a seat at the table: persons with disabilities and policy making

A Seat at the TablePersons with Disabilities and Policy Making

The Canadian Charter of Rights and Freedoms has been used to strikedown fifty-eight statutes that permitted the exclusion of persons withdisabilities, women, ethnic minorities, or gays and lesbians. Whilesome conservatives see this trend as "rulings for the many by the few,"those representing excluded groups view their successful court chal-lenges against unjust laws as a long-awaited coming of age, allowingthem to finally obtain a seat at the table.

A Seat at the Table documents the participation of disability activistsand organizations in public policy making in Canada. The authorscombine studies of contemporary federal and provincial policy makingwith a historical perspective on the progress made by disability groupssince World War I. The cases they discuss illustrate the tension betweenissues of human rights and personal capacities that the disability move-ment must deal with, but which have implications for other groups aswell. An analysis of contemporary social policy networks in Canadamakes it possible for the authors to suggest reasons for the inconsistentsuccess that disability organizations have had in translating their re-quirements into policy.

A Seat at the Table illuminates the key social-political factors of re-sources, roles, and reputations that must be taken into account by ex-cluded groups seeking to gain a seat at the policy table. The insights itprovides are important for the development of more professional lob-bying 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 atQueen's University. MARY TREMBLAY is associate professor of rehabili-tation science at McMaster University. MARY ANN MCCOLL is professorof rehabilitation therapy at Queen's University. JEROME BICKENBACHis professor of philosophy and law at Queen's University. ANNECRICHTON is professor emerita of health care and epidemiology at theUniversity of British Columbia, j. STEVEN ANDREWS is consultant forQueen's University. NANCY GEREIN is a lecturer at the NuffieldInstitute for Health at the University of Leeds. APRIL D' AUBIN is a re-searcher 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 PressMontreal & Kingston • London • Ithaca

McGill-Queen's University Press 2001ISBN 0-7735-2180-1 (cloth)

Legal deposit fourth quarter 2001Bibliotheque nationale du Quebec

Printed in Canada on acid-free paper

This book has been published with the help of a grant from theHumanities and Social Sciences Federation of Canada, using fundsprovided by the Social Sciences and Humanities Research Councilof Canada.

McGill-Queen's University Press acknowledges the financial support of theGovernment of Canada through the Book Publishing IndustryDevelopment Program (BPIDP) for its activities. It also acknowledges thesupport 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 makingIncludes bibliographical references and index.ISBN 0-7535-2180-1 (bnd)i. Handicapped - Government policy - Canada, I. Boyce, WilliamJL86.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 withIntellectual Disabilities 85

7 Adult Guardianship Legislation in British Columbia:Reform and Restructuring through CommunityParticipation 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 187

Index 203

Glossary of Organizationsin this Study

ARCH Advocacy Resource Centre for the HandicappedBCACL British Columbia Association for Community Living

BIA Brain Injury AssociationBOOST Blind Organization Offering Self-help Tactics

CACL Canadian Association for Community LivingCAILC Canadian Association of Independent Living Centres

CCD Council of Canadians with DisabilitiesCDRC Canadian Disability Rights Council

CHS Canadian Hearing SocietyCNIB Canadian National Institute for the Blind

COPOH Coalition of Provincial Organizations of the HandicappedCPA Canadian Paraplegic AssociationCPC Canadian Pensioners Concerned

CRCD Canadian Rehabilitation Council for the DisabledDAWN DisAbled Women's Network

LEAP Legal and Educational Advocacy ProjectOAC Ontario Advocacy Coalition

OACL Ontario Association for Community LivingOMA Ontario Medical Association

OFS Ontario Friends of SchizophrenicsPRAG Project to Review Adult GuardianshipPUSH Persons United for Self-HelpSRRS Seniors Resources and Research Society

Preface

Disability issues represent an interesting nexus of public policy de-bate. Concerns for the basic human rights of persons with disabilities,which suggest their inclusion in policy making, are contrasted withconcerns for defining the capacity of individuals to make fundamen-tal life decisions.

Members of the disability community find themselves in the middleof this tension and are often forced to adapt their focus. At the sametime, interests of others (parents, families, professionals) may lead toradically different perspectives on policy issues. The result is a complexpolicy environment with a strong measure of impassioned debate. Thisbook explores that environment principally from the perspectives ofpersons with disabilities and organizations advocating on their behalf.Two sets of federal and provincial policy initiatives are used in thisbook to illustrate this tension.

The team for this study included the Council of Canadians withDisabilities as a full research partner, along with academics from threeuniversities (Queen's, McMaster, University of British Columbia) indisciplines varying from law, philosophy, history, and sociology to reha-bilitation science and epidemiology. The diversity of the team allowedus to address a variety of perspectives that revealed numerous interest-ing themes.

A Seat at the Table will be of interest to researchers and graduate stu-dents in the social sciences; to disability organization leaders andmembers; and to federal and provincial government officials. It alsooffers material appropriate for courses in disability studies.

A Seat at the Table

Paternalism or Participation?

Voluntary citizen participation in governance has long been a valuedconcept and social practice in Western democratic societies. Citizenparticipation has been described as one of the five essential "locality-relevant functions" of any community system, along with an economicbase, resources for socialization, social control mechanisms, and mutualaid arrangements (Warren 1963). Historically, citizen participation hascomprised collective responsibilities for community self-improvement,voluntarism in charitable organizations, and citizen responsibilities forlocal governance. The process of participation in the area of gover-nance and policy making is the subject of this book.

The development of health and social policies in the disability fieldhas always presented policy makers with a conundrum about citizenparticipation. On the one hand, well-meaning, yet paternalistic, effortsof bureaucrats and policy-makers to provide for persons withdisabilities1 have made it difficult for individuals and their organiza-tions to make their needs and views known. In most cases, they havenot been invited to the table. This lack of involvement of persons withdisabilities has resulted in significant gaps and inconsistencies in pol-icy. The absence of democratic principles such as full participation hasbeen detrimental to persons with disabilities. On the other hand, theinvolvement of persons with disabilities in the policy arena requires ex-tra structural and personal supports for equal access such as those re-quired for other minority groups such as women, youth, the aged, andethnic groups. Thus, a government that is interested in the participa-tion 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 ofany formal agreements, just to proceed with the policy process. An in-cremental policy process rather than a transformational policy processmay result, with gains being made slowly rather than with vigour, as dis-ability advocates prefer.

Thus, the process of participation of persons with disabilities in pol-icy making is just as interesting as the outcome of their participation,since such participation itself both democratizes the policy processand demonstrates the types of policy support required. The study ofpolicy participation of disadvantaged groups can illustrate the prob-lems that may be experienced in later stages of policy implementationand help avoid expensive revisions of policy initiatives. The study ofsuch processes increases our understanding of how governments canboth meet the needs of people with disabilities, and indeed other mar-ginalized groups, and facilitate their contributions to society.

A brief historical note about the concept of citizen participation is inorder. Pateman (1970) notes that the word "participation" becamepart of the popular political vocabulary during the late igGos. Dra-matic changes had occurred in modern society in response to techno-logical change, increased educational levels and professionalization,greater urbanization and mobility, and bureaucratization. These fac-tors reduced the functional cohesiveness of communities and in-creased the need for a state role in community affairs (Ross 1960,Chetkov-Yanoov 1986). At the same time, post-colonial liberationmovements worldwide had stimulated the emergence of new socialmovements in the West (for example, student, environment, urban re-newal and women's movements), which demanded wider influence inpublic matters. Their resistance to state control, coupled with thestate's inability to afford the level of public services that they de-manded, provided the context in which early calls for citizen participa-tion were advanced.

More than ever, governments called upon community members toparticipate in local activities. At times, they encouraged citizen partici-pation in order to improve efficiency through community-membercontributions to public services. At other times, governments sug-gested that empowerment could be achieved through increased publicinvolvement in decision making. Hopes for both cost-savings and legit-imization of emerging political agendas were evident in these calls forparticipation. Thus, governments appeared to cede to external de-mands for citizen participation since it could be fashioned to meet thestate's needs as well (Litwin 1986). This book takes the perspectivethat new social movements have entered into traditional interestgroup politics and in the process have transformed the political

5 Paternalism or Participation?

landscape. A definite moral agenda of human rights now pervades thepolitical process.

The policy field has also been strongly affected by these trends to-ward citizen participation. However, a definition of "policy" and a gen-eral understanding of the policy process in a liberal democratic systemare necessary before proceeding further. Policy is "a purposive courseof action followed by a set of actors in dealing with a problem or mat-ter of concern" (Walt 1996). In the area of disability concerns, thisgeneral definition of policy can be elaborated further. Disability policyembraces courses of action that affect the set of institutions, organiza-tions, services, and funding arrangements of the disability system. Itgoes beyond formal services and includes actions or intended actionsby public, private, and voluntary organizations that have an impact ondisability.

In the context of policy studies, there are three possible foci for dis-cussion. First, policy options, or content, can be examined for the sub-stantive issues, rationales, assumptions, and values that any particularissue demonstrates. For example, one can study the various initiativesin Constitutional policy for their adherence to the principles underly-ing Canadian society. A second approach is to study the planning andexecution of programs and the concrete initiatives that a policy pre-scribes. This approach is largely a study of bureaucracies and otherbodies, such as the private and voluntary sectors, that are responsiblefor program implementation. Its questions are: What resources areavailable? Who is involved in implementation? How is policy imple-mentation enforced? Does the policy achieve its objectives? Does ithave unintended consequences? A third possibility is to study the pro-cess of policy making and the involvement of various actors at differentstages of policy development. Researchers who choose this focus ask:How are policy problems recognized and turned into issues that getonto the policy agenda? How are policies formulated? Is the policyprocess a rational search for the best possible integrative solution to aparticular problem, or is policy made up of small, incremental changesthat are rarely innovative or emancipatory? Finally, which actors are in-volved and how much influence does each actor exert on the substan-tive policy result? This third area of enquiry, the topic of policyprocess, is the primary focus of this book, although an appreciation ofpolicy issues and policy implementation is also important in under-standing the roles of various actors in the policy process.

The policy-making process involves two fundamental steps: problemidentification and policy formulation. Problem identification, or issuerecognition, involves studying why and how issues get onto the agenda.What are the mechanisms for uncovering issues and clarifying the


priority of problems? Issue definition and issue filtration, or decidinghow to decide, go hand in hand in policy making. Governments are ex-pected to be major actors in problem identification through feedbackfrom constituents, through theoretical leanings, and through opportu-nities that arise in the social and, increasingly, the international envi-ronment. The influence of research on problem identification is oftenrelated to the nature and intimacy of links between policy makers andresearchers. The media can also be gatekeepers for problem identifica-tion. The media's influence is related to their responsiveness to power-ful versus less powerful groups, to their issue-attention cycle, to theirhistorical impact on policy makers, and to the interaction with and useof the media by consumer organizations.

Policy formulation, the second step in policy making, is more formaland bureaucratic. Research in this area looks at who formulates policyand how the policy-making process is structured, and identifies theroles of various government actors - political parties, the executivelevel, and the civil service, as well as non-government interest groupsand individuals. Analysis of policy formulation reveals how policy ob-jectives and priorities are set. Options analysis examines the establish-ment of assumptions, as well as forecasting scenarios to help predictimplementation issues and likely outcomes of policy. Finally, the studyof policy formulation examines the roles of various participants in de-veloping policy strategy, and looks at the financial and technical as-pects of a policy and its implications for management.

The study of policy processes is not new. Up to now, however, thistype of study has most often focused on powerful interest groups, or atleast on well-organized community sectors such as neighbourhood as-sociations. With the trend towards increased citizen participation inpublic affairs a similar enquiry is needed for marginalized groups. Inthe case of disadvantaged groups, there are reports of the relativelypoor performance of strategies to involve citizen participation in manysectors, 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 partici-pation of disability organizations, which are arguably among the leastpowerful, in various policy processes.

Overall, we have taken a sociological approach rather than a politicalscience approach in this book, since disability organizations are stillemerging as political interest groups and have not yet been institution-alized into political parties. Nor do members of disability organizationsvote in solid electorate blocs. In the cases we have chosen to highlight, asociological analysis has better potential to explore the dynamics of pol-icy 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 participa-tion process. Although we recognize that the personal motivations andthe inter-actional dimensions of groups are also important in under-standing how participation develops, we believe that the structural di-mensions of participation - particularly the organizational aspects thatcan be modified independently by disability organizations - are key inthe policy environment and lead to useful recommendations.

Canadian disability policy development was selected as the contextfor this study for several reasons: there is ample documentation avail-able; articulate disability advocates and other policy participants werewilling to be interviewed; and recent examples of policy initiatives inthis area at both the federal and provincial level contain much mate-rial that bears close examination.

For our study we used historical and qualitative research methodsbest described as historical ethnography. This type of study attempts todescribe the development of political and organizational structuresand processes that influence, and in turn are influenced by, a culture,in this case, the culture of disability organizations in Canada. We analy-sed four examples: the Charter of Rights and Freedoms; the Charlot-tetown Accord; the Ontario Advocacy Act; and the British ColumbiaAdult Guardianship Legislation. We selected these cases because theyincluded a balance of federal and provincial examples, as well as a bal-ance of human rights issues and issues involving concerns about indi-vidual capacity.

Data for the study were assembled from forty interviews with key in-formants who had participated in one of the four policy cases. Theserespondents included disability advocates, government bureaucrats,politicians, and members of interest groups representing alternativeviews. They were identified through investigative contacts, review ofpertinent correspondence, and historical accounts of the four cases.

A sub-sample of respondents from three cases (the Charter, theCharlottetown Accord, and the Ontario Advocacy Act) was interviewedin depth to obtain additional information on the structural character-istics of disability organizations. The glossary at the front of the booklists the organizations mentioned in this study. The interviewees' nameare listed in the appendix.

Interviews generally took one to two hours, and some were con-ducted on more than one occasion. Researchers followed a semi-structured interview format, although they tailored each interview tofit the role and affiliations of the interviewee. Transcribed interviewswere read over by the researcher and, where possible, by the inter-viewee as well.


The researchers also reviewed extensive public and private docu-ments, including letters, Hansard records, draft policy papers, newspa-per articles, and legislative records. These were particularly useful inclarifying the social context of the policy issues, in building the casechronologies, and in assessing policy outcomes.

Our researchers wrote separate reports on each case using a stan-dard format that included the following aspects: the social and politi-cal context of discrete policy issues affecting persons with disabilities inCanada; the detailed chronologies of policy development in these is-sues; the characteristics of disability organizations and their advocates;the process of citizen participation, in particular the roles of disabilityorganizations; and the policy outcomes, or an assessment of the bene-fits obtained by various groups.

The form of analysis for these reports could be termed "historical" inthat our researchers gave priority to chronologies of events and contex-tual elements in the policy environment. They verified factual informa-tion and claims that were made by consulting more than one source.They noted discrepancies between respondents and offered explana-tions for the differences. Researchers' personal impressions about theprocess of policy making or the veracity of claims about participationwere clearly bracketed in the reports, so as to avoid confusion.

In the comparative analysis of the structural characteristics of dis-ability organizations, a traditional ethnographic analytic approachwith three levels of coding was used. The analysis aimed to develop aframework for describing organizations that represent individuals withdisabilities in legislative advocacy in Canada.

This book is arranged in three parts. Part One begins with a history ofthe involvement of Canadian disability organizations in policy making,demonstrating important styles of interest group influence that havelong been in practice. Recent development of the disability movementduring an expansion of the social welfare state provided a unique op-portunity for making major policy gains. Part One continues with a con-ceptual review of the literature about citizen participation, especially asit pertains to health and social policy development. We examine a vari-ety of social change theories for their perspectives on citizen participa-tion in the policy arena. We conclude from this review that participationof disability organizations is best examined from a structural perspectiveusing new social movement and interest group theories.

In Part Two we outline the four cases in this study: two federal con-stitutional processes - the Patriation of the Constitution (1981-82)(Bickenbach, D'Aubin) and the Meech Lake and CharlottetownAccords (1990-92) (Tremblay, McColl); and two provincial policy pro-cesses - 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 de-velopment of capacity building in certain disability organizations thathave matured as advocacy groups but have not been consistently ableto achieve policy gains. The provincial cases illustrate not only the di-vergence of disability groups' views on fundamental issues of capacityand decision making, but also differences in the latitude that they al-low for the involvement of consumer groups in policy implementationand formulation.

Part Three contains a comparative analysis of the strategies and tac-tics that disability organizations use in the policy process, and thestructural requirements for their involvement in policy making. Thediscussion focuses on various issues and theories that are useful in ex-plaining the participation of persons with disabilities in policy makingin Canada. In the final chapter we offer some tentative conclusionsand recommendations for improving the participation of organiza-tions of persons with disabilities in the policy arena.

i From Asylum to IndependentLiving: Disability Policy Making,Past to Present

Disablement has traditionally been defined from a biomedical per-spective that emphasized the causes or diagnosis of impairment andled to interventions such as medical and surgical services designed tohelp with the resulting physical problems. Disablement has also beendefined from an economic perspective that emphasizes the impact ofdisability on society and on the sense of self-worth of the person with adisability. Currently, disablement is commonly defined from a socio-environmental perspective that emphasizes the influence of physical,economic, social, and attitudinal constraints on the participation ofpersons with disabilities in society. This approach emphasizes the inter-action between social handicaps and environmental problems, andleads to interventions directed at reducing community barriers to inte-gration (Boyce 1999).

In this chapter we present an overview of major initiatives in Cana-dian disability policy and review past research on the roles of personswith disabilities in influencing and shaping Canadian disability policy.We proceed to outline the more recent context in which the cases inthis book occurred. It is important to note that there has been limitedCanadian historical research on the roles of persons with disabilities inthe development of policy, and more research is needed before a com-prehensive historical analysis can be undertaken. Table i at the end ofthis chapter provides a summary of significant legislative initiatives, thedisability organizations involved in the development of initiatives, andthe 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 provisionof housing and care for individuals with mental illness or handicap,education for children with disabilities, and the development ofWorkmen's Compensation programs. These early initiatives were notled by persons with disabilities but rather by coalitions of individuals,government officials, physicians, labour unions, and employer associ-ations, who were interested in the welfare of persons with disabilities.

The Rise of the Asylum

In the nineteenth century, Canadian provincial governments gave theresponsibility for dealing with mentally ill and mentally handicappedpersons to the Provincial Secretary as a matter of maintaining "law andorder." In some provinces, "disturbed" people were put in jails, butthis practice was eventually seen to be an unsatisfactory way to copewith their problems. One of the earliest Canadian policy initiatives wasthe development of asylums to house persons with mental illness or amental handicap and other persons, probably including individualswith 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 nine-teenth century, were designed on the principles of "moral treatment"to aid persons with disabilities to return to community life. By the endof the nineteenth century, however, most asylums had devolved into"warehouses" designed to provide custodial care for inmates through-out their lives. Many individuals with disabilities were also found incounty homes or municipal houses of refuge (Struthers 1994). Thispractice of housing persons with disabilities continued well into thetwentieth century.'

