundwork for future constitutional discussions that required new methods of public consultation. Brock (1991, 59) has argued that: "the Meech Lake experience revealed that constitutional reform must be more open and more inclusive. Throughout the hearings, the Meech Lake process was criticized as being hasty, undemocratic, elitist, unrepresentative, secretive, and a violation of Canadian political norms. "8 As Cairns points out, the demise of the Meech Lake Accord was largely the result of a conflicting agenda between citizens and federal government institutions: While federalism may still be largely about governments, federalism itself has lost relative status in the Constitution as an organizing principle. The Constitution is now also about women, aboriginals, multicultural groups, equality, affirmative action, the disabled [italics added], a variety of rights, and so on. Since it is not possible to separate clearly the concerns of the governments which dominate federalism from the concerns of these newly constitutionalized social categories, it logically follows that the Constitution with its many non-federal concerns can no longer be entrusted exclusively to governments in the process of constitutional change (Cairns 1998, 261).

Despite the failure of the Meech Lake Accord, the Mulroney government continued to seek methods to include Quebec within the Canadian Constitution. In an effort to alleviate the fears of Canadians

71 The Charlottetown Accord

and to restore a sense of legitimacy to the enterprise of constitutional reform, the Conservative government consulted with a wide range of citizen groups, advocacy organizations, and Aboriginal peoples. THE STRUGGLE FOR

INCLUSION

IN THE CANADA CLAUSE

During the second half of 1990, several events occurred that re-ignited the process of federal-provincial discussions on constitutional reform. These included the formation of the Bloc Quebecois, the establishment of the Belanger-Campeau Commission in Quebec on 2 5 July 1990, the formation of the Alberta Premier's Commission on the Constitution in September 1990, the establishment of a Citizens' Forum on Canada's Future chaired by Keith Spicer, and finally the creation of the Beaudoin-Edwards Committee to explore a constitutional amending formula. Ronald Watts (1992), a noted expert on Canadian politics, has suggested that the process of constitutional revision between 1990 and 1992 can be considered in three phases: the process of public discussion, the stage of intergovernmental negotiations, and the referendum campaign. The first stage, the process of public discussion, was used to identify the nature and extent of public support for constitutional revision. This stage lasted from the formation of the Spicer Commission in November 1990 until the release of the Beaudoin-Dobbie Report of the Special Parliamentary Joint Committee in March 1992. During this period none of the commissions, committees, or councils were specifically mandated to consider the needs or concerns of Canadians with disabilities. However, as the public discussion phase progressed, beginning in March 1991 and continuing until February 1992, provincial and national disability organizations submitted briefs to a number of provincial and federal committees. These briefs generally called for new safeguards and policies to support and enhance the inclusion of Canadians with disabilities in all aspects of Canadian society. Intergovernmental negotiations, the second phase, began after the release of the Beaudoin-Dobbie Report of the Special Joint Committee on a Renewed Canada, in March 1992. This phase lasted until the announcement of the Charlottetown Accord on 28 August 1992. The Beaudoin-Dobbie Report contained the first example of a Canada Clause, or a specific acknowledgment that nothing in the proposed accord would contravene existing rights outlined for specific groups in section 15 of the Charter of Rights and Freedoms. However, the proposed Canada Clause lacked specific mention of persons with mental and physical disabilities. Initially, COPOH and other disability rights

72 A Seat at the Table organizations did not react to this omission. It was not until the announcement and publication of the full text of the Charlottetown Accord that Canadian disability organizations recognized the implication of their omission from the Canada Clause. The final phase of the Charlottetown process, the referendum campaign, occurred between i September and 26 October 1992 and culminated in defeat of the Accord. It was during this phase that disability groups across Canada began, first, to negotiate for amendments to include people with disabilities in the Canada Clause and then, failing to gain inclusion, argued for a NO vote in the referendum. The following chronology describes the involvement of Canadian disability organizations in the three phases of the Charlottetown process. Public Discussion: November iqyo -March 1992 In November 1990, the federal government announced the formation of a Citizens' Forum on Canada's Future, to be chaired by Keith Spicer. In addition, in December 1990, the federal government created a Special Joint Committee of the Senate and House of Commons to hear testimony on a constitutional amending formula. Subsequently, various provincial governments also established committees to examine constitutional reform. Ontario's Select Committee on Ontario in Confederation appears to be the first committee to address the concerns of Canadians with disabilities. Its March 1991 Interim Report contained a section entitled "Disabled Individuals." Gary Malkowski, an elected member of the ruling NDP government and a member of the deaf community, was a member of the Ontario Select Committee. He was probably the only elected member of a provincial constitutional committee who had a disability. The Ontario Interim Report noted that although the committee had heard primarily from members and representatives of the deaf community, it would "comment both on the unique concerns of this group and on the nature of some problems shared with other disabled individuals."9 The Report recommended policies that considered the needs and desires of people with disabilities, addressed the significant barriers that prevented people with disabilities from participating in society, and empowered people with disabilities to make key decisions that affect their lives. It also addressed the issue of inclusion: "People with disabilities have felt excluded from and want a voice in the process of constitutional reform. Of particular concern ... was the possibility that a restructuring of our constitutional structure could weaken the quality and national nature of our social programs when these in fact should be strengthened" (Select Committee 1991, 2 2 ) .

73 The Charlottetown Accord

The committee specifically commented on section 15 of the Charter and suggested that constitutional reform be sensitive in two areas: that national programs not be weakened; and that Section 15 be clarified to ensure it only benefited members of disadvantaged groups. Finally, the Committee undertook that its next phase of discussions would consider how the rights of people with disabilities could be addressed more effectively in the Constitution. The second province to formally consider the needs of Canadians with disabilities was Alberta. In October 1991 the Premier's Council on the Status of Persons with Disabilities and the Alberta Committee of Citizens with Disabilities prepared a discussion paper for the Premier's Council on Constitution Reform. Entitled "Constitutional Reform: Implications for Canadians with Disabilities," the report called for amendments to sections 15, 27, and 28 of the Canadian Charter of Rights and Freedoms and the development of a "Social Charter." The suggested amendments to the Charter included changes to section 15 "to ameliorate the conditions of disadvantaged individuals or groups." The rationale for these changes was to prevent abuses of section 15 where "white male job applicants might claim discrimination if jobs are awarded to women, Aboriginals or other Employment Equity target group members" (Alberta Premier's Council 1991, 21—22). The Alberta report noted that sections 27 and 28 of the Charter were designed to help identify equality goals for ethnic minorities and women. It called for the addition of new sub-sections to support "the amelioration of the conditions of persons with disabilities to be achieved by their inclusion in the social, political and economic mainstream through the removal of barriers." It suggested in addition that a "barrier review" be conducted every four years by both federal and provincial levels of government for ongoing development of legislation to support inclusion of people with disabilities. The Alberta report amendments also prioritized the equalization of transfer funds received from wealthier provinces and called for the "development of a constituent assembly that would include representatives from minority groups from each province." Finally, it called for the Canadian Constitution to support the social goals of the International Bill of Rights through the inclusion of "guarantees of those social rights which will ameliorate the underlying social conditions that hinder health, dignity and productivity" (Alberta Premier's Council 1991, 22-23).10 On 13 May 1991, in the Speech from the Throne opening Parliament, the federal government announced another stage of constitutional reform under the leadership of Joe Clark, Minister Responsible for Constitutional Affairs. A background paper Shared Values: The

74 A Seat at the Table Canadian Identity was published in August 1991. It argued that Canadians wanted a mutually supportive society where "particular groups that may have been overlooked, such as the disabled or children, [could] henceforth, get the help they need." It went on to define the purpose of equality rights: "to remedy or prevent discrimination against groups suffering social, political or legal disadvantage ... Women, the physically challenged, our senior citizens, aboriginal peoples, visible minorities, official-language minority groups and others face daily challenges not always understood by the rest of society" (Government of Canada 1991 a). The federal government's constitutional proposals were released on 24 September 1991 in a booklet entitled Shaping Canada's Future Together. The proposals contained the first reference to a "Canada Clause" that was to be a fundamental statement about Canadian identity. The clause included specific mention of persons with disabilities by recognizing "a commitment to fairness, openness and full participation in Canada's citizenship by all people without regard to race, colour, creed, physical and mental disability [italics added], or cultural background" (Government of Canada 1991, 9, 12, 52). Public hearings on the federal proposals were held by the Special Joint Committee of the Senate and House of Commons, first called the Beaudoin-Edwards Committee, later the Castonguay-Dobbie Committee, and still later the Beaudoin-Dobbie Committee. The hearing process was initially reported to be confused and disorganized. During the hearings process, however, the committee received some 3,000 submissions and listened to testimony from 700 individuals. A review of the Beaudoin-Dobbie final report showed that only a very small number of submissions or invited presentations were received or made by individuals with disabilities or organizations representing people with disabilities. Donald Halechko and David Martin, from the Manitoba League for the Physically Handicapped, presented a brief at the request of the Committee on 4 November 1991. Building on their previous presentations in the Meech Lake discussions, they made four main recommendations. First, they recommended that constitutional discussions support "the integrity of the equality rights protections in the Charter for citizens with mental and physical disabilities." Second, they sought the removal of the "notwithstanding" clause, which allowed provinces to opt out from specific sections of the Charter. They supported a strong federal government role in facilitating national standards in social policy areas through such mechanisms as shared-cost programs and transfer payments to less wealthy provinces. Finally, they called for sup port to meet the constitutional concerns of Aboriginal Canadians.'l

75 The Charlottetown Accord In November 1991, in response to criticism of mismanagement in the Castonguay-Dobbie Committee, Joe Clark announced the addition of a series of six televized regional conferences to discuss federal constitutional proposals. These conferences focused on issues of distinct society status facing Aboriginal groups and Quebec. Issues related to disability did not appear to play a significant role. Indeed, individuals with disabilities were often unable to get in (Russell 1992, 179-81). In Toronto they had to carry a ramp in. In Newfoundland the door was too narrow, [the] wheelchair wouldn't go through it. In British Columbia they had it in a second floor location with no elevator and they had to carry somebody up 14 stairs to get her in ... We complained about it, but by the time we complained they were just about finished the round. We got to as many as we could but at that stage we were not organized enough to make a loud enough cry about it ... They didn't want us there, they seriously didn't. Some of those meetings were deliberately held where you couldn't get into them. 12 Provincial processes were affected by these federal hearings. The Final Report of the legislative committee for Ontario was released at the end of February 1992. Its first recommendation supported the inclusion of people with mental and physical disabilities within the Canada Clause. It also called for a review of the Charter of Rights and Freedoms to identify ways to improve the Charter. Specifically, methods were needed to make the appeals process more accessible for enforcement of the Charter; there was a need for equality rights guarantees which recognized that the integration of persons with disabilities could best be achieved by their inclusion in the social, political, and economic mainstream through the removal of barriers (Select Committee 1991, 84). Eric Boyd, Executive Director of the Alberta Premier's Council on the Status of Persons with Disabilities, presented the Alberta brief Constitutional Reform: Implications for Canadians with Disabilities on 22 January 1992. The brief also called for a strong federal government capable of providing effective leadership and of maintaining national health standards and social programs with equitable access for persons with disabilities across the country. In addition, Boyd outlined other major concerns for Canadians with disabilities, which included protection and enhancement of the Charter; a guarantee of barrier-free access to public goods and services; and changes in areas such as immigration and vocational training (Select Committee 1992, 46-50). The outcome of all these processes was that on i March 1992 the Final Report of the Special Joint Committee of the Senate and House of Commons was released. In this report, however, the Canada Clause

76 A Seat at the Table omitted reference to people with mental and physical disabilities. This was significant because the report formed the basis for the federal government's intergovernmental process of negotiations with the provinces that was announced by Constitutional Affairs Minister Joe Clark on 12 March 1992. Thus, despite the presentations made by disability rights groups advocating measures to safeguard and enhance rights and policies for persons with disabilities, the final federal report omitted all the references to persons with disabilities, or their concerns, that had been addressed during the federal and provincial public hearings. During the process of intergovernmental negotiations, the provinces dominated the discussions, and the central issues were distinct society status for Quebec, Senate reform, division of federal-provincial powers, Aboriginal self-government, and the development of a social charter (Brown 1992, 195-8). During the period between March and i June 1992, little was heard from disability advocacy organizations. As the interpretive nature of the Canada Clause was clarified in the governmental negotiations, however, various advocacy groups began to complain about their omission. The Canadian Ethno-cultural Council made the first complaint on 9 June 1992. The first objections by disability rights organizations began in July 1992 (Brown 1992, 11). By the middle of August 1992, Quebec had joined the negotiations with other First Ministers and the federal government, and issues of Senate reform and Aboriginal self-government were addressed. The negotiations ended with the signing of the Charlottetown Accord on 28 August 1992. The Canada Clause contained specific references to women, racial and ethnic equality, language minorities, and Aboriginal peoples. However, as was the case with the Canada Clause that had been recommended in the March 1992 Special Report, it did not contain any special reference to persons with mental and physical disabilities. Beginning in September 1992, the federal and provincial governments launched a campaign to gain a YES vote in a national referendum on the Charlottetown Accord to be held in October 1992. Canadian disability rights organizations began a process of lobbying at both the federal and provincial level to amend the Accord to include persons with disabilities. The national office of COPOH and its provincial affiliates exerted an active influence during the referendum campaign. The announcement of a referendum in Charlottetown in August had not included the final legal text of the Accord which was to be prepared in the following month. This text was not released until 9 October 1992, approximately two weeks before the referendum.

77 The Charlottetown Accord However, the official legal text for the Canada Clause in the Accord had not been revised and contained no reference to persons with mental or physical disabilities other than the reference in section 2 (f) that "Canadians are committed to a respect for individual and collective human rights and freedoms of all people." Following a short intense period of consultations with federal and provincial officials, COPOH and many of its provincial members recommended that Canadians vote NO in the referendum. In this recommendation, they joined with other equality-seeking groups. Major concerns had arisen among Canadians across the country about the Accord's provisions for a "distinct society clause" and its recommendations for Senate reform. The referendum on the Charlottetown Accord was held on 26 October 1992 and was defeated by a NO vote of 54 per cent nationally. It also failed to gain approval in six of out of ten provinces and in both territories. COPOH M O B I L I Z E S THE NO VOTE

The major organizational players in the lobbying efforts for the Charlottetown Accord were COPOH and its provincial affiliates. After the initial work of COPOH in the passage of section 15 of the Charter of Rights and Freedoms in 1980-81, the organization continued to develop as a national voice for organizations of individuals with disabilities in Canada. Between 1987 and 1990, COPOH prepared briefs for hearings such as the Special Joint Committee on the 1987 Constitutional Accord. Between 1990 and February 1992, COPOH also developed a brief on constitutional reform in conjunction with its provincial member organizations. The central focus of COPOH's activities during the 19808, however, was lobbying the Canadian federal government to champion constitutional proposals to further safeguard and enhance the rights of persons with disabilities (COPOH 1991). By the 19905, when the formal constitutional talks began again, COPOH was "a membership organization representing advocacy groups from each province that adhered to the principle of independence and dignity for disabled persons, full participation in the community, working towards equal opportunities." Its member organizations were 51 per cent consumer-controlled, with a philosophy of independent living, peer counselling, information sharing, and educating members in the community on disability principles.13 Through its provincial organizations COPOH by this time represented at least 30,000 people. It received funding from the federal and provincial governments and a small amount of money from donations. Its annual budget for 1991-92 was approximately $800,000. COPOH

78 A Seat at the Table acted as a liaison with other national disability organizations such as the Canadian Association for Community Living, the Canadian Independent Living Association, the CNIB, and the Canadian Paraplegic Association. Those organizations were not directly connected with COPOH, however, because each wanted to keep its individual national standing, and some did not meet COPOH's criteria for consumer control of their board of directors. During the early stages of the Charlottetown Accord negotiations, proposals related to persons with disabilities were presented to various provincial constitutional committees, including the Ontario and Alberta Provincial Committees. These proposals called for the support and enhancement of equality rights, the maintenance of federalprovincial spending powers, and the removal of barriers to participation for people with disabilities. The federal government's first constitutional proposal, released in September 1991, had included a Canada Clause that contained specific mention of physical and mental disability. This issue was not new, although it had previously been contentious during the Meech Lake round of constitution talks. The publication of the final report of the Special Joint Committee, released on i March 1992, contained a Canada Clause that omitted any reference to people with mental and physical disabilities. Initially, COPOH did not respond to this omission and indeed, as mentioned, focused more on maintenance of national standards. In one of its press releases on 16 July 1992 entitled "National Standards: Slip-sliding Away," COPOH argued that constitutional changes would fundamentally alter the way Canadians would access employment and training programs and called for consultation with persons with disabilities in the development of national standards for employment and training. On 28 July 1992, another COPOH press release, entitled "No News is Bad News," again focused on the lack of response from the federal and provincial governments to the need to develop national standards, to consult with Canadians with disabilities before moving Employment and Immigration to the provinces, or to ensure that barrier-free service delivery systems would be constructed (COPOH 1992). The news release also reported the beginning of a national letter-writing campaign to focus attention on this issue. By 26 August 1992, COPOH stated its position again: "Disabled Canadians have worked to develop an understanding of equity and accessibility. If employment services are to be delivered in 10 separate jurisdictions, disabled people will be the losers" (COPOH i992b). The first reaction to the impact of omission of persons with mental and physical disabilities from the Charlottetown Accord came in late

79 The Charlottetown Accord August 1992. Shelagh Day of the National Action Committee on the Status of Women (NAG) contacted Yvonne Peters of the Canadian Disability Rights Council. Peters was also a former chair of COPOH'S Human Rights Committee. Day had been participating in constitutional discussions at Charlottetown. Peters recalls that Day said: "Look, this is really, really serious. There are no people with disabilities here. I'm doing what I can - you must get going on this issue."14 COPOH contacted its provincial affiliate members and alerted them to the possibility that the proposed Canada Clause might have an impact on section 15 of the Charter. Peters recalled that it "hit to the core of people's very being ... Rights are still so fragile, so new, that anything that might tamper with it ... It got people motivated and active."15 Francine Arsenault, the 1992 Chair of COPOH, recalled a similar reaction from members: "We have to be in there! If we are not in there, things are going to be put on the back burner again."l6 Working with provincial member organizations, COPOH 's leader organized a series of meetings with provincial premiers and officials. COPOH also worked with the media, although it was "very difficult to get the issue across to the press because there were legalistic kinds of arguments that had to show how it might be a worry, and if you didn't understand those arguments then it just seemed like a lot of whining."l7 In an article in the Globe and Mail on 4 September 1992, Laurie Beachall, national coordinator of COPOH, stated that the new Constitution would create a "hierarchy of rights in which the handicapped would have fewer rights than women and racial minorities" (York 1992). The article also quoted Peters's concerns that the rights of persons with physical and mental disabilities, specifically mentioned in earlier federal constitutional proposals, had been omitted. "[We] cannot understand why the clause was dropped from the final version. It makes us very nervous. We have to ask our politicians why? What made them change their mind? We became very suspicious" (York 1992). In a subsequent press release on 8 September 1992 entitled "Disabled Canadians Dropped from Canada Clause," Peters again laid out COPOH'S position to ask the government "to reinstate a provision to ensure the equality of Canadians with disabilities" (COPOH i992c). The press release also linked the recently announced cancellation of the Court Challenges Program, which provided legal support to Charter groups challenging discrimination, with the omission of disability from the Canada Clause (Canadian Press 1992). Throughout September, COPOH and its provincial member organizations sought negotiations to amend the Canada Clause. A number of meetings with federal and provincial government leaders were quickly arranged. On 15 September 1992, COPOH met with Joe Clark, the

8o A Seat at the Table Minister Responsible for Constitutional Affairs. At that meeting, Clark argued: "It is my firm belief that there are no legal grounds upon which to conclude that the Canada Clause agreed to in Charlottetown undermines the protections which are clearly in place and intact in the Canadian Charter of Rights and Freedoms and other human rights legislation" (Clark 1992). Clark suggested that he would write to provincial premiers and territorial leaders asking that they examine the issue "with a view to arriving at an early, practical way in which the concerns of disabled persons could be met" (Clark 1992). During the referendum stage of negotiations, Beachall reported, the executive of COPOH "went directly to Mr. Clark and ... talked to him very frankly. We said, 'We want to know why this has happened?' We went to other premiers as well. We were seeking a process to try and include within the Canada Clause protection of disabled Canadians' rights ... We did look towards a collaborative process to try to find a solution ... rather than an outright call for defeat of the Charlottetown Accord."18 COPOH's members had been involved in the process of negotiations for equality rights since the late 19705. Beachall remarked that they could relate to exclusion and understood it intrinsically. "It hit sort of a gut level ... for our organization, because we were involved in 1981 in the repatriation amendment in the Charter discussion ... A lot of the leadership has been around for that ten-year period of time. It was like, 'Here we go again. We got to fight this one over again.' " 19 Carol McGregor, Executive Director of PUSH Ontario, along with Francine Arsenault of COPOH and other colleagues, met with Bob Rae, then premier of Ontario, on 22 September 1992. Again, while Rae was sympathetic and suggested he would write to the other premiers, no amendments were forthcoming to the Canada Clause. Across Canada other provincial members of COPOH were also lobbying. The Consumer Organization of Disabled People of Newfoundland and Labrador issued a press release on 18 September 1992 warning of a hierarchy of rights that "may reduce the ability of persons with disabilities to challenge discriminatory actions" (Consumer Organizations 1992). They noted that they had arranged a meeting with Premier Clyde Wells to discuss the issue. Don Halechko and other members of the Manitoba League for the Physically Handicapped, met with the Manitoba Minister of Justice on 21 September 1992, to urge him to use his influence "to correct this situation by amending the Canada Clause before the October 26th referendum to include reference to disabled Canadians" (Halechko 1992). In September COPOH sought legal options and opinions from the Advocacy Resource Centre for the Handicapped (ARCH), and the

81 The Charlottetown Accord

Canadian Disability Rights Council (CDRC), and consulted constitutional lawyers across Canada on the impact of the Canada Clause. David Baker of ARCH wrote that the inclusion of a sub-clause with a specific reference to people with disabilities could be added to the Canada Clause. In his analysis of the Canada Clause, Baker argued that there was a "real possibility that people with disabilities will be accorded a lower level of equality protection than they currently possess and which those groups enumerated in the Canada Clause will continue to enjoy. The proposed clause may create a hierarchy amongst disadvantaged groups protected by the equality clause where no hierarchy currently exists" (Baker 1992, 1-2). Baker recommended inclusion of a sub-clause as the most easily implemented alternative. In their brief to COPOH on 16 September 1992, the CDRC stated: "It is CDRC'S opinion that it cannot be said with certainty that the exclusion of people with disabilities from the Canada Clause will not downgrade the equality rights of people with disabilities in Section 15 of the Charter" (CDRC 1992). By mid-September two groups, DAWN Canada and the British Columbia Coalition of People with Disabilities were arguing for a NO vote. DAWN reported on 20 September 1992 that, following a unanimous vote, it was joining with the NAG and the Native Women's Association of Canada to say NO to the Charlottetown Accord. The British Columbia Coalition of People with Disabilities also released a press statement on 22 September 1992 calling for people with disabilities to vote against the Charlottetown Accord. Margo Massie, Coalition President, declared: "There is tremendous pressure out there from the 'YES'juggernaut. But we won't be intimidated into silence ... 1992 is the end of the Decade of Disabled Persons and it seems we are no longer fashionable ... The Canada Clause ... may be silent on people with disabilities, but people with disabilities won't be silent on the Canada Clause" (B.C. Coalition 1992). Another special interest group spoke out in defence of persons with disability. One Voice: The Canadian Seniors Network protested: "Canadians don't want to hold their noses to vote YES for national unity." Among their recommendations for changes was a call to modify the Canada Clause to include the rights of persons with disabilities and ensure that the Clause did not weaken the Charter of Rights and Freedoms (Aitkens 1992). However, letters to Joe Clark prepared by various provincial premiers maintained: "The rights of the disabled are in no way negatively affected by the present formulation [of the Canada Clause] ."20 On 9 October 1992 the final legal text of the Charlottetown Accord was released. The rights of persons with disabilities were not included

82 A Seat at the Table in the Canada Clause. Following its release, provincial premiers wrote to COPOH and other provincial disability groups arguing that there had never been "any intention ... to negatively affect the rights of the disabled in any way." They promised that they would be open to reviewing modifications to the Accord after a "positive outcome from the October 26th referendum."21 In a last-ditch effort at negotiations, COPOH announced an October 19 deadline for first ministers to respond to their proposal for inclusion of persons with disabilities in the Canada Clause. They stated at a press conference on 16 October 1992: "We urge you to take this opportunity and express your collective will publicly to include the rights of persons with disabilities in the Canada Clause" (COPOH ig92d). COPOH announced that it would make a public statement on 20 October of its position on the referendum. COPOH received no positive response from any of the federal or provincial governments. Instead its members were urged to accept a commitment "for a modification to section (f) of the agreed Canada Clause at the first ministers' meeting to be held following a successful conclusion to the referendum" (Clark 1992). On 20 October COPOH held a news conference to announce its final decision on the Accord and recommended that Canadians vote NO. Its press release reminded voters: "Protection of our rights as Canadians with disabilities was dropped from the Canada Clause. We were told it was unintentional and that protection could be re-instated in the legal text. However, now that the draft legal text is public we find ourselves once again excluded. We have no choice but to VOTE NO" (COPOH 19926).22 Advertisements placed in newspapers across Canada by COPOH and provincial disability rights organizations noted that they had "asked for a guarantee that our rights would not be down-graded ... We asked for revision of the legal text to ensure our protection. Again we were omitted. Some say they will fix it later. Is that sufficient? The COPOH Council says NO" (COPOH 19926). The sad recognition by Canadian disability organizations that the exclusion of individuals with mental and physical disabilities from the Canada Clause of the 1992 Charlottetown Accord would not be changed by the Canadian first ministers provided a dramatic contrast to the excitement generated by the inclusion of physical and mental disabilities in section 15 of the Charter of Rights and Freedoms in April 1981. A MAJOR P A R T I C I P A N T MATURES

Throughout the period between 1987 and 1992 Canadian federal and provincial governments attempted a process of constitutional reform.

83 The Charlottetown Accord During this period, disability advocacy organizations sought to maintain and enhance the disability rights provision of the Canadian Charter of Rights and Freedoms. After the failure of the Meech Lake Accord, Canadian disability rights groups, particularly those affiliated with COPOH, worked during the consultation phase of the Charlottetown Accord to safeguard and enhance the rights of persons with disabilities. They sought to ensure their inclusion in the social, political, and economic mainstream through the removal of barriers and the amelioration of conditions deemed to be causes of disadvantage. Furthermore, they sought a strong federal structure capable of providing federal leadership to ensure that persons with disabilities had equal access to social programs across Canada. For the leaders of COPOH and other disability rights groups, the period between September and October 1992 represented a maturing of their groups' abilities to mobilize and exert influence on government policy. In their view, it was better to have no constitutional amendment than to have a flawed amendment that could further disadvantage persons with disabilities. Fourteen years after the passage of the Charter of Rights and Freedoms, Laurie Beachall, National Coordinator of COPOH, argued: CCD [Council of Canadians with Disabilities, formerly COPOH] probably took the best approach it could and made the situation as winnable as it could within the context, within the climate. We certainly got disability, which I don't believe had been on any of the premiers' plates. We got their attention. We got the Government of Canada's attention. We got the media's attention ... [The omission from the Canada Clause] was an unexpected issue that we never expected to be spending time and energy on ... I think three things were helpful: One was that we galvanized our own movement around an issue and touched sectors within the disabled community that had not been closely connected to us previously ... we were able to get public media - national media - coverage of our issue ... And we had significant meetings with premiers and Mr. Clark around the issue that I think had a beneficial outcome in the long run. 23

One unexpected outcome of the Charlottetown Accord, however, has been the development of an opposition towards special interest groups on the part of politicians within the Liberal Party and in the Opposition ranks. Special interest groups have been criticized for taking government funding and then attacking government policy. Indeed, since 1993 and the election of the Liberal Government under Jean Chretien, there has been a gradual erosion of federal funding for the Canada Assistance Program (CAP) and the Vocational Rehabilitation for

84 A Seat at the Table Disabled Persons (VRDP) program, the two major federal initiatives for persons with disabilities. In addition, discussions between the federal government and the provinces have moved towards the devolution of federal control over other areas of policy such as manpower training and employment. There has been limited discussion about the establishment of national standards or policies to support the full inclusion of persons with disabilities in Canadian society.