Education for Children with Disabilities

The first initiatives in policy development in the area of education forpersons with disabilities occurred in 1867 when an Ontario govern-ment report prepared by Egerton Ryerson, Ontario's first superinten-dent of education, recommended the establishment of specialresidential schools for blind and deaf children, to be funded by the pro-vincial government (Ryerson 1868). The government passed legisla-tion to provide funding for these special schools, paving the way for aschool 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


to note that during this period the provincial government did not yetprovide funding for general public education.)

Some Canadian provinces followed the Ontario example and estab-lished residential schools, while others provided funding for studentswith disabilities to travel to another province for their education (Win-zer 1993). By the 19205 many provincial governments had passedcompulsory public education legislation and assumed the cost of pub-lic education from the tax base. New policies were developed to eitherexclude students with disabilities from public education or place thesestudents in special classes. These new policies were often championedby physicians and proponents of eugenics who argued that the inclu-sion of children with disabilities in the classroom would interfere withthe education of regular students (MacMurchy 1915; McLaren 1990;Simmons 1982). Education policies of this nature continued through-out most of the twentieth century. Indeed, by 1976, a major nationalsurvey of Canadian education noted: "Most provinces fall far short ofadequate provision in public schools for handicapped children. Theresult is that, typically, these children must either be sent to expensiveprivate institutions (with the parents bearing all or most of the costs),or the children are simply kept at home (which is quite legal). Thusthe key pressing issue is not integration in regular schools or specialprovision, but adequate provision for handicapped children some-where" (Noah 1976,4).

The push for new legislation to provide tax funding for the educa-tion of students with disabilities was led during the 19605 and 19705 bycoalitions of families of children with disabilities, advocates for chil-dren, and educators. In the late 19705 these coalitions of families alsobegan to lobby for legislation to include students with disabilities inregular classrooms (Balance and Kendall 1969; Simmons 1982). Sincethe 19805, new groups of parents and disability advocacy groups haveused the Canadian Charter of Rights and Freedoms to argue for edu-cation for all students in the regular classroom.

Income Support, and Medical andVocational Rehabilitation for Workers

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


lation were British Columbia (1902), Alberta (1908), Quebec (1909),and Manitoba (1910) (Babcock 1995). Labour union members wereoften the main proponents of new legislation because they were con-cerned both with accident prevention and with the provision of com-pensation to their injured fellow workers. Manufacturers, however,gradually supported compensation programs because they had an in-terest in protecting employers from liability for damages (Shaw 1994).

The most significant legislation of this period was the OntarioWorkmen's Compensation Act of 1914, which instituted the doctrineof liability without fault (Piva 1975). This principle meant that com-pensation was paid to the worker, as a right, without the necessity ofproving negligence. Medical care and rehabilitation were also offeredwithin a few years of the passage of the Ontario legislation (Guest1985). Workers' compensation programs were financed by employ-ers, who were required to pay insurance premiums that were assessedaccording to the hazards of their working conditions.3

It is important to note that there were no civilian rehabilitation or vo-cational training programs available until after World War II. At thattime, the newly developed veterans' medical rehabilitation programswere first made available to civilian workers with disabilities, whose costswere covered by provincial workers' compensation boards. Canadianworkers' compensation programs, however, did not provide incomebenefits for those who were injured or became ill outside of the work-place or for those who were unemployed, groups which represented amuch larger proportion of Canadians. Persons in these categoriescould only look to municipal relief or assistance from philanthropic or-ganizations 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 wereinvolved in promoting policy development, persons with disabilitiesthemselves were not involved.

T H E P I O N E E R S I N E A R L Y D I S A B I L I T Y

P O L I C Y M A K I N G

World War I

During World War I, the Canadian government developed a series ofprograms to provide medical care, rehabilitation, limited vocationaltraining, 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 programsalso offered vocational training to veterans with disabilities who were


unable to return to their former occupations. Canada was one of thefirst countries in the world to develop these new vocational trainingprograms (Morton and Wright 1987).

Pension rates for disabilities were kept low, however, and were calcu-lated on the income of an untrained labourer. Medical examinersawarded pensions solely on the basis of their examination of medicalrecords. Fewer than 5,000 of the 70,000 pensioners from World War Iwere awarded pensions for full or near-full disability, while over 50 percent were awarded pensions for disability rated at 20 per cent or less(Morton 1992).

Indeed, an emphasis on returning veterans with disabilities to theirregular employment was central to Canadian policy. Vocational re-training programs were offered only to those veterans who were un-able to return to their pre-enlistment employment and were availableonly until 1921. Initial employment rates were impressive: 67.94%were reported employed as trained and 22.26% were employed other-wise; only 5.74% were unemployed in mid-igig (Morton, 1981). De-spite early employment successes, however, as the Canadian economydeclined during the Depression in the early 19205 and then again inthe 19305, many veterans with disabilities became unemployed. Be-cause of their inadequate pension levels, they often had to turn to thegovernment for financial assistance (England 1943; Hyndman, Price,and Woods 1935).

One important consequence of World War I was the establishment ofsome of the first organizations in Canada to be led by persons with dis-abilities: the War Amputations Association (War Amps); the Sir ArthurPearson Association of War-Blinded Soldiers and Sailors (SAPA); andthe Canadian Tuberculosis Veterans Association. These organizationswere established by injured veterans working with interested citizensand were usually administered by veterans with disabilities.

War Amps was led by Reverend Sydney Lambert and was formed tomeet the needs of injured veterans. This was also the mandate of theTuberculosis Veterans Association, which was led by Reverend JohnKelman, and of SAPA, led by Captain Eddie Baker. These individualsreceived personal funding from the Department of Soldiers' CivilRe-establishment for their work in assisting veterans with disabilities toreturn to civilian life and for advising the department on policy.

Following the war, veterans' organizations were effective in advocat-ing for individual veterans and lobbying the Canadian government forchanges in veterans' legislation. While the constitutions of these orga-nizations specified that they should be led by veterans with disabilities,the members of their boards of directors were usually leaders in Cana-dian political, military, and business fields.


The development of programs and services for civilians with blind-ness began with the founding of the Canadian National Institute forthe Blind (CNIB) in 1918. Eddie Baker and L.M. Wood, a wealthyToronto financier, were the early leaders in this institution. Baker andWood argued for services for civilians and placed blind individuals onthe board of directors and in central administrative roles in the organi-zation. The CNIB was the first national Canadian organization led bypersons with disabilities.

During the interwar period, civilians with disabilities relied on mu-nicipal or provincial government's or on philanthropic institutions forrelief. There was no provision for medical treatment or rehabilitationexcept for those who qualified for workers' compensation programs.Social reformers of the period, such as Harry Cassidy and LeonardMarsh, recommended social legislation to protect against illness, acci-dents, old age, and unemployment (Research Committee of theLeague for Social Reconstruction 1935). The only legislative initiativerelated to disability during that period, however, was an amendment tothe Old Age Pensions Act in 1937 that provided for payment of a pen-sion to every blind person over the age of forty who was in financialneed (Guest 1985). The legislation made no provision for treatmentor vocational training, two other services that had long been sought byBaker, the CNIB, and the Canadian Federation of the Blind, which wasformed in 1927 (Greenland 1976; Guest 1985). The new pensionswere means-tested and reduced dollar for dollar by the equivalent ofany income that a recipient acquired over a specified amount.

World War II

In 1939 the Canadian government set up a number of committees tocreate plans for the reintegration of all Canadian veterans into civilianlife following the war. By 1945 the newly established Department ofVeterans 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 withdisabilities were also offered income tax-free pensions, "helplessness"allowances, and funding for special equipment such as wheelchairsand prostheses. Finally, preference in employment was granted by theCanadian Civil Service Commission, and veterans with disabilities re-ceived the highest rating (Woods 1953).

As a result of these programs, many Canadians with spinal cord in-jury, 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 theunfolding of policies to provide medical care and services to civilianswith disabilities (Tremblay 1996).

In 1948 the associations representing injured veterans formed theNational Council of Veterans' Associations. This group, which contin-ues today, was very successful in lobbying for policies that providedprograms and services to support the full participation of Canadianveterans with disabilities in civilian life.4 The National Council ofVeterans' Associations is the first example of interest group involve-ment in this issue.

Two early leaders in the movement for improved services for Canadi-ans with disabilities were veterans of World War II who had began theirwork in the area of veteran rehabilitation. Captain Edward Dunlop,blinded during the war, was the first chief of the Casualty Rehabilita-tion Section of the Department of Veterans Affairs. Under his leader-ship, a broad national program of vocational and economicrehabilitation for veterans with disabilities was established. The pro-gram actively recruited veterans with disabilities to become CasualtyRehabilitation Officers because of the belief that those who had suc-cessfully adapted to their disabilities could best provide counsellingand advice to those with new disabilities. In the late 19405, Dunlopdrew on his own experiences in veteran rehabilitation to develop pro-posals for new Canadian policies for civilians (Dunlop 1947). He wasjoined by other veterans in lobbying federal and provincial govern-ments for the development of civilian rehabilitation and vocationaltraining programs (Montreal Rehabilitation Survey Committee 1949).

The second Canadian veteran who played a major role in changingCanadian disability policy was Lieutenant John Counsell. In 1945 Coun-sell, also working with L.M. Wood, established the Canadian ParaplegicAssociation (CPA). The CPA was the first organization in the worldfounded and administered by persons with spinal cord injury. Counselland six other veterans with spinal cord injury formed its first board ofdirectors. The first CPA constitution included a mandate to meet theneeds of both veterans and civilians with spinal cord injury. The twocentral goals of the association were to provide "mutual aid" to individ-uals with spinal cord injury and to lobby all levels of government formedical care and rehabilitation programs for civilians with spinal cordinjuries. The association expanded to have divisions across Canada bythe i gGos and became one of the main lobbying groups for legislationfor persons with disabilities. The directors of its divisions, such as TonyMann of the Manitoba Division and Don Curren of the MaritimeDivision, were among the leaders in the development of lobbying ef-forts for provincial and federal disability policy initiatives between 1950


and 1980. They, along with other veteran leaders in the CPA such asEd Desjardins, were involved in the development of associations for ci-vilians with disabilities across Canada. These included groups such asthe Western Society for Physical Rehabilitation in British Columbia andthe Manitoba League for the Physically Handicapped.

Post-War Rehabilitation

During the early 19408, four significant reports expressed interest inthe preparation of social legislation to protect all Canadians againstunemployment, disability, sickness, and old age. The Report on SocialSecurity for Canada (1943) by Leonard Marsh called for the develop-ment of a social insurance scheme, children's allowance, and a com-prehensive system of health insurance. In The Dawn of Ampler Life(1943), Charlotte Whitton favoured instituting a living wage policy, astate system of medical care, and provincial programs of assistance forthe unemployed, aged, mothers with dependent children, and personswith disabilities. The third proposal, Social Security and Reconstruc-tion in Canada (1943) by Harry Cassidy, called for a federal programof social insurance to offer partial protection through cash benefitsfrom federally funded, provincially administered old-age assistance,disability allowances, mothers' allowances, and general assistance pro-grams. Finally, the Heagerty Report of 1943, which had been preparedfor the federal government as part of its post-war reconstruction plan-ning, offered a proposal for developing a federal-provincial health in-surance program. This proposal was also discussed at the DominionProvincial Conference on Reconstruction during 1945. However, afternine months of discussions relating to federal-provincial jurisdictionalissues, the conference adjourned, unable to reach agreement on ei-ther 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, andfunding for individuals with disabilities (Hudson and Jarmain 1944;Kelsey 1947; Andoff 1947; Montreal Rehabilitation Survey Committee1949). One early group, the Council for the Guidance of the Handi-capped in British Columbia, argued that "the disabled person does notwant pity, charity or sympathy. All he wants is an opportunity to takehis place among able-bodied men and women and prove ability to doany type of work" (Editor 1945).

One of the first comprehensive Canadian reports on disability wasThe Rehabilitation Needs of the Crippled and Disabled in Canada(1947), prepared by Edward Dunlop, head of the Casualty Rehabilita-tion 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 willenable each and every crippled or disabled Canadian who may requirespecial services to avail himself of them. This opportunity for self-emancipation should be available as a right of citizenship, without refer-ence to class, or the cause or source of disability" (Dunlop 1947) [ital-ics added]. To further his ideal of self-emancipation, Dunlop called forthe development of a national rehabilitation program, to be con-ducted jointly by the federal and provincial governments. He empha-sized vocational training but did not address the provision of pensionsor other funding benefits to individuals with disabilities.

In 1951 the Canadian government appointed an interdepartmentaladvisory committee drawn from the Departments of Labour, Healthand Welfare, and Veterans Affairs to advise on the development of ci-vilian programs5. A federal-provincial conference held in Toronto inFebruary 1951 resulted in the formation of the Advisory Committeeon Rehabilitation. The work of this committee laid the foundation forthe passage of legislation and the development of rehabilitation for ci-vilians in Canada. Central to the work of the committee was the needto develop both medical treatment and rehabilitation programs, andvocational training and employment placement for Canadians withdisabilities who were not eligible for veterans' or workers' compensa-tion programs.

During the 19505 and the 19603 the federal and provincial govern-ments passed a number of pieces of legislation that affected the lives ofCanadians with disabilities. The Medical Rehabilitation Grant, 1953,dealt with funding for medical rehabilitation. The Disabled PersonsAllowance Act of 1954 established a joint federal-provincial programof vocational rehabilitation and allowances for individuals over the ageof eighteen who had total and permanent disabilities. Finally, theVocational Rehabilitation of Disabled Persons (VRDP) program andthe Co-ordination of Rehabilitation Services Act of 1961 were passedto provide funding for vocational training for civilians.

Eddie Baker, John Counsell, and Edward Dunlop played key lobby-ing roles in the establishment of the early advisory committees and inthe ongoing development of legislation. They were joined by govern-ment officials, particularly from the Departments of Labour andHealth and Social Services, by voluntary organizations, and by mem-bers of the medical community.

Emergence of Cross-Disability Groups

Overall, in the first half of the century, the most significant pieces oflegislation 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 thelegislative initiatives of the 19508 and 19605 to provide medical reha-bilitation, pensions, and vocational training. The most successful lob-bying organizations of Canadians with disabilities were the veterans'organizations. Indeed, beginning with its first successful lobbying ef-fort in 1948, the National Council of Veterans' Associations provided amodel of a very effective interest group. The council continues to bethe main voice for Canadian veterans with disabilities, and indeed vet-erans' disability legislation has provided an important model for subse-quent civilian initiatives.

The early evolution of civilian organizations of persons with disabili-ties was often led by veterans with disabilities such as Baker and Coun-sell. They transferred the principles of mutual aid and support andlobbying for legislation from their work with veterans. The provincialoffices of veterans' organizations often provided leadership to otherorganizations for persons with disabilities that began to arise in thelate 19605.

Initially, disability organizations, such as the Canadian ArthritisAssociation, for example, were formed to address the needs of specificdisability groups. After the passage of the Disabled Persons Act of1954, however, new organizations begin to focus on disability in gen-eral rather than on specific disabilities. As generic rehabilitation cen-tres opened and brought together new groups of health professionalsand people with a variety of disabilities, disability organizations beginto address broader issues such as barriers to employment, transporta-tion, and housing. Organizations such as the Manitoba League for thePhysically Handicapped, the Handicap Action Group Incorporated ofThunder Bay, and the Toronto Mayor's Committee began to form towork on societal access issues. A new type of cross-disability socialmovement emerged.

T O W A R D S 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 underliesthe evolution of recent policy participation by persons with disabilitiesin Canada. The IL movement arose in response to the growing mili-tancy of persons with disability who rejected the control of profession-als over their lives (De Jong 1979). The IL movement advocated thatconsumers have control over the organizations and resources requiredto achieve maximal independence in their communities. Traditionalservice providers addressed disability by employing professional pro-gram staff, by providing services for "clients," by emphasizing privatecharitable fundraising, and by focusing on specific disabilities. In


contrast, IL advocacy organizations emphasized what they termed"consumer control," education and advocacy programs, governmentresponsibility for program funding, and cross-disability representationor involvement of persons with a wide variety of disabilities(MacEachen 1993).

During the International Year of Disabled Persons (1981) the fed-eral government established the Parliamentary Special Committee onthe Handicapped to prepare a series of reports entitled Obstacles (Can-ada Health and Welfare 1981). The committee's recommendation forthe establishment of IL centres provided a basis from which consumergroups could legitimately negotiate with the government for funding(Lord and Osborne-Way 1987).

The early 19805 set the scene for advocacy responsibility within thedisability movement. In 1981 the Coalition of Provincial Organizationsof the Handicapped (COPOH, now known as CCD, the Council ofCanadians with Disabilities) established an Independent Living com-mittee. Valentine (1994) notes that "a key development from this com-mittee was the conscious separation of individual vis-a-vis collectiveadvocacy." Unlike the American Independent Living movement,which combined these elements, in Canada disability advocacy groupssuch as COPOH and Persons United for Self-Help (PUSH) took a leadrole in policy and legislative activities, while IL centres focused on as-sisting individuals by developing their personal skills, providing infor-mation on resources, and negotiating services for them.

By the late 19805 disability organizations in Canada were high onthe federal and provincial governments' social service priorities as partof an expanded social welfare system. Governments had set up distinctbureaucratic structures to organize disability policy and fund commu-nity service groups; for example, the Ontario Office of Disability Issuesand the Disabled Persons' Unit within the federal Secretary of State.Thus, a set of political opportunities was in place during this time inCanada that supported the demands of disability groups (Driedger1989). The build-up of bureaucracies also led, however, to the need tofind substantive roles for bureaucrats, such as managing the represen-tation of disenfranchised minority groups. Such roles created legiti-macy for these groups, yet simultaneously threatened their autonomyand created dependence (Pal 1993).

The involvement of people with disabilities in the policy reform pro-cess grew out of two key concerns: integration and participation. Bythe late 19805 it was a basic axiom of disability rights organizations thatfull integration of people with disabilities into mainstream society wasthe goal - and responsibility - of public policy. Key examples of the re-sults of disability group advocacy on this issue were:


• the de-institutionalization of persons with mental disabilities intocommunity-based housing, and the provision of community-basedservices for them;

• the desegregation of children with mental disabilities from specialeducational institutions and classrooms into public schools;

• the closing of sheltered employment settings and support for com-petitive work opportunities.

Second, some people with disabilities had become convinced of theneed for them to more actively participate in policy making so as toavoid the creation of new laws and policies that failed to secure theirfull integration into society. These people with disabilities and their or-ganizations were mistrustful of state bureaucracies and health careprofessionals for failing to promote their basic interests in life. Thus,the norm of citizen participation became not simply a goal of disabilitypolicy but also a defining feature of a legitimate policy reform processitself.

The history of the involvement of Canadian disability organizationsin policy making reveals a gradual strengthening, from dynamic indi-vidual leaders to focused veterans' interest groups to broad-based coa-litions jockeying for position in the social welfare state. This historyparallels a more general empowerment of citizen groups in the policy-making arena. Certain cultural goals of group identity and autonomyare also served in the new disability social movement that evolved inthis era.


Table iEarly Involvement of Canadian Disability Organizations in Policy Making

Legislation Organizations

PRE-WORLD WAR I

Ontario Workmen's Compensa-tion Act (1914)

WORLD WAR I

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

War Amps Association Canadian TuberculosisVeterans Association

Sir Arthur Pearson Association of War BlindedSoldiers 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)

Disabled PersonsAllowance Act (1954)

Vocational Rehabilitation ofDisabled Persons and Coordi-nation of RehabilitationServices Act (1961)

Canadian National Association for the Blind

Canadian Paraplegic Association

2 Theoretical Frameworks forCitizen Participation:Contextualizing the Case Studies

K E Y C O N C E P T S

We now turn to a discussion of concepts in the field of citizen partici-pation that are essential for understanding the events analysed in thisbook. We also review a variety of theories of social change that are rele-vant to the process of citizen participation, as these theories will helpprovide a conceptual basis for the case studies on policy participationthat follow.

Citizen participation is a vast field of study that has been investigatedin many sectors such as health, environment, governance, interna-tional rural development, and urban renewal. It has become a centralvalue and strategy in these sectors for a variety of reasons including ef-ficiency, equity, and social cohesiveness (Midgeley et al. 1986).

Citizen participation, like other social phenomena such as educa-tion, can be conceptualized both as a means and as an end in itself.When understood as a means, the term "instrumental participation" isused, to indicate the process of involvement with the intent to achievea predetermined common social goal or objective. Participation in thissense is a way of using existing physical, economic, and social resourcesto attain a valued outcome or benefit, and is also a means to achievingefficiency in organized activities. Examples of instrumental citizen par-ticipation in the policy development arena include presenting briefs,serving on advisory committees, and lobbying government. This formof citizen participation tends to be short-term and does not necessarilyincrease individuals' capacity to participate. Instrumental participationis often associated with interest group theories of policy making.


When participation is understood as an end in itself, the term "trans-formational participation" is used. It indicates a long-term process in-tended to develop and strengthen people's capabilities to involvethemselves in social development. Participation in this sense promotesideological and normative goals such as social justice, equity, and de-mocracy (Pitkin 1969). In the policy arena, transformational participa-tion includes activities designed to build organizational reputationsand develop capacities to become permanent partners in the policy-making process. Transformational participation is often associatedwith new social movement theories of policy making.

The ends and means argument in citizen participation is linked tothe interpretation of its purpose. Currently, there are three broad in-terpretations 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 do-nation of people's resources to a common good or goal (participationas an instrumental means). For example, volunteers from within an or-ganization may participate in activities such as bake sales or bingos toraise funds for their own organization. This purpose values the effi-ciency obtained in meeting instrumental objectives through people'sown efforts. It implies that community interests are cohesive and thatinternal community conflicts can be resolved through democratic pro-cesses. Participation as contribution is often promoted by the state anddoes not necessarily imply that control and direction of activities passto the local level (Cohen and Uptoff 1980).

Citizen participation as organization is the process of organizing orarranging people in common activities (participation as both meansand end). For example, participation in board of director develop-ment activities meets the purpose of organization. In this interpreta-tion, the origin and form of organization are crucial. Some communityorganizations are conceived and introduced by external agents such asgovernment bureaucracy, while others emerge and take shape fromthe process of community members' own involvement (WHO 1991). Ineither case, this purpose for participation values the process of organi-zational 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 skillsand the ability to make decisions that affect their lives (participation asa transformational end). For example, participation in political coali-tion 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 re-solvable at the local level. When the purpose of participation is em-powerment, it acknowledges the need for community members toexercise power, and values the social equity that is achieved whenpower sharing happens. Barriers to participation arise from social con-flict and can be addressed by seeking compromise on conflicting poli-cies or by removing social barriers through political reform (Mikkelsen1995). Analysis of citizen participation through an "empowerment"lens entails a study of the mechanisms by which participation addressesinequitable power relations (Stone 1992).

Citizen involvement in policy making is a special case of participa-tion that often involves advocacy. Neufeld (1991) identifies six levelsof advocacy for disadvantaged persons, ranging from a focus on the in-dividual and family (self-advocacy, family advocacy, and one-to-one ad-vocacy), to a focus on collective society (legal advocacy, systemadvocacy, and public advocacy).

If we propose that the legitimate purpose of citizen participation indisability policy making is empowerment and participation is conceivedas a transformational phenomenon that influences the process of deci-sion making, we discover a number of implicit assumptions (Arnstein1969, Katan and Prager 1986, Rifkin et al. 1988): that citizens have a ba-sic right to participate and that the objective of their participation is tointroduce changes in social conditions; that active participation im-proves relationships between community members and community or-ganizations, and thus reduces alienation; that through participation,disadvantaged groups can gain access to resources and positions of con-trol; and finally, that participation results in attitudinal changes in com-munity members, organizations, and society at large.

Participation as empowerment emphasizes the exercise of power as acentral feature (Rifkin 1986). However, the concept of power is itselfproblematic. 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 bothdominance of authorities and dependency on the part of the oppressed(Emerson 1962). More recent formulations have incorporatedGramsci's concept of hegemony, according to which the dominance of agroup rests upon its ability to translate its own world view into a perva-sive ethos (Femia 1985). In the context of disability, the hegemonic no-tion of able-bodied dominance has been pervasive. In these recentviews, power is not an object (which can be possessed), but is a mediumor process through which social relations involving conflict areexpressed (Giddens 1979).


It is essential to distinguish between the terms influence and power.Having influence does not necessarily imply having power or the abil-ity to determine the outcome of a decision-making process. Influenceonly implies a contribution to the processes of information gathering,deliberation, and argument (Pateman 1970) and is akin to a neutral-ized form of interest group participation.

Sociological theory suggests that concrete elements such as activi-ties, division of labour, networks, social relationships, organizationalgroups, hierarchies, physical or material conditions, financial require-ments, age, and environment can all be considered as structural fac-tors that are relevant to citizen participation (Rocher 1972). Theseelements are reflected in observable social institutions that may affectcitizen participation.

Oakley (1991) divides these elements of structure into three catego-ries that are relevant to participation. The social-cultural dimension in-cludes structures of social relationships that have developedhistorically, such as the dependency and marginalization of minoritygroups and women. It also includes dominant norms and values re-garding disadvantaged groups such as poor persons or those with dis-abilities. The organizational dimension includes administrativenetworks, procedures, and the attitudes of planners that shapedecision-making roles. This dimension includes resources for partici-pation as well as organizational history, mandates, and program objec-tives. Finally, the political-legal-economic dimension includes ideology,political entities, legislation, and economic systems that facilitate orlimit citizen participation. The political-legal-economic dimension alsoincludes policy decisions to include or exclude certain groups such aspersons with disabilities from policy making. Any, or all, of these broadstructural dimensions may be operative in a participatory setting.

It is important to emphasize, however, that factors in these structuraldimensions do not act alone but are mediated through the agency ofindividuals (Freeman 1983). Thus, macro- and micro-influences cancombine in the phenomenon of citizen participation. In order to studythem, methodologies that can capture their interaction are required(Kelly 1989). One possible methodology is the analysis of the percep-tions of community members about structural influences on participa-tion. We have chosen this methodology in order to focus primarily onthe organizational dimension of participation, mostly from the per-spectives of disability organizers themselves. Overall, a perspective onparticipation that recognizes a variety of structural dimensions, therole of human actors, and the importance of power appears to beneeded for illuminating the process of citizen participation in policydevelopment.


T O W A R D S A D E F I N I T I O N

O F C I T I Z E N P A R T I C I P A T I O N

Considering the variety of possible analytic perspectives on this field, itis not surprising that there are numerous definitions for citizen partic-ipation. The challenge is to select or develop definitions that are con-sistent with the assumptions of the study. Specifically, a suitabledefinition of citizen participation in disability policy making should ad-dress human agency as well as structure. The definition should incor-porate the means/end issue and focus on an organizational-empowermentinterpretation of participation. Finally, the definition should explicitlyaddress concepts of power.

Citizen participation has a variety of meanings that focus on sharingin activities by virtue of entitlement or right and derive from the basicconstructs of democratic theory (Neufeldt 1988). Pateman, in her clas-sic political science work Participation and Democratic Theory (1970),notes that the notion of participation is used widely, often with an im-precise definition or no definition, to include almost any situation inwhich even a minimal amount of interaction takes place. This interac-tion might imply little more than that a particular individual waspresent at a group activity. Pateman suggests that suitable definitionsof participation must include four elements: participation by some-one, participation with someone, participation in something, and par-ticipation for some purpose. She accepts the following definition ofcitizen participation: "A process in which two or more parties influ-ence each other in making plans, policies or decisions. It is restrictedto decisions that have future effects on all those making the decisionsand on those represented by them" (French et al. 1960, 3). Patemaninterprets this definition of participation to exclude the following situ-ations: where an individual merely takes part in a group activity; wherean individual is merely given information on a decision affecting himor her before it is executed; or where an individual is present at ameeting but has no influence.

From an egalitarian perspective, Pearse and Stiefel (1979) define cit-izen participation with a purpose of empowerment as: "the organizedefforts to increase control over resources and regulative institutions ingiven social situations, on the part of groups and movements of thosehitherto excluded from such control" (8). This definition reinforcesthe centrality of the issue of power in citizen participation. Pearse iden-tifies the intended outcome of participation as "control" over re-sources and institutions by the "excluded." Changes in political andeconomic relationships are also implied. The community is seen, notas a cohesive whole with mutual interests, but rather as a constellation


of distinct advantaged and disadvantaged groups. This definition ofparticipation satisfies Pateman's general criteria, addresses both the or-ganizational and empowerment purposes of participation, uses a struc-tural perspective, and is applicable to many disadvantaged groupswithin communities.

With these conceptual and methodological issues in mind, we pro-pose the following definition of the participation of citizens with dis-abilities in policy making: Citizen participation is the organization ofactivities by groups of persons with disabilities who are at a structural disad-vantage, in conjunction with able-bodied persons who are not, to increase con-trol over the means to influence the policy environment and, in doing so, toimprove their quality of life. There are doubts as to whether this definitionis appropriate to represent family member participation, or the partic-ipation of able-bodied advocates for persons with disabilities.

T H E O R I E S O F P A R T I C I P A T I O N

Virtually every field that has attempted to involve community membersin organized public activities has contributed to the knowledge base ofcitizen participation. There is an extensive literature in this area en-compassing the disciplines of sociology, political science, manage-ment, psychology, health, social work, and environmental studies,among others. However, much of what has been written on citizen par-ticipation, and especially on its structural dimensions, is descriptiveand non-theoretical (Sadler 1979, Howell et al. 1987, CanadianCouncil on Social Development 1988). The study of citizen participa-tion has its primary roots in the disciplines of political science and soci-ology. Since we are trying in this book to understand the social contextin which organizations of persons with disabilities operate, we focusprincipally on sociological theory but also present a brief overview ofcitizen participation in a political sense.

A key issue in political science theories of democracy is the distinc-tion between representative democracy and participatory democracy(Pateman 1970). Underlying this distinction is the struggle betweenthe liberalist values of free choice espoused by Locke, Hobbes,Bentham, and Mill and the democratic values of equality promoted byRousseau andJ.S. Mill (Weingert 1976, Wolfe 1977). Liberalist viewsare reflected in the "first generation human rights" of free speechand private property, and assert that all citizens have the right to in-fluence political decisions that affect them (Howell et al. 1987).Some authors claim that representative democracy and political par-ties are participatory mechanisms to implement this view (Mill 1859,


Mills 1959, Dahl 1961). Others claim that the concept of participa-tion itself implies the breakdown of representative democracy: "Atbase, the demand for participation connotes criticism of the existingsystem of representation" (Sadler 1979). Disability activists have oftenexpressed this view.

"Second generation human rights" have emerged in this centuryfrom a broader view of democracy that recognizes that liberalism inmost nations results in great differences between individuals in termsof political and economic power. The state has assumed the responsi-bility to ensure equal access to public service safety nets such as healthcare, education, housing, and social welfare. These services both pre-pare individuals for, and protect them from, the economic competi-tion implicit in first generation rights (Howell et al. 1987). Notions ofparticipatory democracy that are used to support this view primarily in-volve an educative process in which individuals learn to cooperate be-yond their individual interests to achieve both public and privatesecurity (Pateman 1970).

Thus, participation in the political science domain reflects funda-mental tensions between the right to compete in a market economyand the right to an equitable standard of living. Political participationalso reflects basic tensions between individual and collective rights.

In the sociological domain, a variety of theories have been used toexplain citizen participation. At the individual level, social exchangetheories such as Olson's (1968) rational actor model and Knoke's(1990) motivational model of collective action can be used to explainpersonal reasons for participating in community activities. At thegroup level, theories such as negotiated order (Day and Day 1977)and collaboration theory (Gray 1989) can be used to explain groupdynamics in participation. Our research found, however, that socialchange theories are more useful for exposing the structural factorsthat facilitate or limit participation and for explaining the emergenceof a popularized notion of citizen participation. The major bodies ofcontemporary social change theory related to citizen participation inpolicy making are those concerned with community organization, so-cial movements, interest groups, and political economy.

This chapter illustrates the multiple approaches that one can take inanalysing community participation. The micro-macro tensions be-tween individuals' aspirations to contribute and influence policy andthe state's interests in legitimation and relevancy are illustrated by con-sidering a variety of theories. As well, the topic of citizen participationin policy making requires an approach that considers the motivationsof all of the possible actors.

go A Seat at the Table

Community Organization Theory

Community organization theories of participation assume the involve-ment of community members in groupings defined either by affinityor by geography. The literature on participation in community orga-nizations can be divided into that which addresses functions of par-ticipatory organizations and that which addresses the process ofparticipation.

In a classic analysis, Rothman (1968) identifies three functionalmodels of community organization: locality development, social plan-ning, and social action. Organizations whose functions is locality devel-opment pursue community-wide economic and social change throughthe broad contribution of a spectrum of citizens in the community. Lo-cality development takes a view of the public interest that assumes thata common good exists and can be determined instrumentally througha broad, cooperative decision-making process. Values of harmony andcommunication are implicit in this model, which appears to underliecalls for citizen participation in the public policy strategy of health pro-motion (Milio 1988).

A second model, that of social planning organizations, emphasizes atechnical process of problem solving to achieve rational, deliberate,and controlled change. Participation of consumers in the communityvaries depending on the problem, the organization, and the knowl-edge that expert planners judge to be needed. The social planningview of the public interest assumes that with the proper combinationof expertise, judgement, and conscience the community's needs canbe met. Professional elites often play the key role in a social planningmodel, which values rationality, objectivity, and professional purpose(Lalonde 1974, Epp 1986, WHO 1986).

The third model, that of social action organizations, aims to makefundamental changes in local social conditions and institutions. Partic-ipation and empowerment of disadvantaged groups are emphasized. Asocial action view of the public interest assumes that a disadvantagedgroup's vested interest is legitimate. Central concepts in social actioninclude inequalities in resources, imbalances in power, and values ofcommunity control and autonomy (Schler 1970, Morley et al. 1983).Values of social justice and equality are implicit in this model, whichappears to underlie the community development approach in healthpromotion (Labonte and Penfold 1981, Dixon 1989). These social ac-tion concepts closely reflect the structural perspective on citizenparticipation.

Rothman (1968) notes that these functional organizational modelsoften overlap in practice, but in so doing often result in contradictory


activities and confusion amongst staff and participants. Stirling (1989)suggests that the functions of community organizations have devel-oped beyond early social action conceptualizations of enabling, medi-ating, and activism towards more recent trends of "institutionalaccess," "local cooperation," and "intersectoral coordination." Thesetrends demonstrate an increasing bureaucratization of the functionsof community organizations in their relationships with the state.

A second stream in community organization theory focuses on par-ticipatory 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 fundamen-tally concerned with the institutionalization of power relationships.The process of participation in any project varies from non-participation, through tokenism, to full citizen control. Arnstein's ty-pology implies a zero-sum power situation in which there is deemed tobe a fixed amount of power or benefits in society. The power that onegroup wins is achieved only through loss of power by another group.Arnstein's "Ladder of Participation" is implicit in many of the effortsto develop scales for evaluating the degree of citizen participation(Rifkinetal. 1988).

Alternatively, Susskind and Elliott (1983) propose a non-zero-sumgradient of participatory influence: from paternalism (centralized de-cision-making), to conflict (citizen confrontation over control of poli-cies), to co-production (negotiated decision-making wherein power isshared and both parties gain information about community prob-lems). Crenson (1983) notes, however, that while the co-productionprocess tends to occur more often in low-income neighbourhoods, itusually benefits the high-income residents of these neighbourhoods.This imbalance raises the issue of who benefits from a negotiated deci-sion-making process.

Most community organization theorists view the practice of citizenparticipation as a blend of these organizational functions and partici-patory processes. Particular methods of community work are appropri-ate at different times for different issues. This conceptualization makesanalysis and evaluation of community projects problematic. There is aconsistency of view, however, that over time community organizationsmust address their relationships with outside groups, institutions, andsocial structures that influence the well being of the community(Jackson et al. 1989).

Overall, community organization theory is concerned with explain-ing the structure, function, and process of participatory activities in lo-cal policy making and is important in the analysis of factors thatcontribute to successful community involvement and also in the


development of evaluation strategies for citizen participation (RifkinigSi.Rifkinetal. 1988).

Social Movement Theory

A second stream in social change theory that is applicable to citizenparticipation in policy making is contained in the literature on socialmovements. Social movement theory is concerned with the develop-ment, maintenance, and impact of collective organizations of socialchange (Hannigan 1985). Early theories of social movement focusedon the emergence of social problems and the motivations of aggrievedpopulations and leaders in responding to these problems (Turner andKillian 1987). However, these analyses of collective behaviour gave lit-tle explanation for the participation of non-aggrieved persons (Olson1968) or the development of community organizations in the socialmovement (McCarthy and Zald 1987). Two social movement theoriesapply particularly to citizen participation in disability policy making:resource mobilization theory and new social movement theory.