6 The Ontario Advocacy Act: Representing Persons with Intellectual Disabilities

I know some people think that the Advocacy Act came into focus because professionals wanted it and because it seems like professionals were speaking about it. But it really came through the hearts of people who are vulnerable because of this system. We are the people who are getting tired of the system betraying us or the system locking us up and hurting us and separating us from our friends and families and society in general. We are people who were really screaming for an independent advocacy system that we can own and that we can nourish so that we can build a foundation of advocacy. We think it is important that government give us that chance. l

DEINSTITUTIONALIZATION AND G U A R D I A N S H I P : 1975 — 85 Ontario's adult guardianship reform movement has recently been concerned with potential exploitation by legal guardians and the outdated nature of provincial legislation on mental incompetency. The central focus of reform has been to establish a non-legal advocacy system for protecting the rights and dignity of vulnerable people living in Ontario's community and institutional settings. This case study gives the opportunity to look at the lobbying activities of advocacy groups for people with disabilities in this context, and come to some understanding of the nature of advocacy group participation.2 When the newly elected NDP government announced plans in late 1990 to create a non-legal system of advocacy and revive earlier reviews of Ontario's mental health laws, many disability rights groups were

86 A Seat at the Table overjoyed. By the end of 1992, the government had tabled four interrelated pieces of legislation: The Advocacy Act, The Substitute Decisions Act, The Consent to Treatment Act, and The Consent and Capacity Statute Law Amendment Act, 1992. Ontario's disability rights community, especially groups representing persons with psychiatric and intellectual impairments, had been urging the government for almost twenty years to create a consumer-driven advocacy system because of the government's failure to create adequate community-based supports in the wake of its deinstitutionalization policy. According to Ernie Lightman: "Deinstitutionalization in favour of community-based care for persons with psychiatric histories has always been marked by a fundamental ambivalence of purpose: the lure of saving money by shutting large and inhumane institutions has been omnipresent in government decision making; the commitment to develop true community care has been far weaker" (Lightman 1992, 25). This "ambivalence of purpose" meant, for example, that people with psychiatric disabilities had typically found accommodation in living arrangements that provided minimal personal care and support. Despite having relatively greater access to adequate community-based housing supports, at least since the mid-igyos, people with intellectual disabilities still faced long waiting lists and often could noly find community accommodation in unregulated boarding homes. This state of affairs created two interrelated sets of problems for these individuals. The first involved mounting financial pressure within government to slow down the deinstitutionalization process until adequate community-based housing options were in place; the second concern, an upshot of the first, was that since large numbers of people with disabilities remained in long-term care facilities they were consequently vulnerable to rights violations and abuse. And, given that many people with disabilities lived in unregulated boarding homes, the potential for rights violations and abuse in community settings was omnipresent even on discharge. The involuntary sterilization of women with intellectual disabilities had been another serious rights violation. Until the 19705, many of Ontario's psychiatric institutions forced such women to undergo sterilization procedures without any form of consent. Moreover, when advocates attempted to combat these rights abuses, it became evident that Ontario's Mental Health Act did not contain any provisions to acquire proxy consent for sterilization procedures or any means for determining who was the appropriate decision maker for women who were intellectually incapable in these contexts. During the mid-igyos, a Supreme Court case (Eve v. Ontario [1986] emerged (it was later to become precedent-setting) and forced the

8 7 The Ontario Advocacy Act

government of Ontario to confront proxy decision-making with respect to involuntary sterilization for individuals with disabilities. As a result, the Ministry of Health and the Ministry of the Attorney General began to hold formal inter-ministerial consultations to determine the appropriate government response. The decision reached at that time was simply to ban outright all medically unnecessary sterilizations in Ontario's hospitals, a decision which avoided the fundamental problem of obtaining consent from persons with disabilities. At the same time, during the late 19705 and early 19803 models of guardianship legislation were becoming an increasingly attractive option for the Ontario government for protecting the rights of people with disabilities. Alberta's Dependent Adults Act, which was one of the most comprehensive and widely respected models for legislative reform, was closely examined by senior government officials in Ontario. At roughly the same time as models for guardianship were being considered, advocacy groups for Ontario's population of persons with disabilities began making formal requests to the government for a system of advocacy. In 1982 Concerned Friends of Ontario Citizens Living in Long-Term Care Facilities, a lobby group for people living in institutions and nursing homes, presented formal policy proposals to the Progressive Conservative Minister of Health for the establishment of an advocacy commission to protect people living in these homes. Other groups representing individuals with disabilities, such as the Ontario Association for Community Living (OACL) and the Advocacy Resource Centre for the Handicapped (ARCH), also began making presentations and lobbying the Ministers of Health and Community and Social Services for systematic non-legal advocacy services. It became evident by the mid-19805 that a wide consultation process would be required in order to more fully define the costs and benefits of guardianship and advocacy legislation. In 1984 the Ontario Attorney General decided to form an official advisory committee comprised of government representatives as well as members from the various advocacy groups for people with disabilities to review Ontario's advocacy services and laws related to adult guardianship. The chronology of the advocacy policy process in Ontario can be divided into three stages: policy review through two provincial committees; policy development with input from disability groups; and an illfated attempt at policy implementation. Policy Review: 1985-90 The Fram Committee In 1985 the newly elected Liberal government in Ontario established an advisory committee on substitute decision

88 A Seat at the Table making for persons with mental incapacity as part of its review process of the legislation relating to mental incompetency. This committee represented the first attempt to define a system of advocacy for Ontario's vulnerable people. Steve Fram, a lawyer in the Ministry of the Attorney General, was appointed to chair this advisory committee. Its specific mandate was to review all aspects of the existing laws that related to persons with mental incapacity and to produce a report making recommendations for reform, including a draft legal text of the proposed reforms. The basic problem the committee attempted to confront was the serious lack of coherence in the rules governing how and when persons may have their rights to control their lives or property removed, and the powers and duties of substitute decision makers in medical and non-medical contexts. The committee's report was also to address the existing advocacy services in Ontario, in particular, the Adult Protective Service Worker (APSW) program (under the Minister of Community and Social Services) and laws relating to conservatorship and personal guardianship. The report's aim was to advise the Attorney General, as well as the Ministers of Health and Community and Social Services, about the kinds of changes that were needed in order to make the existing laws governing mental incompetency more coherent and just. The committee met regularly over the next three years to discuss reforms and recommendations that could be included in their final report to the government. In late 1988, after having reached a rough consensus on most aspects of its mandate, the "Fram Report on Substitute Decision Making" was released. Chief among its recommendations were: • that limiting powers of attorney3 to property decisions, as was the case in the Mental Incompetency Act, was unduly restrictive; medical and personal care decisions should also be recognized as legitimate uses of powers of attorney so that individuals could exercise a certain degree of control over decisions that would affect them should they become incompetent; • that any new legislation should strive to recognize the fact that family members are often the primary source of substitute decision making, and regulations should be structured so as to ensure that any substitute decision making within families respects the interests and rights of the incompetent person; • that a public guardian and trustee be established to act as substitute decision maker for incompetent persons who lack family and friends or who may be the object of abuse or neglect; • that advocacy services for vulnerable people be available prior to the implementation of guardianship and substitute decision

8g The Ontario Advocacy Act

making legislation. These services would ensure that a vulnerable person would understand the consequences of substitute decision making for the control of their lives (Ontario Ministry, 1988). Given the broad terms of reference of the Fram Advisory Committee however, a consensus about the nature of advocacy services for vulnerable people could not be achieved during its mandate. This led the Liberal government in 1986 (one year after the Fram Committee began) to separate the issue of advocacy services from that of consent and substitute decision making and to strike a specific commission on advocacy services mandated to report back to the legislature within one year. The O'Sullivan Commission In 1986 Father Sean O'Sullivan, a Liberal MPP, led a commission sponsored by the Ministry of the Attorney General into the provision of social, or non-legal, advocacy for vulnerable adults in Ontario. The O'Sullivan Commission's mandate was to study the concept of social advocacy in relation to vulnerable adults living in long-term care facilities and community settings, with an eye to formulating specific recommendations for advocacy services, organizational structures, accountability, the training of advocates, and service delivery options. The commission was also to review existing volunteer and professional advocacy services as provided by institutional and community support mechanisms and report to the government during the summer of 1987 (Ontario Ministry, 1987). The two most significant recommendations that came out of the O'Sullivan report were the concept of a "shared advocacy model" and the notion of an "advocacy commission." The former suggested that responsibility for advocacy be shared among government, volunteers, and community groups. The model proposed an evolutionary approach to service delivery that would build on the success of programs such as the Ontario Legal Aid Clinic Funding Program, which encouraged community groups to develop advocacy services to meet the specific needs of their constituents. Second, in order to implement this vision of shared advocacy, a provincial advocacy commission would be required. This body would be empowered to train advocates, set policy, and deliver and monitor non-legal advocacy services throughout Ontario, but at arm's-length from government. The commission would be staffed by people with a "demonstrated commitment to the interests of the vulnerable and should not be employed by a service provider, ministry or agency" (8-9). This objective was soon to become one of the most contentious issues in the process of developing advocacy policy. The timing was not propitious, however. The release of the two advisory committee reports - fall 1987 (O'Sullivan) and fall 1988 (Fram) -

go A Seat at the Table

was followed by a period of shifting priorities and inter-ministerial battles as the Liberal government approached the 1990 provincial election. Consequently, the development of the recommendations into policy and legislation did not take place. Policy Development: iggo-tyzIn August 1990, just prior to the NDP victory in Ontario, a powerful report on community mental health consultations by NDP MPP David Reville was released. Entitled "Doing the Right Thing Right," the report emphasized the need to conduct public consultations on Ontario's mental health system so as to enable people with disabilities to participate in the policy-development process. This report reinforced an earlier set of recommendations articulated by Robert Graham in his "Building Community Support for People: A Plan for Mental Health in Ontario" (1988). Another important event occurred just after the NDP took office in the fall of 1990: the release of a coroner's report on the violent death of Joseph Kendall, a resident of an unregulated boarding home for people with intellectual and psychiatric disabilities. This was at the time the longest coroner's inquest in Canadian history, and the report contained over eighty recommendations for reforming residential accommodation for adults with disabilities. A key recommendation of the report was to create a commission of inquiry to examine the conditions of Ontario's vulnerable population living in unlicensed residential homes. In late fall 1990, the Commission of Inquiry into Unregulated Residential Accommodation for Vulnerable Adults was established under Professor Ernie Lightman of the University of Toronto. The Lightman Commission had members from disability organizations and heard a number of briefs from other disability groups. These initiatives clearly signaled to members of Ontario's disability rights community that the new government was serious about including people with disabilities in the policy-development process. Indeed, in December 1990 when the minister of Citizenship announced plans to introduce legislation to establish a province-wide advocacy system and resurrect earlier reviews of Ontario's mental health law, disability advocacy groups believed their involvement in the process would be essential for defining a consumer-driven system designed to promote the rights, autonomy, and dignity of Ontario's 600,000 vulnerable adults.4 The government tabled the Advocacy Act, the Substitute Decisions Act, and the Consent to Treatment Act in the spring of 1991 and royal assent was granted in December 1992. The lobbying events that took place between tabling and royal assent indicated, however, a clear gap between the ideal of a consumer-driven policy process and the resulting legislation. At the heart of the controversy was the organizational

OntarioAdvocacy AdvocacyAct g i The Ontario structure and mandate of the advocacy commission - the instrument for developing and implementing advocacy services for Ontario's vulnerable adult population. In essence, the Advocacy Act was designed to promote respect for the rights, freedoms, autonomy, and dignity of Ontario's vulnerable adults. It sought to secure these rights by establishing an advocacy commission composed mostly of persons with disabilities and senior citizens. The Advocacy Commission's mandate was to organize and train advocates for the provision of individual and systemic advocacy services for Ontario's vulnerable adults. The Substitute Decision Making Act was conceived to protect vulnerable people from exploitation, abuse, neglect, and financial loss by providing a process through which a competent person (for example, a family member) could be placed in charge of important decisions about finances and personal care. In addition, the legislation gave greater legal protection to vulnerable individuals so that they did not lose the right to determine for themselves what was important and meaningful in life. It also provided for comprehensive support to families and friends who were in a position of making decisions for others, through the creation of the Office of the Public Guardian and Trustee. This office was also empowered through the legislation to act as a guardian for those who lacked family support or friends. Finally, the Consent to Treatment Act codified existing common law regarding consent to medical treatment for people who were mentally incapable. Moreover, it provided a mechanism for obtaining decisions from a substitute decision maker when a person was incapable of consenting to treatment. A further feature of the legislation was that it provided rights protection for people deemed incapable of making treatment decisions by securing an appeal mechanism for any finding of incapacity, and supplied, if requested, an advocate or rights advisor for such an appeal. During the winter months of 1991, government officials constructed the draft for the advocacy legislation, and refined the drafts of the Substitute Decisions and Consent to Treatment Acts formulated during the late 19805. By spring 1991 the government had brought forward Bills 74, 108, 109, and no for first reading before the legislature. After their second reading in June 1991, the bills were referred to the all-party Standing Committee on the Administration of Justice for review and public consultation. At roughly the same time, a coalition of health care provider groups including the Ontario Medical Association and medically oriented groups such as the Ontario Friends of Schizophrenics (OFS), was formed. The central purpose of this Ad Hoc Coalition of Service Providers seemed to be to pressure the government into changing the Consent

g2 A Seat at the Table

to Treatment and Substitute Decision Making legislation, and to ensure that coalition representatives were appointed to the Advocacy Commission. The lobbying activities of this group substantially changed the shape and tone of the legislation. In December 1991 Minister of Citizenship Elaine Ziemba made a statement to the standing committee outlining the basic structure of the Advocacy Act. She made frequent reference to the O'Sullivan Commission Report on the need for advocacy in Ontario to combat "long-standing social injustices" to the disabled community. The standing committee began its official public consultation phase on the legislation in early February 1992. It heard over 140 presentations in two rounds of public hearings between February and April and between June and October of that year. It also solicited and received about 200 written submissions from a wide variety of individuals, advocacy groups, and interest groups, which commented on all aspects of the legislation. In April the committee considered and debated many of the concerns raised during the first round of the hearings process. Senior governmental officials from the Ministries of the Attorney General, Community and Social Services, Citizenship, and Health assisted in drafting amendments to the legislative package. All of these draft amendments were then referred to the Ontario Cabinet for consideration and approval. On 4 May 1992 the government announced publicly that it was making changes to the entire legislative package, on the basis of the problems and recommendations raised during the first round of consultations. Despite formal involvement in the process of developing the Advocacy, Substitute Decision Making, and Consent to Treatment legislation, most advocacy groups on either side were not satisfied with the changes announced in May 1992. The essence of their complaints was that the proposed changes were either too weak to overcome the perceived deficiencies of the legislation, or that the amendments reflected compromises that harmed the interests of one or another group of individuals with disabilities. One of the major changes was the government's move to alter the structure of the Advocacy Commission. Originally, the commission was to be composed of twelve consumers (or representatives) plus a chair. But due to pressures placed on the government from the Ad Hoc Coalition of Service Providers, four of the twelve positions on the commission were reserved for representatives sponsored by this group. Implementation Of Legislation: 1993-95 Between early 1993 and i April 1995 when the legislation came into effect, the primary lobbying activity undertaken by all lobby groups

93 The Ontario Advocacy Act

centred on two fronts: the first related to securing participation on the government committees established to draft regulations and policy frameworks for implementing the legislation; the second related to the structure of the Advocacy Commission and the process through which members of the commission were to be selected. The most controversial developments regarding implementation concerned the structure and composition of the Advocacy Commission itself. During April 1994 the Management Board of Cabinet debated the specific relationship the commission should have with the government. Originally, the commission was intended to function at arm's-length from government in order to promote and defend the rights of people with disabilities independently. However, some government officials called for a closer relationship between these two entities by designating the commission to be a Schedule I Crown Agency that would be directly accountable to government. As a result of the lobbying actions of many groups, the Advocacy Commission was ultimately designated a Schedule III Crown Agency, at arm's-length from government. Another significant and controversial issue was the process for appointing advocacy commissioners. The legislation created an Appointments Advisory Committee to recommend to the Minister of Citizenship a list of possible candidates for membership on the Advocacy Commission. This committee itself was made up of nine consumer representatives, to be appointed by the Minister of Citizenship. The process for selecting an initial list of candidates from which appointments to the Advocacy Commission were to be made was complicated. First, six geographic regions of the province and eight separate categories of organizations could nominate candidates (service providers and disability advocacy groups being the dominant categories). The next step involved regional elections of candidates; regionally elected candidates would then enter a province-wide election. Individuals who were successful at that level were then part of the list of candidates from which the minister was to choose eight members for the commission. The remaining four commissioners were to be selected by the Minister herself from an additional list of people who had "a demonstrated commitment to the purposes of the Act" (The Advocacy Act, 1992 section 5 (4)). However, all four positions went to candidates recommended by the Ad Hoc Coalition of Service Providers, some of whom were extraordinarily critical of the legislation. This change in representation seemed to be the result of lobbying efforts by the Ad Hoc Coalition that had been directed not only to the Minister of Citizenship during the Standing Committee hearings in 1992, but to Premier Bob Rae himself.

94 A Seat at the Table

The greatest controversy arose, however, over the appointment as chair of the commission of David Reville a former NDP politician who at that time was Premier Bob Rae's senior policy advisor. Besides the obvious charge of a patronage appointment, controversy erupted over his $125,000 annual salary and his outspoken allegiance to commissioners with disabilities over those whom the Minister appointed from the Ad Hoc Coalition. The resulting hostility among some members of the commission confounded the process for developing the Advocacy Commission and implementing the Advocacy Act. C H A R A C T E R I S T I C S OF THE COMPETING COALITIONS

The Ontano Advocacy Coalition

The largest and most influential disability advocacy organization to support the proposed legislation was the Ontario Advocacy Coalition (OAC). As of i March 1994, the coalition was composed of forty-six disability rights advocacy groups from across Ontario, including non-governmental organizations and arm's-length government agencies. The loosely structured coalition was initially formed in 1986 by Orville Endicott, a long-time able-bodied advocate for people with intellectual disabilities and legal consultant with the Ontario Association for Community Living (OACL) and People First Ontario, an advocacy group for people with intellectual disabilities. The central goal of the OAC in this policy process was to promote the establishment of an independent, fully funded, advocacy system for vulnerable people living in Ontario. The OAC'S specific mandate to establish an advocacy system in Ontario was described in its official statement of principles: • the advocacy system should be introduced and be fully operational prior to legislation on substitute decision-making legislation; • the advocacy system should promote and support self-advocacy; • the advocacy system should require that advocates act on behalf of individuals rather than the state; • there should be a provincial Advocacy Commission at arm 's-length from government that is fully funded by government; • the provincial Advocacy Commission should be consumer-driven and composed of a majority of consumers. Four groups in the Advocacy Coalition stand out for their initial drive to create an advocacy system in Ontario: ARCH, Concerned Friends, People First Ontario, and the OACL. In essence, these groups

95 The Ontario Advocacy Act

made initial contact with each other during their separate lobbying activities in the early 19805. Concerned Friends was lobbying the Conservative Minister of Health, Larry Grossman, over the treatment of vulnerable elderly people in Ontario's nursing homes. At roughly the same time, the OACL and People First Ontario were lobbying the Ministry of Community and Social Services for a more formal advocacy system to protect people with intellectual disabilities living in nursing homes and long-term care institutions. ARCH, being a specialized legal aid clinic for people with disabilities, began to be called upon to represent individuals with disabilities in legal matters surrounding guardianship and rights advocacy. It is interesting to note that all the dominant figures leading these groups either worked for the OACL or had on-going contact with OACL staff. As previously mentioned, Endicott, the Coordinator of the Advocacy Coalition, worked as a legal consultant with both People First and OACL. David Baker, the executive director of ARCH, and one of the central players in the disability rights community in Ontario, was a lawyer with OACL. Trish Spindell, the spokesperson for Concerned Friends, was a staff member focusing on advocacy for OACL during the early 19805. And Patrick Worth, Past President of People First Ontario, worked closely with Endicott and had collaborated with OACL on advocacy and guardianship issues. Thus, the central leadership of the Advocacy Coalition began its advocacy work with a strong representation on behalf of people with intellectual disabilities. The involvement in the coalition of people with psychiatric disabilities and their advocacy organizations was also facilitated by contacts between ARCH and the Psychiatric Patient Advocate Office (PPAO) of the Ministry of Health. Baker of ARCH and David Giuffrida of the PPAO had worked together on the Fram Committee beginning in 1985. Giuffrida's contacts in the mental health field drew to the Advocacy Coalition mainstream groups such as the Ontario and Toronto branches of the Canadian Mental Health Association. As well, an influential seniors group - Canadian Pensioners Concerned - initiated their contact with the Advocacy Coalition during the coroner's inquest into the death of Joseph Kendall between 1985 and 1990. Mae Harmen, a retired social work professor who would later serve as co-chair of the OAC, participated on behalf of this seniors advocacy group in the activities surrounding the coroner's inquest. During the official government-led drive for advocacy services in the 1990-95 period, the key spokespersons for the Advocacy Coalition were Orville Endicott (Coordinator), Joan Fussel (Co-Chair) Mae Harmen (Co-Chair), Patty Bregman (ARCH), and David Giuffrida

96 A Seat at the Table

(PPAO). Patrick Worth and Norval Sears of People First Ontario and Audrey Cole of the OACL were also important leaders in the advocacy debate, but their role was complicated by the fact that both groups split away from the Advocacy Coalition in 1991 over the substitutedecisions legislation, to be discussed later. One difficulty in determining who were the chief spokespersons for the Advocacy Coalition was its loose structure: key member groups would often speak to the media or before government committees as representatives of their member group and not as representatives of the Advocacy Coalition. But this practice was not perceived as detrimental to the objectives of the coalition: Patrick Worth, for instance, was generally viewed to be a passionate, well informed, and articulate spokesperson on the need for an advocacy system. Indeed, as the Hansard record reveals, Worth's presentations before the Standing Committee on the Administration of Justice clearly moved the politicians and senior government officials. Despite the Advocacy Coalition's inability to speak with one voice on important organizational issues, it received government funding until the Progressive Conservative government of Ontario assumed power in June 1995. The position of coordinator for the Advocacy Coalition was a paid, part-time position, dependent on funds from the Ministry of Citizenship. In addition, the Advocacy Coalition obtained money from the same ministry to assist with public information sessions related to the advocacy legislation during 1993-94. The key organizational feature of the Ontario Advocacy Coalition was a shifting membership base. Although its groups were all committed to the overall goal of securing advocacy legislation, there were many competing views: for example, on how the leadership of the Advocacy Coalition was to be structured, on the funding of groups within the coalition, and on the type of lobbying tactics to be employed. Ultimately, the Advocacy Coalition was a loosely structured group that was able to make dramatic gains in terms of problem identification and policy formation, but lacked sufficient depth and consistency to prevent challenges from well organized opposition groups during the policy implementation phase. Tfo Ad Hoc Coalition of Service Providers The other major interest group in this policy-making process was the Ad Hoc Coalition of Service Providers. Although not composed of persons with disabilities per se, it included family members who advocated for persons with disabilities. The Ad Hoc Coalition provides an interesting and illustrative contrast to the Ontario Advocacy Coalition.

gy The Ontario Advocacy Act

Unlike the Advocacy Coalition, the Ad Hoc Coalition was tightly organized and well funded through its major institutional members. The lobby was made up of the major medical interests of the province and included: the Ontario Medical Association (OMA), the College of Physicians and Surgeons, the Ontario Hospital Association, the Registered Nurses of Ontario, the Ontario Friends of Schizophrenics, and the Alzheimer Association of Ontario. These groups formed a coalition during the summer of 1991, after the first and second reading of the advocacy legislation. According to Barb LeBlanc of the OMA, "what we realized is that we did share a number of common concerns [and so] we organized around a very few basic points."5 Those basic points related to all three pieces of legislation because of the perceived bias against families and health care service providers. Key concerns of the Ad Hoc Coalition were: • to gain increased representation of families on the Advocacy Commission and on the Appointments Advisory Committee; • to change the sections of the Consent to Treatment bill that related to provision of emergency services to incapable people; • to amend sections of the Substitute Decisions bill, particulary those aspects dealing with the nature of powers of attorney and guardianship. These basic points that motivated the Ad Hoc Coalition also functioned as their explicit mandate. That is, their overall goal was practical: how to make the legislation more responsive to health care providers and families of people with psychiatric disabilities. At the centre of the Ad Hoc Coalition was the OMA. It provided staff support, and Barb LeBlanc was the principal spokesperson for the Coalition during the Standing Committee consultation process. LeBlanc was also responsible for coordinating the lobbying activities for the OMA and the Ad Hoc Coalition during the 1991-92 period. The Ontario Friends of Schizophrenics and the Alzheimer Association of Ontario were two other key member groups that represented concerns related to the involvement of family members in this policy arena. The involvement of these "family" groups in LeBlanc's view, also altered the dynamic of the Ad Hoc Coalition's meetings: "Their interests were much more family oriented, much more oriented towards a system that works for their ill family members rather than how we can make the system go in practical terms."b The key organizational elements of the Ad Hoc Coalition included a consistent and selective focus on objectives, clear leadership and authority, consistent funding, and the ability to resist being drawn into contentious issues between member groups.

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A Seat at the Table

FINDING A VOICE

In many ways the process for developing advocacy, consent, and decision-making legislation signified new gains for persons with disabilities in Ontario. At the governmental level, the structure of the Fram Advisory Committee itself was unique since it represented the first time that disability advocacy groups were officially involved in policy making on that issue and at that level of political influence.7 A unique feature of the O'Sullivan Commission was the ongoing involvement of a consumer-advocate - Patrick Worth of People First Ontario. The personal bond that grew between Father O'Sullivan and Worth deeply influenced the urgency and scope of the recommendations brought forward for advocacy services. And the most significant aspect of the Lightman Commission, from the perspective of this case study, was that three out of its seven public consultation meetings were organized and conducted by people with disabilities themselves. Of course, intense lobbying activities both by groups supporting the legislation and those opposed to it occurred in regard to all aspects of the legislation, but none was as significant for defining the nature of advocacy services in Ontario as was the debate around the structure of the Advocacy Commission. The central players in this conflict were consumers (or disability advocates) and medically oriented interest groups, such as the Ontario Medical Association and the Ontario Friends of Schizophrenics. The lobbying efforts of Concerned Friends and the Ontario Advocacy Coalition through ARCH, one of its dominant member groups, put pressure on the new government to follow through on its assurances and election promises to create an advocacy system in Ontario. These groups lobbied government officials through direct consultations with the Minister of Citizenship and with MPP Gary Malkowski, a deaf activist and parliamentary assistant to the minister. In addition, ARCH and Concerned Friends lobbied senior government officials in the Office of Disability Issues and the Advocacy Project Team, the new government departments that had been assigned responsibility for developing the advocacy legislation. Two persons stand out among the dominant members of the Parliamentary Standing Committee: Gary Malkowski, the MPP responsible for coordinating the public consultations, and Steve Fram of the Ministry of the Attorney General, the senior government official acting as counsel and policy advisor to the Standing Committee. These two individuals had both been involved in the advocacy process, both at an official governmental level (Fram), and at a grassroots and political level (Malkowski).