Resource mobilization theory proposes an economic analogy to ex-plore the ability of specific social movements to acquire and use mone-tary and labour resources to facilitate organizational objectives(McCarthy and Zald 1987). The resource mobilization approach ex-amines the variety of resources required, the linkages of organizationswith their external supporters, and the creation of change in an orga-nization by this resource dependency. In the context of policy making,resource mobilization theory can be used to explain the ability of com-munity organizations to secure funds for citizen participation in advo-cacy and their resulting ability to become intermediary change agentsbetween the state and the community. While this theory can explainhow an advocacy organization is set up and how it maintains levels ofcitizen participation, it sheds no light on the reasons why organizationsinitially arise or on their potential for long-term survival. This issue isimportant in transformational participation and in the participation ofdisability agencies in coalition activities.

New social movement theory addresses these transformational is-sues. Castells (1983) argues that recent social movements have devel-oped in response particular historical and cultural events that areanti-institutional and self-identifying in nature. He asserts that thesurvival of a social movement organization depends on more than arational mobilization of resources alone, since such a narrow focus in-evitably leads to institutionalization and loss of purpose. Castells pro-poses that the future of such organizations depends on improvedcollective conditions, an autonomous community culture, and politi-


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

Interest Group Theory

Another body of theory can be used to explain who participates in pol-icy making and what benefits occur from participation. Interest grouptheory, the predominant political theory of Western democracies, as-sumes that societies are comprised of constituencies with differentgoals and that conflicts between competing interests can be resolved invarious decision-making fora. Pluralism is a particular interest grouptheory that assumes that the government acts in response to the pres-sures of competing interest groups (Dahl 1961). Pluralist research at-tempts to identify who the competing parties are, to what extent theirinterests are mobilized, what resources they command, and what strat-egies are used to gain funding (Milio 1988).

Pluralism has been criticized for assuming that competing interestshave equal power bases and for neglecting structured power imbal-ances in society. The system of democratic pluralism is specifically crit-icized for its limited representation: the poor are the major collectivityexcluded from full participation in the system (Herman 1983). Elitetheorists argue that political power is concentrated in established elitegroupings (Mills 1959). Neo-marxists also argue that elite groups con-trol the political process through influence over the state, which acts asan instrument of economic class domination (Miliband 1969).

An alternative interest group theory is concerned with identifyingthe dominant, challenging, and repressed interests in decision-making groups and assessing how their positions are maintained inrelationship with the predominant institutional and class structures.In an analysis relevant to social policy making, Alford (1975) arguesthat the traditional power of dominant "professional monopolizers"has been challenged by "corporate rationalizers," or groups of healthand social administrators, bureaucrats, and business persons intenton rationalizing the social welfare system to make it more efficient.Alford identifies community advocates as a third interest group thathas largely been repressed in its attempts to gain influence. The


repression of community advocates can be partially explained by lay-professional conflicts (Young 1975) that are part of the disabilitymovement's history.

One of the limitations of interest group theories has been their inad-equate conceptualization of the role of the state. Traditionally, thestate has been viewed as a neutral mediator (Latham 1952), as anequal player (Dahl 1961), or as a body primarily interested in main-taining the status quo (Alford 1975). These views do not explain thecurrent tendency of the state to actively promote a social agenda that isbased rhetorically on fundamental change, for the advancement ofpersons with disabilities. Theories of political economy of the statehelp to clarify this tendency.

Political Economy Theory

Why does the state espouse citizen participation as a primary strategyin policy making? Political economy theories relate the policy arena tosociety as a whole. They acknowledge the powerful interests that ruleCanada, consigning an important role to ideology, and they adopt as-sumptions of critical theory such as emancipation, structural influ-ences, and the power of knowledge (Salmon 1989). An additionalcore consideration in the political-economic view is the legitimation ofdifferent groups as participants in decision-making.

Theories of political economy are generally concerned with the in-fluence of broad economic and political factors on the role of the stateand its actions (Dahrendorf 1959, O'Connor 1973). Theories differon the basis of their views of the role of the state in a class society. InDahrendorf's view of class structure, post-capitalist society has a newmiddle class, increased social mobility, and more equality betweenclasses. Power does not derive from the economic base directly, butthrough relationships of political authority that the state controls. Thestate camouflages the real source of control by espousing "participa-tory democratic" institutions, of which citizen participation may beviewed as the most recent example.

Dahrendorf notes that increased state control of the economy in asocial welfare state brings a need to legitimize this control through cit-izen participation in order to augment the legitimacy usually grantedby elections. In a purely representative democracy, electoral supportfor the ruling party does not sufficiently legitimize the increasing bu-reaucratization of society, and this deficit in support is actively solicitedby those in power. The public, even those who are not supporters ofthe ruling party, are likely to accept their new role in citizen participa-tion, since it seems to represent an opportunity to exert influence.


Dahrendorf emphasizes this political function of citizen participationas a form of participatory democracy.

The neo-marxist perspective on the state, in contrast, is based on aview of the capitalist state as the instrument of the economic ruling class(Miliband 1969, O'Connor 1973, Poulantzas 1974, Gough 1979). Itperceives the state to be dominated by the ruling class principally foreconomic purposes, that is, to maintain capital accumulation (Poulant-zas 1974), and also for reasons of class solidarity (Miliband 1969).

O'Connor (1973) argues that the state must also have a legitimationfunction, in addition to its accumulation function, in order to main-tain social harmony. Welfare state programs, which can include a "con-tributory" participation component (e.g., workfare), are seen tolegitimize the participation of the public in non-economic activities(Gough 1979, Offe 1984).

On a societal level, Navarro (1976) explains that highly capitaliststates prefer democracy to be exercised through a limited electoral sys-tem that functions to legitimize the political process rather than tochange it. At the community level, Navarro (1975) documents thedomination of decision-making bodies within health institutions bycorporate and upper middle class citizens. Similar dominance hasbeen noted in Canadian institutions (Clement 1975). Citizen partici-pation in policy development is viewed by neo-marxists as a legitima-tion strategy of the state through which the community can be givenapparent control over non-economic aspects of the health and socialsectors insofar as this perceived control does not result in capital accu-mulation problems (Waitzkin 1978, Midgeley et al. 1986).

The state may also encourage citizen participation in order to gainsupport in its challenge to fiscally conservative interests that may, forexample, wish to restrict access to health care and social services(Alford 1975, Crichton 1980). Castells (1989) also notes that majorworld forces such as technology, international political influences, andglobal economic network structures are weakening the effectiveness ofintermediate social movements such as citizen participation. The po-tential for citizen participation to seriously resist these macro-structural determinants is doubtful, according to Castells' analysis.

Neo-corporatism, an alternative political economy theory derivedfrom liberalism, may have application to citizen participation since it isconcerned with managing decision-making processes by the state(Mulgan 1984, Van Til 1984). Neo-corporatism asserts that importantdecisions should be made by three primary institutions: the state bu-reaucracy, large corporations, and labour organizations (Panitsch1980, Cameron 1984). The process of "co-determination" by govern-ment, business, labour, and other key social sectors has been proposed


as a mechanism to integrate economic, social/health, and environ-mental policy making (Hancock 1994). Although undemocratic inprinciple since they exclude the masses, neo-corporatist models mayrepresent a functional advance over traditional "representative"majority-rule political bodies in their explicit acknowledgement thatno single sector can unilaterally make structural changes. In addition,nee-corporatism may ensure a public accountability in corporationsand the labour movement that is absent in the present system.

Voluntary associations and groups of disadvantaged persons such asdisability organizations have tended to be excluded from these morerecent decision-making processes since they are not believed to con-trol the resources necessary to affect basic socioeconomic conditions(Van Til 1984). There is no inherent reason, however, that disabilitygroups could not participate in a neo-corporatist model. The key con-dition for participation is the perceived legitimacy of the communitysector, a particular problem for those perceived to have diminishedcapacity (Mulgan 1984).

Political economy theories are useful for studying the motivationsbehind the state's promotion of citizen participation and for under-standing limitations in the state's ability to facilitate it. These theoriesalso offer a framework for analysing the legitimation of citizen groupsin decision making. In sum, political economy theories provide an im-portant perspective on the motivations of the state and may explainthe resources provided to citizen participation in policy making, andthe state's expectations of it. They also provide a balance to theories ofcommunity organization, social movements, and interest groups by fo-cusing on socio-political conditions.

A C R I T I Q U E O F 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 partici-pation (Tesh 1988). Farrant (1991) points out, for example, that,while participation is supposed to be a key strategy in public policyprojects, there is little resource support for it in practice. Advocacygroups are often understaffed and limited in their funding terms, a sit-uation that precludes public involvement in needs identification, skilldevelopment, and ongoing policy development activities.

Although community members are supposed to be central in partic-ipatory strategies, competition between more powerful professionaland bureaucratic sectors often marginalizes the community (Smithies1987). Similarly, even though community experience is claimed to bethe primary basis for planning local projects, funders often give morecredibility to scientifically based knowledge (Stacey 1988).


Pederson et al. (1988) note that citizen participation often impliesmass community activities, but that in reality specific interest groupstend to dominate. Participation may be intended to promote equity,but there is always a risk of inequitable distribution of benefits in apolicy context, depending on who is involved and how the process iscontrolled.

On a macro-level, Navarro (1984) notes that there is a contradictionin the state's advocating local autonomy while maintaining central-ized, bureaucratic planning of public programs. At the local level,there is a parallel contradiction in the use of the rhetoric of empower-ment without an understanding of power relations in the community(Farrant 1991).

Similar concerns about citizen participation are voiced in Canadianjurisdictions. In Ontario, Pederson and Signal (1994) note ambiguityin government calls for citizen participation that on the one handpromise group empowerment and on the other hand expect individ-ual responsibility. They question whether this ambiguity results in afalse consensus in advisory groups such as the Ontario Premier's Coun-cil on Health Strategies, which can reflect individual members' per-spectives rather than formal agreements by constituent groups. Thisconfusion, which will be discussed later in a distinction between repre-sentativeness and representation of consumer groups, may mask inter-nal conflict and make concrete policy progress unlikely.

Overall, social movement theories and interest group theories seemto provide the most appropriate explanations for citizen participationin disability policy making. These theories tend to capture the re-sources required for participation, the unique aspects of disability cul-ture, and the structured interests of opposing professional andbureaucratic actors. In contrast community organization theories ofparticipation generally assume more established forms of organizationthan the emergent disability groups in these cases demonstrate. Fi-nally, political economy theories of citizen participation, while attrac-tive on a macro-level, require that data be collected on a larger scalethan these four case studies can provide.

3 Constitutional Ferment:Proceeding to Patriation

Our case studies of the participation of Canadians with disabilities inpolicy making can be organized generally into federal cases - thosedealing with rights of inclusion in Canadian society; and provincialcases - those dealing with capacity for decision making. The federalcases deal with policy making on issues of human rights, prohibition ofdiscrimination, and access to services, which are topics of interest tomany minority groups. The provincial cases deal with issues of capac-ity, decision making, and the role of personal advocates, and are ofparticular 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 manydiverse 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 impacton the legislative process at all levels of government.

Many students of Canadian politics attribute this increased influ-ence to the growing second generation "rights consciousness" evi-dent among disadvantaged groups in our society: citizens have agreater tendency to demand official governmental recognition andsupport of their concerns and entitlements using the specific lan-guage of constitutional rights. And, according to Alan Cairns (1990),the clauses of the Constitution that single out particular characteris-tics 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 Canadiancitizens, but people with specific social or political identitiesgrounded in our differences. These differences in turn shape how werelate to each other and to government. Explanations of policy mak-ing from both interest group and social movement perspectives havebeen facilitated by this trend.

It is within this context that advocacy groups representing individu-als with disabilities emerge and find their place in the policy-formationprocess. Since section 15 of the Charter of Rights and Freedoms givesexplicit recognition to the injustice of discrimination based on mentaland physical disability, advocacy for the rights of persons with disabili-ties has become an extension of this constitutionally based set of legalrights and entitlements. Moreover, if effective advocacy requires partic-ipation in the complex machinery of governmental policy making,then groups representing people with disabilities must become signifi-cant players in this process.

In each case study, we begin by sketching the context within which aspecific policy issue emerged and by describing the interests of advo-cacy groups in that issue. We then present a detailed chronologicaloverview of the main events in the development of policy regardingthat case. We continue with our analysis of the organizational charac-teristics of the featured disability groups, in particular, their mandate,resources, and networks with other organizations, as well as their mem-bers' participation. A close look at the various processes of citizen par-ticipation follows. We trace the roles and strategies undertaken by keygroups and coalitions in order to influence the legislation. In addition,we identify the basic mechanisms through which key advocacy groupsgained access to significant policy-making centres. Finally, we confrontthe outcomes of disability advocacy group participation in these policyprocesses. Here we examine both the "objective outcomes" - the ac-tual legislation achieved and the influence advocacy group membershad in shaping it - and the "subjective outcomes" - the perceptions ofthe main stakeholder groups about their roles and influence. We alsotry to elicit the perceptions of key stakeholders about their successesand failures in these policy processes and about the lessons theylearned over the course of their participation.

Since the Charter of Rights and Freedoms represents the fundamen-tal legal argument for including persons with disabilities in the policy-making process, it is important background for both federal and pro-vincial cases. Thus, we start by reviewing the Charter's appearance onthe Canadian scene as part of the patriation of the Canadian Constitu-tion from Great Britain.

4-O A Seat at the Table

THE PATRIATION OF THE C A N A D I A NC 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 accommo-dation went down to defeat. This round of constitutional negotiationand review had begun in 1968 and ended with Quebec vetoing theVictoria Charter in 1971, primarily because of the Trudeau govern-ment's refusal to grant Quebec jurisdiction over important aspects ofsocial policy (language, income support, occupational training, andunemployment insurance).

According to Peter Russell in Constitutional Odyssey, this defeat wassignificant in many respects. First, and most important, it representedthe first "mega-constitutional" review process to fail. This was a consti-tutional review process that was concerned with fundamental ques-tions about our political identity and not simply with narrowly definedamendments or specific technical proposals dealing with amendingformulae. "Mega-constitutional" review processes are exceptionallycharged events that question the very soul of our political communityand the basis of our common citizenship. They tend therefore to reachbeyond the various political elites and involve the general populationmore directly (Russell 1993, 75-92).

Second, according to Russell, the Victoria Charter attempt was thefirst serious clash between traditional views of Canadian federalism, asarticulated by Trudeau-brand liberalism, and emerging Quebec na-tionalism. Despite vows taken in 1968 by the Trudeau government thatQuebec's concerns would neither dominate the agenda nor determineits final outcome, we see Quebec's interests winning out for the firsttime.

A third reason for the significance of the Victoria Charter was thatmuch of its substance was later to reappear in the 1982 Patriationdocument, the Meech Lake agreement, and the Charlottetown Accord.For example, Trudeau pushed for a "bill of rights" to be included inthe Victoria Charter that later appeared as the Charter of Rights andFreedoms in the 1982 patriation of the Constitution. Also, the amend-ing formula for constitutional change in Victoria was similar to the onefound in the Charlottetown Accord.

Finally, according to Russell, although the Victoria Charter processrepresented the cutting edge of constitutional thinking of Canada'spolitical elites, and despite a formal agreement among first ministersas to the contents of the reform package, it suffered defeat at thehands of the Quebec legislature.


This first round of mega-constitutional deliberation was clearlydominated by various political elites, with the federal government ex-ercising the lion's share of control over the process. For the mostpart, advocacy groups and citizens' groups were yet to make theirappearance on the constitutional scene. Constitutional experts, andscholars studying the process of policy participation, tended to focuson intergovernmental negotiations, separate federal and provincialpolitical initiatives, and questions concerning the legal status of vari-ous proposals. For example, according to Russell, during the mid tolate 19705, Aboriginal rights were not generally thought to be part ofthe constitutional agenda, nor were rights for people with disabilities.This situation was not to change until the final stages of the patriationprocess in the early igSos, and even then these groups were stillmarginalized.

This is not to say that various groups of citizens did not have legiti-mate concerns that might require constitutional recognition or protec-tion. The point is that they had not organized into formal lobbygroups to press their claims. Moreover, the federal Liberals were notparticularly receptive to recognizing differences such as those basedon disability and ethnicity, because the prevailing liberal conception ofcitizenship emphasized our common political bonds with respect toonly one community - the community of a united Canadian federa-tion. Also, the Liberals were hostile to Quebec's continuing claims forpermanent constitutional differentiation and so they fought againstany attempts to divide citizenship along so-called sectarian lines. To-day, in the post-Meech Lake and Charlottetown Accord world ofconstitutional struggle, such exclusionary thoughts are virtually incon-ceivable.

Since there is very little literature on the role of advocacy groups inthe 19708, it is difficult to map out their activities during this time withrespect to constitutional change. Nonetheless, we sketch the major po-litical events between 1976 and 1980 as a background to the eventsthat led to the patriation of the Constitution in 1982. It was not untilthe Special Committee of the House of Commons on the Constitutionwas struck in 1980 that we see any significant involvement of advocatesfor 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 negotia-tion receded into the background for five years. But in the early springof 1976, with Quebec poised to elect the separatist Parti Quebecois inthe upcoming fall election, Trudeau sent a letter and draft proclamation


to the premiers of the provinces that set out his plans for a proposedconstitutional agreement.2 According to Roy Romanow, then attorney-general of Saskatchewan, "both the letter and the draft proclamationwere based on the assumption that Quebec nationalism was the most im-portant issue behind constitutional reform."3

Quebec nationalism was not the only important item on the consti-tutional agenda, however. Significant changes to the social, legal andeconomic landscape of Canada were making an impact on a renegoti-ated federalism. Three of the most important areas of changes werethose associated with western Canada's newly discovered wealth in thepetroleum industry, issues of Aboriginal rights, and increased regionalalienation.

In the early 19705, Alberta's rapid increase in wealth and urbaniza-tion, which was directly attributable to the skyrocketing internationalprice of oil and the strong electoral support for the conservative gov-ernment of Peter Lougheed, gave that province a newfound sense ofpower. The strengthened alliances forged between the petroleum in-dustry and the Alberta government increased resolve that the prov-ince maintain control over this form of wealth creation. Could theConstitution adequately ensure provincial control over economicresources?4

Ottawa's initial reaction to the rapid increase in oil prices alarmedthe provinces. According to Russell's analysis, the federal govern-ment's policy at that time was to protect Canadian oil consumers fromprice increases by keeping domestic oil costs well below internationallevels. It introduced an oil export tax to finance this policy (which, ineffect, subsidized consumers, most of whom lived in central Canada)at the expense of the western provinces. Furthermore, to ensure thatOttawa, and not the provinces, had access to the major share of tax rev-enues generated by the oil boom, the federal government provided ad-ditional regulations that prevented oil companies from claimingroyalties paid to the provinces as federal income tax deductions. Andfinally, in 1978 and 1979, two Supreme Court of Canada decisionsfound that provincial schemes to tax and regulate resource industrieswent beyond the provinces' constitutional powers.5 Thus, most west-erners felt that the constitution left them unfairly vulnerable to the in-terests of central Canada.