99 The Ontario Advocacy Act

Notable among the disability rights groups making formal presentations to the Standing Committee during 1992 were: the Ontario Advocacy Coalition; the Ontario Association for Community Living (OACL), People First Ontario, Persons United for Self-Help (PUSH), and AIDS Action Now!, a lobby group for people living with AIDS and HIV disease. During the two rounds of public consultation, these groups presented formal submissions to the Standing Committee. As the Hansard records reveal, these groups addressed the committee in three distinct ways: first, as members of the Ontario Advocacy Coalition; second, as representatives of a specific vulnerable population; and third, as individuals with disabilities or as family members of a person with a disability. The concerns of these disability rights groups can be organized into three key areas: the effect of the three bills on the lives of persons with disabilities; the process through which various aspects of the legislation were developed; the appropriate mechanisms for implementing the legislation. Interestingly, these concerns were the same as those of the Ad Hoc Coalition of Service Providers with respect to the legislation, but they were seen from diametrically opposite points of view. Generally, the latter group was opposed to a system of non-legal advocacy and to most of the provisions contained in the Substitute Decision Making and Consent to Treatment legislation. But as noted earlier, when the Ad Hoc Coalition perceived the government moving ahead with the legislation, it demanded more participation on the Advocacy Commission and the Appointments Advisory Committee, the device for selecting candidates for the commission. It was also unusual that legal representatives for the Ontario Advocacy Coalition assisted senior government officials in drafting sections of the Bills 74 and 108. This action was permitted by senior government officials as a way of accommodating the Advocacy Coalition's specific concerns about the legislation. However, the frustration surrounding the Cabinet amendments that were subsequently introduced led many advocacy groups to privately lobby Standing Committee members for additional changes. Gary Malkowski and Steve Fram were important focal points for the activities of all the groups because of their responsibilities on the Standing Committee during the public consultation process. One of the most important political events that forced changes to the Substitute Decision Making legislation was the demonstration held by People First Ontario at the Attorney General's Office in September 1992 to protest the guardianship provisions in the Substitute Decision Making bill. This event led directly to substantial changes in the legislation.

iToo A Seat at the Table

During the implementation stage, ARCH, one of the most active member groups of the Ontario Advocacy Coalition, obtained a seat on the committee for implementing Substitute Decision Making. This committee then consisted of over thirty other advocacy groups and interest groups that represented Ontario's medical establishment. In addition, ARCH was concerned with the regulations that were being developed around Consent to Treatment, and actively lobbied officials at the Ministry of Health not to abandon the original intent behind the legislation as they were being urged to do by the groups representing physicians and health practitioners. When the Advocacy Coalition and Concerned Friends discovered the Management Board's intentions to create the Advocacy Commission as a Schedule I agency, and thus subject to direct government control, they quickly organized a press conference and revealed the government's new plans. In fact, they planned to "pin an eviction notice" on Premier Rae's office door if the government went ahead with designating the commission as a Schedule I agency.8 According to Trish Spindell of Concerned Friends, the real catalyst for the formation of the Ontario Advocacy Coalition was the involvement of Ontario's disability rights groups in the Fram and O'Sullivan advisory committees. Their participation in the official government advisory bodies initiated the process of coalition-building between consumer groups and supportive social service agencies. Complicating the process of participation was the fact that the Advocacy Coalition had an ever-increasing number of associations and consumer groups (in 1990 it had twenty-three members and by 1994 it had forty-six). Spindell argues that the OAC never really expressed a single voice over a non-legal system of advocacy. She suggests four reasons for this failing: First, many member groups were shell organizations. "They weren't organizations that actually represented what I would consider to be a formed constituency, people who were really on top of the issues, who knew what was going on and who had a vision of what they wanted put forward."9 The second complication was that the membership of the Advocacy Coalition was constantly changing: "People would show up for one or two meetings and then you would never see them again." Third, the fact that the Advocacy Coalition included consumer groups, formal advocacy organizations (for example, the PPAO), and service delivery agencies in its membership meant that the Coalition "never came together as a real community of interest. There were always such significant conflicts that it never actually came together and took a unified position." These conflicts within the Advocacy Coalition were not merely differences of opinion over strategic matters. On the contrary, as Spindell puts it, "this

i oi

The Ontario Advocacy Act

group was shot through with philosophical disagreements" because there were no real criteria about who could join it. The fourth major issue, the question of whether the Advocacy Coalition should accept funding from the government, divided member groups significantly. Concerned Friends was firmly opposed to accepting money from the government, but ARCH believed the work of the Advocacy Coalition could be facilitated by tapping into available monies. In Spindell's view, this discrepancy created a two-tier system: some groups within the coalition received funds and some did not, yet all were important stakeholders in advocacy legislation. Moreover, accepting government funds, as Spindell put it, "sometimes drives a wedge between leaders of those groups and [their] constituency, where leaders are seen to be feathering their own nests." According to both Audrey Cole of the OACL and Spindell it is also possible to discern differing views about the dominant groups within the Advocacy Coalition, and who the key personalities driving the coalition's decision-making process were. Key member groups of the Advocacy Coalition during the 1991-95 period were ARCH, the PPAO, and AIDS Action Now!. Spindell's impression is that the [OAC] was "an ARCH-driven coalition." Cole describes the meetings of the coalition as a "battle between the Davids," that is, between David Baker of ARCH and David Giuffrida of PPAO. Cole adds that the vast majority of coalition member groups were vulnerable people who were neophytes in the whole arena of public policy and political lobbying and easily fell into line with either ARCH or PPAO representatives on a preferred advocacy system.10 David Kendall of AIDS Action Now! was also a powerful member of the Advocacy Coalition, although his organization did not join the coatlition until 1990-91, at least four years after it began lobbying for advocacy in Ontario. The source of this group's influence rested largely with Kendall because of his political sophistication and legal expertise over advocacy issues affecting people living with HIV and AIDS. However, there was some resentment generated by the late involvement of AIDS Action Now! in the advocacy process as well as a perception by groups representing people with psychiatric disabilities that yet another lawyer (also named David) was a dominant figure in strategic debates. The differences between AIDS Action Now! and psychiatric survivors within the Advocacy Coalition reflected a somewhat broader tension between more politically seasoned and legally trained advocates and disability consumer representatives. Not only was the Advocacy Coalition ARCH-driven but it was primarily dominated by professional lawyers trained in the adversarial method. Their dominance, according to Cole

102 A Seat at the Table

and Spindell, tended to silence the less articulate consumer representatives and suppress a full airing of alternative policy options for advocacy and substitute decision making. Although the Advocacy Coalition process operated formally by majority vote, many consumer groups felt stranded outside the real decision-making process, which reflected strength of expression of opinion. Spindell argues, moreover, that the decision-making structure of the coalition was too cumbersome when strategic political decisions were required in response to major changes of direction from the government. The monthly meetings of the Advocacy Coalition during the 1991-92 period were too infrequent to allow participants to reach a consistent and unified stand on emerging issues (e.g., whether the Advocacy Commission was to be an arm's-length government agency or a directly accountable one). Although other representatives of the Advocacy Coalition were generally perceived to be reasonable and well-informed representatives of their constituents' interests, when certain of them spoke out on selected aspects of Substitute Decision Making legislation, they inadvertently undermined the coalition course. For example, when Audrey Cole of OACL and Patrick Worth of People First argued before the Standing Committee that Substitute Decision Making legislation would violate the equality rights of persons with severe intellectual disabilities and should therefore be replaced by a new model of decision making called "supportive decision-making," otherwise positive politicians and government officials balked and dismissed their argument. This new model of supportive decision making involved using trained advocates to interpret a person's wishes, whether directly or indirectly expressed, rather than involving family members and friends who knew the person well. There were significant problems with the process through which the concept was introduced. First, the new idea was introduced at the eleventh hour when both the OACL and People First had previously supported traditional substitute decision-making principles. Second, the tone of OACL-People First representatives' remarks in committee was aggressive and amounted to telling the government that unless it accepted their model of supportive decision making it would be sanctioning a legislative framework that would unjustly discriminate against persons with severe disabilities. Since there seemed so little internal support from the rest of the Advocacy Coalition for these proposals and the politicians were clearly not convinced, the alternative platform tarnished the generally positive image of People First and the OACL and reflected negatively on the Advocacy Coalition itself. The comparatively narrow focus of the Ad Hoc Coalition, on the other hand, kept larger, more complex issues about the legislation and

103 The Ontario Advocacy Act its effects on member groups to a minimum. Their focus on smaller and more strategic points enabled member groups to participate effectively without risking the development of internal factions. As LeBlanc states, "We picked our issues because there were certain things that we never came to agreement on as an ad hoc group."11 The Ad Hoc Coalition encouraged members to speak out on their own on controversial issues that member groups felt strongly about, as representatives of their specific constituency. In LeBlanc's view, there was no status hierarchy among groups within the Ad Hoc Coalition. The socalled family groups (the Ontario Friends of Schizophrenics and the Alzheimer Society) "participated fully at meetings ... and in terms of input, [there] was equal footing." Despite being well funded and well organized, the Ad Hoc Coalition initially received a hostile response from the NDP government in 1991. According to LeBlanc, the protests from the Ad Hoc Coalition with respect to the provisions for emergency treatment in the Consent to Treatment Bill were greeted with accusations of scare-mongering. This interpretation led to the government view, subsequently modified substantially, that the Ad Hoc Coalition in general, and the OMA in particular, were fundamentally opposed to the legislation and would obstruct attempts to develop and implement the legislative package. But when the government began to appreciate the concerns of physicians over aspects of practical implementation of Consent to Treatment legislation, the negative perception of the medical lobby softened. As LeBlanc puts it, "once we were able to use actual case scenarios ... [in describing the likely consequences of the Consent to Treatment Bill] there became some political interest and that is when we started to be invited to the occasional [bargaining] table." POLICY OUTCOMES

The entire process of refining the implementation of the Advocacy, Substitute Decision Making, and Consent to Treatment legislation, came to a halt soon after the election of Ontario's Conservative Party under Mike Harris. In the fall of 1995, the Harris government introduced Bill 19, An Act to Repeal the Advocacy Act, 1992, Revise the Consent to Treatment Act, 1992, and Amend the Substitute Decisions Act, 1992. This action followed an explicit election promise by the Conservatives to dismantle the Advocacy Commission and review all aspects of the new legislative package. Unlike the former government, which had engaged in many forms of consultation with disability rights groups and the health care community, the Conservatives conducted only brief public hearings on Bill 19 and conducted no formal discussions

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with advocacy groups about the consequences of repealing the Advocacy Act. Moreover, despite protests from the disability rights community that jettisoning advocacy legislation while maintaining the central aspects of substitute decision making and consent to treatment legislation would result in people with disabilities' losing the right to make vital decisions affecting their lives, the government passed the bill into law. The new consent to treatment legislation was amended and renamed the Health Care Consent Act, 1996, and the substitute decisions act is now simply a set of amendments to Ontario's Mental Health Act. Despite the reversals, it is nonetheless instructive to examine the subjective and objective outcomes of the lobbying activities conducted by the key stakeholders in these policy-making processes. One difficulty in characterizing the outcomes of the lobbying initiatives of both the Ontario Advocacy Coalition (including the OACL and People First) and the Ad Hoc Coalition of Service Providers relates to the multitude of perceptions held by different stakeholders. Despite repeated complaints by all parties about the content of the legislation, the objective outcomes were clear: the creation of advocacy legislation for vulnerable adults living in Ontario; substantial changes to Ontario's mental health law with the addition of substitute decision making and consent to treatment legislation; the active participation of health care providers, disability advocates, and families on the Advocacy Commission and its advisory bodies; and the revival of policy objectives related to protecting the rights of Ontario's vulnerable population. More specific objective outcomes can be grouped around particular legislation and relate to the participation of persons with disabilities in key aspects of civil society. The first amendment to the Advocacy Act that can be linked with specific stakeholder activity concerned a strengthened role in the advocacy process for families and caregivers rather than for persons with disabilities or their advocates. This was achieved through the Ad Hoc Coalition's increased representation on advisory committees to the Advocacy Commission. A second amendment, attributable to the lobbying activities of the Ontario Advocacy Coalition, gave advocates the authority to provide some services to safeguard the health and safety of vulnerable persons if they could not provide instructions to advocates about their situation. The final bill contained a whole new category of duties entitled "The Responsibilities of Advocates" (sections 17-19). The new sections essentially clarified the scope of activity for advocates and recognized the possibility of non-instructed advocacy (section 17, subsection 3), that is, making decisions based on the advocate's best judgement of the interests of the person.

Advocacy Act 105 The Ontario Advocacy Act Third, People First Ontario and the OACL had section 15 of the Advocacy Act modified in response to the stigmatizing effects of labelling.12 In addition, members of the Ontario Advoacy Coalition such as David Baker (ARCH), David Giuffrida (PPAO), Audrey Cole (OACL), and Patrick Worth (People First Ontario) pushed for and achieved further amendments to ensure that advocates would not become substitute decision makers for vulnerable people.13 Without a doubt, the Substitute Decision Making Act engendered the most controversy and sustained the most persistent attack from all quarters. Indeed, various misunderstandings of the act caused many senior citizens to suppose that without some pre-validated power of attorney,14 their assets would immediately become the property of the state if they became seriously incapacitated.15 Nonetheless, the amendments that had been proposed in May 1992 reflected a serious attempt to accommodate many concerns raised by advocacy groups. The first major amendment occurred in the sections on powers of attorney for personal care (sections 46-54). Specifically, the Attorney General amended the act to allow people to make powers of attorney for personal care based on knowledge of persons whom they trust (section 46). The second significant amendment to bill 108 related to additional provisions for partial guardianship (section 60). Partial guardianship referred to the notion that persons may be deemed to be capable of making important decisions for themselves in some areas of life, for example, in contexts relating to personal care, but be considered incapable in other areas, for instance, in circumstances involving financial matters. Partial guardianship allowed for persons to authorize someone to make decisions for them in just those areas they believe themselves incapable. With respect to subjective outcomes, or the various and oftenconflicting interpretations and perceptions of the policy development process, both the Advocacy Coalition and the Ad Hoc Coalition believed that the other side had received the lion's share of concessions from the government. For example, the OACL believed that the intellectual disability rights community achieved virtually nothing from the legislation because the government failed to abandon substitute decision making and appoint anyone from the OACL to the Advocacy Commission. The Ad Hoc Coalition argued, on the other hand, that the government gave preferential treatment to consumer organizations and that was the reason Ad Hoc Coalition recommendations were not followed in changing the Consent to Treatment legislation. Other groups believed that the legislation that was brought forward, however imperfect, was at least something concrete upon which to

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structure new institutions for the protection of Ontario's vulnerable adults. These disability advocacy groups, in particular ARCH, recognized that compromise was inevitable, and so focused their energies on ensuring that the implementation procedures developed for translating the legislation into concrete policy were fair and representative of the interests of their constituencies. We can judge the subjective outcomes more systematically by examining some of the key objections raised by advocacy groups after amendments were announced to the legislation in May 1992. During the summer of 1992, the Advocacy Coalition and the Ad Hoc Coalition both quickly pointed out that the proposed changes to the legislation did not capture what they demanded. Again, according to MPP Gary Malkowski, advocacy groups on all sides assumed that the opposing groups received the majority of concessions. For example, the OMA and the Ad Hoc Coalition believed that they "lost" with respect to the changes they demanded to Bills 108 and 109, whereas the Advocacy Coalition believed the Ad Hoc Coalition had "won" and they had "lost" in terms of overall gains and losses. Malkowski argues that neither set of opposing groups received everything they wanted, but each made significant gains and had a strong influence on the legislative amendments that were put forward. Orville Endicott makes it clear that the government's concessions to the Ad Hoc Coalition to appoint service providers to the Advocacy Commission undermined whatever influence the Advocacy Coalition may have had in shaping the government's direction on advocacy legislation. Audrey Cole (OACL) confirms this view and suggests that the Ad Hoc Coalition received more overall recognition and had a greater influence over the resulting legislative amendments than groups representing persons with disabilities. The OACL, CACL and People First Ontario argued that the additions and clarifications to the Advocacy Act were insufficient to enable people with severe intellectual impairments to use advocacy services. "It is unacceptable that individuals with severe disabilities will qualify for nothing more from an advocate than assistance when their health and safety are at serious risk."16 On the other hand, the Ontario Friends of Schizophrenics of the Ad Hoc Coalition complained of being shut out of the amendment process because they were not consulted about the proposed changes to the Advocacy Act.17 With respect to substitute decision making, none of the powerful groups were satisfied with the amendments. The Ontario Friends of Schizophrenics thought that partial guardianship was too weak to enable families to make decisions on behalf of their family member. The OACL and People First Ontario rejected any form of guardianship as inherently unjust towards persons with severe disabilities.

thhhhhhhhhhhhht 107 The Ontario Advocacy Act In addition, the latter two groups objected to the new sections of substitute decision making relating to powers of attorney for personal care and the provisions for pre-validated powers of attorney. For the Ontario Friends of Schizophrenics, this provision meant further delays in treatment, since the requirements to be met under section 47(9) (the capacity to give powers of attorney) when combined with the conditions for the proper execution of pre-validated powers of attorney (section 49), made the legislation too complex and restricting. Thus, the amendments proposed in May 1992 did little to please advocacy groups for vulnerable people, despite their active involvement and consultation in this process. In summary, advocacy groups for persons with disabilities, as well as those for service providers, played a vital role in the legislative process surrounding Ontario's advocacy legislation. Many changes and amendments were the direct result of suggestions, arguments, and the actions taken by a variety of such groups. In addition to the larger changes mentioned, some smaller but symbolically important modifications to the legislation occurred as the direct consequence of intervention by advocacy groups. An interest group perspective appears to largely explain this participation. Although the efforts of these groups to modify the legislation occurred both prior to and after the actual public consultation phase, their participation and influence over the members of the Standing Committee contributed substantially to public recognition of their claims. In addition, this participation gave advocacy groups access to government officials that they might not otherwise have obtained. Regardless of the extent to which these groups remain unsatisfied with the degree of influence they.exerted over the legislative process, or the structure and process of the Advocacy Commission itself, it remains clear that advocacy groups played a crucial role in motivating and modifying the Advocacy Act and its companion legislation. This case study shows that disability advocacy organizations are capable of effective participation in Ontario's policy development processes. To the extent that the policy objectives of disability groups have public support, it appears that contentious policy and organizational issues can be effectively managed by strong leadership, and advocacy groups can overcome an experienced Opposition and government bureaucracy in achieving key policy goals. Of course, the particular form of citizen participation within the policy development process depends largely on the ruling political party's views on public consultation and the usefulness of involving organized interests within whatever consultation process is established.

t

AdultGuardianshipLeigislation

in British Columbia: Reform and Restructuring through Community Participation

Some members of society lack the competence necessary to manage their own affairs; others are very vulnerable to abuse or exploitation. In the past it was argued that all such people needed formal guardians to help them cope with daily living. In British Columbia, contemporary legislation providing legal guardianship was set out in two acts dating from the 19408 (Patients' Property Act, Power of Attorney Act). In 1982, however, the Charter of Rights and Freedoms, which recognized the rights of persons with disabilities, was appended to the patriated Constitution. With the new Charter it became clear that these two guardianship acts, particularly the former, were outdated and should be replaced. At the same time there were major changes in the way in which disability was viewed due to the International Year of Disabled Persons, 1981, and the passage of the revised Human Rights Act, 1983, both of which affected public attitudes to adult guardianship. In June 1993 the British Columbia government passed four interrelated pieces of legislation designed to protect the rights of its vulnerable adult population of persons with disabilities: the Representation Agreement Act, the Adult Guardianship Act, the Public Guardian and Trustee Act, and the Health Care (Consent) and Care Facility (Admission) Act. These acts represented the government's attempt to comprehensively modernize the legislative frameworks governing the lives of those with mental disabilities. The overall policy reform process was characterized not just by the need to modernize British Columbia's adult guardianship legislation through the recognition of the human rights of people with disabilities but also by the need to

log

Adult Guardianship Legislation in British Columbia

include individuals with disabilities in the policy reform process itself. This concern for inclusion in mechanisms of revising the legislation was partly the result of action taken by the British Columbia Association for Community Living (BCACL), a key advocacy group for people with intellectual disabilities.1 THE NEED TO UPDATE GUARDIANSHIP LAWS

The reform of adult guardianship statutes for British Columbia's vulnerable population was motivated primarily by the requirement to have laws that better reflected the current living conditions of such individuals. The Patients' Property Act had originally been developed to meet the needs of persons who were involuntarily committed to institutional care when they became mentally disordered in some way.2 But Canadian governments had begun to reduce the numbers of patients in institutions after the Second World War, beginning with those whose disorders could be controlled by drugs or social training and then moving on to find community solutions to the problems of persons with more profound disorders. Consequently, there were many people living in British Columbia communities who would earlier have been institutionalized. The Power of Attorney Act regulated the transfer of authority over another person's property. It gave individuals the means to allow a proxy decision-maker (for example, a family friend or lawyer) to make a range of decisions related to their property when they were unable to do so themselves. However, in the case of individuals with mental disabilities, the act allowed the transfer of authority to be requested by their family, friends, or mental health professionals, if it was judged that they could not make sound decisions affecting their property. The Power of Attorney Act was outdated because it was too rigid in some ways and too loose in others. It enabled some people to be exploited and did not provide adequate protection for those who had slipped into dementia. Although attempts had been made to correct this last inadequacy by introducing the concept of an "enduring power of attorney," the distinction between power of attorney and enduring power was not always understood by those who wished to provide for future needs. Under the existing laws, legal adult guardianship differed from assignment of powers to a chosen representative in that it was the transfer of power to another individual without consent of the vulnerable person. This transfer of power could be sought by family, friends, or other community members when a person ceased to function adequately in the community. The person concerned could be certified as "incapable" by a medical practitioner or the case could be taken to

no

A Seat at the Table

court for a judge to decide. (Since court cases are relatively expensive, the majority of decisions concerning incapacity in British Columbia have been made by doctors.) A family member or friend could be appointed as a "committee" to look after the affairs of the incapable person, or the Office of the Public Trustee could take over. As indicated by the emphasis on property in the acts, the committee was expected primarily to manage the person's estate. Less emphasis was put on personal care, although social work support could be sought if necessary. The terms "Patients' Property" and "Power of Attorney" emphasized the management of business affairs, not personal relationships. Committing a person to the care of a professional advisor (such as a bank manager) or the Public Trustee did not give enough attention to personal relationships to satisfy the disability community that human rights were being adequately addressed. Nor did these two acts offer adequate protection to those who might become incompetent for a period but return to full capability at a later date. It was recognized that the Patients' Property Act was outdated, but reforming the legislation did not appeal to the Social Credit government in power in Victoria from 1975 until igga. 3 No Social Credit minister was prepared to introduce legislative changes until Bud Smith became Attorney General. Previously, an NDP government had tried to set up Human Resource Boards (with community membership and authority) in British Columbia. The province seemed to be more open to ideas of citizen participation in policy making than many other provinces except perhaps Saskatchewan and Quebec. Because Al Etmanski, the Executive Director of BCACL, 4 recognized that an opportunity was opening up in the spring of 1989, he called together a group of people interested in reform of adult guardianship legislation to see whether they could push the government into making changes. The group was named the Project to Review Adult Guardianship (PRAG). The chronology of this case falls into two stages: policy development and implementation. Negotiating New Legislation A new Public Trustee, Myrna Hall, was appointed by the Attorney General in the summer of 1989, and an Inter-Ministry Committee representing the Ministries of Health, Social Services, Housing, and the Attorney General was set up in January 1990 to assist her with the process of guardianship reform.5 Meanwhile, PRAG had begun to meet regularly in 1989, calling itself the Guardianship Committee. The committee decided that it was imperative that there be changes in the

in

Adult Guardianship Legislation in British Columbia

legislation, but that before change could occur it would be necessary to consider the views of people whose lives would be affected by the legislation (PRAG, iggoa). Consequently, they sought funding and were able to persuade the Law Society and the Notary Foundation to provide financial backing for a community survey to determine whether there was general interest in the idea and ask what were the special concerns of respondents.6 PRAG developed its community survey in the fall of 1989 and sent it out to those who they thought were concerned about the matter. The response indicated that there was considerable interest and diversity of views in the community. There was agreement on the need for change but not on how changes would be implemented. On 4 October 1990 a formal agreement was reached between PRAG and the Inter-Ministry Committee to work together. The statement of principle said: "It is agreed that community input 7 is imperative and that all parties will work cooperatively to achieve [their] goal [of improving systems, policies, and legislation] within the mutually agreed upon time frame [i.e. by agreeing to the principles underlying guardianship legislation by June 1991 and drafting legislation by September 1991]" (PRAG and Government of British Columbia 1990). Two researchers were seconded from the Attorney General's Office to write a series of Trigger Papers (i.e., literature reviews, summary of options) to promote discussion among PRAG members (Office of the Public Trustee 1991). By fall 1990, PRAG decided to put out a philosophical statement, a mission statement, and terms of reference to guide its working processes because it was necessary to try to coordinate the activities of its three task groups on administration, research and education, issues and strategy (PRAG iggob). They decided on eight guiding principles.8 According to Rob Gordon of PRAG, it was during these group discussions that cracks began to appear in the process of working towards consensus and "the first firestorm over principles arose." Gordon said that there was a push from some individuals (particularly one member of BCACL) for minimal intervention. The minimalists wanted to set up circles of support - friends, families, neighbours - instead of formal procedures. This group felt that the proposed legislation was fundamentally disempowering and robbed people of their rights and freedoms. It was agreed, however, that abused persons needed protection of some kind. By late 1990 it was accepted that the major task for PRAG was to balance interests within itself. In the meantime, the more challenging presentations had led to a breakdown of barriers between participants in the discussion sessions. Nervous people began to talk to one

112 A Seat at the Table

another, not at the professional level as before, but sharing their experiences across disability groups. Rob Gordon said, "There was a crossfostering of dialogue - non-structured - and a development of a recognition of what were common problems and an understanding of one another's predicaments. This exchange generated cohesion. Thus, the minimalists' agenda had some success."9 Over the 1990 Christmas break, Gordon developed a chart of the processes that the discussion groups thought were needed when a vulnerable person seemed to need adult guardianship. This chart proposed several steps and options in an integrated decision-making and guardianship system.10 The chart seemed to act as a catalyst and led to the development of a draft position paper by PRAG staff. After restating the principles enunciated earlier, it went on to discuss: competency assessments, competency and civil rights, advocacy, future financial planning, protection of vulnerable adults, medical issues, due process, and certification. In May 1991 PRAG produced a complete draft report, known as the Framework Document, which developed the ideas that had been under discussion thus far. 11 This was a very rough draft but served to demonstrate that there was agreement in principle on guardianship issues (PRAG 1991). It also led to the next stage, which was for PRAG and the Inter-Ministry Committee to consult together on drafting legislation. In summer 1991, PRAG and the Inter-Ministry Committee agreed to set up a Joint Working Committee to implement these ideas in policies and legislation. The committee was composed of three government representatives and three PRAG representatives, plus two secretaries.12 PRAG and the government-appointed members of the committee began to work closely together to redefine the content area and to decide on the process of reform. Members of the Joint Committee visited different centres in the Lower Mainland, Victoria, and the rest of the province during May and June 1991 using a traditional publicconsultation process model. Several members of the committee have said how their close working relationship seemed to lead to greater trust on both sides and solid steady progress. By May 1992 they produced a discussion paper: "How Can We Help?: A New Look at Self-determination, Interdependence, Substitute Decision Making and Guardianship in British Columbia" (B.C. Inter-Ministry Committee and PRAG 1992). They invited public and government discussion of the ideas (which were built on PRAG'S framework document), reviewed the comments that were sent in, and made minor revisions to the paper in September 1992. By the time the revised version of "How Can We Help?" was released, both sides said they were ready to move on to drafting the new

113 Adult Guardianship Legislation in British Columbia

legislation. A drafting team of four persons was appointed, consisting of Myrna Hall, Gerrit Clements, Rob Gordon, and Claire Riley (Senior Legislative Counsel, Attorney General's Office). They were obliged to work secretly because that was government policy about drafting legislation, although Gordon was able to consult with PRAG members on key areas of concern and the wording of key provisions, which he did on many occasions. The attitudes of committee members soon began to change on specific implementation details, however, and by the end of 1992 the good will period of working together was over. Nonetheless, despite the differences between some BCACL and PRAG members, the drafting team moved ahead with its task. It worked extremely hard in order that four bills could be brought before the House in the Spring Session of 1993. These were the Representation Agreement Act; the Health Care (Consent) and Care Facility (Admission) Act; the Adult Guardianship Act (which included provisions to deal with reports of Abuse, Neglect, and Self-Neglect); and the Public Guardian and Trustee Act. There was an expectation that the legislation would be phased in over the next two to three years. At the end of the drafting process, Cabinet reviewed the bills four times and referred them back to PRAG for comment. PRAG set up a committee of twenty members to review the drafts and suggested a number of amendments, which were negotiated at the last minute by Al Etmanski and Wendy Baker QC (both advocates for BCACL working within the PRAG framework) with the Attorney General. The PRAG committee also raised the question of relationships between the Adult Guardianship legislation and the stalled Mental Health legislation. The government then appeared to retreat in the face of potential public controversy. For four days it looked as if the entire guardianship initiative was finished, but the government representatives made a number of compromises that were accepted by the two negotiators from PRAG. The legislation went through with some of the suggested amendments in June 1993 (see Appendix to this chapter in Notes). Grassroots Policy Implementation

Following passage of the legislation, there was a pause before calling a two-day conference in September 1993 that was facilitated by a consultant in adult learning and ethical decision making. The consultant was hired by the government to plan discussions dealing with issues of interagency cooperation, as the interested parties moved into the implementation stage. The conference facilitator was given a list of 175-180 community representatives who should be invited, while the government

114 A Seat at the Table nominated 80 representatives. Although it was promoted as a joint community-government initiative, community and government representatives met separately on the first day and came together only on the second day. Many participants regarded this conference as a disaster since it was run on a radically different model of working together and interrupted the previously successful process of joint working sessions. Some members of PRAG who attended the conference expressed hostility to professionals and bureaucrats who were no longer viewed as the welcome allies that they had been before the legislation was passed.13 On a more substantive level, the community representatives' emphasis in earlier discussions had been to avoid use of the last resort (i.e., commitment to the Public Trustee's services), whenever possible.14 The Public Trustee's Office was to be the necessary fall-back option only in the following circumstances: when there were no caring relatives; when estates were too small for lawyers or banks to take on; when the person concerned expressed a preference for this model; in emergencies; in family conflicts; or for investigating and policing dubious situations. Rob Gordon and Alan Verdun-Jones, the leaders of the PRAG reform process, wanted consumer-driven implementation of the legislation.15 They thought that there was need for further community development to engage the consumers in self-advocacy and, where possible, self-directed guardianship. PRAG had recommended in the spring of 1993 that there should be "a community coordinating office, separate from government and with assured funding" (PRAG ig93a). The government was now asked to wait until the community of interest was ready to become involved in the implementation phase, and the community of interest was said to be not yet ready to do so because this community had yet to be developed. Only certain subgroups of the disability community that were strongly entrenched in their local communities and interested in the legislation were at that point able to speak out for their members. PRAG thought that more local groups of potential users could also be developed if given the time. The Public Trustee Office had intended, however, to follow the usual pattern of legislative implementation after acts are passed, namely to set up a steering committee to move things along. But the September conference had shown the Public Trustee that PRAG'S members were not willing to follow the usual pattern. They were determined to take the idea of community participation further than ever before. Instead of cooperating with the Office of the Public Trustee (OPT), PRAG made it clear that it was going to follow through on its own concept of consumer-driven implementation and would not accept the traditional approach. The fact that this new approach to

115 Adult Guardianship Legislation in British Columbia

implementation was also strongly supported personally by the Attorney General, made things difficult for the OPT bureaucrats, and they were unable to get a steering committee off the ground. PRAG was also having its own internal difficulties in maintaining a united front and remained in place until 31 December 1993 when it disbanded. Certain members remained interested in the reconstruction of a consumer guardianship group, however. A transitional group presented a report on its proposed activities to 145 people who included persons on the former Transition Committee, the Partnership and Structure Subcommittees, the Representation Agreements Task Group, and the Advocacy Task Group. Following a motion of support, the first formal meeting of the new Coalition to Implement Adult Guardianship Legislation (the Coalition) was held in January 1994.l6 Thus, although the influence of BCACL and PRAG decreased after the passing of the Adult Guardianship legislation, a new advocacy organization emerged to press for community-based alternatives to formal guardianship structures and to ensure active consumer participation in the proposed system of rights protection for British Columbia's vulnerable population.17 The new coalition re-examined PRAG'S final goal statement (PRAG 1994) and said it now wanted "to create a range of supports and assistance for adults who are vulnerable so that every opportunity to use private, informal, family and community-based options for supported decision-making is exercised ... Only the community can do the work of building this range of support and assistance ... Government has no mandate or ability to provide this support. It is in a potential conflict of interest in providing support and assistance of the first resort, because it must be a guardian of the last resort." The Coalition saw the government's principal role in guardianship as administrative - monitoring institutions, establishing administration support systems, educating government front-line workers about the demands of the legislation, and developing court processes. The Coalition, now led by Christine Gordon, a community development activist, went directly to the politicians for funding support, addressing its demands to Colin Gabelmann, the new Attorney General, and bypassing the Public Trustee. The Coalition proposed working directly with the Deputy Ministers' Committee, or Inter-Ministry Committee, rather than with the Joint Working sub-committee. The Coalition's rationale was that: "Only the community can do the work of building a continuum of support and assistance because with the new adult guardianship legislation, the Courts will insist that all efforts be made to provide support and assistance to adults who are vulnerable, before substitute decision making is imposed" (Coalition i994a). l8

116 A Seat at the Table Meanwhile, the Public Trustee had to reconsider what steps to take in the light of the Coalition's actions. A number of task forces were appointed. These included members from the OPT and the Coalition, although some task forces excluded OPT representatives altogether. The Coalition took over the total responsibility for discussion of Representation Agreements and Advocacy, while there were joint task forces on Defining Capability; Abuse and Neglect; Health Care Consent and Care Facility Admission; and the Court Ordered Decision Making Planning Group. The Coalition took issues regarding Advocacy, Representation Agreements, and Abuse and Neglect to communities all over the province for discussion. The other task force groups worked on the problems in Vancouver. In July 1994, Myrna Hall, the Public Trustee, resigned citing personal reasons. Subsequently, the rest of the senior staff members of the Office of the Public Trustee who had been involved with the adult guardianship legislation also handed in their resignations.19 After a six-month gap, a new Public Trustee, Dot Ewen, was appointed, and the Coalition was consulted in the making of this appointment.20 In the interval between the appointment of a new Public Trustee, the OPT and the Coalition agreed that they would develop three strategies for the working groups: to express any findings in plain language; to hire two writers, one from the community and one from government to develop policy documents; to involve the community in tackling abuse and neglect. The Coalition continued to press its case and in the fall of 1994 reported on the work of its task forces to its members. Task forces met in Prince George, Kamloops, White Rock, Vancouver North Shore, Powell River, Victoria, and other centres using participatory action research methods. The Coalition claimed to have facilitated thirty-five workshops involving more than 600 people over a ten-month period.21 In 1995, following through on the idea of prescribed advocacy, the Coalition employed a consultant to investigate the prospects for grassroots participation, rather than using a professional legal cadre to provide this service. The alternative proposal by the Coalition was to provide an organization consisting primarily of selected and trained volunteer community members who would provide counseling on human rights and on issues perceived to be broader than legal issues. It proposed that access to help should be made available through a telephone number to a central office that would call on a local advocate within 24 hours. The Coalition argued that this alternative would provide more holistic care through better local knowledge, going beyond lawyers' privileged information, while maintaining client confidentiality and focusing on social as well as legal matters. The concept was

117 Adult Guardianship Legislation in British Columbia

supported by BCACL, the Alzheimer Association of British Columbia, and the British Columbia Coalition of Persons with Disabilities. Ewen, the new Public Trustee, was determined to see that the acts were implemented as soon as possible, and a new OPT staff position was created to further this goal. Lynda Derkach, who had worked at the Port Alberni branch of the BCACL and had a daughter with a mental disability, was selected for the post of guardianship implementer in April 1995. She then took steps to set up task forces to include a much wider range of interests than those of consumers alone. An overall Implementation Steering Committee, chaired by the Public Trustee herself, had twelve members, of whom four were bureaucrats, one a facility administrator, one a financial expert, one a lawyer, and five representatives of consumers. By November 1995 five community response networks had been set up to work on abuse and neglect issues. Finally, the OPT appointed two consultants (Rob Gordon and Stan Remple) in 1995 to assist in developing its plans for implementation. These consultants consolidated the OPT influence in the implementation process by writing the regulations in support of the legislation, developing a coordinated implementation plan, and setting up an accountability framework. THE

KEY PLAYERS

The specific disability advocacy communities in British Columbia that became interested in adult guardianship legislative reform included provincial organizations of persons with intellectual, physical, and psychiatric disabilities, as well as the elderly and people suffering from degenerative diseases such as AIDS. But it was the British Columbia Association for Community Living (BCACL), the major provincial organization for people with intellectual disabilities, that spearheaded the adult guardianship reform process within the disability rights community. BCACL had taken the lead first in developing PRAG and then eventually in developing the Coalition. The involvement of BCACL with provincial policy reform for people with intellectual disabilities was not a new initiative. On the contrary, this advocacy organization had been lobbying the government since the mid-i 9608 for greater accommodation and participation of people with intellectual disabilities in mainstream institutions. Yet, with respect to adult guardianship reform, it became apparent to the leader of the BCACL that a broader coalition of groups representing the whole range of vulnerable people would be more effective in forcing the government into action.

n8 A Seat at the Table In the late 19805, another key accomplishment by BCACL in relation to adult guardianship policy was to establish a network of elderly parents of people with intellectual disabilities (Planned Lifetime Advocacy Network - PLAN) to create and deliver personal support services to their children. The motivation was to create community-based service options for people with intellectual disabilities so that state bureaucracies would not become de facto decision makers for them and thereby increase their vulnerability. In 1989, when the British Columbia government appointed a new public trustee and informed the citizens of the province that it was interested in reforming adult guardianship legislation, BCACL and PLAN were poised to assume leadership roles in this policy area through the PRAG vehicle. The PRAG Guardianship Committee brought together a small number of people with a particular interest in the matter. They included Jim Pozer, Executive Director of the Community Legal Assistance Society; Rob Gordon, a professor in criminology; Pearl Mackenzie, a representative from the North Shore Seniors Association who was specially concerned with elder abuse and neglect; and others from voluntary organizations who had been working with vulnerable people. Marguerite Ford, Executive Director of the Alzheimer Association, expressed support but was already appointed to a concurrent provincial inquiry into health services and had to give that priority. Don McDougall, a law professor who had been giving a course on the Law and Aging, also gave it his support. One of his researchers, Barbara Lindsay, became the first employee of PRAG in the fall of 1989. The Law Society and the Notary Foundation provided funding to permit PRAG'S work to proceed. The Community Legal Assistance Society offered office space and BCACL agreed to administer the funds. Another staff member of the Society, Chloe Lapp, a project director with previous experience in managing voluntary services, was appointed coordinator of PRAG in May 1990. PRAG was developed without any formal structure, but there was an ad hoc committee of seven and a core group of about twenty people. It started as an almost completely Vancouver-centred group, but interest in PRAG and the guardianship issue gradually spread out across the province. As the attendance fluctuated at every meeting, it was quite difficult to work steadily towards consensus. Similarly, the lack of structure made it difficult for the chairpersons of the three discussion groups on administration, research and education, and issues and strategy to know how to focus their discussions. The composition of the Coalition, which eventually took over the responsibility for developing an implementation policy, was different in many respects from that of PRAG. PRAG had claimed to be an

119 Adult Guardianship Legislation in British Columbia

unstructured group of individuals working towards consensus, and most members had been professionals or managers of voluntary agencies. Now that the Coalition asserted that it was past the legislative development phase, new members with other useful connections (e.g., Margaret Birrell, Executive Director of the British Columbia Coalition of People with Disabilities; Don Beddows, Treasurer of the Council of Senior Citizens' Organizations [cosco]; Patricia Fulton representing the Seniors' Resources and Research Centre of British Columbia) began to work with the Coalition. Later, Christine Gordon said: "Our community coalition includes all of the individuals who may be subject to guardianship legislation, their supporters, and any other individuals or organizations who endorse the guiding principles and purposes of the coalition ... The community office will organize and coordinate a cross-sectoral, cross-disability provisional coalition of individuals, groups, and organizations in order to achieve the community mission during the implementation of adult guardianship legislation, to ensure representation of minority members in policy making that evolves from the community mission" (Gordon 1994). The rules about membership in the new Coalition were set out as follows: • membership was for groups only (including charities, not-for-profit organizations and support groups, or groups of individuals who came together for a stated purpose); • member organizations must endorse the mission statement and principles of the Coalition; • more than one representative of a group can attend meetings but each organization will have only one voting member; • consensus decision making is preferred; • there will be a minimum percentage of primary consumers on the steering committee and regional representation will be sought. The Coalition established a small group to consider how they should make a partnership with government. They questioned whether it was "automatically good to sit down as community members at policy committees or advisory committees with government" (Coalition 1994^).22 REDEFINING PARTNERSHIPS AND OBJECTIVES

PRAG had initially decided that the best method of citizen involvement would be to sponsor the widest possible discussion group process among

120 A Seat at the Table any individuals who might be interested in the topic. Meetings were held almost every evening in the Community Legal Assistance Society premises in Vancouver. Up to twenty people might attend one meeting but the attendance fluctuated. It was said that 3,000 individuals from 350 organizations attended at one time or another (Doherty igg3). 23 During the first stage in the process of revising the Adult Guardianship legislation, the main concern of those with mental illness was the concurrent proposal to revise the Mental Health Act (in light of the change in Human Rights legislation). A committee set up to study the matter could not reach agreement on compulsory treatment versus choice for persons with mental illness, and eventually the Mental Health committee was disbanded and the reforms were abandoned. The divisions in the Guardianship Committee had grown greater as discussions went on. Psychiatrists and family members wanted to ensure treatment of persons with mental illnesses. "Psychiatric survivors" claimed that professional control of treatment was in breach of a person's human rights. "Libertarians" wanted to allow patients to choose whether or not to accept treatment even when they were compulsorily committed to a mental hospital. These divisions over the Mental Health Act Review took up most of the energy of the mental health advocates. In the early stages of the Adult Guardianship reform process, few seniors came to the discussions on legislative change, but in 1995 they began to take more interest. One reason for the early lack of interest in guardianship might be that seniors' groups were in competition with one another for money to carry on their activities.*4 This money was not available in lavish amounts so seniors' leaders got caught up in thinking about small financial matters relating to the survival of their associations rather than looking at the broader picture of seniors' needs. Another view is that seniors did not wish to look at the prospects of becoming demented or to think about the possibilities of abuse and neglect by their families when they became frail with age. Finally, the Alzheimer Association, which perhaps might have been expected to act as an advocate for the elderly, underwent a change of management soon after the proposals for reform were introduced and handed over the responsibility for guardianship issues to a volunteer. At the end of 1992, the contracts of the first two PRAG employees ran out and the core group decided that they should not be renewed. The core group decided instead to appoint Christine Gordon, who was experienced in community development, as a staff member. It was anticipated that she could take the organization forward into the implementation stage when the legislation was passed in the summer of 1993. However, soon after Christine Gordon was appointed, PRAG began to change its objectives.

121 Adult Guardianship Legislation in British Columbia During the drafting period (January-June 1993), PRAG had received reports from five of its policy groups on: personal support networks; abuse, neglect and self-neglect; capacity and needs review; health care consent; and the role of the Office of the Public Guardian and Trustee. These reports formed the basis for the document "Proposals for Implementation" (PRAG 1993).25 As well as making proposals on the development of content areas, this document, significantly, dealt also with process. The report said that the PRAG volunteers who had worked on the project until then had been pushed to their limit, and that new representatives would have to be recruited from outside the core group: "Some of the policy group representatives have expressed frustration with the structure within which they have had to work. People who are used to working in community contexts are oriented to action. The conceptual and analytical nature of the policy groups has not enabled them to work from their strengths ... The policy groups will be putting forward recommendations for implementation that involve some degree of testing of the ideas that have been developed". The document went on to say that the PRAG Guardianship Committee wanted to reassert its independence of the Office of the Public Guardian and Trustee: "It might be wise to consider some alternatives to [setting up a] Steering Committee as a vehicle for coordinating the field testing of the services that would largely be a community responsibility" (PRAG 1993). Proposals were put forward for selecting communities to test out the new legislation using strong community development principles.26 There is no doubt that there were ideological differences within PRAG, but strong personalities also seem to have been involved in pushing ideas forward. Al Etmanski, the head of BCACL, has published his reflections on this period. He writes that it was agreed that "it was far better for the community to develop consensus on the potentially divisive issues than to let the government attempt to do it, [and] it was clear that change could only occur within a broad based coalition. No individual organization or sector had sufficient strength to lobby for government change on its own" (Etmanski 1992). There are a number of unanswered questions regarding the changes in PRAG and its objectives. Al Etmanski was definitely at the centre of the shift. Was the new uneasiness within PRAG related to a redefinition of his relationships with other BCACL members? Was there a change in relationship between him and Rob Gordon? It is clear that Etmanski thought that Gordon should not have joined the government team as a paid drafter of legislation. In a subsequent publication Etmanski (1994) wrote:

122 A Seat at the Table It was disappointing but perhaps inevitable that the amicable relationship that had characterized the first stage of our relationship with government staff did not last. Budget, policy, philosophy and even personal considerations seemed to bear no resemblance to the community's recommendations. Disagreements over interpretation occurred often, tempers flared. Patience often left the room. We were informed that government lawyers disagreed with this recommendation, that budget considerations prevented that one from going through, that this point was not practical, that point or the other one too simple. Sometimes we were accused of being too demanding or motivated by personal considerations ... Most of our difficulties were dealt with honestly and in a straightforward manner. In retrospect, however, those issues infected the health of our coalition. One of our most talented and able members was recruited by government and paid to work on related matters while at the same time retaining membership in the Coalition [i.e., Rob Gordon in his drafting role]. I am personally convinced that this posed a serious and unjustifiable contradiction. As well, the views of consumers of mental health services often conflicted with those of family members. Consequently, there was no consensus on some key mental health issues. Unfortunately not all members of the Coalition respected the open process we had established ... [some] phoned or wrote to the Minister to oppose the Coalition (Etmanski 1992, 11).

By 1994 many of those who had been involved in the PRAG discussions felt that they had done their bit. It was nearly four years since the process of working towards reform had started, and some were very tired. The more active members had chaired task force groups or served on the Joint Working Committee. Many had put in a lot of time attending the first stage discussions in which there had been an initial search for consensus building. In reviewing these outcomes, one interviewee said, "Myrna [Hall, Public Trustee] was squeezed and her expectations violated. There were proposals from the floor to redefine partnerships of community and government." The earlier cooperation and trust had vanished. Both parties involved with the legislative agreements now had to step back and rethink their positions. FROM C O L L A B O R A T I O N TO CONTROL

The first stage of Adult Guardianship reform in British Columbia was a joint effort of all interested individuals to create change. Professional caregivers, bureaucrats, and a few consumer representatives worked together to amend the legislation. The objective outcome of the first stage of policy making was the passing of the four acts. Then, the legis-

123 Adult Guardianship Legislation in British Columbia

lation having been passed, there was a transition during which the consumers' advocates demanded that they should make the arrangements for policy implementation. Many of the professionals and bureaucrats who had been active in the first stage dropped out or were eased out, and a new set of leaders emerged to take over in the more subjective second stage. By the time the legislation was passed, Al Etmanski and Christine Gordon were ready to take forward the issue of implementation of legislation as a challenge to the bureaucrats and professionals. To what extent was citizen participation to be possible in British Columbia? They recruited new supporters from other community organizations to make their case for citizen participation in drafting the guidelines on implementation and appeared to push the concerned caregivers to one side. They began to educate families and communities on the necessity for forward planning to support those persons at risk. It is clear that the Coalition won its battle and established the concept of consumer-driven (or perhaps advocate-driven) adult guardianship services. The Coalition went beyond making claims for individual human rights and sought powers of policy implementation driven by consumers. It took the discussion out to non-institutional groups in the community and fed information back into power structures, either bypassing structures that were not helpful or forcing them to recognize the pressures for change. It is interesting to see the extent to which the idea of citizen participation was taken in British Columbia. The Coalition's thrust at the implementation stage was to develop "circles of friends," to provide support to those in need, and to exclude, or at least limit, the extent to which bureaucrats and professionals would be able to intervene in family and community affairs. The contrast with a similar coalition working on advocacy in Ontario is striking and ultimately reflects the influence of senior bureaucrats and ministers in allowing consumer initiatives.27

8 Themes in Disability Policy Participation

The preceding four cases provide rich descriptions of the policymaking process from the perspectives of representatives of Canadian disability organizations. Each case makes certain points and offers certain lessons about the changing political environment and the often tenuous relationship between disability organizations and state actors. However, the experiences of these cases, which describe negotiations on issues of importance to persons with disabilities at different times, in different places, and with different actors, suggest that they contain common elements that invite examination and analysis. Our approach has been to look at the participation of disability organizations from a structural perspective. This approach identifies the political-legal-economic, social-cultural, and organizational dimensions that affect the process of citizen participation. Although the personal and interactional perspectives of individuals are also important in understanding how participation develops, we believe that at least some of the structural dimensions of participation - particularly the organizational aspects that might be modified independently by disability organizations - are key in the policy environment. The purpose of this chapter is to compare the cases we have described in order to distil and better understand the potential for strong citizen participation in disability policy making. Elements of social movement theory, such as autonomy, culture, and resource mobilization are useful tools in this comparison. A study of the participation of poor women, street youth, and persons with disabilities in health promotion advocacy projects in Ontario

125 Themes in Disability Policy Participation

(Boyce 1997) has identified a number of structural factors that affect the process of citizen participation either positively or negatively. This study found that citizen participation can be fundamentally influenced by factors at the organizational level such as agency reputations and responsibilities, available financial and coalition-based resources, and organizational roles. These themes were also common to our cases, and we use them in this study to analyse the experience of Canadian disability organizations in policy participation. REPUTATIONS AND RESPONSIBILITIES OF DISABILITY ORGANIZATIONS

The ideological, or philosophical, positions of community organizations can give them a "moral reputation" that both attracts participants and allows them access to the policy table. For example, organizations that develop reputations as proponents of disability rights may be able to mobilize significant consumer interest on the basis of this position. Organizations that have an advocacy responsibility in contrast to a service responsibility (more often seen as a governmental concern) are often considered by bureaucrats to have a certain legitimacy for participation in the policy process. Let us look more carefully at these ideological elements. Attitudes towards the Participation of People with Disabilities

An important measure of the disability organizations in these cases is their perspective on the participation of people with disabilities. What are their attitudes to the participation of people with disabilities both in the organization itself and in society as a whole? We suggest that views about the participation of people with disabilities in community organizations reflect broader views about their participation in society. Some groups, such as People First, for example, view people with disabilities as consumers and strive for majority representation by people with disabilities in all aspects of their operation. Other groups view people with disabilities as clients; such groups speak on behalf of, and in support of, people with disabilities. Examples of groups of this type are organizations made up of family members, such as the Ontario Friends of Schizophrenics or the Alzheimer Association of Ontario, or those made up of professionals, such as the Canadian Rehabilitation Council for the Disabled (CRCD). The main factor underlying their differences in perspective is the extent to which members of such groups consider people with disabilities to be self-determining. According to one activist, the CNIB and the CHS (Canadian Hearing

126 A Seat at the Table

Society) are examples of the two ends of this spectrum: "Look at the CNIB and their model, and the CHS and their model, because they have very different philosophies. The CHS philosophy is empowerment of clients, giving information, training for advocacy, getting involved in the political approach. [The] CNIB is quite different... it's more about making decisions for people."1 Thus, in spite of the leeway given to individual agents of the CNIB, exemplified by the empowerment of David Lepofsky during the patriation of the Constitution, the CNIB did not actively promote broad client involvement in policy making. On the other hand, self-determination is the cornerstone of the Independent Living Movement's view of people with disabilities. As one representative asserted: "We like taking care of ourselves, with authority, decision-making, and risk-taking. We'll let you know when we need you." This approach obviously has the potential to alienate some potential able-bodied supporters: "That notion was a big challenge, and it upset people who were very genuine. To this day, it still troubles many excellent, dedicated caregivers who feel that they should be responsible [for people with disabilities]." Other principles of the Independent Living philosophy that signal their view that people with disabilities should be self-determining include the promotion of selfhelp strategies, resistance to professional over-involvement, and provision of equitable access to resources and training. A number of the interviewees referred to a change in the attitude of their own organization towards people with disabilities at approximately the same time as the federal and provincial policy initiatives in the cases under study occurred. In fact, some saw participation in the policy process as the catalyst that stimulated their organization to rethink its own view of people with disabilities: "I think their shift took place during the committee hearings. I think that the changes and the modernization took place during the hearings because these bills brought on a level of reality and possibility that didn't really exist before." Several interviewees also placed a perceived change in attitude in the broader context of change associated with the disability social movement over the past few decades: "You can't forget there was the emergence of this whole new thing called the consumer movement in Canada at this time." Finally, interviewees talked about the emerging sense of political power in the disability community, which galvanized some of the policy initiatives we have been speaking about: "We carried a big stick! I think that it instilled amongst the local disabled persons a sense that there is somebody there, some group out there, that can actually do something." From the literature, Drake (1992) notes that a common history of struggle will mobilize a group but that this mobilization can be difficult

127 Themes in Disability Policy Participation to institutionalize and sustain, especially if the group has low internal cohesion. Wallerstein (1992) andWoelk (1992) suggest that marginalized groups are both actively excluded and internally fragmented to the extent of being unable to organize. As a consequence, disadvantaged persons may develop a worldview that open participation with nonmarginalized persons will not be productive for their survival. This view may explain the tendency of disability groups to focus exclusively either on people with physical disabilities or on those with mental disabilities. A combined group may not have sufficient internal cohesion, and also may cause conflict to surface between self-representation by those with physical disabilities, and representation on behalf of those with mental disabilities by able advocates. In light of the varied experiences of organizational sustainability in our cases, an interesting proposition for further study arises. To what extent do the stability and cohesion of a disability group affect its members' participation in social movements? Service or Advocacy ?