A second change that affected federalism in the 19708 concernedthe status of the various justice-based claims advanced by First Nationsgroups. It is well known that constitutional recognition of land claims,and cultural preservation for First Nations, was not part of Trudeau'svision of the Canadian political community. Indeed, the group mostoften recognized as a legitimate minority within Quebec in need of


constitutional protection for self-determination was not the FirstNations but the anglophone minority.

However, in 1973 the Canadian Supreme Court ruled in a landmarkdecision (Calder v. Attorney-General of British Columbia [1973]S.C.R. 313) that Aboriginal title existed in Canadian law. In this casethe court was asked to rule on whether the Aboriginal title of theNisga'a people to their ancestral lands had been forfeited by laws ofthe old colony of British Columbia. Although the courts did not findin favour of the Nisga'a people, they gave, for the first time, constitu-tional recognition to the Aboriginal right to advance land claims.6

This decision was the determining factor in the federal Liberal gov-ernment's change of policy toward First Nations peoples. The federalgovernment now recognized the need to enter into comprehensiveland claims negotiations with First Nations groups. According toRussell, this was the first step to a broader constitutional recognition ofAboriginals as founding peoples.

A third change concerned the rise of specific regional identities andthe alienation this created. This alienation emerged essentially as a re-action to Ontario and Quebec's domination determining the constitu-tional agenda and to the centralization of decision-making authoritywith the federal government. A major effect of regional alienation onthe political level was that during the 19703 the federal Liberal govern-ment had few elected representatives from the western provinces. Thischange in allegeance resulted also from the many federal policy initia-tives such as official bilingualism and the national energy policy thatcentralized revenues in Ottawa. But rather than signalling a desire forretreat from federalism as such, this form of alienation led to demandsfor greater inclusion in decision making about public policy.

As a result of these three trends, according to Russell, Canada was bythe mid-1970s engaged in a serious effort to redistribute power to theprovinces. Evidence of this power shift is that provincial and local gov-ernment spending as a percentage of the Gross National Product rosefrom 15.1% to 23.1% and federal government spending fell from16.2% to 15.5%. Provinces in Atlantic Canada were also concernedwith increasing their involvement in federalism as well as with gainingmore control over their natural resources (the fishing industry, off-shore oil development). As a consequence, federal-provincial relationsdominated 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 ofgovernmental structures had any influence over the constitutional pro-cess. With these background factors in mind, we turn to the actualevents of the latter half of the 19705 with respect to the Constitution.


Round Two: 1976-80

Trudeau's draft proclamation, which was circulating among the pre-miers of Canada's provinces in the spring of 1976, was the first movein round two of the constitutional process. According to RoyRomanow, (Romanow 1984, 2-4) Trudeau's new proposals reflectedmost of what had been in the defunct Victoria Charter. For example,in the first part of the proposal, the same constitutional amending for-mula that was in the Victoria Charter was set out.7 In essence, theseproposals stressed patriation, the Victoria amending formula, and min-imal enhancement of provincial jurisdiction in the field of languageand culture. It remained silent on issues of resource management, en-ergy, and increased power for the western provinces. What is especiallysignificant about Trudeau's proposals is the absence of any mention ofa charter of rights and freedoms.

In August 1976, the provincial premiers met in Edmonton to discussTrudeau's new proposals. As Romanow argues, this process wasmarked by a spirit of cooperation in which each premier was trying towork out an agreeable solution to accommodate everyone's priorities.The overriding objective in this context was to present a united frontto the federal government in order to gain a position of strength at thebargaining table.

In the follow-up conference in Toronto in October 1976, it becameclear that this was the first attempt since the Victoria Charter in 1971 toaddress an expanded agenda of constitutional issues. In a joint letterwritten by the premiers to Trudeau, the provinces outlined their needsregarding constitutional negotiation for patriation: an expanded rolefor the provinces in culture, communications, Supreme Court of Can-ada appointments, spending power, Senate representation, and mecha-nisms to deal with regional disparities.

In addition, the premiers achieved consensus on the following issuesof jurisdiction: greater provincial control over immigration; guaran-tees of English and French language rights; control over the taxationof lands, mines, minerals, and forests; a First Ministers' conferenceeach year to discuss the Constitution; and the stipulation that the cre-ation of new provinces be made subject to a new amending formula.8

After the Quebec election in November 1976 and the victory of theParti Quebecois with its separatist agenda, the federal government ini-tiated a series of constitutional conferences, workshops, and taskforces to explore new constitutional initiatives. Two events stand out inthis process.

The first occurred in July 1977 when the federal government strucka task force to study Canadian unity. Its outcome was that the Pepin-


Robarts Task Force on Canadian Unity was set in motion. Its mandatewas to travel across the country to collect and publicize the views ofCanadians with respect to the state of the federation, as well as to pro-vide the government with ideas and initiatives on Canadian unity. Thesecond significant event was a week-long conference in October 1977,during which concerned citizens from across Canada gathered at theUniversity of Toronto and produced a book entitled Options Canada?This was the first attempt by citizens' groups to gain input into the con-stitutional process. However, according to Russell (99-100), the pro-posals emerging from this document were ignored. At roughly thesame time, Trudeau was pursuing his own agenda by preparing newconstitutional proposals.

In June 1978, the federal government released a new white paperon the Constitution, "A Time for Action." Almost simultaneously thegovernment tabled Bill C-6o to give legislative import to its new pro-posals. "A Time for Action" proposed that constitutional reform pro-ceed in two phases. Phase one would deal with matters that could beamended by the federal government without consent of the provinces.In addition, phase one would emphasize the reform of the central fed-eral institutions, produce a statement of fundamental objectives of theCanadian federation (a type of "Canada Clause"), and, most signifi-cantly, provide for an entrenched charter of rights.10 This version ofthe charter of rights, however, would apply only to the federal govern-ment, although provinces could opt in if they wanted. Phase one of theconstitutional process was to be completed by ijuly 1979, with orwithout provincial consent.

Phase two of the process would deal with issues in which the consentof the provinces was required, in particular with the controversial divi-sion of powers between the federal and provincial levels of govern-ment. In addition, the issue of Aboriginal rights would be discussed.This second phase was to be completed by i July 1981. Bill 060 set outmany of the details of the federal proposals with respect to phases oneand two.''

What is important to note here is the scope of the rights and free-doms outlined in both "A Time for Action" and Bill 060: official bilin-gualism, minority language education rights (French in EnglishCanada, English in Quebec), equality of French and English in federalgovernment institutions and the courts, mobility rights, and liberalrights and freedoms (freedom of expression, association).12 Nowhereis there any mention, however, of equality rights or non-discriminationrights (as they were called in the first draft of the full Charter of Rightsand Freedoms, 1980), or of affirmative action programs designed tomeet the needs of disadvantaged groups.


Following the announcement of the federal proposals in June 1978,a number of constitutional conferences, task forces, and workshopssprang up, many of which were sponsored by the provinces, politicalparties, private citizens, and interest groups.13 Moreover, the federalgovernment established another committee to travel across the nationand gather views and evidence about the constitutional proposals artic-ulated in "A Time For Action." Thus, the Special Joint Senate/Houseof Commons Committee on the Constitution was formed (or theLamontagne/MacGuigan committee after its chairs) to review the gov-ernment's constitutional proposals and receive public input into thefuture of the Canadian federation.

The nineteenth annual premiers' conference, held in Regina inAugust 1978, focused on the state of the economy and the Constitu-tion. The discussions centred on the shortcomings of Bill 060 in par-ticular, concluding that the bill amounted to an attack on provincialauthority. Mobility rights, official language rights, and minority lan-guage educational rights, as set out in the charter of rights and free-doms sections of Bill c-6o, were thought to be objectionable on bothpractical and theoretical grounds. Objections were based on two fac-tors: the costs of implementing official bilingual services where thenumbers warranted, and concerns that the decision-making authorityof legislative bodies would be usurped by the courts on matters oflargely provincial jurisdiction.

Bill c-6o went down to defeat as a result of the objections of the firstministers and objections raised in the House of Commons. The major-ity of the provinces judged the constitutional proposals articulated bythe federal Liberal government to be simply unacceptable.

In late October 1978, however, the provinces and the federal gov-ernment met to discuss reforming the package of constitutional pro-posals of Bill 060. Trudeau agreed to modify his two-phase programand work towards the negotiation of fourteen items, which includedthe issue of division of powers that was close to the hearts of the prov-inces. In addition, the first ministers discussed and negotiated all as-pects of the federal proposals. They also formed a committee ofprovincial and federal representatives to continue working towards aviable set of constitutional proposals. The Continuing Committee ofMinisters on the Constitution (CCMC) met several times during thewinter months of 1979 to develop a draft text for a reformed constitu-tion. This committee continued meeting to refine constitutional pro-posals and, according to Romanow (who was co-chair of thecommittee), was extremely influential in setting the tone for all negoti-ations until 1980. Finally, in February 1979, the CCMC completed its"best efforts" draft, which enjoyed the support of most governments.14


The constitutional conference held at this time to debate the "bestefforts" draft was, according to Russell (105-15), "as close as Canada'spolitical leaders came during the Trudeau era to reaching a compre-hensive agreement on constitutional reform." However, with the ap-proach of a federal election, the spirit of non-partisanship movingthese deliberations was coming to an end.

In May 1979 the Progressive Conservative Party under Joe Clarkformed the new minority federal government. According to Romanow(55), the policies of this new federal government towards constitu-tional reform were shallow and vague and did not involve the seniorgovernment officials who had been instrumental in the process underthe Trudeau regime. Over the next several months, the Clark govern-ment found itself at odds with the provinces over many important mat-ters, including natural resource policy and constitutional reform. Atthe end of 1979, with its new budget defeated in a vote of non-confidence, the Conservatives were thrown out of office, and theLiberals under Trudeau were ushered back into power with a hastilycalled election in the spring of 1980.

Trudeau's electoral victory signalled renewed faith in the process ofconstitutional reform, and he acted quickly to restore the integrity ofthe process he had initiated. The year 1980 became, in Russell's words(107), "a watershed in Canada's constitutional politics." With the PartiQuebecois government's term quickly running out and the defeat ofthe Quebec referendum on sovereignty, the time was ripe for pushingahead with constitutional reform. By June 1980, Trudeau had theCCMC committee under way again with new draft proposals and a firstministers' meeting scheduled for September 1980. By October it wasclear that the federal government intended to act unilaterally to se-cure a constitutional agreement if no workable compromise with theprovinces could be reached (Russell, no).

But the most significant event for purposes of citizen participationoccurred when another parliamentary committee (Hays-Joyal) wasstruck to travel across the country and gather responses to the govern-ment's constitutional proposals. From late fall 1980 through to spring1981, this special parliamentary committee met with individual citi-zens, interest groups, and advocacy groups across the country and hadthe 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 forthe first time. Many advocacy groups representing these individualsmade strong presentations to the Hans-Joyal committee, and the gov-ernment was keen on amending its constitutional proposals to accom-modate their concerns, despite the lack of provincial government


support. As Russell summarizes: "The remarkable feature of this par-liamentary committee and the key to its political efficacy was the ex-tent to which its government majority was willing to accept (one mighteven say desired to accept) amendments to the government's proposal... Among the accepted changes were the following: ... The additionof 'mental or physical disability' to the list of unconstitutional groundsof discrimination."1 5

According to Russell (115), these sorts of changes were directly at-tributable to the activities of advocacy groups. Moreover, not only didtheir 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 publicexpectation about popular participation in constitution making. In ad-dition, this process produced a whole new set of players in the arena ofconstitutional reform: the advocacy groups whose claims gained ex-plicit constitutional recognition and whose perspective had usuallybeen indifferent to federalism.

Russell's point (115) is that federalism provides a perspective, andstructures, that characterize the country as being a federal state, a statemade up of provincial and federal communities. This constitutionalconcept, which had been in force since Confederation and had re-stricted the constitutional process to political parties and bureaucrats,does not in itself recognize interest groups as parties to constitutionalreform. Russell (see also Cairns 1988) notes that interest groups weretraditionally uninterested in negotiations on federalism itself (sincethey had nothing to gain from it) and were more interested in otherways of protecting their uniqueness, such as a charter of rights. How-ever, disability groups were an exception to this general rule since theydid have something to gain from federal-provincial negotiations on so-cial welfare jurisdiction. Since persons with disabilities required publicservices 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 repre-sented the federal Liberal government's desire to repatriate andamend the Constitution and include a charter of rights and freedomsfor the citizens of Canada. Indeed, the most significant moment seemsto have been the spring of 1980 - right after the election of the LiberalParty - and the creation of the special Hans-Joyal parliamentary com-mittee on the Constitution in late 1980. This period set the stage for abattle over the decentralizing priorities of the provinces and the cre-ation of new constitutional players - advocacy groups for disadvan-taged Canadians, not the least of which were organizations of peoplewith disabilities.

4 The Canadian Charter of Rightsand Freedoms: The PoliticalBattle over Four Words

P A R L I A M E N T A R Y C O M M I T T E E S

A N D T H E C H R E T I E N F A C T O R

The Canada Act Bill (or Patriation Bill as it was called), which includeda draft version of the Canadian Charter of Rights and Freedoms, wasintroduced into Parliament in October 1980, and the final version wasapproved in April 1981. In that interval, several changes to the word-ing of the Charter were put into place, many of which occurred in sec-tion 15(1), the section that set out the constitutionally protectedequality 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 equalprotection of the law without discrimination because of race, nationalor ethnic origin, colour, religion, age or sex." This wording was basedon section i of the 1960 Canadian Bill of Rights, which provided anon-constitutional guarantee of equality, one which was widely felt tobe 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 rightscommunity, the wording of the proposed constitutional guarantee wasmore than inadequate; it was an insult. Though section 15 purportedto prohibit discrimination and guarantee equality to all, it did not evenmention physical or mental disability. The political battle to add fourwords to section 15(1) - the words "mental and physical disability" -began. The events leading up to 28 January 1981, when these words


were formally appended to section 15(1), provide an intriguing, andtelling, glimpse into the role of disability advocacy groups in the lobby-ing process.l

For neophytes in the game of political lobbying, the issue of thewording of section 15(1) presented an ideal focus for advocacy. It wasevident that the Government of Canada was proposing a constitutionalstatement of the equality rights of Canadians that did not include peo-ple with disabilities, thereby implicitly sanctioning discriminationagainst them. Symbolically, this exclusion was a slap in the face forCanadians with disabilities, and so became a challenge to advocates andactivists. And it was a challenge that had to be addressed: If disability ad-vocates did not pick up this gauntlet, how could they remain credible?

Fortunately, too, the stated aim of putting four simple words intosection 15(1) was a discrete and understandable political objectivethat most Canadians could easily sympathize with. Nothing concretewas being demanded — no new disability pension funding scheme orrequirement that employers tear out stairs and put in ramps. Peoplewith disabilities were merely asking for inclusion in a general legalstatement prohibiting discrimination. If the federal government wasnot willing to come out against discrimination levelled at people withdisabilities, how could its other policies be supported?

Behind the symbols, as legally trained disability advocates knew onlytoo well, there was a great deal at stake. It was conceivable that courtsmight interpret the list of prohibited areas of discrimination given in sec-tion 15(1) (and by extension the list of legally recognized equality-seekers) to be exhaustive, thereby permanently undermining potentialclaims of discrimination by people with disabilities. Moreover a suspicionlurked - confirmed by later events - that the omission was deliberate.

On the other hand, if disability advocates were successful and per-suaded legislators to extend to people with disabilities the legal protec-tion and guarantee found in section 15(1), this inclusion would createnovel legal opportunities for the advancement of their cause. Indeed,to this day, there is still no other country on earth that has a constitu-tional guarantee of equality rights for people with disabilities.

The brief, perfunctory, yet unanimous vote of a ParliamentaryCommittee on 28 January 1981 to formally append the words "mentalor physical disability" to section 15(1) was in fact a considerable lobby-ing coup - an unqualified, untarnished success on the part of disabilityadvocates. That this fact never made the newspapers, and indeed hasfaded into historical obscurity, can be explained by considering thesweeping background events that overshadowed this victory.

The reinstatement of the Continuing Committee of Ministers on theConstitution (CCMC), which had been sidelined during the Clark

51 The Canadian Charter of Rights and Freedoms

Conservative administration and the defeat of the Quebec referendumon sovereignty, defined the moment for Trudeau to push ahead withconstitutional reform. As mentioned earlier, by June 1980, the CCMChad begun to consider new draft proposals, and a first ministers' meet-ing was held in September 1980 to chart the course for patriation.During that meeting it became clear that the federal government in-tended to act unilaterally in order to secure a constitutional agree-ment. With drafts of what was to become the Charter in hand, a newparliamentary committee was constituted, one which sought, for thefirst 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 monthsspanning 1980 and 1981. One was the Parliamentary Special Committeeon the Handicapped, an all-party committee chaired first by MP WalterDinsdale and then later by MP David Smith, which was created in 1980 toenquire into the status and needs of persons with disabilities in Canada.The creation of this committee, which was later transformed into a stand-ing committee that still exists, had nothing directly to do with the Consti-tution or with patriation; it was, rather, Canada's response to the UnitedNations' designation of 1981 as the International Year of Disabled Per-sons. It was a stroke of good luck fully exploited by disability advocatesthat the theme of the UN'S International Year of Disabled Persons was"Equality and Full Participation."

The Parliamentary Special Committee on the Handicapped heldhearings on disability issues across Canada during the summer of 1980and listened to the testimony of some 400 witnesses. Although therewas no formal link between this committee and the patriation process,the committee provided disability advocates with much-needed evi-dence that people with disabilities could plausibly be viewed as a disad-vantaged minority group, on a par with other groups that were namedin section 15(1). The committee's final report, entitled "Obstacles,"included among its many resolutions that: "If Parliament decides toenshrine human rights in the patriated Constitution, the Committeefeels that complete and equal protection should be extended to per-sons suffering from physical and mental handicap" (Canada Health &Welfare 1981).

The second forum to focus on disability issues during this period wasthe updated Special Joint Committee of the Senate and the House ofCommons on the Constitution of Canada known as the "Hays-JoyalCommittee." As earlier mentioned, this parliamentary committee wasconvened to obtain public input and review the draft provisions of theConstitution embodied in the Canada Act Bill that had been tabled be-fore Parliament in October 1980.


Three disability advocacy groups made formal presentations beforethe Hays-Joyal Committee from mid-October 1980 to 12 January 1981,when the Committee began its clause-by-clause review of the CanadaAct Bill. These groups were the Coalition of Provincial Organizationsof the Handicapped (COPOH), a Winnipeg-based federation of provin-cial advocacy groups; the Canadian Association for the MentallyRetarded (CAMR), a research, advocacy, and service-providing agencyserving people with developmental disabilities; and the CanadianNational Institute for the Blind (CNIB) , an agency providing rehabili-tative and other support services to blind and visually impairedCanadians. The able-bodied representative of CAMR was also accompa-nied by a spokesperson for People First, an advocacy group for peoplewith psychiatric conditions. At this time, these groups were not repre-sented directly by persons with disabilities. That trend did not beginuntil the late 19808.