The overall purpose of an advocacy organization is often established in its origin; organizations advocating for people with disabilities are no exception. As we have pointed out in chapter 2, many of these organizations have short histories. One of the oldest organizations in Canada for people with disabilities, the Winnipeg League for the Hard of Hearing (WLHH), was founded in 1925, while others, such as the Blind Organization Offering Self-help Tactics (BOOST) and People United for Self-Help (PUSH), were founded as recently as the mid19705 to early igSos, during what Driedger (1989) refers to as the fifth civil rights movement. Groups founded in the early years of this century, of which the United Handicapped Groups of Ontario (UHGO), the Canadian Paraplegic Association (CPA), and the Canadian National Institute for the Blind (CNIB) are examples, were begun primarily for the purpose of providing service to their members. These groups focused internally on their membership with the aim of fulfilling the needs of their individual constituents: "WLHH was for people who were hard of hearing, and decided to get together for social or recreational purposes, to support each other in their desire to have better hearing aids, to educate the public about hearing loss, and to do good works, you know, provide a scholarship for a hard-of-hearing student ... That's quite different from an organization that sees a social problem and sets out to strategically influence public policy." The other main purpose of groups representing people with disabilities is advocacy. Advocacy groups tend to focus on their constituents as

128 A Seat at the Table a collective rather than as individuals, and address a range of concerns. Our interviewees referred to five fundamental issues for groups advocating for people with disabilities: housing, education, employment, transportation, and human rights. These core issues mobilized and galvanized the membership of organizations at different times in their histories: "We were founded because there were no services available in transportation, housing, education, and employment. We're still dealing with 50 per cent unemployment of the disabled, and we have limited housing options and limited access across the country. We have lots of education, but it was slow ... province by province, town by town, school board by school board. It's a never-ending battle." Advocacy appears to have taken several forms among the organizations represented in our study. Some advocacy groups founded within the last twenty years had from the outset a single mission: to achieve a specific policy change. For example, "Concerned Friends [of Schizophrenics] was started to deal with abuse in nursing homes and seniors' residences." Still other organizations focused their advocacy activities on more philosophical, abstract issues, with the purpose of creating an environment or climate that was inclusive towards people with disabilities. Such an environment would ensure that people with disabilities were consulted on policy issues, that their needs were considered, and that their rights were upheld: "It was just a natural flow for people with disabilities to extend their human rights lobby to the idea of constitutional protection ... The idea of constitutional protection was very invigorating. That was something that people could really get on board and think about. It really preoccupied most of our business meetings at the time." One of our interviewees, however, identified an internal debate within disability organizations. In his view, the more abstract policy issues faced by disability groups sometimes derailed organizations from their more practical missions, which were to advocate for the availability of services: "I think as the consumer movement evolved ... we got so tied up in philosophical discussions and debates that we forgot why we were founded. We were founded because there was no service available in transportation, housing, education, or employment." Service and advocacy responsibilities were not strictly defined dichotomies that could be easily separated. They represented a continuum and thus allowed the possibility of change. Some of the organizations represented in our sample experienced transitions of purpose from service provision to advocacy. The United Handicapped Groups of Ontario (UHGO), for example, primarily a service organization, was displaced by People United for Self-Help (PUSH), an

12Q

Themes in Disability Policy Participation

advocacy organization: "I remember a few activists came to the annual general meeting [of UHGO] ... with a proposal to change their constitution, and it lost by about three votes. There were tears in people's eyes. I recall quite clearly that the activists, who had struggled so hard to transform that existing organization into a more active one, were bitterly disappointed. It was after that [meeting] that they decided to form a whole new organization [PUSH] and apply for membership in COPOH." UHGO subsequently disbanded. Another participant described a similar transition in which a group of younger members who were disillusioned with the focus of an existing organization established a new group: "BOOST is a self-help consumer group formed in the seventies, because you will rarely meet a blind person who is not unhappy with the services of the CNIB. BOOST was organized by three or four bright, articulate, young blind people as an advocacy group, initially targeted at getting dramatic reforms in the CNIB." An advocacy purpose can be achieved in different ways (Neufeld 1991). Some disability organizations become directly involved in advocacy on specific issues. Other organizations fulfil their advocacy mission by supporting the self-help initiatives of their members. They throw the strength of their reputation and credibility behind members who try to help -themselves: "They knew people were hurting, they knew what they needed, and they knew what kind of support they needed to make their voices heard." One interviewee expressed a strong preference for the latter, indirect approach: "If there is to be strong community development [in the disabled community], then our organization can't replace the community. The risk would be [that] if we took positions on things, it would be in place of the community, so we have to be extraordinarily careful not to play that role." The gradual transition of Canadian disability organizations towards an advocacy focus is consistent with findings in other community development settings (Jackson et al. 1989). The literature suggests that advocacy organizations can often be distinguished according to their objectives. Some organizations have goals and objectives that advocate for the status quo. Their members tend to be placid, and their organizational structure tends to be formal, with little involvement of members in leadership roles. Advocacy organizations that have more radical, change-oriented goals and programs tend to have more ideologically oriented members, and their organizational structures are more informal and fluid. Members in such organizations have access to a variety of positions, roles, and activities (Sills 1968; Knoke 1990). There was some evidence from our cases that advocacy goals fostered an informal

130 A Seat at the Table

organizational style that gradually became more structured after the early days of involvement in Constitutional reforms. More recently, however, disability coaliti6ns in Ontario and British Columbia have been fluid, although this fluidity has not necessarily provided effective results. Our case studies, which focused specifically on advocacy, yielded mixed data on the degree of individual member participation. Some organizations had significant member involvement, while others had only a few committed members. It has, however, been reported elsewhere (Wandersman, 1981) that the number of participants in community organizations increases when organization goals are selected by community members rather than by staff, or when goals are at least mutually set. Wandersman also noted that the grassroots members in advocacy organizations who do not have strong ties or responsibilities, generally have much less effect on the instrumental goals of these organizations than do elite members who hold office. There are a number of possible explanations for low grassroots participation in some of the disability organizations. An absence of concrete tasks and outcomes in advocacy work may explain the inactivity of community members (Sills 1968). Godbout (1981) has also noted that consumers are more interested in goals related to improving local conditions than in goals related to technical innovations, which may appeal to service agencies. Consumers are also less interested in transforming relationships between negotiating parties, a goal that may appeal to advocacy group leaders. Another issue of concern is the extent to which disability advocacy organizations can sustain active member participation. We will discuss this key aspect of the policy-making process in Canada in the next chapter. RESOURCES FOR POLICY PARTICIPATION

A resource mobilization perspective demonstrates that material and human resources are elements that are indispensable for supporting the advocacy mission of an organization. In addition, organizational relationships such as coalitions formed through active or passive linkages with other agencies are important resources. Coalitions have increased in number and effectiveness as communication capabilities have developed in the disability movement. Resource Mobilization

Interviewees referred frequently to financial resources, and what finances enable an organization to do (for example, provide transportation, rent space, enhance communications, or purchase services): "We

131 Themes in Disability Policy Participation

needed funding in order to get organized. Without resources, people with disabilities simply cannot get together." A crucial issue for many groups was the lack of resources to mount an ambitious coordinated lobby. Funding was often scarce to nonexistent, and many initiatives depended on the ability and willingness of a small number of people. This is particularly well illustrated by an amusing story about individual initiative: "I got a call at 7:00 one morning, and it's Don Harron from 'Morningside' saying 'We want to have you on our show today', so I said 'Sure'. But they said about seventy-five times, 'Please get a coffee'. So I went downstairs to the kitchen, make a coffee, go back upstairs and phone them back. So I'm sitting on my bed in my pajamas, drinking a coffee and being interviewed on national radio by Don Harron! It was surreal!" Financial resources also allow organizations to have paid staff: "We have to have some kind of resource base to operate on. There's still too much poverty in our constituencies to be able to get along without external help. We won't be able to represent ourselves. We have to have skilled staff. We have to be able to pay for telephone calls and flying people to Ottawa. Without it, we won't be able to operate in that arena." Sources of revenue were varied. Some organizations received government financial support, about which there was some controversy: "Some of our member organizations used to accept money from the provincial governments. But the federal money that we negotiated for them gave them a great deal of liberty to challenge provincial policy and provincial legislation." Advocacy funding was thus occasionally accepted from one level of government and applied against another level. This strategy obviously implied risks for the organization, as well as for cooperation between different levels of government. Other organizations charged dues to their members although their members' poverty often severely limited their ability to raise resources in this way. Others raised funds through private donations when government funding decreased: "When the government turned their budget back, hoping they would die out, in fact the reverse happened. They found resources from community groups, from labour, from the churches. Their staff grew, their budget grew and they became more powerful." In some cases, organizations collaborated by sharing their resources. Organizations of professionals, in particular, were more resource-rich and could provide support to consumer organizations. This type of dependent collaboration had potentially negative implications for power sharing, however: "Very few of us had the horsepower that the government had, so you just needed to share expertise. Groups like the OMA did the secretarial work. The College of Nurses, the College of

132 A Seat at the Table Physicians, and the Ontario Hospital Association all had large resource bases, but in terms of input, we were on equal footing." At the organizational level, it is self-evident that community agencies utilize financial resources to facilitate participation in advocacy through expenditures on staffing, rent, and meeting costs (Butterfoss et al. 1993). Phillips (1992) noted, however, that, funding to special interest groups in the Canadian social sector decreased dramatically beginning with the 1989 federal budget. Limitations on agency funding have been shown to affect citizen participation levels adversely (Van Til 1984). In addition, funding conditions and short-term grants create organizational uncertainty, diversion of purpose, more frequent staff turnover, and increasing bureaucratization, all of which negatively affect advocacy (Ng 1990, Shragge 1990). The state may also take advantage of organizations' dependency on financial resources to control strategies for advocacy by funding only compliant local agencies, or by co-opting noncompliant individuals with offers of employment or state appointments (Loney 1977, Pal 1993). Both provincial cases discussed here provided examples of this exercise of state control. The effects of inadequate resources on citizen participation have been reported recently in health-promotion projects (Farrant 1991, Boyce in press) and in community-care planning for people with disabilities (Bewley and Glendwinning 1994, Boyce 1999). In these situations, the goal of citizen participation is relegated to a back burner. Organizations respond to the challenges of limited resources with three strategies that have both positive and negative repercussions on citizen participation in policy making: • the efficiency response (co-funding, using private resources, staff cutbacks, collaborative ventures with allies), which leads to a reduced emphasis on advocacy as time is spent on more "profitable" activities; • the co-optation response (altering the advocacy focus to match the current political agenda and/or the inclusion of currently popular groups), which leads to expansion of the organizationally network and occasional new linkages between citizen groups; • the empowerment response (lobbying with allies for increased shares of social programs), which leads to increased organization-toorganization contact but reduced contact with grassroots community members. An era of financial restraint in government spending may spell the demise of consumer-based disability organizations since little funding is available for the organizational or personal support that they need

133 Themes in Disability Policy Participation

for full participation. This demise may presage a return to a service orientation in public policy. Such an orientation may lead to greater investment in professionals, who become resources to those in need, than in programs that improve the conditions and capabilities of persons with disabilities directly. It is also possible that disability groups may be left to fend for themselves. Overall, we observed that an uncertain economic environment decreases citizen participation in two ways. First, sponsors may divert their attention to resource mobilization activities rather than supporting the activities that are necessary to promote citizen participation. Second, lack of resources may create organizational instability and make staff positions insecure, thereby decreasing staff effectiveness in recruiting members. Both of these mechanisms are consistent with existing literature on resource requirements in community organizations (Ng 1990, Shragge 1990). Resource mobilization theory (McCarthy and Zald 1987) and new social movement theories (Scott 1990) predict that the effects of resource availability on citizen participation are co-determined by other structural factors such as program mandate, leadership, and program linkages. Linkages With Other Policy Actors

One category of resource links in the policy process, and an essential one, was contact within government. Our interviewees discussed links with government in three categories: with politicians (or elected officials), bureaucrats, and committees. They found that in all three categories, attention to jurisdiction was essential. Contacts needed to be cultivated and sustained at all levels, particularly federal and provincial, according to the issue at hand. Links with politicians included contacts with high-profile officials responsible for certain portfolios, with provincial premiers and cabinet ministers, and with local MPS and MPPS. One example involved the Charter case: "The coalition met with the Premier and the Labour Minister, and got them to agree to a proposed amendment and to further meetings with us to discuss it." Another interviewee reported on negotiations over the Canada Clause: "We had meetings with Joe Clark when he was Minister for Constitutional Affairs and Kim Campbell when she was Justice Minister ... All of our members were encouraged to go to their MP, and get that MP to go back to the House with the information to support us." The purpose of links with politicians was obviously to have the most direct possible influence on the policy process. Individuals with disabil-

134 A Seat at the Table ities and their groups sought to reframe issues in the minds of politicians, to provide elected officials with information about the disability community, to raise the profile of disability issues in discussions in the House and in legislative committees, to alert politicians to potential consequences if people with disabilities were disadvantaged by policy, and to directly influence the way politicians would vote when legislation was presented. Our interviewees also considered relationships with bureaucrats to be essential to successful policy participation: "The politicians move on, but the bureaucrats are always there, so we used the bureaucracy a lot". The main purpose of links with bureaucrats seemed to be the exchange of information. By providing information to the relevant ministry staff, disability advocates attempted to ensure that the right point was made at the right time in any proceedings that were not open to the public. Bureaucratic connections had the potential to influence internal governmental discussions on the disability perspective. In addition, by knowing who in government was working on particular aspects of policy, non-confidential information, which might otherwise not become public, could be obtained in a timely fashion: "We have a couple of people who have worked in different ministries who have disabilities themselves and who are interested in being our inside people. They can get us into a lot of places that we couldn't get otherwise." Another important channel for influence within government is involvement on committees, which are the venue for a good deal of the work of policy development and review. Participation on relevant government committees is a way of getting directly into the mainstream of the policy process and being heard by a broad range of influential people in a single forum: "I sit on an advisory council at the Ministry ... I've being doing this for two years now, and I now know enough backbenchers and ministers that I can talk to them or their staff immediately. So I know them and I know the process. I know what they want to hear, and what you strategically have to say." Partnerships with individual professionals, professional groups, and consultants were also described. Professional groups were sought for partnership because of their power, their resources, and their legitimacy: "We have a government that listens to doctors. It's been really clear on a number of initiatives that the OMA has an awful lot of influence on the premier, and this thing was eventually going to end up in his office." Consultants were engaged for numerous purposes, mostly to give political and legal advice: "Their lawyer looked at the wording for us, crossed out a couple of words, and wrote in a couple of other words, and then we passed it along." Some consultants were engaged on a

135 Themes in Disability Policy Participation

formal basis and others were approached informally for their professional expertise: "This one law professor at Harvard, who was a Canadian, was a kind of helpful pal, and I talked to him several times." Members of the media are also valuable contacts in the policy process. Disability organizations have used the media effectively in a number of policy initiatives to gain public attention for their position on an issue. Media coverage can be an incredibly effective and efficient way to disseminate a message: "There were seventy headlines in newspapers across the country and live coverage by two networks when I did the announcement. So they picked it up and it went right across the country." The media can also be successful in enlisting public sympathy, by putting a human face on issues: "You try and use the media to bring in people who are really affected to say 'Here is a real-life situation, and here is what it means to me.' " Finally, the media can also be used as a form of leverage to keep politicians honest: "We also had the capacity to obtain press coverage, so our strategy with the government was to say, 'You're doing a great job, but you just have to improve a bit. And by the way, when we're not happy, boy, can we make a stink!'" Linkages With Other Advocacy Organizations

Who did people with disabilities partner with in their efforts to influence the policy process? What did they hope to achieve in these partnerships? Some of the most interesting partnerships were those involving other groups of people with disabilities. These partnerships differ in terms of form and tactics. Partnerships took one of three forms: ad hoc coalitions, permanent coalitions, or networks. Ad hoc coalitions are purpose-specific, timelimited affiliations of people or groups with a single issue in common. A good example is the Coalition for Human Rights for the Handicapped which formed in Ontario in 1979: "We got some eighty-five groups for and of people with disabilities to rally and fairly quickly form a coalition on the human rights side." The main functions of ad hoc coalitions of this type are to rally support, raise numbers, and gain political attention. Another type of ad hoc coalition was partnership with other groups of able-bodied individuals. In such cases, disability-focused groups partnered with women's groups, anti-poverty groups, seniors' groups, gay and lesbian rights groups, and other groups who felt similarly marginalized or disadvantaged on a specific issue, in order to present a united front: "Seniors have always been a part of our coalition. For the last few years at least, there has always been a co-chair from the seniors community and one from the disability community."

136 A Seat at the Table

The main effect of multi-sectoral coalitions seems to have been to increase numbers of supporters, and to impress policy makers with the breadth of support for a position. Interviewees also reported that they benefited from the information networks of other organizations outside of the disability network: "NAC (National Action Committee on the Status of Women) had members at the first meeting in Charlottetown, and they saw the first draft of the Canada Clause. They called us and said, 'You're not in there. What do you want to do about it, and we'll support you as much as we can.' " The second form of partnership between disability groups was through permanent coalitions. Permanent coalitions form when a number of groups recognize a broad area of shared concern, and an on-going need to coordinate activities and act in concert on various issues. The Council of Canadians with Disabilities (CCD), formerly the Coalition of Provincial Organizations of the Handicapped (COPOH), is an example of a permanent coalition that has been influential in policy since it was founded: "We are a membership organization representing advocacy groups from each province that adhered to the principles of Independent Living and dignity for disabled persons ... and a number of other national organizations are now also members." Permanent coalitions are also a means of enhancing support for specific issues, and raising numbers and profile. They have the additional purpose of building solidarity within a social movement and generating a sense of legitimacy and permanence. Furthermore, permanent coalitions provide the opportunity to build sustainable and dependable links and partnerships. The CCD president notes: "Our national coordinator has been with us eleven years now and he knows almost everyone in Ottawa. He can pick up the phone and, if he doesn't know who to talk to, he can find out." The third kind of partnership among people with disabilities described in our cases was what we have called a "communication network," a loose affiliation of individuals or groups with no formal structure, but with a tacit agreement to keep one another informed on developments of shared interest. "We did send out stuff to them and they sent stuff to us. Various national organizations were receiving our information, but we were also receiving feedback from them as to what their stand was, so we could support them ... Often what we'll do is not formally ally with them, but we will talk and discuss what's going on, and we'll sometimes suggest [a] consistent strategy." Although the overall strategies used by various disability organizations within each type of partnership were similar, their tactics for achieving specific goals differed widely. At one end of the spectrum were groups who pursued their objectives collaboratively: "We saw ourselves [COPOH]

igy Themes in Disability Policy Participation

as allies [to legislators]. We saw our contribution as a potent kind of ingredient, and I think [the premier] understood our intention at a rational level. We were reluctant to appear rude or offensive, to rock the boat. Our sense of social identity is related to peace, order, and good government ... We had a history of being a consultative body, particularly with respect to some federal departments. So we had access in Ottawa." At the other end of the spectrum were groups that believed in, or acknowledged, a need to create a certain amount of tension in order to accomplish their ends: "There were those who felt that organizations could be too collaborative. There were those who felt that public demonstrations and rallies on the Hill were the way to go." This does not mean that an organization cannot change its tactics over time. Indeed, a number of our interviewees commented on changes in tactics: "Organizations change from activist to non-activist, or from non-activist to activist. They move in both directions, and it has something to do with the people that are in it, and the causes that animate the organization." The move from collaborative to confrontational tactics may be seen as a process of radicalization: "I have seen people who make polite speeches and write letters finally become so frustrated that they are willing to take an activist stance ... I think in general, activism is predicated on two things. One is a perception of need, urgency, or pain. The other is a perception that a solution is possible, that power is available and can be harnessed. The absence of these [is] like a disease in an activist organization." Movement in the opposite direction, from confrontation to cooperation, may be thought of as co-optation. One interviewee described the effect of co-optation. "We started to slide into the abyss of backroom meetings and philosophical discussions. We became almost totally co-opted by the bureaucracies in Ottawa." Another observed: "There were no boundaries between the [NDP] bureaucracy and the Advocacy Coalition, and to me, that indicates a fundamental lack of understanding of what advocacy is." Another participant saw co-optation as part of a common developmental process that happens to interest groups and referred to theory on interest group development: "We went through a period where some people dropped out because they felt we were too friendly with government and with the commission, and we weren't sufficiently effective. But you know the history of organizations - forming, storming, norming, and conforming. We have had our stormy period, and things are kind of dull right now." Lest the picture we have painted of partnerships in the disability policy process appear too rosy, we must also mention the barriers and

138 A Seat at the Table

challenges to these liaisons that were encountered by our interviewees. Although the Ontario Advocacy Coalition could be classified as an ad hoc coalition, our interviewees identified some of the strategic problems that its loose structure caused: "Rather than trying to connect with a common position ... people were just trying to shout each other down, and there wasn't any intent to collaborate and come up with a common position." And "Yes, there was voting, but usually what ended up happening is [that] it just divided the coalition - not down the middle, but about 60/40." Another Advocacy Coalition member said: " [It] never really came together, and I think there were a number of reasons for that ... The composition kept changing ... I'm not sure the constituencies that they said they were representing were with them all the time ... I don't think you can have a coalition unless you have at least a core piece of common ground that people can agree on. I think the basic philosophies were different, and where you haven't got similar philosophies, you haven't got a coalition." Participants also noted the presence of groups in the coalition who were opposed to working with other groups because of personal and philosophical differences. For example, People First, an advocacy organization of people with developmental disabilities, did not want to work with the Ontario Association for Community Living, which consisted primarily of family members of people with developmental disabilities. Perhaps the most threatening challenge to a partnership occurs when, in spite of having one or more issues in common, the partners hold other values that conflict: "Some of these groups were not talking about disability at all, and so there was some friction there. Some of them were having some fairly vicious dealings with politicians and getting themselves knocked out of the fray. And they wanted us to drag them back in. Some of them were using the coattails of disability to get their agenda on line. They knew their issues were going to be offensive to the politicians, but by going through us they hoped to slide it by. They wanted to rewrite stuff that we didn't necessarily agree with, and we knew that it wouldn't go through and then we would all sink." Similarly, competition within partnerships can be destructive and counter-productive: "My personal view is that it was a fight as to who was going to control the advocacy community. Who's going to be seen as having the power? And there just seemed to be actions that were meant to split the community, to divide it, and to keep anybody from gaining too much ground." Another activist commented: "What's going on internally is really far more destructive and depressing in a way. Very hostile kinds of things are being said, and it's unfortunate, because we don't have the energy to fight on two fronts. We're really hurting our credibility right now."

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Political inexperience often fostered unrealistic expectations: "New groups, when they're just starting, they want everything. And they think that if you look righteous and you have a good argument, people will accept it; that things should be as obvious to everyone else as they are to you." Groups new to the game found it difficult to appreciate that small achievements could be considered successes. Timing is another important issue that can act either for or against partnerships in the policy process. The tipping of the scales in negotiations over the Canada Clause was a prime example: "Someone on the committee said, 'You know, given that this is the International Year of Disabled Persons, don't you think we should reconsider this?' And Chretien said, 'OK, we'll reconsider it.'" But timing could also act against disability groups: "It was a trade-off. At the same time, the OMA [financial] agreement was being negotiated. So the government saw that they could gain some ground in the OMA negotiations by giving up something on advocacy. So you always have to be aware of other issues that are going on at the same time." The literature suggests that forming coalitions may be used as a strategy for involving wider groups of people in common objectives or activities of mutual interest. As such, they can be considered examples of "community agency advocacy." Some structural factors that stimulate coalition formation are resource scarcity, a legislative mandate to work together, the presence of an effective catalyst organization, a previous history of collaboration or competition, and a capacity to maintain linkages (Butterfoss et al. 1993). Factors that contribute to the maintenance of coalitions include the establishment of formalized rules and procedures, and the participation of strong core leaders who support members' concerns and are competent in negotiation, gathering resources, and problem solving (Roberts-DeGennaro 1986). In the cases we studied, coalitions were effective only if they were composed of groups with mutual goals. For example, in the Ontario case, coalition solidarity based on self-identity as a disability organization was less important than consensus on concrete concerns of decision-making capacity. In particular, the interests of family-oriented disability groups were distinctly different from those of consumer disability groups. It is possible that coalitions of these two types of organizations are useful only for non-contentious issues such as accessibility and human rights, rather than for highly charged issues such as capacity and substitute decision-making. Social movement theory suggests that coalitions of groups of disadvantaged persons may find it difficult to mobilize resources because they lack associational contacts or partnerships with those who control resources (Knoke 1990). However, the strength of the political group

140 A Seat at the Table identity achieved by such coalitions or social movements may compensate for this instrumental shortcoming (Touraine 1981). As the participation of disability groups in policy making matures, it will be important to study the relative advantages of the networking strategy for persons with disabilities in comparison to its advantages for able-bodied community groups with more resources. ROLES WITHIN DISABILITY ORGANIZATIONS

In characterizing the dynamics of citizen participation within disability advocacy groups, it can be useful to examine them from an interest group perspective. Participants' formal positions, informal roles, and power dynamics can be affected by a number of factors related to membership and leadership. Membership and Governance

A key characteristic that can help describe organizations advocating for people with disabilities is the structure of their governance and their membership. The organizations discussed by our interviewees may be divided into three types of membership: organizations made up of individuals, family and friends, and groups and organizations. Examples of organizations made up of individuals included the CNIB, the Multiple Sclerosis Society, and the Canadian Paraplegic Association, to name a few. Such organizations tended to be service organizations or self-help groups aimed at providing counselling or support to members. Individual members of organizations may be very diverse, with a number of personal concerns unrelated to disability issues: "The disabled community is not separate from the women's community, the Aboriginal community, or from visible minorities. Our members are people with disabilities who are all of those things women, native people, and visible minorities." Organizations of families and friends were also represented in our sample by groups such as the Concerned Friends of Schizophrenics, the Canadian and Ontario Associations of Community Living, and the Alzheimer Association. In all cases, these organizations were composed of individuals who cared for people with disabilities and sought attention for their issues. One participant raised an interesting question about disability groups made up of family members. To what extent do family members represent their own concerns rather than those of the person with disabilities, and how much do they focus on their own family member, rather than on a larger group of individuals with dis-

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abilities? " [They] really created a different dynamic ... Their interests were different, much more family-oriented, much more oriented toward a system that works for their ill family-member." One interviewee observed an interesting phenomenon among organizations of friends and family members. She noted a process of waning loyalty toward the medical system and the development of more creative forms of problem solving when traditional service organizations failed: "They went through the process of putting their faith in doctors and found that it wasn't working. So they started looking for other solutions ... when they realized that doctors and hospitals didn't help that much. Some of them, I think, move [d] into some really innovative ways of dealing with things." The final type of organization represented in our sample is the organization made up of other organizations. Two such organizations within the disability community are COPOH/CCD and ARCH umbrella groups composed of other organizations that have a common purpose and philosophy. "[COPOH] is a membership organization representing crossdisability advocacy groups from each province. [Our members] adhere to the principles of independence and dignity for disabled persons, full participation in the community, and equal opportunities. Our organizations were 51 per cent consumer controlled, and we followed the Independent Living philosophy." (COPOH subsequently changed its name to the Council of Canadians with Disabilities, to reflect its inclusion of a number of other national organizations, such as the Canadian Association of the Deaf and the Multiple Sclerosis Society.) The specific purpose of ARCH is to provide legal services: "[ARCH] is a cross-disability organization, linking people with physical, emotional, and developmental disabilities. We had about forty member groups in 1992, as opposed to about fifty-five today. We have about twelve staff, including five lawyers." A third umbrella organization discussed by our interviewees was the Canadian Rehabilitation Council for the Disabled (CRCD). CRCD provided a unifying structure for a variety of national professional organizations. With a membership exclusively of professionals, it was sometimes seen to be in conflict with other consumer-oriented organizations. A COPOH member recalled its early days: "One of the first strategies of CRCD was to integrate our emerging movement [COPOH] as a sub-committee of their board. Then they would digest our recommendations and forward them at their own discretion." To counter this strategy, "[COPOH] went on a cross-country tour, to recruit organizational memberships, and to beat down our rivals, PUSH and the CRCD. It was a rival model that really stimulated the effort to form a national autonomous voice of consumers."

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Regardless of the type of membership, a number of interviewees commented that organizational structure was sometimes an impediment to timely action: "Some groups would say, 'We'd like to act on this, but we've got to wait for next month's board meeting, and present a resolution, and if it passes, that's great. But if it doesn't, there may be a need for a committee to debate it.'" There is evidence from the literature that the requirement for a formal board of directors and executive director can undermine the democratic process, especially in large and expanding community organizations. Smaller organizations are able to maintain a democratic decision-making process more readily (Shragge 1990). Our cases demonstrate, however, that with extremely fragile organizations, individuals who have not received any formal mandate from a board may be called upon to run the policy campaign and represent the board's policy position purely on trust - trust that the organization's values, its views of persons with disabilities, and its leaders' good sense will not be compromised in the various stages of policy negotiation and implementation. Leadership and Experience

Leadership is an important factor affecting tactics in policy participation. Each case illustrated had three to four leaders who took the initiative, organized the work, and represented the organization's views. It is interesting that in none of the cases did a single leader monopolize the entire process. This collaboration was perhaps due to the emphasis on coalitions. Individual leaders can strongly affect the success of advocacy organizations. Sometimes one energetic leader can make things happen on behalf of a whole organization. Opportunities to influence policy may occur simply because a person is in the right place at the right time and is prepared to seize the moment: "We were very lucky in some of our leadership, because they were very sophisticated in understanding what was possible ... We had some very skilled leaders who were able to bridge the gap with other communities and attract resources." And leadership must continually be renewed so as not to become too entrenched as it did in one example cited: "They got tired and they got co-opted very early in the game. That's why you need new blood all the time. And you need people with different ideas and approaches ... I've seen the same executive directors ten, fifteen, twenty years in organizations. No organization built on consumer involvement can survive that, because the individual becomes the organization." A well-positioned group of people within the organization can also help to create opportunities: "A friend of ours knew we were trying to

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get to the Minister, and he was very good friends with his legislative secretary. So he introduced us to the legislative secretary, who got us in to see the Minister." Experienced people are another most valuable resources: "I don't think we necessarily had the structures in place to deliberately sit down and analyse policy, but we did have people with good political experience, who, when we did decide to undertake a certain course of action, made sure we did it with legitimacy and credibility." In the literature, leadership has been conceptualized to include elements of competence, performance, support, and control (Knoke 1990). Wilson (1973) argues that while leaders are important to the achievement of the functional goals of a program, they often have distinctly different, and more extreme, ideological positions than members do. Social exchange theory suggests, however, that a leader's chief task in promoting citizen participation in policy advocacy is to manage the organization's incentive system. Incentives may include opportunities for travel, influence, and public profile (Knoke 1985). Even though most organizations have constitutions or bylaws that call for full participation by the members, they tend to be ruled by a minority, through what Michels has called the "iron law of oligarchy" (Michels 1959). The obligations of organizational roles and the structural needs of the organization itself usually prevent full and equal participation of all members (Sills 1968). Leaders with specialized skills, available time, and temperament or charisma will tend to dominate in any organization (Knoke 1985). Nonetheless, persons with greater perceived influence are those who are involved more frequently: "opportunity structures," or the ability to access situations that foster influence, may be an important element in the process of empowering participation (Tarrow 1989). Oakley (1991) found that potential access to positions of power was a significant factor for the recruitment and retention of participants for advocacy work. Balcazar et al. (1994) has also reported that the leadership skills in advocacy organizations of persons with disabilities markedly affect the issues raised, the actions taken, and the outcomes achieved in advocacy. All these previously identified effects of leaders on member participation were evident to some degree in the cases we reviewed. Few negative aspects were reported among leaders in these cases, although our decision to primarily interview individuals acting as leaders rather than grassroots members of the organizations may have had a bearing on the findings. Overall, the disability organizations were often struggling from an underdog position in which leadership was necessary for group survival. The risk of a leader dominating the process appeared to be less pressing than the need for strong action.

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Finally, although advocacy organizations tend generally to have members who are ideologically oriented and make strong commitments to participation (Sills 1968), this may not be the case in organizations of persons with disabilities who rely on others to speak for them. The discrepancies in status and experience between leaders and other more marginalized target-group members may lead to leaders' assuming control in order to achieve the public advocacy goals of an organization. A study comparing the characteristics of leaders and members in advocacy organizations and service agencies in both the disability population and the general community may be helpful in ascertaining the effects of program mandates, leadership, and disadvantaged status on citizen participation. R E P R E S E N T A T I O N IS NO GUARANTEE OF INFLUENCE

We have shown how reputations, responsibilities, resources, and roles affect citizen participation both within the policy-making process and within advocacy organizations themselves. Factors such as ideology, advocacy mandates, leadership, membership base, coalition-building, and resource mobilization strategies had a direct effect on citizen participation. In particular, ideological and reputational mechanisms appeared to provide a degree of self-identity and autonomy to the organizations in a way that facilitated the confidence and involvement of its members. Thus, a number of social movement characteristics were observed in these cases (Castells 1983, Touraine 1981). Previous studies on interest groups support the findings in this study as well. The organizational characteristics that have been found to be important for the development of other advocacy organizations are similar to those that were important in these cases. Differences from other advocacy organizations described in the literature are generally minor and can largely be explained in terms of the early maturity of Canadian disability organizations, their heavy reliance on expressive leaders rather than on grassroots support, and their lack of material resources in comparison to other policy actors. Hadley and Hatch (1981) highlight the diversity of form as well as function in agencies that represent disadvantaged groups. This diversity ranges from: "organizations no less formal than those found in the statutory sector to some that are so informal that they hardly merit the term organization." The present study adds to the scant literature available on the latter type of community agency in the disability sector. The next chapter further describes the potential for such agencies to influence disability policy reform.

9 The Potential for Influencing Policy

In the course of this study we have investigated the ways in which persons with disabilities participate in policy making, in order to develop an understanding of the strategies and tactics, and the structural requirements for improved citizen participation in the policy arena. In this chapter we will examine the potential of disability groups to influence policy by focusing on three areas. First, we conceptualize interest group roles and the effect that disability as a specific policy issue can have on interest group participation. Second, we discuss some issues related to the participation of disability organizations in policy making. These issues include: the distinction between representativeness and representation in disability groups; the relationship between advocacy activities, organizational structure, and grassroots member participation; and the preconditions for disability groups to exert influence in the policy relationship. Third, we link participation in the disability sector to a broader analysis of the policy-making process in Canada, specifically the concepts of state autonomy and capacity, organizational development and influence, and policy communities and networks. INTEREST GROUP ROLES AND POLICY ISSUES

Political will, political factions, and concern about political survival are key concepts in developing an understanding of political action. Timing and management of interest group competition are also salient political factors (Reich 1994). In keeping with our intent to deal here

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primarily with the sociological and organizational bases for disability groups' involvement in policy making, however, we will not allude to these political science issues any further. We will instead focus specifically on the roles that interest groups and policy content can potentially play in influencing policy. Typology of Interest Groups

Interest groups can play different roles in the policy arena depending on their type (Walt 1996). "Insider" interest groups are accepted as legitimate by government policy makers, with whom they have a close consultative relationship, providing and testing ideas for policy changes. An insider organization should be clear about its goals and its intention to be an insider group; it should also be wary of co-optation, as we saw in several cases in this study. For example, the perception of COPOH as an insider group that could be counted on for support by the government was a major dynamic in the Charlotte town case and provided an interesting example of how even insider status may be temporary for marginalized groups. How does a group achieve and maintain insider status? Some common tactics are: to invite retiring bureaucrats to take positions in the group; to maintain regular contacts with specific civil servants; to organize formal meetings between the organization and top officials a few times a year; and to have a series of contacts with members of parliamentary committees. These tactics, which depend on developing close relationships, may be ineffective, however, if the group is representing marginalized persons or is challenging basic values. "Outsider" groups (for example, Greenpeace or AIDS Action Now!) are perceived by government policy makers to be illegitimate. They use different tactics: direct action with sensational strategies; persuading individual politicians to take up their cause in legislature; and using lobbyists or paying professionals (lawyers, journalists, or social workers) to put their cause to the media or to elected representatives. Outsider groups are often subject to sanctions if they are dependent on powerful groups such as professionals. An outsider group (for example, People First in this study) can sometimes become an insider organization because of its moral authority, or its credibility, in the eyes of government interests. A third alternative is described as a "thresholder" group. Such groups work in areas that are marginal - sometimes on the inside, but often on the outside. For example, a government may value the advice a group provides without accepting its analysis of a problem or its suggestion for a reasonable solution. This threshold role appeared to be

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useful to some organizations in our cases, as they observably shifted between insider and outsider status. This shift was sometimes a deliberate strategy but was also occasionally caused by a change in government that moved groups from insider to outsider status. In the patriation case, COPOH acted as a thresholder group, sitting on government transportation committees, and then using these opportunities as bases from which to tackle constitutional issues from outside. Characteristics of the Successful Policy Issue

The characteristics of the policy issue can themselves affect policy process and outcome. In this study we considered the context within which a policy issue arose and the interest that advocacy groups had in that issue. Then we considered the characteristics of the disability group and other organizations involved, their structure, tactics, and strategies. Some characteristics of the disability policy that affected both process and outcome were evident in these cases. A policy is most likely to get on the agenda if a government has the support or trust of the public and thinks that the issue is highly legitimate and its implementation is feasible. Coleman (1985) suggests that if problem, politics, and policy streams all come together, then policy action is more likely. The term "problem stream" characterizes the way in which government officials learn about social conditions requiring legislative action. The problem stream may involve the use of statistical indicators, feedback from existing programs, or events that may involve some kind of crisis (for example the Joseph Kendall coroner's hearing in the Ontario Advocacy case). The term "politics stream" characterizes the visible participants (the organized interests who highlight a problem and use the media to get attention), who can be inside or outside government; and the hidden participants, such as consultants, researchers, or academics, who can leak information to the press, or call attention to problems through scientific articles. The "policy stream" characterizes the methods of policy makers who select from among problems using criteria such as: congruence with existing values, anticipation of future constraints, public acceptability, politicians' receptivity, and technical feasibility of implementation. Overall, Coleman predicts that policy is more likely to be formulated and implemented if the following conditions apply: • the policy will not generate strong reaction, or the government can dissipate reaction; • the proposed change is marginal (also known as incrementalism);

148 A Seat at the Table • the goals of the policy are clearly stated and there is one major objective; • the policy is perceived to be based on a clear theory of cause and effect (perceived as a "good" policy and likely to succeed); • the policy has relatively simple technical features (knowledge and technology already exist); • adequate time and resources are seen to be available; • the policy can be implemented by one actor or a few actors and does not depend on extensive networks of collaboration or coordination; • the policy can be introduced quickly, and is therefore less likely to encounter resistance or leadership changes. The fact that many of these elements were lacking in our case studies may help explain the difficulties they met with in the policy stream. For example, in Ontario, the Advocacy legislation lacked a number of these policy characteristics: the legislation was complex; it involved fundamental changes; it was technically difficult; and it needed to be implemented by networks. Ultimately the Advocacy legislation failed, while other changes to the Consent to Treatment Act, which were marginal and simpler, survived the change of provincial government. At the same time, the British Columbia case illustrated essentially the same advocacy issues being more successfully addressed due to a stronger set of disability participants who had no real opposition from professional or family groups. In the Charlottetown case, on the other hand, the complexity of policy implementation should have predicted failure as well. However, despite the fact that implementation would ultimately fall on the shoulders of the provincial governments (even though they were against it), since the federal politicians were in favour, the policy initiative proceeded - at least until more pressing constitutional issues pushed the disability groups aside in 1992. CONTENTIOUS ISSUES IN DISABILITY GROUP POLICY PARTICIPATION

Representativeness or Representation ?

The distinction between representativeness and representation has become important in the literature on citizen participation. Misunderstandings about these concepts were a source of conflict in a number of our cases. To illustrate the distinction, we suggest that "representative" democratic principles of liberalism and free choice within a neutralist

149 The Potential for Influencing Policy state can be contrasted with "participatory" democratic principles of equity and community representation within a social welfare state. The representativeness of an organization in policy making indicates whether there is participation from the entire range of individuals who could be involved in a policy-making process. This approach derives from the politics of consumerism and market welfare, and is of prime interest to funders and government in their relationship with community organizations that are participating in policy making. Representativeness utilizes formal administrative structures such as elections based on notions of representative democracy. Under such a structure, there may be problems with individuals' being heard. Democratic theory itself presumes that there will always be inequities in economic power, and, by extension, inequity in the ability of disadvantaged groups to participate (Held 1987). Under a system of representative democracy, the average member of an organization is relatively remote from the real exercise of power. The elite leadership roles that representative systems create are also cause for concern. Representatives often develop vested interests in their functions that may conflict with those of the members who selected them (Dachler and Wilpert 1978, Sadler 1979). The British Columbia Adult Guardianship case provided some examples of the exercise of power by those with vested interests. Representation of a collective organization, on the other hand, is quite different. It indicates whether a whole organization is included in the decision-making process. This approach derives from the politics of liberation, inclusion, and equal opportunities, and is of prime interest to community organizations that attempt to form a collective identity based on shared experiences and ethical, rather than material, motives (Jenson 1994). Representation is based on informal power structures and notions of participatory democracy (Held 1987). The Charlottetown Accord case illustrated the concept of representation by disability interests in the constitutional policy field. Even if there is representation by community groups in decisionmaking, however, organizational influence is not guaranteed. Studies have shown that power hierarchies, lack of access to information, and disparities in administrative skills can inhibit equal participation. For example, Godbout (1981) reports that consumer groups require a guaranteed number of elected seats to be able to exercise any influence in CLSCS (Centres Locaux de Services Communautaires) in Quebec. In contrast, Eakin (1984) reports that in Quebec hospitals democratization of board membership beyond elites was ineffective in transferring control to community interest groups. Sullivan and Scattalon (1995) also note that persons with disabilities who were

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members of health policy boards in Nova Scotia had no increase in decision-making authority. These studies indicate that the status quo was maintained because of the traditional power hierarchy, because individuals lacked legitimated ties to formal consumer organizations, and because as consumers they had insufficient knowledge and skill levels to participate on an equal basis with professionals and elites. Citizen participation in policy making that is based on representative principles is rife with conflict over the question of legitimacy. On the one hand, when citizens demand participation, they may be met with the bureaucratic challenge: "Who do you represent anyway?" This challenge may reflect either a real power struggle or a conflict between representative and participatory democratic principles. On the other hand, when bureaucrats themselves select citizens for participation from particular groups, there is often a requirement that these participants act not as representatives of those groups but only as individuals. This again may reflect either a power struggle or a fear that representatives will continually seek approval from their constituent group in time-consuming ways (Lucas 1978). Furthermore, Alford (1975) notes that inter-agency planning committees that include grassroots community members may operate under rules that require a consensus, and are thus doomed to failure. He argues that the inclusion of a wide range of community members in order to make community groups representative prevents consensus from being reached within the community itself, much less with professional and bureaucratic participants. A "veto group" process can lead to stalemate and perpetuation of the status quo. Beresford and Campbell (1994) and Bewley and Glendinning (1994) note that consumer organizations of persons with disabilities have been criticized for not being representative, or inclusive, of the broad population of persons with disabilities who are users of their services. However, in defence of individuals who try to represent others, Godbout (1981) argues that consumer leaders have often themselves evolved from being passive service users to becoming active advocates for change. Since they bring their personal experiences, the representation of the collective interests through leaders may be broader than the apparent non-representativeness of its members might indicate. It should be noted as well that not all persons with disabilities are able to assume effective positions of influence in a policy development setting, and that significant mediation by other actors may be necessary. In the disability field, consumer groups attempt to achieve the democratic principles of representativeness by focusing on a broad range of activities that are important to all or most persons with disabilities, rather than by formally recruiting a broad range of people to

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participate. This strategy is based on a social model of disability and assumes that differences among people with disabilities are not as great as differences between access to activities by persons with disabilities and by able-bodied persons. For a community organization to involve all subgroups in policy development, according to ethnicity, sexual orientation, and disability status, for example, significant external supports would be required. Regardless of the model used to represent a broader domain of persons with disabilities, there is an increasing realization that target group members must not act individually, but as true, informed, and legitimated representatives. However, for this to happen there must also be organizational support in the form of training and physical, informational, and temporal forms of access (Drake 1992). Relationship Between Advocacy Activities and Grassroots Citizen Participation

A major trend in our sample cases was that over time there was an increase in the roles and influence of staff and organizational leaders and a decrease in the participation of local community members. This trend appeared to have been influenced by a shift in organizational objectives from self-help and education for grassroots members to advocacy and lobbying with other agencies for changes in public policies and programs. Thus, the tendency in advocacy work to politicize issues in order to address structural conditions had the concomitant risk of a gradual alienation from grassroots groups that had continuing service needs. General shifts in project objectives, or goal displacement, have been noted previously to have varying effects on citizen participation (Sills 1968, Klandermans 1984). The intention here is to discuss how advocacy activities in particular are associated with low levels of grassroots member participation. Two interpretations, the motivational and the instrumental, are relevant to explanations of this shift in participation. The motivational view helps explain the tendency for more advantaged groups, which have fewer needs for material benefits, to predominate in advocacy. These groups are not as preoccupied with survival needs and may instead desire the status that can be achieved through participation in an advocacy campaign (Hermann 1991). The specific focus, or orientation, of the advocacy activity is important in this motivational view. Turner and Killian (1987) describe three orientations of advocacy campaigns: a participation orientation, or orientation towards the personal benefits of participation; a power orientation, or orientation towards acquiring and exerting influence; and a

152 A Seat at the Table value orientation, or orientation towards the goals and ideology of the movement. Klandermans (1984) uses the motivational typology to hypothesize that organizations with a power orientation must convince potential participants that the advocacy campaign will be successful, or members will not participate since there is little direct material benefit to the individual. Paradoxically, once an organization convinces individuals that the campaign will be successful, the more attractive it becomes for individuals to take a free ride, and thus have fewer reasons to participate (Olson 1968). If an organization has a value orientation as well, however, this problem of non-participation is reduced, since the individual may participate for the achievement of an ideological goal. Thus Klandermans's analysis predicts that advocacy groups with a power orientation, but without additional material, ideological, or identity formation benefits, are unlikely to have significant member participation. All of the cases in this study appeared to have multiple orientations towards advocacy, and it is difficult to explain our findings from the motivational view point alone. An instrumental perspective on advocacy is perhaps more useful in explaining the emergence of the advocacy strategies of these organizations. Shakespeare (1993) notes that disability organizations may shift their focus to advocacy in an effort to increase their legitimacy and resources. In so doing, they may oppose the funding of new groups claiming to represent the same interests. In Canada, the decision made by disability advocacy groups (COPOH) and government in the 19805 to exclude emerging Independent Living Centre organizations from involvement in systemic and public advocacy activities is an example of this dynamic that perhaps reflects a power orientation (Valentine 1994). Phillips (1994) notes the instrumental difficulties that community advocacy organizations face in trying to balance the need for representation through lobbying by leaders and the need for member participation through collective action. Offe and Weisenthal (1985) and Melucci (1988) note a similar distinction between representation (indirect, deferred goal satisfaction, by leaders) and participation (direct, immediate, large investment of time, by members) which are both necessary in social movements. However, these strategies require different resources, types of knowledge, and organizational processes, and are difficult to balance. If a social movement organization chooses to pursue advocacy primarily through attendance at meetings, through the conduct of research, and through fundraising, it runs the risk of losing touch with the grounded passion and participation of its constituency. On the other hand, an advocacy strategy focused principally on public

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participation and collective protest brings the attendant dangers of diminishing effectiveness, reduced credibility of representation, and the alienation of more moderate supporters. The literature suggests that organizations do not necessarily choose one option over the other but develop strategies to allow both options to have a place. For example, national organizations such as COPOH may leave some participatory advocacy activities to local groups that can quickly mobilize public interest. However, there is a danger that lack of connection between national and local levels may divide issues into national and local responsibilities, with a resulting loss of influence. An alternative approach is to share responsibility for advocacy strategies in order to address the same issues at national and regional levels. This approach recognizes that political opportunity structures are operative as well (Tarrow 1989). For example, government interest, funding sources, alliances with other organizations, and existing structures of gender, class, and race relations may vary within a country and should be addressed at different levels of an advocacy organization according to the context. This intersection of structure (invitations and opportunities provided by existing conditions) and the agency of organizations (choices and opportunities which are made) is a major focus of new social movement theory (Scott 1990). Klandermans (1984) provides a structural typology of social movement organizations that leads to explanations regarding their reliance on local participants. An "isolated" social movement organization has no branches and relies on direct contact with its members. In its early days, BOOST was an example of this type of organization. In contrast, a "federal" structure has local branches with which it can interact in one of three different ways. A loosely coupled "network" structure (e.g., DAWN), which often results from a merger of pre-existing organizations, may have good coordination within a community. A "pyramid" structure (e.g., COPOH) has weak links between levels, with higherlevel organizations defining common goals, providing services to lower-level organizations, and giving advice to policy makers, all of which promote the unity and legitimacy of the movement. Local organizations in pyramid structures (e.g., PUSH) are relatively autonomous, diverse, and spontaneous. In "centralized" federal movement structures (e.g., CPA), local organizations are coordinated by a highly centralized national organization. Klandermans suggests that federal structures may be able to make use of local chapters, but there is no guarantee that local chapter officers will be able to mobilize local members, especially in loosely coupled network structures (DAWN). Movements with a pyramid (COPOH-PUSH) or centralized structure (CPA) are more likely to be able to mobilize local

154 A Seat at the Table officers; however, if they cannot do so they are worse off than a movement with an isolated structure, because the movement is cut off from its local constituencies and may face extinction (Boyce 1999). Thus, advocacy organizations that use a loose network structure may rely on grassroots mobilization in times of crisis. Those that utilize pyramid and centralized federal structures may be better able to take advantage of opportunities and claim legitimacy of group goals, but may be less able to respond rapidly. They face greater risks in the context of a rapidly changing funding environment. Preconditions for Policy Influence The fundamental importance of power, or relations of dominance between state, disability, and other groups was evident in these cases. As a background to discussing these expressions of power, it is useful to clarify certain power typologies. It is important in this discussion to emphasize the differences between the terms "influence" and "power." Influence only implies a contribution to the processes of information gathering, deliberation, and argument. Influence does not necessarily imply power or the ability to actually determine the outcome of a decision-making process (Pateman 1970). Contemporary power theories assume that power is relational rather than undimensional (Lukes 1974, Foucault 1979, Alford and Friedland 1985). When one actor dominates in a situation, other actors can resist the process in ways that may aid other goals such as identity formation. In this sense, power is not zero-sum and absolute, but relative and negotiable through processes of conflict and co-production (Susskind and Elliott 1983). Dubins's (1958) concepts of power are very helpful in explaining what happens in government policy making. He suggest that there are four types of power: technical, or knowledge-based power; formal, or coercive power, backed by force; non-formal power, or knowing how to work the system; and, informal power, or use of social connections. Most of these power forms were evident in the cases we studied. From a broader perspective, Lukes (1974) and Foucault (1979) suggest that different power processes can coexist at each level of analysis (individual-group, organizational, societal). In particular, Lukes's analysis of power processes suggests that, in any setting, a dominant group may exert control over a subordinate group in three ways: they may use force or authority to actively prevent others from occupying influential or authoritative positions; they may fail to act through non-decision, thus leaving in place obstacles and barriers that prevent others from exercising power; or they groups may construct and reinforce a

155 The Potential for Influencing Policy

hegemony, in which it becomes the norm for them to exercise power and for subordinate groups to be passive recipients of benefits. These dynamics can occur in any class, race, disability, or gender grouping. Assuming that power is relational, however, the non-dominant group may respond with a resistive challenge. Drake (1992) notes that certain preconditions are necessary for non-dominant participants such as disability groups to attain power. Our four policy cases illustrate certain local structural factors that are associated with these preconditions. First, consumer representatives in advocacy organizations must develop the personal capacity to actually resist power, especially in situations of force and authority. Structural factors that limit this personal capacity and impede progress include disability group marginalization and stigma. Second, disability groups must occupy organizational positions in which power can be exercised; they must have authority to counteract non-decision. Structural factors that facilitate their taking on these positions of authority include organizational structures such as credible membership rights, role mobility, leadership development, and various forms of access. Third, disability groups' organizational positions must be situated within norms and networks such that the exercise of power is effective and achieves its purpose, especially in hegemonic situations. Structural factors that facilitate the effective development of norms and networks include legitimate organizational mandates for representation, sufficient resources, and a managed role for professionals. Drake (1992) adds that participant power cannot be expressed if any of these local preconditions are absent. Political influence may be present, but not actual power. Our next section outlines other broad structural characteristics of the policy arena that are also critical for successful policy participation. CANADIAN DISABILITY

ORGANIZATIONS'

INFLUENCE IN POLICY MAKING

We reviewed earlier the various streams of social change theory that are relevant to participation of organizations in public life - Community Organization, Social Movement, Interest Group, and Political Economy theories. These structural theories have significant conceptual advantages in explaining trends and capacities in citizen participation, but all are limited in their usefulness for explaining the participation phenomenon in the area of policy making since they under-conceptualize the role of specific state actors. Neo-marxist political economy theories, in particular, assume a uniformity between state interests and bureaucratic motivations, which, as the Adult Guardianship

156 A Seat at the Table case showed, were in fact quite divergent. Numerous studies have demonstrated that significant variations occur across policy sectors even within a single country such as Canada (Coleman and Skogstad 1990). Skocpol (1985, 17-18) notes that "one of the most important facts about the power of the state may be its unevenness across policy areas. And the most telling result, even of a far-reaching revolution or reform from above, may be the disparate transformations produced across sociopolitical sectors." In the final section of our discussion, we will analyse some of the meso-level sectoral influences on citizen participation in the policy process. We use many of the definitions developed by Coleman and Skogstad in Policy Communities and Public Policy in Canada: A Structural Approach (1990). State Autonomy and Capacity in Policy Making In studying the participation of sectoral interests such as disability groups in the Canadian policy-making process, we should first examine two structural variables of the state itself. The concept of state autonomy refers to the degree to which state actors are independent from societal interests when they formulate policy objectives. During the period 1980-94, state autonomy was relatively low in the Canadian disability sector. Although political support for federal bureaucracy (Secretary of State Disabled Persons' Participation Unit) and provincial bureaucracies (e.g., Ontario Office of Disability Issues) was strong, clear, and consistent, societal values on disability had not yet emerged, and bureaucrats had few grounded skills in analysing problems from various disability perspectives (i.e., the impairment-medical model as opposed to the handicap-social model). Thus, the state was necessarily dependent on disability groups to articulate policy directions. This situation can be contrasted with the issue of gender, about which many bureaucrats had clear opinions based on their personal experience. Furthermore, since federal-provincial responsibilities in social welfare and employment training for persons with disabilities were in conflict, neither level had complete policy jurisdiction - another illustration of low state autonomy. Nonetheless, some government departments were penetrated by disability activists and their supporters. This form of influence meant that ministries had political mandates from their disability clientele, rather than having well-conceptualized functional mandates and self-contained expertise in disability issues. Finally, as the social model of disability gained popular credibility, the breadth of technical information required by bureaucrats to analyse policy initiatives increased exponentially. Government departments became dependent on key disability organizations, acting as thresholders,

157 The Potential for Influencing Policy

to assemble this information. Since it focused on issues such as social inclusion which were difficult to quantify, such information was considered "soft." Even fundamental tools for policy making, such as categorization of disability within the population, became obscured with criticisms of the standards expressed in the International Classification of Impairments, Disabilities, and Handicaps (ICIDH) on its release in 1980 (Fougeyrollas et al. 1998). An Ontario example that illustrates the low state autonomy in disability matters during this period was the need to convene the separate O'Sullivan Commission on advocacy issues to help disentangle issues of consent from issues of advocacy. State capacity, another structural variable in policy making, state capacity, refers to the ability of the state to draw on sufficient institutional resources to design and implement policies that will realize its policy objectives. Again, in the area of Canadian disability policy making, state capacity was relatively low during the period under study, since few officials had skills across the broad domain of disability issues. Disability had not been integrated as a cross-cutting theme in the way that gender had been integrated. Also, fewer financial resources were available for disability policy development in the latter part of the decade compared to the early 19805 (Phillips 1992). Finally, there was little capacity to coordinate the actions of participants in the policy-making process since there was no single government agency that dominated negotiations at either federal or provincial levels, and inter-departmental and federalprovincial committees were not fully functional. State autonomy and state capacity may occur together in policy making. However, they cannot themselves ensure an efficient and equitable policy process. The organizational development of societal actors is also important, especially when these actors are needed for problem identification and policy implementation, as they were in the Adult Guardianship case. Such webs of interdependence may constrain the effectiveness of state officials. Nonetheless, given that a Canadian disability bureaucracy, albeit relatively weak, was in place at this time, the potential for disability organizations to achieve their progressive policy goals was increasing, especially with symbolic non-monetary issues such as constitutional inclusion, consent, and decision-making. Why did these efforts eventually falter? We look to the structural elements of the disability organizations themselves for answers. Organizational Development of Disability Interests There are a number of roles that sectoral organizations may play in policy making. Policy advocacy involves approaching the state in a lob-