The Hansard records of the Special Joint Committee proceedings re-veal some of the political dynamics of those two months of hearings.Although dozens of groups were represented at the hearings, the pre-sentations relevant to disability issues can be separated into two stages.

The first stage began in mid-October with the tabling of the first draftof the Charter and lasted until the Christmas break. Justice MinisterJean Chretien revealed in his remarks to the Special Committee thatthe "best advice" from his advisors in the Justice Ministry was that therewould be considerable "drafting problems" associated with definingwhat constituted a disability and that rights for people with disabilities,had not yet "matured" in Canadian society. Chretien stated that it wasbest to leave the reference to persons with disabilities out of the word-ing of section 15(1) and wait for the provinces and federal governmentto agree, at some later date, to amend the Constitution by adding dis-ability 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. Theywere supported from time to time by sympathetic remarks included inthe submissions of other groups, most notably the Canadian HumanRights Commission (represented by Gordon Fairweather) and theNew Brunswick Human Rights Commission (represented by Dr NoelKinsella). COPOH 's submissions were presented primarily by YvonnePeters, Ron Kanary and Jim Dirkson, while David Vickers spoke forCAMR and David Lepofsky testified for the CNIB. These submissionswere principally directed at the general condition of people with dis-abilities in Canada, and references were frequently made to the find-ings and recommendations of the Parliamentary Special Committeeon the Handicapped.


The second stage began on 12 January 1981 when Justice MinisterChretien tabled a package of amendments that his government wasprepared to accept in light of the testimony presented to the commit-tee before Christmas. The justice minister revealed that, though hehad considered the proposal to add "mental and physical disability" tothe list of protected classes, he had decided against it. This sparked avigorous debate and a heightened pitch of lobbying activities thatlasted until 28 January 1981, when Chretien informed the committeethat he was prepared to endorse the so-called handicap amendmentdespite opposition by the Justice Department. At this point, after a mo-tion by MP David Crombie, the words "mental or physical disability"were formally appended to section 15(1) by unanimous vote of theHays-Joyal Committee.

During this second stage, the disability activists had to addressChretien's three principal objections to adding disability to the list ofprotected groups. First, Chretien argued that his government was leav-ing room for disability to be addressed by judicial decision: "If there ispositive discrimination against handicapped and nobody is acting, inmy reading of that section, the courts could intervene." (Hansard,Issue no. 36, 22). Second, he repeated his earlier claims that disabilityrights had not yet matured in Canadian society, as evidenced by theproblems in defining the population to be protected. Finally, Chretienargued that the provincial statutory human rights codes that were al-ready in place, and those to be developed in the near future, obviatedthe need to protect disability rights constitutionally.

There was, however, a fourth objection that was never fully ex-pressed by Chretien, although nearly every submission in the two-weekperiod had vigorously disputed it in one way or another: that a consti-tutional protection of the rights of people with disabilities would betoo costly to recognize.

Once these objections were aired, the work was cut out for disability ac-tivists who were in Ottawa to address the Special Joint Committee. Manyof the arguments that were needed had already been provided by the re-port of the Parliamentary Special Committee on the Handicapped.Some of the more specific legal arguments were addressed by David Lep-ofsky, a 23-year-old blind lawyer who had just finished articling and was inthe middle of the bar admission course, as well as by David Vickers ofCAMR, and Ron Kanary and^Wonne Peters of COPOH.

The record makes clear that throughout this period there were ahandful of MPS who actively supported, and often provided key argu-ments for, the disability activists. Of note in this regard were SvendRobinson and Neil Young, both of the NDP party, Walter Dinsdale,James McGrath, and David Crombie of the Progressive Conservative


party, and Bryce Mackasey of the Liberals. At various points, in whatturned into an active debate with Justice Minister Chretien, one or an-other of these MPS was able to push along the case for inclusion of dis-ability rights.

But the most interesting dynamic revealed by the record of bothstages of these meetings was the ambivalence of Chretien himself.From the start, Chretien made it evident that he was not in full agree-ment with, and in cases was even embarrassed by, the "best advice" hewas being given by his advisors. From the record, one can seeChretien's unease that the line he was taking was exploited by both thewitnesses and the other politicians.

When grilled by Bryce Mackasey, for example, Chretien defended hisdecisions not to include disability, and then added: "Myself as a human,as a politician and as a man who has always been preoccupied with thedisadvantaged groups in this society, I am not happy to give you that an-swer" (Hansard, Issue no. 37, 23). And to Svend Robinson's challengethat Chretien go back to his advisors and seriously consider the possibil-ity of adding disability as an additional ground of discrimination,Chretien sheepishly replied: "You understand my problem. Yes, I willgo back to my advisors ... There is nothing that would please me moreto add that word there. But I have at the same time to make sure thatwe are not creating a problem that will be very difficult for the adminis-tration of the law, the judgement of the court, the legislature and soon" (Hansard, Issue no. 37, 23). Even during the technical debate overhow to legally define disability, Chretien revealed a side of himself thatsuggested a basic sympathy with the disability cause: "There are manytypes of handicaps in this society. We all have handicaps ... perhaps theway I talk is a handicap" (Hansard, Issue no. 37, 22).

In the end, the four words "mental or physical disability" wereadded to section 15(1) of the Charter. The public record speaksclearly about the dedication of a small handful of activists who man-aged to keep up the pressure during the crucial two-week period be-tween 12 and 28 January 1981, when the government, represented atthe Hays-Joyal Committee by Justice Minister Chretien, completely re-versed its position and included people with disabilities as a group ex-plicitly protected against discrimination in the Constitution of thecountry.

THE A D V O C A T E S AND

THEIR O R G A N I Z A T I O N S

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


organization composed of representatives from provincial disability or-ganizations. COPOH was originally chaired by Allan Simpson, a long-time disability organizer who had been instrumental in creatingCanada's first national disability organization. In the mid-1970s,Simpson was involved in the formation of the Manitoba League for thePhysically Handicapped and then helped to form an alliance with theVoice of the Handicapped (Saskatchewan) and the Alberta ActionCommittee for the Handicapped. With these regional structures inplace, Simpson realized that the movement needed a national, as wellas a regional, presence to influence federal policy. This plan necessi-tated linking up with like-minded groups in Ontario, Quebec, and theMaritimes, as well as British Columbia. After a few halting attempts topull an organization together, COPOH came into existence in 1976.

In the summer of 1978, during the planning stages for COPOH'sscheduled national convention in Winnipeg (sponsored by CanadaManpower and Immigration) Jim Dirkson, recently hired as a full-time COPOH staff member, began to think about the potential roleof disability advocacy in the constitutional debate. Dirkson, who wasto become national co-ordinator of COPOH and hold that positionthroughout the patriation process, had recently graduated fromthe University of Manitoba and had read widely about the disabilitymovement in the United States and events leading up to the pas-sage of the Vocational Rehabilitation Act of 1976 and its anti-discrimination provisions. As Simpson relates, Dirkson used thenational convention to turn COPOH into a lobbying organization atthe federal level.

At that meeting, Simpson recalls, "Jim Dirkson pointed out in a verysharp and analytical way that Trudeau was beginning to move on theConstitution, and that if the Charter of Rights was ever to be enactedin Canada, and if it defined categories of people entitled to protectionfrom discrimination, and if that listing - a simple listing of categoriesof race, religion, colour, creed, sex - did not include persons with dis-abilities, then the court systems and the judgments in the precedentcases would put a priority on those categories which were defined."2

Since many delegates to the 1978 convention had experience with hu-man rights legislation in their home provinces, they were familiarenough with the legal details to be highly receptive to Dirkson's pleathat a strategic planning process begin.

However, some of the provincial organizations that were recruitedto join COPOH - the United Handicapped Groups of Ontario, for ex-ample - were primarily social and recreational networks and werewholly unused to political activity of any sort. As Dirkson characterizesthese groups: "They had a much older model of wanting to serve the


membership with recreational and social opportunities, largely in a ...social universe where people with disabilities were segregated in oneway or another from others, or isolated from one another, and theirconcept of change was more in the sense of role models, or public ed-ucation, or general encouragement of society from a very low key, lowenergy 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 beenserving people with hearing problems since 1925.

Over the years, COPOH made a conscious attempt to politicize its af-filiate membership, and in some cases, to directly assist more radicalmembers of the national group to change their constitutions to be-come more activist. These moves were not always successful. Dirksonrecalls that during an annual meeting of one disability group, a pro-posed change to the constitution to allow political lobbying lost by ahandful of votes and "there were tears in people's eyes. I recall quiteclearly that the activists who had struggled so hard to transform thatexisting organization into a more active one, were bitterly disap-pointed in that struggle..."4 More often, however, COPOH became amodel that local organizations readily adopted. For example, PersonsUnited for Self-Help (PUSH) Ontario, which had a strongly activist phi-losophy, grew directly out of meetings with COPOH activists in theOttawa area.

It is interesting to consider in this light one of the other major play-ers in the amendment process. David Lepofsky, who was to representOntario's branch of the CNIB throughout the process, relates how,while chairing a committee of the Ontario branch dealing with publiceducation and advocacy, he persuaded the managing director of theprovincial board to call on the CNIB national board to authorize amember 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 toLepofsky's lobbying work, they did not have, as he puts it "a rigorousunderstanding of some of the details ... [The board] was predomi-nantly made up of sighted, retired business people who knew very littleabout blindness, very little about social services, and nothing aboutequality rights."5 Lepofsky, who had worked earlier to extend rights topeople with disabilities under the Ontario Human Rights Code, hadseen the need for action at the federal level. He had had no contactwhatsoever with COPOH before finding himself at the table with themarguing 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


and politicians in employment, transportation, and other policy areasthat deeply affected people with disabilities. Simpson argues that grassroots members of COPOH, the various provincial representatives whowere beginning to feel comfortable in the political arena, were greatlyencouraged by the mere presence of COPOH in national arenas. Ameeting with the Canadian Transport Commission in 1979 was held inthe Pearson Building "in this large boxing rink atmosphere with thejudges in the middle surrounded by people with disabilities, from allwalks of life, from story to story to story." People with disabilitiesgained experience and developed advocacy skills, making presenta-tions at the federal level, "and so, step by step, the experience of lobby-ing cross-country grew into the concept of a movement."6

When the Parliamentary Special Committee on the Handicappedwas created in 1980, Dirkson was asked to join as a consultant for afour-month period. He notes: "Most of my time was spent resourcingthe parliamentary committee that wrote the "Obstacles" report. How-ever, in the background and on my own time, I was very busy gatheringinformation on the political lie of the land in Ottawa around the Char-ter issue and feeding that through to the COPOH executive and boardand staff."8

Back in Winnipeg, Yvonne Peters, a lawyer working with theSaskatchewan Human Rights Commission, became chair of the newlycreated Human Rights Committee of COPOH and was beginning tothink about strategies for dealing with the inclusion of disability rightsin the Charter. Also active on COPOH's council were the two NovaScotia delegates to COPOH, Ron Kanary from Sydney and ShawnMcCormick from Halifax, both of whom, in different ways, were to be-come actively involved in the amendment process.

Despite its activism, COPOH was surprisingly lacking in organiza-tional structure, a lack which many of the participants interviewed forthis study found to be a positive factor. Although they did have peoplewith political experience such as Dirkson and Simpson to provideguidance, most of the actual activism was spontaneous, serendipitous,and highly creative. Peters recalls that their lobbying efforts were notgoverned by an elaborately structured organization: "I mean, thewhole idea of self-help and a disability rights movement was still suchan empowering and exhilarating experience that I don't think wehad ... the structures in place to ... deliberately sit down and analyseand deliberate on a policy or a particular strategy or action."8

Consequently, especially during the crucial second stage in January1981, those who were making arguments to the politicians in Ottawawere not being directed from Winnipeg or anywhere else, because theycould not be. COPOH was, of course, an organization of organizations,


so there was some concern about whether it had a mandate to act unilat-erally without consulting its members. Peters recalls that since only thethree advocates were on the scene participating at the hearings, theyhad to be spokespersons for the movement, with or without instruc-tions. Still, "we were on the scene, we were representative of our variousprovincial affiliates, so I think we felt like we had the mandate of the or-ganization to ... undertake this kind of action, whether or not people inRegina really understood the significance."9 For the most part, Kanary,Peters, and Dirkson, as individuals, were wholly in control of the sub-stance of the legal and social arguments that were being presented tothe Special Joint Committee.

On the question of whether COPOH had the mandate to act, Dirksonhas no hesitation in conceding that in many respects it marched intolobbying activities that many of its affiliates would never have associ-ated themselves with: "More often than not, their reluctance to appearrude, or offensive, or rock the boat - their sense of their social identity[was] peace and good order in an obvious sense." Dirkson admits thatthere were a few members of the disability community who were op-posed to including disability as a ground for equality protection, orwho thought COPOH's efforts were a waste of time. Still, he says: "Themajority of the people, once they understood what it was about ... ei-ther 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 HandicapCommittee was indicative of how COPOH financed itself during thesecrucial months. Dirkson referred to the technique as "piggybacking"(in his more blunt fashion, McCormick called it "skimming"): COPOHhad representation on various committees on transportation and em-ployment issues, supported by the responsible federal ministry, thatbrought their members to Ottawa for days, weeks, or months on end.As Dirkson put it: "We would kind of piggyback [on] their presence inOttawa ... we had a few committees and other task forces meetingthere, but between those times and after those times it was a group ofpeople in Ottawa with disabilities that we kind of organized, or helpedorganize, who gave us a presence in the committee room every day ofthe week."11

Simpson remarks that the politicization of COPOH and its affiliatedprovincial organizations had an effect on resourcing. Disability groupsthat were primarily organized by parents and those that welcomed med-ical professionals were apt to be funded by the public out of a sense ofcharity. But "people just don't usually give donations for humanrights ... so we upset a number of apple carts here."12 This situationmeant that COPOH found itself seeking governmental support, which it


readily accepted for its own political agenda. Dirkson defends the prac-tice of going directly to the federal government for advocacy funding:"The federal money that we negotiated for our member groups ... gavethem a great deal of liberty in their field of operation."13

McCormick has other views. Although he fully participated inCOPOH'S activities from 1978 right through the patriation debate in1981, and held the office of vice-chair at one point, he felt at the timethat COPOH was compromising its activism by seeking federal funding.The early years, when COPOH operated on a shoestring, were the bestyears, McCormick claims: "Beyond that, I think we started to slide intothe abyss of back-room meetings ... it just became more co-opted, al-most totally, by the bureaucracies in Ottawa. "14

T H E A C T I V I S T S R E C O L L E C T

By the time the first version of section 15(1) was tabled in Parliamentin early October 1980, the activists who would in the next monthsmount a sustained lobbying effort to add people with disabilities to thelist of protected groups were fully aware of the significance of the polit-ical objective they were seeking. Either from their legal training - as inthe case of Lepofsky and Peters - or from close observation of the pre-vious decade of consumer and civil rights movements in the UnitedStates - as in the case of Dirkson, McCormick, and Simpson - they hada clarity of vision in their lobbying efforts.

Peters relates that after the first version of section 15(1) becamepublic, COPOH held a council meeting in Ottawa: "That Sundayevening we made a decision just prior to leaving for the airport thatsome 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 toreally start pressing our issue."15 Jim Dirkson and Kanary were alreadyin Ottawa acting as consultants to the Parliamentary HandicapCommittee, and McCormick, who had appeared before that commit-tee, had agreed to stay on, taking a leave of absence from his job backin Halifax. Simpson went back to Winnipeg to provide linkage withCOPOH'S home base.

The question then arose: "What do we do?" Altogether, ten or twelvedisability activists, without funding or resources, decided to bring theissue to the public. The obvious strategy, familiar to those who hadwatched the American political scene, was to organize a demonstra-tion. So this they did. Peters recalls: "I remember we made signs anddid it all. It was a personal risk you know ... I was employed with theSaskatchewan Human Rights Commission and was told that whateverwork 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 wasnotified; and a press release was written and distributed.

McCormick recalls: "I remember very strategic meetings we had inOttawa planning how we were going to approach this issue, sitting atthe Delta Hotel for hours and hours. Finally somebody said, 'It's timeto stop talking about this goddam shit and get up and get the plac-ards. ' 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 peoplewith Seeing Eye dogs and people in wheelchairs - and that caught thepress. That's where we had to bring the thing into the public, andthat's what COPOH did."17

Emboldened by this event - which was well covered by the mediaMcCormick and others perhaps more comfortable with direct actionthan with back-room strategizing, planned other events: "I remembera whole group of us sitting at the bottom of the stairs where the PrimeMinister comes down to enter the House. We were all sort of loopedaround the bottom of the stairs and Trudeau came in with his aidesand we sort of interrupted his move and he was fairly terse about the is-sue. I remember him saying, 'You get the provinces to agree and yougot 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 arguesthat the most effective strategy used conventional lobbying techniques.Prevailing opinion changed by "meeting people near the parliamentarycommittees and the various caucuses and then their advisors too; itchanged by experience; it changed by one-on-one relationships; itchanged by having personalities such as Yvonne and Ron and MoniqueKanary and others who were able to go in and win trust and respect andwith reasonable, solid arguments."19 It was, he believes, the forcefulnessof the arguments rather than their technical accuracy, that won the dayand helped to build relationships with the bureaucrats and politicians.

The COPOH team took great care during the Hays-Joyal hearings tofine-tune their submissions. Peters relates:

You made your very brief, ten-minute, presentation. You then answered ques-tions. So that part of the process was very carefully organized. There were threeof us who appeared before the committee, and there were long discussions intothe night about how to frame the argument ... We wanted to frame it, not in atotally emotional kind of argument, but we wanted to almost reassure peoplethat including people with disabilities was not going to be a traumatic thing todo ... I think we were trying to respond to their fears of cost. That was a big fac-tor. 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 withdisabilities really do experience discrimination and inequality.


The effective arguments, which, of course, appear in public docu-ments such as Hansard where they can be studied and assessed, werealso accompanied by other, more direct strategies. McCormick notesthat the statement found in the "Obstacles" report that proved to be sopersuasive during the Hays-Joyal hearings was the result of a chanceencounter: "I was on a flight to Ottawa one morning and as it hap-pened it was the same morning that they [intergovernmental affairsministers] were going up to do their constitutional presentation. Andon the flight, we sat beside each other, and the premier [of NovaScotia] at the time - Buchanan - was on it. So it gave me a goodchance for an hour and a half of lobbying, you know."21

As an example of lobbying of a more basic sort, Dirkson tells of tac-tics such as "following people like Jean Chretien ... to the washroom,to lobby them while they were taking a washroom break ... I mean wewere accused of making some of the members dribble on their shoesat the stalls because we kept distracting them ... So it was a certainamount of 'sticking to it,' you know."22

Lepofsky, in Toronto, had different strategies, occasioned by near-complete isolation from COPOH and almost complete lack of fundingfor his costs. He had no idea that the CNIB would be asked to presentevidence at the hearing:

It's 5:00 p.m. and I'm in the kitchen at my parents' house and the phonerings, and I answer. "Hello," and some voice at the other end goes, "Is this theCNIB?" and I said, "Who are you looking for?" and they said, "Well, we're look-ing for David Lepofsky." "But I'm in my mother's kitchen." "Well, we're withthe Joint Committee of the Senate and the House of Commons ... and we wantto 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 alighter shade of pale and said, "Couldn't we maybe come next week?" I was en-tirely overwhelmed. I couldn't believe that we were invited. I had done noth-ing to prepare a presentation, but I said, "Okay, let's go for it." 23

Drawing on volunteer legal advice from disability lawyer David Bakerand relying on connections made through the Coalition on HumanRights, formed in 1980 to lobby for changes in Ontario's HumanRights Code, Lepofsky managed to fly to Ottawa and make several per-suasive and well-informed submissions to the Joint Committee.Lepofsky relates that strategic decisions about how to craft argumentswere more or less left to him personally:

Because of the internal politics of some organizations, because lobbying wasnot part of the mainstream of non-consumer groups, or service agencies


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 resolu-tion, and if it passes quickly that's great, but if it doesn't, you know, there maybe a need for a committee or a debate or whatever, and these things don't turnaround quickly." As a result, the only coalitioning I was able to do was to callthe March of Dimes that had organized the Ontario Federation of thePhysically Handicapped and get them to write a letter on their behalf thatI carried to Ottawa when I testified.24

Because COPOH was more organized and prepared, it had beenable, to a limited extent, to coordinate its efforts in Ottawa and formlinkages with various players. There was almost no successful coalitionbuilding between the disability groups and other equality seekers.Simpson had encouraged Peters to seek out women's groups to joinforces and collaborate. But Peters relates that her efforts were oftenstymied by adverse reaction from the disability community: "I don't re-ally understand this completely, but there was ... it seems, ... a real ner-vousness, I might even call it paranoia, about making links with otherequality-seeking groups, that somehow the women's groups, the femi-nists, are going to distort disability-rights analysis, or that if we get tooinvolved with other groups, that somehow our issues will get lost."25

Linkages with bureaucrats were even more difficult. Bureaucrats, itbecame clear, had been the principal source of objections to puttingdisability in section 15(1) originally, and had advised Justice MinisterChretien not to accede to the demands of the disability communityduring the first stage of hearings. Peters says that it was very difficult toget access to the right people, but when she did talk to an undersecre-tary of Chretien, he expressed reservations about what it would meanif disability was included in the constitution, claiming that it would"bankrupt the country."

Politicians, on the other hand, were almost universally sympathetic tothe disability lobbying effort. McCormick made a point of tracking downChretien on several occasions where he was speaking and asked himwhether he was going to amend section 15(1). On each occasion thesame answer came back from Chretien: "It is a high priority of ours todo it, but we have difficulty getting the provinces on board." And NDPMP Neil Young, an active member of the Haysjoyal Committee, was al-ways on side: "Neil was a very big advocate and perhaps was the one whokept feeding information and raised questions in the House."26

Lepofsky reports that during the second stage of the hearings in par-ticular he could sense that Chretien had come around: "And it wasinteresting because then the Opposition started questioning Chretien


during clause-by-clause, and he would give answers which, if you readthem, look very much like he was working from ... briefing notes thatwere given by the bureaucrats. But he didn't really believe it, becausehe kept saying, 'You know, I'd really like to do this.' I mean it turns outof 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, thatthe Justice Ministry had come around to the view that it should nolonger oppose the amendment of section 15(1) well before 28 January1981, when it formally made that announcement. In any event, on thatdate, the loose coalition of disability groups, relying primarily on the cre-ative talents of a handful of spokespersons at the hearings of the SpecialJoint Committee, on creative financing, and on a sympathetic eye fromkey politicians, could declare a victory for this lobbying campaign.

R E C O G N I T I O N A N D I N C L U S I O N

The objective outcome of this case is obvious: the inclusion of peoplewith mental and physical disabilities on the list of populations explic-itly recognized as protected groups under the constitutional guaranteeof equality rights. Canada became the only jurisdiction on earth withsuch a constitutional guarantee. From an interest group perspectivealone, the outcome of the lobbying efforts of COPOH, CAMR, the CNIBand the key players of other organizations can only be described asspectacular.

How did those who participated in the process perceive it? Here theresponse is more complicated. On the one hand, all agree that this wasa symbolic victory of great, and indeed unique, importance. Petersputs it this way: " [The victory was] symbolic in a psychological kind ofa way, and in a recognition way. But I think if I look at it first of all fromthe point of view of the movement, the disability movement in Canada,I think the idea that we were able to secure recognition under [sec-tion] 15 gave us a real feeling that we could do things, and was veryempowering."28

Those immersed in and convinced of the American style of disabilityactivism, in which judicial decisions and legislative provisions guaran-teeing equality are of key importance - in particular Dirkson,Lepofsky, and, though perhaps with less vigour, Peters as well - insistthat the victory was more than symbolic since it opened the door toequality litigation that would have ongoing positive results for the dis-ability community. As Lepofsky puts it: "I'd say we've straddled fromsymbolism to substance, but symbolism becomes substance. I mean,what people with disabilities need is a world in which the requirement


of equality becomes an accepted axiom. We're not there, but we're ahell of a lot further ahead with it in section 15 even on symbolicgrounds alone."29

Finally, Simpson expresses the strongest, most positive view of theoutcome when he says: "It was a very strong symbol that had tremen-dous repercussions for us. It not only set a precedent, but it would en-sure an equal approach to planning and to public perception, topolitical perception." Simpson believes in particular that COPOH'S in-tervention in federal politics created an optimism in the disability com-munity that can still be felt:

There was a growing confidence and awareness as the day arrived that it [theamendment] would probably be accepted and approved by the committee andwould go on, and when it did arrive, by then we were all on to new battles; butit was a real relief, a great sense of achievement that the country could cometogether and that the disability community had a chance to practise its demo-cratic role, to have a tangible result that it could point to in history, that to-gether the country made it happen, and that it won the respect of thepoliticians and decision makers in a constructive way, and that it would be agood 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 ques-tions whether they really represent a genuine victory. The dissentingvoice is that of McCormick, and the substance of his comment is im-portant: COPOH had its finest hour when, without organizational struc-ture or even funding, it managed to stir the souls of people withdisabilities and get them into the streets to protest. When it was over,McCormick argues, two negative results followed. First, "Everybodyand their dog, disabled or non-disabled, came to the conclusion thateverything that we ever needed to take care of for the disabled washappening. Let's all go home, you know. I think it was the worst thingthat ever happened to the disabled." Second, he feels that COPOHchanged. In part it was co-opted by the federal funding it now neededto survive. However much they deny it, McCormick claims, COPOHmust be compromised in its activism now that it is so closely tied to thefederal bureaucracy. COPOH has stagnated and has lost "the fire in thebelly." McCormick suggests that the senior staff in all disability organi-zations 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 depen-dency before, but argues that the funding question poses a practical


dilemma that cannot easily be solved. Resources provide recognitionand 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 astake in the way the organization has evolved. "I think it's very hard tolet 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 hardfor people to back off and let go." In her view, resources and a mea-sure of policy success brought a degree of institutionalization toCOPOH that helped to meet the real needs of a social group trying toincrease its legitimacy.32

5 The Charlotte town Accord:Post-Patriation

Although the Constitution was patriated in 1982, the province ofQuebec refused to formally accept the document. This refusal led theway to repeated crises in Quebec between the separatist Parti Quebecoisand the federalist-leaning Liberal Party. Eventually, the Mulroney gov-ernment, which had a large Conservative membership from Quebec, re-opened negotiations to seek Quebec's approval of the ConstitutionalAct of 1982. This process, in which participation was essentially re-stricted to provincial governments, resulted in the Meech Lake Accord.When this new agreement failed to be ratified by the provinces, a moreopen process was initiated, which culminated in a national referendumto ratify the Charlottetown Accord. The efforts of Canadian disabilityrights organizations to lobby for changes in provisions for equality rightsin the Charlottetown Accord are the subject of this chapter. *

The 19805 were seen by many members of disability rights groupsas a period of growth and increased interest in the development ofpolicies to improve the participation of Canadians with disabilities inall aspects of Canadian life. This goal included increasing the involve-ment of people with disabilities in federal and provincial HumanRights Commissions and the development of a number of federal andprovincial committees concerned with disability policy. Many drewconsiderable pride from the fact that Canada was the first country inthe world to have enshrined the rights of persons with disabilities inits Constitution. The Charlottetown case provides a unique opportu-nity to examine the participation of Canadian disability organizationsin the development of Canadian legislation at a point ten years afterthe passage of the Canadian Charter of Rights and Freedoms.

67 The Charlottetown Accord

THE L E S S O N S OF M E E C H L A K E

What factors led the federal government to initiate the process of con-stitutional reform in the wake of the failure of Meech Lake? Generallyspeaking, we can identify four kinds of problems that intensified afterthat round of constitutional negotiation. First, the failure to bringQuebec into the constitutional framework of Canada had served to in-crease popular nationalist sentiment across that province.2 Moreover,Quebec was poised to respond to the eventuality that Meech Lakemight be unsuccessful, by striking a special parliamentary commissionon the Constitution to study the political future of Quebec withinCanada. On 22 August 1990, the Belanger-Campeau commission wasannounced by both Quebec Premier Bourassa and by Parti Quebecoisleader Jacques Parizeau.

Second, the Oka crisis that began on 11 July 1990 once again forcedthe federal government to confront the issue of Aboriginal self-government and unresolved territorial jurisdiction. Scenes of anarmed stand-off - first between Mohawks and the Quebec police, andthen between Mohawks and the national army - over the building of agolf course on disputed territory brought home the volatile nature offederal-Aboriginal relations. The popular support this action gainedthroughout the First Nations community in Canada, and the forcedresolution of the stand-off, increased fears that peaceful settlementsmight be in jeopardy if Aboriginal demands for constitutional recogni-tion were delayed any longer.

Third, the regional concerns of the premiers of western and AtlanticCanada had never been fully accommodated by the proposed MeechLake Accord. These concerns made an appearance again during thisround of constitutional debate in the form of calls for a reformedSenate. The primary issue here was the overly centralized decision-making authority held by Ontario and Quebec. Both Western and At-lantic Canada demanded a more effective role in national policy mak-ing; Quebec sovereignty and Aboriginal self-government were not theonly constitutional issues yet to be resolved.

Finally, there was a kind of Canadian nationalism forming on boththe political right and the political left that advanced specific socialand economic policy options for a renewed federation. Those on theright wanted a more efficient and stronger central government in or-der to compete in the global market; and those on the left wanted astrong central government in the hopes of shoring up national socialprograms 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 intoaction on renewing constitutional negotiations.3


The inclusion of people with mental and physical disabilities in thelist of populations explicitly recognized within section 15 of theCanadian Charter of Rights and Freedoms in 1982 had been hailed asa victory by many Canadian disability organizations.4 It was viewed asthe first major successful effort of the national cross-disability organiza-tion, the Coalition of Provincial Organizations of the Handicapped(COPOH).

During the consultation process for constitutional reform in the late19808, disability rights groups such as COPOH and the Ontario March ofDimes submitted briefs outlining their perspectives on the needs ofCanadians with disabilities. COPOH'S Brief to the Special Joint Commit-tee on the 1987 Constitutional Accord expressed its members' graveconcerns about the changes in spending power of federal-provincialcost-shared programs, the equality rights provision of the Charter, andthe lack of consultation with groups representing Canadians with dis-abilities (COPOH 1987).

Disability advocacy groups continued to show their particular inter-est in federal-provincial social welfare jurisdictional issues, fearing thatpeople with disabilities might fall between the cracks. COPOH arguedthat proposed changes in federal-provincial spending power wouldhave a profound effect on lives of Canadians with disabilities. Existingcost-shared programs such as the Canada Assistance Plan (CAP) andthe Vocational Rehabilitation of Disabled Persons program (VRDP)provided limited national standards to facilitate the integration of per-sons with disabilities into the community. With respect to equalityrights, the brief pointed out that the struggle to include persons withmental and physical disabilities in section 15 of the Charter had beenled by Canadians with disabilities. COPOH argued that because of the"long and difficult battle ... we must be constantly vigilant of theEquality rights guaranteed to disabled persons under the Charter"(COPOH 1987, 8).

The brief maintained that the new proposed text for section 15seemed to imply a two-tiered system of rights by including Aboriginaland multicultural rights but excluding persons with mental and physi-cal disabilities from consideration. COPOH sought a specific reaffirma-tion of the commitment to equality by the inclusion of the followingstatement: "Nothing in the Constitution of Canada abrogates or dero-gates from the rights and freedoms in the Canadian Charter of Rightsand Freedoms" (COPOH 1987, 8-9).

During ongoing negotiations in 1988 and 1989, other disabilitygroups supported COPOH'S position (Ontario March of Dimes 1988;Pearce 1988). The Ontario March of Dimes, in their 1988 Brief to theLegislative Committee on Constitutional Reform, argued that the

6g The Charlottetown Accord

Meech Lake Accord would jeopardize some of the hard-won rights thatpersons with disabilities enjoyed under the Charter of Rights andFreedoms and "the ability of the Accord to provide consistent socialprograms coast to coast."5

In 1990 COPOH and the newly formed Canadian Disability RightsCouncil (CDRC) submitted a joint Brief to the Select Committee onthe Proposed Companion Resolution (the McKenna Proposal) on theMeech Lake Accord. They argued that Canadians with disabilities wereuniquely "aware that equal treatment does not mean equality of resultsand thus understand the need to recognize the distinct nature of theProvince of Quebec" (COPOH and CDRC 1990). They suggested thatthe proposal by New Brunswick Premier Frank McKenna to ensurethat the rights of women were specifically protected was similar toCOPOH's original 1987 position that the rights of "all those who areprotected by Section 15 of the Charter" are in jeopardy. In addition,the Brief outlined continued concerns about the provision allowingprovinces to "opt out" of national programs. COPOH and CDRC arguedthat this option would erode national standards and have a profoundeffect on Canadians with disabilities who had access to few services out-side of CAP and VRDP. The report concluded: "In summary while wesupport the distinct society clause and welcome Quebec into the con-stitution, however, neither the Accord nor Premier McKenna'sCompanion Agreement address the issues of national standards orequality. These two fundamentals concerns have been clearly identi-fied for more than two years yet there has been no effort by any gov-ernment to address them. We cannot support the Accord nor theCompanion Agreement without these fundamental concerns being ad-dressed in a significant manner" (COPOH and CDRC 1990, 2).

In a letter to COPOH, on 9 May 1990, Prime Minister Mulroney indi-cated that he believed that "nothing in the Accord takes away, over-rides or supersedes Charter rights" and declined to make changes inthe Accord (Mulroney 1990).b On 8 June 1990, COPOH, in conjunc-tion with the Canadian Disability Rights Council and the DisAbledWomen's Network (DAWN Canada and DAWN Toronto), issued a pressrelease stating their opposition to the Meech Lake Accord on constitu-tional change.

Disabled people of Canada, women and men, worked hard in 1980 and 1981to be included in the Canadian Charter of Rights and Freedoms. We are proudthat Canada is the only country in the world that includes both physically anddevelopmentally [sic] disabled people in its Charter ... Therefore, we - the dis-abled people of Canada - cannot accept any constitutional change whichwould override the Charter of Rights and Freedoms, our only protection


before and under the law ... We welcome Quebec's continued commitment toConfederation, and have always done so. However, we are mindful that thereare disabled people in every part of Canada, and we believe that all disabledpeople should be entitled to the same basic equality guarantees ... None of thefirst Ministers has given any sign of being aware of the interests of disabledpeople of Canada in the current round of constitutional talks. However, we re-mind you that we are here, in our thousands, expecting that the Charter ofRights and Freedoms will not be compromised by anything you do. 7

By the end of June 1990, the Meech Lake Accord had failed to gainapproval from all Canadian provinces, and discussions ended (Kallen1998). While disability rights groups had argued for changes, most po-litical analysts did not consider their concerns to be among the primeforces that led to the Meech Lake failure. They were, however, recog-nized as part of an increasing number of Canadians who felt a "senseof outrage at the illegitimacy of governments perceived as playing fastand loose with a Constitution which they had forgotten was no longertheirs alone" (Cairns 1988, 256).

The failure of Meech Lake and public perception of the lack of in-clusion laid a new groundwork for future constitutional discussionsthat required new methods of public consultation. Brock (1991, 59)has argued that: "the Meech Lake experience revealed that constitu-tional reform must be more open and more inclusive. Throughout thehearings, the Meech Lake process was criticized as being hasty, undem-ocratic, elitist, unrepresentative, secretive, and a violation of Canadianpolitical norms. "8

As Cairns points out, the demise of the Meech Lake Accord waslargely the result of a conflicting agenda between citizens and federalgovernment institutions:

While federalism may still be largely about governments, federalism itself haslost relative status in the Constitution as an organizing principle. TheConstitution is now also about women, aboriginals, multicultural groups,equality, affirmative action, the disabled [italics added], a variety of rights, andso on. Since it is not possible to separate clearly the concerns of the govern-ments which dominate federalism from the concerns of these newly constitu-tionalized social categories, it logically follows that the Constitution with itsmany non-federal concerns can no longer be entrusted exclusively to govern-ments in the process of constitutional change (Cairns 1998, 261).

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


and to restore a sense of legitimacy to the enterprise of constitutionalreform, the Conservative government consulted with a wide range ofcitizen groups, advocacy organizations, and Aboriginal peoples.

T H E S T R U G G L E F O R I N C L U S I O N

I N T H E C A N A D A C L A U S E

During the second half of 1990, several events occurred that re-ignitedthe process of federal-provincial discussions on constitutional reform.These included the formation of the Bloc Quebecois, the establish-ment of the Belanger-Campeau Commission in Quebec on 2 5 July1990, the formation of the Alberta Premier's Commission on the Con-stitution in September 1990, the establishment of a Citizens' Forumon Canada's Future chaired by Keith Spicer, and finally the creation ofthe Beaudoin-Edwards Committee to explore a constitutional amend-ing formula.

Ronald Watts (1992), a noted expert on Canadian politics, has sug-gested that the process of constitutional revision between 1990 and1992 can be considered in three phases: the process of public discus-sion, the stage of intergovernmental negotiations, and the referendumcampaign. The first stage, the process of public discussion, was used toidentify the nature and extent of public support for constitutional revi-sion. This stage lasted from the formation of the Spicer Commission inNovember 1990 until the release of the Beaudoin-Dobbie Report ofthe Special Parliamentary Joint Committee in March 1992. During thisperiod none of the commissions, committees, or councils were specifi-cally mandated to consider the needs or concerns of Canadians withdisabilities. However, as the public discussion phase progressed, begin-ning in March 1991 and continuing until February 1992, provincialand national disability organizations submitted briefs to a number ofprovincial and federal committees. These briefs generally called fornew safeguards and policies to support and enhance the inclusion ofCanadians with disabilities in all aspects of Canadian society.