158 A Seat at the Table

bying role, outside the formal decision-making structures, to influence the nature and content of public policy. The success of advocacy in such an "outsider" role depends on the group's knowledge of the policy process and where it can fit in; on generating information (or options for consideration) about specific policies; on mobilizing political support for its proposals; and on maintaining internal member cohesion and pressure on public officials. Policy participation is an "insider" role which requires that a group not only develop the capacities of the advocacy role but also formalize its internal structures and assume a distinct organizational identity that will allow it legitimate access to formal decision making structures. The roles of policy advocacy and policy participation coincide when organizational development has occurred. Schmitter and Streeck (1981, 124) state that when organizational structures are more developed: "the more encompassing they are in purpose and scope; the more specialized and coordinated they are internally; the more safely their supply of strategic resources is institutionalized; and the greater their autonomous capacity to act and to pursue long-term strategies regardless of short-term environmental constraints and fluctuations." Such a highly developed situation may have occurred, for a brief time at least, in COPOH-CCD on the constitutional front. However, the cases in this book primarily represent situations in which policy participation, and not just policy advocacy, was the expected role for disability agencies. Two types of organizational development must be present for policy participation, to occur (Coleman and Skogstad 1990). First, the organization must be able to prioritize and coordinate a range of complex information and activities that allow it to arrive at, and express clearly, positions on sophisticated policy questions or options. This sophistication requires members who possess both narrow, specialized domains (e.g., single-group disability agencies such as the CNIB or CPA) and broad, representational domains (e.g., COPOH, BCACL, or OACL). Such a combination produces a highly differentiated system with subunits containing various interests and, to a degree, political perspectives, which are capable of producing the specialized information necessary for highly technical policy debates. Without such coordinated differentiation, an organization will be unable to provide the knowledge that is needed for active policy participation. Furthermore, organizations trying to participate with only a narrow knowledge domain may be set off against each other or may be reduced to assuming a policy advocacy role. The types of organizations that can integrate interests sufficiently to assume a broader policy participation role include single associations such as ARCH, which have a highly differentiated

159 The Potential for Influencing Policy

internal system with expert staff and executive structures capable of coordinating diverse concerns. Alternatively, a "sectoral peak" association such as COPOH (which is an association whose members are other associations) may be sufficiently differentiated through its broad membership to be able to speak for the range of member interests as well as to integrate and find a consensus among members through executive council mechanisms. The second type of organizational development that is a prerequisite for policy participation is the ability of a group to be sufficiently autonomous from its members to be able to transcend their short-term interests and take a longer perspective on policy while still guaranteeing member compliance. This autonomy depends both on the stability and diversity of the group's resources and on the development of a kind of monopoly status as an intermediary between the sector and the state. Associations that rely mainly upon disadvantaged members for resources (e.g., Ontario Advocacy Coalition) usually have a limited, unstable supply of funds and must constantly call on members and negotiate with them for financial support. These repeated appeals increase the accountability of an association to its members but lead to a decrease in leader autonomy, which would be needed for full policy participation to occur. In coalition activities, coalition members may resist assuming this accountability by failing to get formal approval from their agency for policy positions. They may end up representing only their personal views, a stance which usually limits their policy influence in the eyes of other actors. In situations in which advocacy groups have diverse sources of institutionalized resources (e.g., OMA), leaders are also able to have more independence. This independence may be facilitated by a publicly conferred legitimacy that derives from official recognition of a right to be a party to decision making (note that in the Ontario case, the OMA had to fight with the NDP government to be allowed to assume their traditional role). The attainment of such a public status becomes more likely when a group lacks competitors for representation of the interests of the sector. In the Canadian disability sector, this type of monopoly status has not yet been achieved by any organization because of the sector's traditional distinctions between types of impairment - physical, sensory, developmental, and emotional-cognitive. During the 1980 Charter discussions, COPOH was the principal consumer-directed disability organization at the table. By 1992, however, other disability agencies had gained strength and also demanded representation. In the final analysis, could one say whether there was a strongly developed or weakly developed disability sector during the period of this study? The cases in this book suggest a variation, depending on the

160 A Seat at the Table

issue and the timing. In an example of a weakly developed system that addressed consent and advocacy in the 19905 (Ontario), there was an unlimited number of specialized groups whose domains overlapped (OAC versus Ad Hoc Coalition, for example) and which competed with one another for members (e.g., the various groups representing persons with schizophrenia and their families). Groups were weakly linked together and there was no single organization able to coordinate the diverse interests of the sector. Some disability interests even remained outside the system on the advocacy issue (i.e., PUSH, COPOH'S Ontario affiliate). A weakly developed system of this nature lends itself to policy advocacy rather than to formal policy participation. With a more modest advocacy goal, groups could have maintained their own internal cohesion without needing to resolve conflicting policy objectives. As formal policy participants, however, their weak system presented problems for the bureaucracy that had to consult and accommodate several competing groups. Even then, it was difficult for officials to know who spoke for different interests and which group was most representative. In a more strongly developed system that was involved in a similar issue (British Columbia Adult Guardianship), groups were linked in ways that made the system more encompassing in scope and purpose. Groups were specialized and internally coordinated, balanced and secure in their supply of resources, and autonomous in their actions and capacity to plan for the longer term. Such systems are more likely to survive environmental pressures (e.g., the change of coordinators at PRAG) and more able to engage in strategic planning. The opportunity that PRAG presented to the state to bargain with a limited number of more strongly linked organizations made this grouping an attractive prospective participant in policy making to bureaucratic actors. These provincial cases indicate that well-developed organizational systems are better equipped to move beyond policy advocacy to policy participation and that the incentives to increase the level of organizational development should rise as a system becomes involved in policy making. The federal cases in this book also suggest, however, that a comparatively well-developed advocacy group in the 19905 (CCD) was less able to influence constitutional policy development (although still able to contribute to its blockage by referendum) than its comparatively more weakly developed predecessor in 1980 ( COPOH) . Schmitter and Streeck (1981) identify broad explanations for the organizational development of a sector: the logic of membership and the logic of influence. The logic of membership refers to the interests and motivations of individuals and organizations that bring them to join a sector. In the disability field, these motivations are characterized

161 The Potential for Influencing Policy

by a moderate consensus on deeper values (the debate on disability rights versus protection of persons with disabilities); the sense of collective identity (within a hierarchy of disabilities and invisible disabilities such as epilepsy and chronic fatigue syndrome); the size of the potential membership domain (under 15 per cent of the population); the geographical distribution of members (dispersed); the resource base of organizations (poor); and the nature of primary, informal social relations with others (stigmatized). In combination, these factors indicate a relatively low logic of membership and thus contribute to difficulties in establishing a cohesive disability sector in Canada. The logic of influence includes the mechanisms for affecting policy development, particularly the structures of significant institutions such as the state. In the disability field, there are relatively few complex, cross-sectoral structures that address disability issues. In contrast, in the gender field there are well-established structures such as women's directorates for dealing with women's concerns in education, employment, safety, and health. In the disability field, there are also disagreements on federal-provincial responsibility for particular problems. Disability advocacy groups prefer dealing with federal officials, partly because they have valuable political connections and partly because they adhere to a philosophical principle that demands portability of social benefits across the country. The dearth of disability organization personnel able to actively lobby and participate in policy development at the provincial level also encourages, for efficiency's sake, a focus on a single federal structure. We have already noted the relatively low autonomy and capacity of Canadian state actors in disability matters. It is important to add that these characteristics of the state, which are largely caused by a lack of clarity in federal-provincial responsibilities, also result from an expanded, yet unclear, understanding of the dimensions of disability issues revealed by the social model. This weak policy structure may in turn have shaped the organizational development of disability interests. The disability sector remains fragmented, under-resourced, and prone to pursue particular political connections rather than developing the breadth of skills required for full policy participation. Overall, the logic of influence for advocacy organizations in disability matters has been low. State policies may themselves have an impact on organizational development. For example, the trend in the igSos to support particular disability advocacy groups with core funding may have led to a dependent relationship with government that prevented groups from developing a broader coalition of disability interests. In addition, the everchanging preference of state actors for various forms of organizational

162 A Seat at the Table

development, which they are able to influence through funding envelopes, (from professionally led or advised groups, to grassroots consumer-majority groups, to more recent networks of consumers and providers) ensures that organizations need to continually evolve their structures at the expense of developing their policy capacity (Boyce, in press). On a more optimistic note, as the state withdraws from the social welfare approach, in which the state assumed responsibility for the less fortunate, in favour of the welfare society approach, in which care for the disadvantaged becomes a responsibility of all sectors (Crichton andjongbloed 1998), the disability sector may become less dependent on government funding, with the result that a broader coalition approach to social benefits may develop. Policy Communities and Networks

The previous discussion demonstrates the diversity in state-society relationships across sectors within Canada. In our efforts to understand these arrangements at a sectoral level, some concepts of particular interest emerged. Policy communities include "all actors or potential actors with a direct or indirect interest in a policy area or function who share a common 'policy focus,' and who, with varying degrees of influence shape policy outcomes over the long run" (Wilks and Wright 1987, 300). For example, within the disability policy field, the policy community includes those with interests from economics to health to education to law. According to Wilks, the "sub-government" part of the policy community is composed of government agencies, organized disability interest groups, and health, education and social welfare agencies, which are all policy participants. The "attentive public" is composed of relevant media, interested persons with disabilities, and professionals who attempt to influence policy and thus are policy advocates. Policy networks, on the other hand, are relationships that develop in the policy community on specific issues during the process of policy making (Coleman and Skogstad 1990). These exist as networks of individuals from various institutions, disciplines, and professions, and commentators within and outside government. Networks constantly exchange information about activities and ideas, provide a number of different fora in which early stages of opinion formation and consensus building can take place, and gradually diffuse ideas broadly, so that some of them reach government policy makers. Policy networks are more oriented towards action than are policy communities, and policy change may come about because a number of different members of policy communities initiate action on a particular issue. Policy

163 The Potential for Influencing Policy

networks are not always consensual, and there are occasionally competing coalitions within networks. In the Ontario case, for example, a network of those both for and against advocacy formed around the question of whether a system of public advocates should be put into place to safeguard the rights of at-risk persons with disabilities. The policy networks, or relationships, that form in working out policy issues have been explained using two different approaches. "Power dependence," which is largely based on functionalist interest group and social network theories, focuses on the integration of a policy network (Wilks and Wright 1987). A highly integrated network has stable relationships between its members, continuity through a highly restrictive membership, interdependence and shared responsibility for policy implementation, and insulation from other networks. A weakly integrated network has a less restricted and consequently less stable membership and a lower degree of organizational independence, and is more open to influences from outside the network. Despite the fact that the disability cases in this study often assumed the shape of weakly integrated networks they were able, at times, to achieve significant policy influence. Concepts of power dependence may be helpful in analysing policy networks that share a similar policy perspective, but they are not necessarily useful in analysing policy networks where substantive disagreements occur, as in the Advocacy case in Ontario, for example. An alternative approach to explaining policy networks focuses on the structural properties of state agencies and organizational interests. As mentioned earlier, state autonomy and coordinating capacity, or the ability of the state to concentrate its resources and expertise in making decisions, are key concepts in policy making. The relative centralization of state agencies, or the presence of effective inter-departmental committees, is a useful indicator of state capacity. The development of sectoral interests is also a key indicator of societal capacity to engage in policy participation. Although all types of networks may exist in the general Canadian policy community, the disability sector appears to be characterized by fragmented state authority and a low level of development of organized interests, in comparison to other sectors such as business or labour. This combination of dispersed state authority and a weak consumer system that is unable to coordinate the multiple, specialized groups competing with one another, can result in a mode of group-state relations in which groups approach the state independently, often competing for attention and policy preference. There are a number of types of policy networks. A "pressure pluralism" network occurs when state agencies have the capacity to be autonomous, for example on constitutional issues, and a policy advocacy role is allotted to the interest group (for example, in the Patriation

164 A Seat at the Table

case). However, when state autonomy is less developed, or when penetration of the bureaucracy by ideologically motivated sectoral supporters has occurred, state officials may be unable to distinguish themselves from organized interests (for example, in the case of the Ontario NDP government). The state bureaucracy becomes dependent on disability organizations both to supply information and expertise and to ensure member compliance in not embarrassing the government, and offers them in exchange an opportunity to participate in the policy process. This network mechanism is termed "clientele pluralism" and has been noted also in the pharmaceutical and health sectors in Canada (Atkinson and Coleman 1985, Boase 1982). Finally, "state-directed" networks can arise when sectoral interests are very weak and when the state benefits by the creation of a special interest group. Phillips (1994) notes this dynamic in the development of women's, multicultural, and official language minority groups in the 19803 as a counter to the Quebec separatist movement. During this same period, federal support for the development of disability groups mushroomed, although this expansion also created resource dependency for the larger groups. This dependency may then have had serious repercussions on the policy position that disability organizations were pressured to take. For example, the refusal of disability organizations to accept what they saw as their exclusion from the Charlottetown Accord, which in effect helped to defeat the measure in the referendum, may have been interpreted as a betrayal by the constitutional bureaucracy and resulted in longer-term difficulties in gaining state financial support. Coleman and Skogstad (1990) note that the concepts of policy communities and policy networks cannot explain all the dynamics in any particular setting, and there are numerous hypotheses yet to be investigated. First, policy communities may become institutions in themselves and develop integrated values, norms, and beliefs that shape policy networks and eventually policy outcomes. Individual participants' understandings of the rules of the policy game develop only gradually, however, and thus their organizational responses are not always predictable. As well, the strength of deeply held belief systems in state and disability organizations, for example belief concerning the capacity of people with disabilities to fully participate in policy development, must also be considered as a force that influences their actions. Second, different types of policy networks may exist within the same policy community, as they did on the issue of vocational rehabilitation versus substitute decision making, for example. Allies on some issues may become opponents on others. Finally, the changes in some types of policy networks over time, for example between 1980 and 1992 in the area of

165 The Potential for Influencing Policy

constitutional negotiations, illustrate the dependency of policy dynamics on larger political, economic, and social priorities in the country. Our concluding chapter proposes some guidelines and recommendations, aimed at both state interests and disability organizations, to help increase the participation of persons with disabilities in the policy-making process.

i o Recommendations for Research and Strategy

FUTURE RESEARCH ON POLICY PARTICIPATION

In preparing this study we used the sociological perspective of structuralism to examine the complex phenomenon of citizen participation in disability policy development. The broad view of structure that we adopted proved to be relevant as it allowed the exposure of important structural barriers that were not evident in the literature. There was ample information available in the study cases about structural conditions for citizen participation, much of which was received unsolicited from respondents, although it was at times difficult to substantiate these data. Simultaneously, respondents offered views on their policy participation that could be interpreted from the perspectives of personal empowerment or satisfaction and group interaction dynamics, although these were not fully explored. A comprehensive study of structural and non-structural factors in policy participation would be useful to further examine the links between structure and agency. At this time, the further development of structural models of policy participation is needed in order to assist researchers in exploring practical and theoretical issues in this field. We have posed a number of preliminary hypotheses that can be elaborated through social change theories and inserted in these models. Models may then be used for the prediction of success in policy participation and perhaps to inform the development of new participatory mechanisms. Although a case study approach was useful in identifying structural factors in participation, it was limited in its inability to demonstrate

167 Recommendations for Research and Strategy causal relationships in a generalizable manner. It is important that future research on policy participation be conducted with methodologies that are generalizable to a variety of settings and can thus provide more ample theoretical explanations. Finally, it is crucial that the social change outcomes, or long-term effects, of policy participation be examined through longitudinal studies. This future research agenda will require both qualitative methods and valid and reliable survey instruments, some of which may be developed from the factors identified in this study. IMPLICATIONS FOR POLICY DEVELOPMENT

We were impressed that, in spite of the moderate success achieved by the disability organizations in these cases of policy making, respondents were receptive to this study and interested in learning more about policy participation. Their ideals about participatory principles were still strong, although they expressed particular concerns about how to access policy communities and networks and how to prevent cooptation in light of significant power and resource inequities between policy participants. Our findings lead to a number of strategic recommendations for strengthening the participation of disability organizations in policy development, which are applicable to both the state and the disability community and may modify certain structural factors identified as obstacles in this study. These recommendations are grouped according to their audience - policy makers or disability organizations. More practical suggestions may need to arise from consumer organizations themselves, in consultation with advocacy organizations for other disadvantaged persons. For Policy Makers:

Policy Coordination The Canadian federal form of governance is intended to provide some coordination of national and provincial health and social policies, although this coordination is decreasing with diminishing federal fiscal responsibility in the area. The current overlap and confusion of responsibilities for disability policy needs to be resolved so as to allow a more appropriate concentration of disability advocacy efforts. An ultimate strategy would be to shift disability from being a sectoral concern (such as health, education, and welfare) to being a cross-cutting theme in all ministries, as is the case with gender, environment, and poverty policy. The equal involvement of disability organizations should be a fundamental condition of fora for disability policy making. To achieve the

168 A Seat at the Table legitimacy that this status represents, the state's current emphasis on disability organization structures that promote accountability and "representativeness" over "representation" should be revised. Resource Allocation Policy development that is intended to address the needs of disadvantaged groups such as persons with disabilities is a long-term task. Funding policies must allow sufficient resources to increase the actual participation of grassroots community leaders and to maintain the viability of community organizations over prolonged periods of time. Such an approach, however, runs counter to the shortterm commitment of government funding in this area. Special supports must be provided to enhance the effectiveness of the participation of citizens with disabilities. Training in participation and group management skills for community leaders should be a priority, along with developing leadership skills. Access costs (interpretation, translation, attendant care, transportation) should be treated as legitimate expenses of participation, but the need for them should be documented clearly and the implementation of such supports should be evaluated fully (Broadbent 1999). Roles of Professionals and Consumers Cooperation between persons with disabilities and other non-state actors is fundamental in policy making in the disability sector, which is affected significantly by professional, bureaucratic, and service agency priorities. Some professionals demonstrate that they have a genuine interest in the participation of disability organizations in policy development. Indeed, an increasing number of persons with disabilities are entering professional careers, although the resulting dual roles can occasionally cause conflict (Boyce 1999). Considering professionals' prevailing influence, which is likely to persist in dealing with physical or mental impairment and functional aspects of disablement, professional organizations should continue to be involved through a more equal partnership with disability organizations in policies that are relevant to these functional concerns. In the area of social handicap, or social participation as it has become known in the new international disability classification system (WHO 1997), professional agencies should accede to the insights of disability organizations. For Disability Organizations: Policy Education and Strategy Development Disability organizations and their members need to further their understanding of the nature of

169 Recommendations for Research and Strategy the policy arena and the different stages of policy making (getting on the agenda, formulation, and implementation). Having a clear grasp of these fundamentals would help organizations to decide on the most effective tactics and alliances, and whether to act as insider, outsider, or thresholder organizations. For example, if an organization wants to be involved in all of the stages of policy development, starting at the first step of getting an issue on the agenda, then they may need to avoid alienating officials and embarrassing the government, as an outsider organization might do. Alternatively, organizations could publicly pressure the government, but once the issue is on the agenda try to switch to being a partner with government. Maintaining an entirely adversarial position throughout the entire process of policy development may not be fruitful. Organizational Structures and Control The marginalized disability community has a difficult task in balancing the needs of individual members with those of a transformative political agenda that requires a disciplined mature organization willing to make compromises. A grassroots focus may not be possible at all levels of an organization. However, organizational control by consumers through membershipbased governance models must be a condition of their participation and should be self-monitored by the disability community. Simultaneously, more efficient methods of internal communications need to be developed within disability organizations to allow their representatives to determine the group consensus on policy issues and not be limited to representing their individual views in policy fora. Policy Networks and Advocacy Disability organizations should overcome their reluctance to engage, and form alliances with, able-bodied actors in the policy arena. The leadership of disability organizations in a policy network would allow disability perspectives to become more widely known and illustrate their similarities with those of other marginalized groups. Advocacy organizations should use the multiple forms of citizen participation that are available - direct forms (interest groups, face to face, lobby groups) and indirect forms (voting, campaigning for candidates or parties, joining political parties) - to achieve their goals. There should also be an increased emphasis on the use of alliances and networks in policy development to allow a focus on the broader social-structural determinants of health (for example, gender, environment, and poverty) that affect both persons with disabilities and able-bodied alike. The potential of international alliances with disability organizations such as Disabled People's

i yo A Seat at the Table International, UN agencies, trade unions, human rights organizations, and international professional organizations should be pursued since these bodies often have a stronger influence on the federal government. These organizations can provide tactics, resources, and advocacy as well as moral authority, especially since the federal government is signatory to international conventions such as the UN Standard Rules on Disability.

Notes

INTRODUCTION

i Disability terminology has historically been used to focus on the impairment (for example, blind man) rather than the person (man with limited vision). Disability organizations have preferred that the term "people with disabilities" be used, as it keeps the focus more appropriately on the person. However, this convention varies by location. For example, disability advocacy groups in the United Kingdom support using "disabled persons" to denote the disabling effect of society on individuals with impairments. In this volume, we use the standard North American term "people with disabilities." CHAPTER ONE

1 The history of the asylum movement in Canada followed closely on the American experience. The numbers of individuals housed in institutions grew throughout the first half of the twentieth century and began to decline only in the 19608. 2 The term "Workmen's Compensation" was used in most Canadian legislation until the i g8os. 3 The Ontario model influenced the subsequent development of legislation in other Canadian provinces. There is no historical record that workers with disabilities were involved in the lobbying activities of labour unions for this early legislation.

172 Notes to pages 16-44 4 During the 19708, recognizing the impact of aging on veterans with disabilities, the association successfully lobbied the government to establish the Veterans' Independence Program ( V.I.P.) to ensure that veterans with disabilities could remain in their own homes as they grew older. This program offers the most comprehensive range of services and benefits for older adults in Canada. CHAPTER TWO

i Committee membership included representatives of all provincial governments, the three federal departments, the medical profession, organized employers groups, organized labour, universities, and health and welfare voluntary groups. The five representatives were Baker, Counsell, Dunlop (now representing the Arthritis and Rheumatism Society), Elizabeth Govan from the Canadian Welfare Council, and R.W. Hopper of the Ontario Society for Crippled Children. CHAPTER THREE

1 In addition, the "Hays-Joyal Committee," or the Special Committee of the House of Commons on the Disabled and Handicapped, was created in 1980 to consult with disability rights groups about social policy. See Bickenbach, "Equality Rights and the Physically Handicapped," 332-41 for an overview of the events between 1980 and 1982, in Bayefsky and Eberts 1985. 2 The overview presented here is indebted to Russell 1993, chap. 7; Romanow et al. 1984, chap, i; and Simeon and Banting 1983, introduction. 3 (Romanow et al. 1984, i) Russell errs when he writes that it would "take the election of the Parti Quebecois to power in Quebec in November of 1976 to quick-start another round of mega constitutional politics" (Russell 1993,92) because this statement falsely suggests that nothing was going on with respect to constitutional negotiations prior to the Parti Quebecois's rise to power. 4 See Russell 1993, 93-7, for a more detailed overview of these factors. 5 The legal cases referred to here are C.I.G.O.L. Ltd. u Saskatchewan (1978) 2 s.C.R. 545; Central Canada Potash Co. Ltd. u Saskatchewan (1979) i s.C.R. 42 (Russell 1993, 96). 6 For a discussion of the case and its long-term significance, see Berger 1981, chap. 8. 7 See Romanow 1984, 2-4 for further details on Trudeau's 1976 draft proclamation and its similarity with the Victoria Charter. 8 According to Romanow, the agreement on these issues was later reaffirmed at a First Ministers' conference in Regina in 1978, despite the federal

173 Notes to pages 45-60 government's dissatisfaction with these decentralizing proposals (Romanow 1984, 10). 9 University of Toronto. Options Canada Toronto: University of Toronto Press, 1977. 10 Russell 1993, 100; Romanow 1984, 8-9. 11 See Russell 1993, 100-1 and Romanow, 1984, 8-10 for details. 12 In the Charter of Rights and Freedoms, mobility rights do riot refer to any rights associated with persons with disabilities. They refer exclusively to the right to live anywhere a citizen desires in Canada. 13 See Russell 1993, 101-15 andRomanow 1984, 13-22 for fuller discussion of the constitutional conferences. 14 See Romanow 1984, 24-54 for a review of the contents of this draft. With respect to the Charter of Rights and Freedoms' proposals central to the federal government, there was no mention of equality rights for specific groups. Indeed, according to Romanow, the overriding concerns were official language and minority education rights (43-5). Moreover, the final report of the Pepin-Robarts Task Force, "A Future Together," which was released in January 1979, did not express views on additional rights of freedoms, or mention equality rights for specific groups. 15 Russell 1993, 114. See Sheppard and Valpy 1982, for an overview of advocacy group activity in this context. CHAPTER FOUR

1 The authors interviewed eight persons in Winnipeg and Toronto to gather information for this study. 2 Simpson, Allan, interview, lojune 1995. 3 Dirkson, Jim, interview, njune 1995. 4 Ibid. 5 Lepofsky, David, interview, 16 August 1995. 6 Simpson, lojune 1995. 7 Dirkson, iijune 1995. 8 Peters, Yvonne, interview, 12 June 1995. 9 Ibid. 10 Dirkson, iijune 1995. 11 Ibid. 12 Simpson, lojune 1995. 13 Dirkson, iijune 1995. 14 McCormick, Shawn, interview, 14 August 1995. 15 Peters, 12 June 1995. 16 Ibid. 17 McCormick, 14 August 1995. 18 Ibid.

174 Notes to pages 60-73 19 20 21 22 23 24 25 26 27 28 29 30 31 32

Simpson, lojune 1995. Peters, 12 June 1995. McCormick, 14 August 1995. Dirkson, njune 1995. Lepofsky, interview, 2 September 1995. Ibid. Peters, 12 June 1995. Lepofsky, 2 September 1995. Ibid. Peters, 12 June 1995. Lepofsky, 2 September 1995. Simpson, lojune 1995. McCormick, 14 August 1995. Peters, 12June 1995. CHAPTER FIVE

1 The authors interviewed nine persons from Winnipeg, Toronto, and Kingston for this case study. 2 In addition, on 25 July 1990, a group of independent MPS in the federal government announced the formation of the Bloc Quebecois, the goal of which was to act in Parliament in the interests of a sovereign Quebec. 3 We are indebted to Russell (1992) and Reid (1991) for their analyses of events chronicled in this chapter. 4 Lepofsky, and Bickenbach (1985); Lepofsky 1986, 323-40; Lepofsky 1986; Kallen 1988; Kallen 1989; Driedger 1989, 70; Bickenbach 1993. 5 See also reference to Canadian Association of Community Living Brief in Kallen (1988). 6 See also Filmon (1989); Devine (1990). 7 CDRC, (Canadian Disability Rights Council), COPOH (Coalition of Provincial Organizations of the Handicapped), and DAWN Canada and DAWN Toronto (DisAbled Women's Network), Disabled Peoples' Statement on Constitutional Clause. (8 June 1990). 8 See also Watts 1992, 10. 9 The committee noted that it also heard from other individuals with disabilities including deaf Aboriginals, deaf-blind people, people with developmental disabilities, women with disabilities and people with physical disabilities. Select Committee on Ontario in Confederation 1991. 21. 10 The brief referenced previous documents from: David Baker, of the Advocacy Resource Centre for the Handicapped, and the Coalition of Provincial Organizations of the Handicapped Position Paper on Constitutional Challenge (August 1991); McLellan, A., (May, 1991) Women

175 Notes to pages 74-88 and the Process of Constitutional Reform . Alberta Advisory Council on Women's Issues; and R. Weiler, (March, 1991) Canadian Council on Social Development: Social Rights Strategy. 11 Report of the Special Joint Committee on a Renewed Canada (Ottawa: Supply and Services Canada, 4-11-1991) 15-16. 12 Arsenault, F. (1995) interview (21 April) 19-20. 13 Arsenault, F. (1995) interview (21 April) i. 14 Peters,Y. (1995) interview (i2june) 5. 15 Ibid., 5. 16 Arsenault, 1991, 10-11. 17 Peters, 1995, 6. 18 Interview with Laurie Beachall, (8 June 1994), 6. 19 Ibid., 7. 20 Harcourt, M., premier of British Columbia, (1992) Letter to The Right Honourable Joe Clark, (13 October). Also see letters from Roy Romanow, Premier of Saskatchewan, (5 October 1992). 21 Filmon, G., premier of Manitoba, (1992) Letter to Francine Arsenault, Chairperson, Coalition of Provincial Organizations of the Handicapped, (20 October). Letters were also sent by Don Cameron, Premier of Nova Scotia, Don Getty, premier of Alberta, Mike Harcourt, premier of British Columbia, Roy Romanow, premier of Saskatchewan, Frank McKenna, premier of New Brunswick, 22 See also press releases from provincial organizations: Ontario March of Dimes, (1992); Saskatchewan Voice of the Handicapped, (1992); and Globe and Mail, (22 October 1992); Winnipeg Free Press, (26 October 1992). 23 Interview with L. Beachall, (8 June 1995) 7. CHAPTER SIX

1 Patrick Worth, Co-Chair of the Ontario Advocacy Coalition and Past President of People First Ontario speaking before the Ontario Standing Committee on the Administration of Justice, 20 February 1992 (Hansard j-iggq). 2 The authors interviewed seven persons in the Toronto area who had been active in this policy issue. 3 A power of attorney involves the designation of a proxy, a trusted individual or group of individuals who are to make decisions for a person after he or she becomes incompetent. It is one kind of advance directive. Another is the living will, a document whereby a person, when competent, issues more or less specific instructions as to what kinds of treatment or care he or she wishes to have, under certain conditions, when he or is no longer competent to decide. These two forms of advance directive can be combined: a person can designate a proxy with specific instructions concerning his or her care.

176 Notes to pages go-log 4 In this context, a vulnerable adult refers to "a person who, because of a moderate to severe mental or physical disability, illness or infirmity, whether temporary or permanent and whether actual or perceived (a) is unable to express or act on his or her wishes or to ascertain or exercise his or her rights, or (b) has difficulty in expressing or acting on his or her wishes or in ascertaining or exercising his or her rights." Advocacy Act, igga (section 2) 3. 5 LeBlanc, B., interview 13 April igg5, 2. 6 Ibid., 4. 7 Fram, Steve, Personal communication, 24 March igg48 Spindell, Trish, interview, 24 May igg5, 3. g Ibid., 4. 10 Cole, Audrey, interview, 15 July igg511 LeBlanc, 6. 12 The act now reads, "people perceived to have a disability." 13 See Bill 74, sections 17(1) and (2), and i g ( i ) for the provisions reflecting this concern. 14 A pre-validated power of attorney is a power of attorney legally ratified and authorized prior to any onset of incapacity. In other words, it is a legally sanctioned advance directive that comes into effect when someone becomes incapable to make decisions for him- or herself. 15 See The Globe and Mail, Tuesday i March igg4, Ai, A6. 16 o ACL Official Brief for the Standing Committee on the Administration of Justice , August igg2,g. 17 See the presentation of the Ad Hoc Committee (who represented the Ontario Friends of Schizophrenics among others) on the Advocacy Act, Substitute Decisions Act and Consent to Treatment Act, 11 August igg2 (Hansard, j-i 5g). The Ontario Friends of Schizophrenics also complained about their lack of consultation in the presentation they made to the Standing Committee in March iggz. LeBlanc also suggested that the OMA was shut out of consultations at this time (Interview, 13 April iggs). CHAPTER SEVEN

1 The authors interviewed twenty-three persons, primarily from Vancouver and Victoria, for this case. The number of interviews was higher than in other cases, as the policy process was in full swing at the time of interviewing. The authors also attended coalition meetings and briefly interviewed a number of people in attendance. 2 Doherty et al. (i gg3) say that this legislation is based on the Imperial Lunacy Act of 18go which can be traced back to the lunacy laws of Edward II of England, in which the Crown took charge of the property of those who could not look after it for themselves.

177 Notes to pages 110-12 3 Alberta had reviewed and amended its Adult Guardianship legislation in 1982. 4 Etmanski later became Executive Director of PLAN (Planned Lifetime Advocacy Network), an organization that helps parents of children with mental handicaps to work out plans for the future of these children when the parents can no longer take responsibility for their care. In working on Adult Guardianship legislation, however, he defined himself as a parent of a child with Down's Syndrome rather than as a professional social worker and agency manager. 5 This committee consisted of two representatives of the Office of the Public Trustee, two from the Ministry of Health, and one from the Ministry of the Attorney General. The terms of reference of this committee were: a) to thoroughly research the relevant issues, drawing upon the work and experience of groups and individuals within the province and from other jurisdictions; b) to develop a working paper identifying issues and principles on which these issues should be addressed and a framework to address issues and develop solutions for review with Deputy Ministers of Social Services; c) to seek public input on issues and possible program, policy and legislative solutions through a public review process approved by the Deputy Ministers; d) to develop a report for review by the Deputy Ministers ... and Cabinet Committee on Social Services which recommends program, policy and legislation changes; e) to report recommendations and prepare an implementation plan for consideration by Cabinet. 6 Barbara Lindsay developed this survey with the help of Rob Gordon. 7 At this time community input was regarded as input from any individual who wished to attend PRAG discussion sessions. 8 i That the primary objective is self-determination (Freedoms protected by the Charter of Rights and Freedoms were listed); 2 That all have the right to be free of abuse, neglect and victimization; 3 That there should be a presumption of capacity; 4 That an individual should be enabled to make decisions; 5 That appropriate supports would diminish the need for legal intervention; 6 That the law should be a last resort; 7 That the least restrictive and least intrusive alternative should be used; 8 That all procedures, protocols and processes developed should be accessible; intellectually, psychologically, physically, culturally and financially. 9 Gordon, R., interview 6 Jan. 1994, 2. i o First, the system included: 1 reviewing and trying alternatives (such as advocacy and support networks); 2 procedures for dealing with health care emergencies, abuse and neglect situations, and "enduring" powers of attorney;

178 Notes to pages 112-14

11

12

13

14

15

3 a process for initiating more substantial interventions through needs and capacity assessments. Next, using Quebec's three-tier model of court interventions, to determine one of the following alternatives: 4 take a minimalist position; 5 appoint an associate or substitute decision maker; 6 appoint a guardian; Finally: 7 build in periodic reviews for easy change of status The Framework Document developed the ideas that had been under discussion so far: 1 Registered Natural Support Networks; 2 Assistance, Support and Advocacy; 3 Abuse, Neglect and Self-Neglect; 4 Consent to Health Care; 5 Assessment of an Adult's Capability to Make Decisions; 6 Assessment Tools; 7 Due Process, Mediation and Court Processes; 8 Substitute Decision Making; 9 Office of the Public Trustee and the Substitute Decision Maker, Relationship to Advocates. Government Representatives: Myrna Hall, Public Trustee; Gerrit Clements, lawyer, Attorney General's Department (Government's legal advisor on health matters); Garry Curtis, Chairman of Mental Health Act Review Committee and Executive Director Policy Planning and Legislation, Ministry of Health; Mark Perry, lawyer, Office of the Public Trustee. PRAG Representatives: Rob Gordon, criminologist, professor at Simon Fraser University; Al Etmanski, social worker, BCACL executive director (father of daughter with mental disability), Pearl Mackenzie, executive director, North Shore Community Services, elder abuse expert, Chloe Lapp, coordinator, PRAG office. Although Al Etmanski is a social worker by training he defines himself as the father of a daughter with Down's Syndrome. Managers of community agencies were not defined as professionals in the sense used above. The community representatives saw the following as alternatives to the Public Trustee's services: alternative support networks - advocacy and other support services; pre-planned services; clarification of the law relating to substitute consent to health care and the use of temporary substitute decision makers. Gordon and Verdun Jones (Gordon and Verdun-Jones 1992-94) have described the form that the implementation stage in British Columbia took in early 1994 after the participants had begun to recover from the implemen-

179 Notes to page 115 tation conference debacle. They delineated the fundamental principles of reform in Adult Guardianship legislation as follows: The legal and social relationship known as guardianship is an extreme form of interference in the life of an adult and should be used only as a last resort. It should involve the least restrictive, intrusive, stigmatizing, and dispoweringmode of intervention necessary to meet an adult's needs, which reflects an adult's wishes to the maximum possible degree. The need for intervention, the level and form of intervention and an adult's wishes should be ascertained through a multi-disciplinary capacity and needs assessment. If the need exists the adult should be assigned by a competent and caring individual or agency, under a clear duty to follow a prescribed philosophy and fulfill prescribed tasks, appointed following a procedure consistent with the Charter of Rights and Freedoms in an accessible, helpful, friendly, but rigorous forum. 6-38. This set of interlocking assertions attracted widespread support and reflected a reasonably unified vision of new guardianship legislation and systems. Gordon and Verdun-Jones also set out the potential choices in implementing new guardianship legislation. They suggested that there is a continuum between a strictly legal and a more flexible social work model of intervention. This continuum focuses on the difference between juridical and physical needs. The intervention may be reactive or proactive. 16 The purposes of the Coalition to Implement Adult Guardianship Legislation were as follows: to be a vehicle for the people immediately and critically affected by Guardianship Legislation; to protect the vision and principles associated with the community mission; to ensure a community building focus on all relevant issues of implementation of guardianship legislation; to represent community-defined interests with government; to promote community-based alternatives to formal guardianship structures; to ensure the independence of the evaluation process; to enable citizen involvement in policy making with government; to facilitate the development of a framework for the independent evaluation of the adult guardianship system. 17 The Coalition criticized the existing system in the following terms: It is archaic in its attitudes (for example in assuming that the state has a better understanding of the "best interests" of vulnerable citizens than families or friends); it is an intrusive form of intervention; it takes an all or nothing approach; it protects the estate rather than the person; there is inadequate provision of personal care by the Public Trustee's office when the Trustee is the guardian; it is not good at assessing mental incompetence; instruments are inadequate, settings for doing the testing are not properly considered, court proceedings are complex and costly; nor do procedures seem to be fair; the provision of mental health services has completely changed but a new relationship between mental health legislation and guardianship has

180 Notes to pages 115-21 not yet been worked out; there is little forward planning (though British Columbia is the only province where a guardian can be nominated in advance) ; there are no specific rules about conducting the guardianship role and no plans have to be submitted; finances only are audited; health care substitute decision making (to ensure informed consent) is unresolved; abuse and neglect are ill-defined; there have been changes in Human Rights legislation, but guardianship has not yet been challenged. 18 PRAG had been anxious to maintain its independence from government funding and had raised money from other sources. But after the legislation was passed the Coalition sought public funding and was able to get administrative funding in a special grant from the Attorney General while the Office of the Public Trustee provided conference and project funding until March 1996. 19 Several of these resigning members were reappointed as consultants to the OPT.

20 The new Public Trustee, who was recruited from outside the provincial bureaucracy, was an experienced manager of volunteer organizations who had worked at the British Columbia Neurological Institute and, earlier, at BCACL. 21 The Report on Representation Agreements said: "It is clear from the workshops that the community supports the idea of Representation Agreements. However, if they are to be used they need to be accessible, that is, simple, flexible, inexpensive and responsive to a variety of individual needs. The new law emphasizes the importance of self-determination, supported decision making and the least intrusive means of support. The workshop participants felt strongly that these principles should continue to guide future discussion of unresolved issues and the implementation process" (Coalition 19940, 11). 22 The Coalition suggested that a partnership agreement should be based on the following principles: equal access to information; shared decision making; shared accountability and responsibility; regular and independent evaluation of implementation. 23 Information from Stephen Kline, Chairman of PRAG Steering Committee. 24 According to Geri Hinton, the official responsible for developing seniors' policy and services for the British Columbia government. 25 The Proposals were intended: to determine the priorities for the implementation period, to identify the commitment and abilities of organizations, individuals, and government ministries to assume leadership for priority implementation areas; and to develop sustainable structures for partnership and coordination of the activities of implementation. 26 This approach emphasizes: a phased-in implementation, rather than pilot testing; decentralized planning and service delivery; community control; use of a community development process; independence from the Office

181 Notes to page 123 of the Public Trustee; and maintenance of the original vision of the "How Can We Help?" document. 27 BRITISH COLUMBIA GUARDIANSHIP LEGISLATION The British Columbia guardianship legislation is best understood as an integrated package of statutes. The most significant difference between the new legislations in Ontario and British Columbia is with respect to advocacy. Although the British Columbia legislation makes provision for advocacy and rights advice, there is no equivalent to the Ontario Advocacy Act and, therefore, no provision for an organized province-wide advocacy system. Nonetheless, a system of community driven policy implementation may achieve the same goal of reduced bureaucratic influence in the lives of persons with disabilities. The Representation Agreement Act This Act repeals those sections of the Power of Attorney Act that create enduring powers of attorney and replaces them with a new and vastly expanded scheme of preplanned personal representation in the event of mental incapability. Representatives may be nominated and empowered to make the full range of personal and healthcare decisions and to manage a person's financial affairs, property, and assets (ss. 2-11). Agreements must be executed in writing and registered in order to be valid (ss. 13 and 14). A person empowering a representative may specify an event or events that will trigger an agreement and may nominate a monitor to oversee the activities of a representative (ss. 12 and 15). Representatives are placed under a set of statutorily prescribed duties which, in the main, reflect the common-law duties of agents and trustees (ss. 16 and 17). The Act makes provision for changing and revoking agreements and for a system of objection and mediation in the case of concerns and disputes about the way in which a representative is acting (ss. 27-30). The newly created Office of the Public Guardian and Trustee (previously the Public Trustee) is responsible for providing assistance, advice, and mediation, and for monitoring the overall scheme (ss. 30, 31 and 34). The Adult Guardianship Act This Act repeals and replaces the Patients' Property Act. The Act contains two main parts, Part 2 dealing with courtordered guardianship, and Part 3 which provides for intervention in abuse and neglect cases. The other parts (i and 4) contain a variety of procedural, transitional, and consequential provisions. Part 2 provides for reviews of need and assessments of incapability in the case of adults (persons nineteen years of age or older) who are believed to be in need of a decision maker or guardian, the procedure for applying to the court for the appointment of decision makers or guardians, and the types of orders that can be made by the court. A distinction is drawn between associate decision makers, substitute decision makers, and guardians. The areas of power and authority that can be given to a decision maker or guardian by the court

182 Notes to page 123 are prescribed in the Act (along with limitations), as are the duties and responsibilities of a decision maker or guardian. Orders are subject to periodic review and the court may remove or replace a decision maker or guardian for cause. Provision is made for a streamlined process for changing and terminating orders where there are no objections. There are many other related provisions including those dealing with the resealing of orders made in other jurisdictions. Part 3 is the approximate equivalent of the adult protection legislation found in the Atlantic provinces. This Part provides for intervention in cases where people with mental or physical disabilities are experiencing abuse or neglect (including self-neglect). The reporting of abuse and neglect cases is voluntary but, where reports are received, they will be responded to by designated community organizations empowered to conduct investigations. Any intervention is to be gradual (except in emergencies) and based upon the provision of voluntarily received support, assistance, and services. If this kind of help is needed but not accepted and the adult is mentally incapable of making such a decision, the Provincial Court may order that services be imposed for short periods of time (up to six months). Orders may include provisions restraining the activities of persons responsible for abuse. The Public Guardian and Trustee Act This Act repeals and replaces the Public Trustee Act, but many of the provisions found in the latter are retained. The Office of the Public Guardian and Trustee is established, as is an advisory board (ss. 2-4). The Act sets out the powers, duties, and functions of the Office which include urgent and non-urgent investigation powers with respect to trusts, decision makers, guardians, and representatives (ss. 5-7 and 17-19). The jurisdiction of the Public Trustee with respect to infants, mentally incapable adults, and deceased estates is not changed. The Act provides for a variety of accounts, funds, and investment powers related to the operations of the Office (ss. 8-16, 23 and 24). It establishes an investment advisory committee (s. 10). There are a variety of other provisions dealing with audits, accountability, and evaluations (ss. 22 and 25-27). The Health Care (Consent) and Care Facility (Admission) Act Like its proposed Ontario counterpart (Consent to Treatment Act, supra) this Act is a sweeping and long overdue consolidation of the law with respect to consent to health care and residential care. It applies to persons nineteen years of age or older. Part 2 modifies and codifies both customary practices and the common law of consent, sets out the test of incapability to consent, and details what a practitioner is to do if a patient needs health care but is incapable of giving consent (ss. 4-15). Provision is made for emergency treatment without consent (s. 12). The duties, powers and general

183 Notes to pages 123-6 responsibilities of a substitute decision maker are detailed, as is the procedure for selecting a decision maker (e.g., a patient's representative or a near relative) (ss. 16-19). Part 3 of the Act modifies and codifies customary practices with respect to the admission of adults to a wide variety of "care facilities." It details the steps to be taken by care facility operators in the event that an adult refuses to enter a facility and is mentally incapable of making such a decision (ss. 21-24). Provision is also made for the use of restraint in facilities (s. 25). Part 4 establishes Health Care and Care Facility Review Boards to hear and review objections to decisions made by health practitioners (e.g., with respect to a patient's capability to give or refuse consent) and related matters (ss. 27-32).

CHAPTERS EIGHT, NINE, AND TEN

i In these analytical chapters, the sources for quotations are kept anonymous and therefore are not individually acknowledged.

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Appendix

Interviewees Interviewee

Organization

Francine Arseneault

COPOH,CCD

David Baker

ARCH

Laurie Beachall

COPOH,CCD

Don Beddows

BCACL

Patty Bregman

ARCH

Gerrit Clements

B.C. Attorney General Office

Audrey Cole

OACL

Gary Curtis

B.C. Social Services/Housing

Jim Dirkson

COPOH

Al Etmanski

BCACL

Orville Endicott

CACL, OACL

Dot Ewen

B.C. Office of Public Trustee

Marguerite Ford

Vancouver Health Board

Steve Fram

Ont. Attorney General Office

Patricia Fulton

SRRS

Christine Gordon

BCACL

186 Interviewees Interviewee

Organization

Rob Gordon

PRAG

Paula Grant

B.C. Social Services/Housing

Kim Graham

BCACL

Myrna Hall

B.C. Office of Public Trustee

Kathy Hamilton

PRAG

Mae Harmen

CPC

Geri Hinton

B.C. Health Office

Stephen Kline

PRAG

Eric Laity

BIA

Chloe Lapp

PRAG

Barbara LeBlanc

OMA

David Lepofsky

CNIB, BOOST

Barbara Lindsay

BCACL

Pearl Mackenzie

PRAG

Gary Malkowski

Ont. Government, CHS

Sean McCormick

COPOH

Mark Perry

B.C. Office of Public Trustee

Yvonne Peters

LEAP, CDRC

Greg Pyc

CPA

Stan Remple

B.C. Office of Public Trustee

Greg Schiller

BCACL

Allan Simpson

CAILC

Trish Spindell

Concerned Friends, OAC

Lucy Walters

FS

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Index

Ad Hoc Coalition of Service Providers, 91-4, 96, 102-6 Adult Protective Service Worker program, 88 advocacy, 20, 25, 48, 89, 151—4; Advocacy Commission, 89-94, 100, 104—7; Ontario Advocacy Act, 85-107; and policy, 157-8; prescribed, 116 Advocacy Resource Centre for the Handicapped, (ARCH) 80-1, 87, 94-5, 98-101, 106, 141 AIDS Action Now!, 99, 101 Alberta Premier's Commission on the Constitution, 71, 73 Alzheimer Association: of British Columbia, 117, n 8, 120; of Ontario: 97 Arsenault, Francine, 79- 80 asylums, 11 Baker, Captain Eddie, 14, *5

Baker, David, 61, 81, 95, 101 Baker, Wendy, 113

Beachall, Laurie, 79-80, 83 Beaudoin-Dobbie Report, ?i>74 Beaudoin-Edwards Committee, 71, 74 Belanger-Campeau Commission, 67, 71 Bill C-6o, 45 Birrell, Margaret, 119 Blind Organization Offering Self-help Tactics (BOOST), 129, 153 Boyd, Eric, 75 British Columbia Association for Community Living, 109, 117 British Columbia Coalition of People with Disabilities, 81,117 Cairns, Alan, 38, 48, 70 Canada Assistance Program, 68-9, 83 Canada Clause, 71, 74-82, 133 Canadian Association for Community Living, 78 Canadian Association for the Mentally Retarded, 52

Canadian Charter of Rights and Freedoms, 38-48, 49-65; in education,12 Canadian Disability Rights Council, 69, 79 Canadian Hearing Society, 125-6 Canadian Independent Living Association, 78 Canadian National Institute for the Blind (CNIB), 15,52,56, 125-6 Canadian Paraplegic Association, 16, 78, 153 Canadian Pensioners Concerned, 95 Canadian Rehabilitation Council for the Disabled, 141 Canadian Tuberculosis Veterans Association, 14 Cassidy, Harry, 15, 17 Charlottetown Accord, 66-84 Chretien, Jean, 52-4, 61-3, 83.139 circles of support, 111, 123 Citizens' Forum on Canada's Future (Spicer Commission), 71-2

204

Index

civilian programs, 15-17,

17-19

Clark, Joe, 47, 73-6, 79-81, 133 Coalition for Human Rights for the Handicapped, 135 Coalition of Provincial Organizations of the Handicapped, (COPOH) 20, 52,54-9, 59-65, 7684, 141 Coalition to Implement Adult Guardianship Legislation, 115-19, 123 Cole, Audrey, 101-2, 106 Concerned Friends of Ontario Citizens Living in Long-Term Care Facilities, 87,94, 95, 98,100-1 consent to treatment, 91, 103 Co-ordination of Rehabilitation Services Act, 18 Council for the Guidance of the Handicapped, 17 Council of Canadians with Disabilities, 20, 83, 136, 141 Counsell, Lieutenant John, 16 Crombie, David, 53

disablement: definition of,

10

Dunlop, Captain Edward, 16, 17-18 education, 1 1—12, 21 Endicott, Orville, 94-5, 106 Etmanski, Al, no, 113, 121, 123 Ewen, Dot, 116-17 Fram, Steve, 87-9, 98-9 Gabelmann, Colin, 115 Giuffrida, David, 95, 101 Gordon, Christine, 115, 1 19—20, 123 Gordon, Rob, 1 1 1-13, 117, 121 guardianship, 87, 108-10 Hall, Myrna, no, 113, 116, 122 Handicap Action Group Incorporated, 19 Harmen, Mae, 95 Harris, Mike, 103 Hays-Joyal Committee, 47, 48,51-4,60-3 Heagerty Report, 1 7 housing, 21

deinstitutionalization, 85-7 Independent Living, 19-20, 126, 152 democracy, 28-9; participainterest groups, 83; re plutory, 29; representative, ralism, 33, 163; theory 28 Department of Soldiers' of. 33-4' 107. 137. M0; typology of, 146-7 Civil Re-establishment, Inter-Ministry Committee: 14 British Columbia, Department of Veterans Affairs, 15-18; Casualty 1 10-12, 1 15 International Year of DisRehabilitation Section, abled Persons, 20, 51 16, 17 Derkach, Lynda, 117 Joint Working Committee: Dinsdale, Walter, 51, 53 British Columbia, 112, Dirkson,Jim, 52, 55-8, 61 Disabled Persons Act, 13,19 115 Disabled Persons AllowKanary, Ron, 52, 57 ance Act, 18 Kelman, Reverend John, 14 DisAbled Women's Kendall, David, 101 Network, 69, 81, 153

Kendall, Joseph, 90, 95, H7 Lambert, Reverend Sydney, H Lamontagne/MacGuigan committee, 46 Lapp, Chloe, 118 LeBlanc, Barb, 97, 103 Lepofsky, David, 52-3, 56, 61-4, 126 Lightman, Ernie, 86, go logic: of influence, 161; of membership, 160-1 Mackasey, Bryce, 54 Malkowski, Gary, 72, 98-9, 106 Manitoba League for the Physically Handicapped, !7>i9. 55. 74. 8o Marsh, Leonard, 15, 17 McCormick, Shawn, 57, 59-62, 64 McGrath, James, 53 McGregor, Carol, 80 Medical Rehabilitation Grant, 18 Meech Lake Accord, 66-71 Mental Health Act, 113, 120 Mulroney, Brian, 66, 69 National Action Committee on the Status of Women (NAC), 79, 81, 136 National Council of Veterans'Associations, 16, 19 Obstacles, 20, 51

Office of the Public Trustee, no, 114, 116, 121 Ontario Advocacy Coalition, 94-6, 98-106, 138 Ontario Association for Community Living, 87, 94,138 Ontario Attorney General, 87-9 Ontario Friends of Schizophrenics, 91, 97—8, 103, 106—7

205 Index Ontario March of Dimes, 68-9 Ontario Medical Association, 91,97, 103, 131,

!34> 139 Options Canada, 45 O'Sullivan, Father Sean, 89-9°' 9 2 > 98 Parliamentary Special Committee on the Handicapped, 20, 51 participation: concepts in, 23-36; definition of, 4, 27-8; and influence, 26, 155; and power, 25-6, !54-5; purpose of, 24-5; and structure, 26 Patients' Property Act, 109-10 People First, 52, 94-6, 99, 102, 106, 138 Pepin-Robarts Task Force on Canadian Unity, 44 Persons United for SelfHelp (PUSH), 20, 55, 80, 128, 153 Peters, Yvonne, 52, 57—60, 62-5, 79 Planned Lifetime Advocacy Network, 118 policy: definition of, 5; communities, 162; networks, 162-4; and participation, 158-60 political economy: theory of, 34-6 power dependence, 163

Power of Attorney Act, 109 Project to Review Adult Guardianship (PRAG), 110-15, 118-23 Psychiatric Patient Advocate Office, 95, 100

Rae, Bob, 80, 93-4, 100 Remple, Stan, 117 representation, 149-51,152 representativeness, 149-51 resource: dependency, 64, 96; mobilization theory, 32, 130, 133 Reville, David, 90, 94 Robinson, Svend, 53-4 Romanow, Roy, 42, 44, 46 Russell, Peter, 40, 45, 47 Secretary of State, 20 Select Committee on Ontario in Confederation, 72,75 Simpson, Alan, 55, 58, 64 Sir Arthur Pearson Association, 14, 22 Smith, Bud, no, 115 Smith, David, 51 social movements, 4, 64; theory of, 32-3, 153-4 Spindell, Irish, 95, 100-2 state autonomy in policy making, 156-7 state capacity in policy mak-

ing. 157 sterilization, 86-7 substitute decision making, 91, 102, 105

theories of participation, 30-6; community organization, 30—2; interest group, 33-4, 163; political economy, 34-6; social movement, 32-3, 124, 133' !39> H4 Trudeau, Pierre Elliott, 40-1,45,47,60 United Handicapped Groups of Ontario, 55, 128 Verdun-Jones, Alan, 114 veterans' programs: World War 1,13-15; World War ",15-17 Vickers, David, 52 Victoria Charter, 40-1 Vocational Rehabilitation of Disabled Persons program, 18, 68-9, 83 vocational retraining, 14, 21 War Amputations Association, 14 Watts, Ronald, 71 Whitton, Charlotte, 17 Wood, L.M., 15, 16 workers' compensation, 11, 12-13 Worth, Patrick, 95-6, 98, 102 Young, Neil, 53, 62 Ziemba, Elaine, 92-3