Intergovernmental negotiations, the second phase, began after therelease of the Beaudoin-Dobbie Report of the Special Joint Committeeon a Renewed Canada, in March 1992. This phase lasted until the an-nouncement of the Charlottetown Accord on 28 August 1992. TheBeaudoin-Dobbie Report contained the first example of a CanadaClause, or a specific acknowledgment that nothing in the proposed ac-cord would contravene existing rights outlined for specific groups insection 15 of the Charter of Rights and Freedoms. However, the pro-posed Canada Clause lacked specific mention of persons with mentaland physical disabilities. Initially, COPOH and other disability rights


organizations did not react to this omission. It was not until the an-nouncement and publication of the full text of the CharlottetownAccord that Canadian disability organizations recognized the implica-tion of their omission from the Canada Clause.

The final phase of the Charlottetown process, the referendum cam-paign, occurred between i September and 26 October 1992 and cul-minated in defeat of the Accord. It was during this phase that disabilitygroups across Canada began, first, to negotiate for amendments to in-clude people with disabilities in the Canada Clause and then, failing togain inclusion, argued for a NO vote in the referendum. The followingchronology describes the involvement of Canadian disability organiza-tions in the three phases of the Charlottetown process.

Public Discussion: November iqyo -March 1992

In November 1990, the federal government announced the formationof a Citizens' Forum on Canada's Future, to be chaired by KeithSpicer. In addition, in December 1990, the federal government cre-ated a Special Joint Committee of the Senate and House of Commonsto hear testimony on a constitutional amending formula.

Subsequently, various provincial governments also established com-mittees to examine constitutional reform. Ontario's Select Committeeon Ontario in Confederation appears to be the first committee to ad-dress the concerns of Canadians with disabilities. Its March 1991 In-terim Report contained a section entitled "Disabled Individuals." GaryMalkowski, an elected member of the ruling NDP government and amember of the deaf community, was a member of the Ontario SelectCommittee. He was probably the only elected member of a provincialconstitutional committee who had a disability.

The Ontario Interim Report noted that although the committeehad heard primarily from members and representatives of the deafcommunity, it would "comment both on the unique concerns of thisgroup and on the nature of some problems shared with other disabledindividuals."9 The Report recommended policies that considered theneeds and desires of people with disabilities, addressed the significantbarriers that prevented people with disabilities from participating insociety, and empowered people with disabilities to make key decisionsthat affect their lives. It also addressed the issue of inclusion: "Peoplewith disabilities have felt excluded from and want a voice in the pro-cess of constitutional reform. Of particular concern ... was the possibil-ity that a restructuring of our constitutional structure could weakenthe quality and national nature of our social programs when these infact should be strengthened" (Select Committee 1991, 22) .


The committee specifically commented on section 15 of the Charterand suggested that constitutional reform be sensitive in two areas: thatnational programs not be weakened; and that Section 15 be clarifiedto ensure it only benefited members of disadvantaged groups. Finally,the Committee undertook that its next phase of discussions would con-sider how the rights of people with disabilities could be addressedmore effectively in the Constitution.

The second province to formally consider the needs of Canadianswith disabilities was Alberta. In October 1991 the Premier's Councilon the Status of Persons with Disabilities and the Alberta Committee ofCitizens with Disabilities prepared a discussion paper for the Premier'sCouncil on Constitution Reform. Entitled "Constitutional Reform:Implications for Canadians with Disabilities," the report called foramendments to sections 15, 27, and 28 of the Canadian Charter ofRights and Freedoms and the development of a "Social Charter." Thesuggested 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 15where "white male job applicants might claim discrimination if jobsare awarded to women, Aboriginals or other Employment Equity tar-get group members" (Alberta Premier's Council 1991, 21—22).

The Alberta report noted that sections 27 and 28 of the Charterwere designed to help identify equality goals for ethnic minorities andwomen. It called for the addition of new sub-sections to support "theamelioration of the conditions of persons with disabilities to beachieved by their inclusion in the social, political and economic main-stream through the removal of barriers." It suggested in addition thata "barrier review" be conducted every four years by both federal andprovincial levels of government for ongoing development of legisla-tion to support inclusion of people with disabilities.

The Alberta report amendments also prioritized the equalization oftransfer funds received from wealthier provinces and called for the"development of a constituent assembly that would include representa-tives from minority groups from each province." Finally, it called forthe Canadian Constitution to support the social goals of the Interna-tional Bill of Rights through the inclusion of "guarantees of those so-cial rights which will ameliorate the underlying social conditions thathinder health, dignity and productivity" (Alberta Premier's Council1991, 22-23).10

On 13 May 1991, in the Speech from the Throne openingParliament, the federal government announced another stage of con-stitutional reform under the leadership of Joe Clark, Minister Respon-sible for Constitutional Affairs. A background paper Shared Values: The


Canadian Identity was published in August 1991. It argued thatCanadians wanted a mutually supportive society where "particulargroups that may have been overlooked, such as the disabled or chil-dren, [could] henceforth, get the help they need." It went on to definethe purpose of equality rights: "to remedy or prevent discriminationagainst groups suffering social, political or legal disadvantage ...Women, the physically challenged, our senior citizens, aboriginal peo-ples, visible minorities, official-language minority groups and othersface daily challenges not always understood by the rest of society"(Government of Canada 1991 a).

The federal government's constitutional proposals were released on24 September 1991 in a booklet entitled Shaping Canada's FutureTogether. The proposals contained the first reference to a "CanadaClause" that was to be a fundamental statement about Canadian iden-tity. The clause included specific mention of persons with disabilitiesby recognizing "a commitment to fairness, openness and full participa-tion in Canada's citizenship by all people without regard to race, co-lour, creed, physical and mental disability [italics added], or culturalbackground" (Government of Canada 1991, 9, 12, 52).

Public hearings on the federal proposals were held by the SpecialJoint Committee of the Senate and House of Commons, first calledthe Beaudoin-Edwards Committee, later the Castonguay-DobbieCommittee, and still later the Beaudoin-Dobbie Committee. Thehearing process was initially reported to be confused and disorga-nized. During the hearings process, however, the committee receivedsome 3,000 submissions and listened to testimony from 700 individu-als. A review of the Beaudoin-Dobbie final report showed that only avery small number of submissions or invited presentations were re-ceived or made by individuals with disabilities or organizations repre-senting people with disabilities.

Donald Halechko and David Martin, from the Manitoba League forthe Physically Handicapped, presented a brief at the request of theCommittee on 4 November 1991. Building on their previous presenta-tions in the Meech Lake discussions, they made four main recommen-dations. First, they recommended that constitutional discussionssupport "the integrity of the equality rights protections in the Charterfor citizens with mental and physical disabilities." Second, they soughtthe removal of the "notwithstanding" clause, which allowed provincesto opt out from specific sections of the Charter. They supported astrong federal government role in facilitating national standards in so-cial policy areas through such mechanisms as shared-cost programs andtransfer payments to less wealthy provinces. Finally, they called for support to meet the constitutional concerns of Aboriginal Canadians.'l


In November 1991, in response to criticism of mismanagement inthe Castonguay-Dobbie Committee, Joe Clark announced the additionof a series of six televized regional conferences to discuss federal con-stitutional proposals. These conferences focused on issues of distinctsociety status facing Aboriginal groups and Quebec. Issues related todisability did not appear to play a significant role. Indeed, individualswith 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 toonarrow, [the] wheelchair wouldn't go through it. In British Columbia they hadit in a second floor location with no elevator and they had to carry somebodyup 14 stairs to get her in ... We complained about it, but by the time we com-plained they were just about finished the round. We got to as many as we couldbut at that stage we were not organized enough to make a loud enough cryabout it ... They didn't want us there, they seriously didn't. Some of thosemeetings were deliberately held where you couldn't get into them. 12

Provincial processes were affected by these federal hearings. TheFinal Report of the legislative committee for Ontario was released atthe end of February 1992. Its first recommendation supported the in-clusion of people with mental and physical disabilities within theCanada Clause. It also called for a review of the Charter of Rights andFreedoms to identify ways to improve the Charter. Specifically, meth-ods were needed to make the appeals process more accessible for en-forcement of the Charter; there was a need for equality rightsguarantees which recognized that the integration of persons with dis-abilities could best be achieved by their inclusion in the social, politi-cal, and economic mainstream through the removal of barriers (SelectCommittee 1991, 84).

Eric Boyd, Executive Director of the Alberta Premier's Council onthe Status of Persons with Disabilities, presented the Alberta briefConstitutional Reform: Implications for Canadians with Disabilities on22 January 1992. The brief also called for a strong federal governmentcapable of providing effective leadership and of maintaining nationalhealth standards and social programs with equitable access for personswith disabilities across the country. In addition, Boyd outlined othermajor concerns for Canadians with disabilities, which included protec-tion and enhancement of the Charter; a guarantee of barrier-free ac-cess to public goods and services; and changes in areas such asimmigration and vocational training (Select Committee 1992, 46-50).

The outcome of all these processes was that on i March 1992 theFinal Report of the Special Joint Committee of the Senate and Houseof Commons was released. In this report, however, the Canada Clause


omitted reference to people with mental and physical disabilities. Thiswas significant because the report formed the basis for the federal gov-ernment's intergovernmental process of negotiations with the prov-inces that was announced by Constitutional Affairs Minister Joe Clarkon 12 March 1992.

Thus, despite the presentations made by disability rights groups ad-vocating measures to safeguard and enhance rights and policies forpersons with disabilities, the final federal report omitted all the refer-ences to persons with disabilities, or their concerns, that had been ad-dressed during the federal and provincial public hearings.

During the process of intergovernmental negotiations, the prov-inces dominated the discussions, and the central issues were distinctsociety status for Quebec, Senate reform, division of federal-provincialpowers, Aboriginal self-government, and the development of a socialcharter (Brown 1992, 195-8). During the period between March andi June 1992, little was heard from disability advocacy organizations. Asthe interpretive nature of the Canada Clause was clarified in the gov-ernmental negotiations, however, various advocacy groups began tocomplain about their omission. The Canadian Ethno-cultural Councilmade the first complaint on 9 June 1992. The first objections by dis-ability rights organizations began in July 1992 (Brown 1992, 11).

By the middle of August 1992, Quebec had joined the negotiationswith other First Ministers and the federal government, and issues ofSenate reform and Aboriginal self-government were addressed. Thenegotiations ended with the signing of the Charlottetown Accord on28 August 1992. The Canada Clause contained specific references towomen, racial and ethnic equality, language minorities, andAboriginal peoples. However, as was the case with the Canada Clausethat had been recommended in the March 1992 Special Report, itdid not contain any special reference to persons with mental andphysical disabilities.

Beginning in September 1992, the federal and provincial govern-ments launched a campaign to gain a YES vote in a national referen-dum on the Charlottetown Accord to be held in October 1992.Canadian disability rights organizations began a process of lobbyingat both the federal and provincial level to amend the Accord to in-clude persons with disabilities. The national office of COPOH and itsprovincial affiliates exerted an active influence during the referen-dum campaign.

The announcement of a referendum in Charlottetown in Augusthad not included the final legal text of the Accord which was to be pre-pared in the following month. This text was not released until9 October 1992, approximately two weeks before the referendum.


However, the official legal text for the Canada Clause in the Accordhad not been revised and contained no reference to persons with men-tal or physical disabilities other than the reference in section 2 (f) that"Canadians are committed to a respect for individual and collectivehuman rights and freedoms of all people."

Following a short intense period of consultations with federal andprovincial officials, COPOH and many of its provincial members recom-mended that Canadians vote NO in the referendum. In this recom-mendation, they joined with other equality-seeking groups. Majorconcerns had arisen among Canadians across the country about theAccord's provisions for a "distinct society clause" and its recommenda-tions for Senate reform. The referendum on the CharlottetownAccord was held on 26 October 1992 and was defeated by a NO vote of54 per cent nationally. It also failed to gain approval in six of out of tenprovinces and in both territories.

C O P O H M O B I L I Z E S T H E N O V O T E

The major organizational players in the lobbying efforts for theCharlottetown Accord were COPOH and its provincial affiliates. Afterthe initial work of COPOH in the passage of section 15 of the Charter ofRights and Freedoms in 1980-81, the organization continued to de-velop as a national voice for organizations of individuals with disabilitiesin Canada. Between 1987 and 1990, COPOH prepared briefs for hear-ings such as the Special Joint Committee on the 1987 ConstitutionalAccord. Between 1990 and February 1992, COPOH also developed abrief on constitutional reform in conjunction with its provincial mem-ber organizations. The central focus of COPOH's activities during the19808, however, was lobbying the Canadian federal government tochampion constitutional proposals to further safeguard and enhancethe rights of persons with disabilities (COPOH 1991).

By the 19905, when the formal constitutional talks began again,COPOH was "a membership organization representing advocacygroups from each province that adhered to the principle of indepen-dence and dignity for disabled persons, full participation in thecommunity, working towards equal opportunities." Its member organi-zations were 51 per cent consumer-controlled, with a philosophy ofindependent living, peer counselling, information sharing, and edu-cating members in the community on disability principles.13

Through its provincial organizations COPOH by this time repre-sented at least 30,000 people. It received funding from the federal andprovincial governments and a small amount of money from donations.Its annual budget for 1991-92 was approximately $800,000. COPOH


acted as a liaison with other national disability organizations such asthe Canadian Association for Community Living, the Canadian Inde-pendent Living Association, the CNIB, and the Canadian ParaplegicAssociation. Those organizations were not directly connected withCOPOH, however, because each wanted to keep its individual nationalstanding, and some did not meet COPOH's criteria for consumer con-trol of their board of directors.

During the early stages of the Charlottetown Accord negotiations,proposals related to persons with disabilities were presented to variousprovincial constitutional committees, including the Ontario andAlberta Provincial Committees. These proposals called for the supportand enhancement of equality rights, the maintenance of federal-provincial spending powers, and the removal of barriers to participa-tion for people with disabilities.

The federal government's first constitutional proposal, released inSeptember 1991, had included a Canada Clause that contained spe-cific mention of physical and mental disability. This issue was not new,although it had previously been contentious during the Meech Lakeround of constitution talks.

The publication of the final report of the Special Joint Committee,released on i March 1992, contained a Canada Clause that omittedany reference to people with mental and physical disabilities. Initially,COPOH did not respond to this omission and indeed, as mentioned, fo-cused more on maintenance of national standards. In one of its pressreleases on 16 July 1992 entitled "National Standards: Slip-slidingAway," COPOH argued that constitutional changes would fundamen-tally alter the way Canadians would access employment and trainingprograms and called for consultation with persons with disabilities inthe development of national standards for employment and training.

On 28 July 1992, another COPOH press release, entitled "No News isBad News," again focused on the lack of response from the federal andprovincial governments to the need to develop national standards, toconsult with Canadians with disabilities before moving Employmentand Immigration to the provinces, or to ensure that barrier-free ser-vice delivery systems would be constructed (COPOH 1992). The newsrelease also reported the beginning of a national letter-writing cam-paign to focus attention on this issue.

By 26 August 1992, COPOH stated its position again: "DisabledCanadians have worked to develop an understanding of equity and ac-cessibility. If employment services are to be delivered in 10 separate ju-risdictions, disabled people will be the losers" (COPOH i992b).

The first reaction to the impact of omission of persons with mentaland physical disabilities from the Charlottetown Accord came in late


August 1992. Shelagh Day of the National Action Committee on theStatus of Women (NAG) contacted Yvonne Peters of the CanadianDisability Rights Council. Peters was also a former chair of COPOH'SHuman Rights Committee. Day had been participating in constitu-tional 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 themto the possibility that the proposed Canada Clause might have an im-pact on section 15 of the Charter. Peters recalled that it "hit to thecore of people's very being ... Rights are still so fragile, so new, thatanything that might tamper with it ... It got people motivated and ac-tive."15 Francine Arsenault, the 1992 Chair of COPOH, recalled a simi-lar reaction from members: "We have to be in there! If we are not inthere, things are going to be put on the back burner again."l6 Workingwith provincial member organizations, COPOH 's leader organized a se-ries of meetings with provincial premiers and officials.

COPOH also worked with the media, although it was "very difficult toget the issue across to the press because there were legalistic kinds of ar-guments that had to show how it might be a worry, and if you didn't un-derstand those arguments then it just seemed like a lot of whining."l7 Inan article in the Globe and Mail on 4 September 1992, Laurie Beachall,national coordinator of COPOH, stated that the new Constitution wouldcreate a "hierarchy of rights in which the handicapped would havefewer rights than women and racial minorities" (York 1992). The articlealso quoted Peters's concerns that the rights of persons with physicaland mental disabilities, specifically mentioned in earlier federal consti-tutional proposals, had been omitted. "[We] cannot understand whythe clause was dropped from the final version. It makes us very nervous.We have to ask our politicians why? What made them change theirmind? We became very suspicious" (York 1992).

In a subsequent press release on 8 September 1992 entitled"Disabled Canadians Dropped from Canada Clause," Peters again laidout COPOH'S position to ask the government "to reinstate a provisionto ensure the equality of Canadians with disabilities" (COPOH i992c).The press release also linked the recently announced cancellation ofthe Court Challenges Program, which provided legal support toCharter groups challenging discrimination, with the omission of dis-ability from the Canada Clause (Canadian Press 1992).

Throughout September, COPOH and its provincial member organi-zations sought negotiations to amend the Canada Clause. A number ofmeetings with federal and provincial government leaders were quicklyarranged. On 15 September 1992, COPOH met with Joe Clark, the

8o A Seat at the Table

Minister Responsible for Constitutional Affairs. At that meeting, Clarkargued: "It is my firm belief that there are no legal grounds uponwhich to conclude that the Canada Clause agreed to in Charlottetownundermines the protections which are clearly in place and intact in theCanadian Charter of Rights and Freedoms and other human rightslegislation" (Clark 1992). Clark suggested that he would write to pro-vincial premiers and territorial leaders asking that they examine the is-sue "with a view to arriving at an early, practical way in which theconcerns of disabled persons could be met" (Clark 1992).

During the referendum stage of negotiations, Beachall reported, theexecutive of COPOH "went directly to Mr. Clark and ... talked to himvery frankly. We said, 'We want to know why this has happened?' Wewent to other premiers as well. We were seeking a process to try and in-clude within the Canada Clause protection of disabled Canadians'rights ... We did look towards a collaborative process to try to find a so-lution ... rather than an outright call for defeat of the CharlottetownAccord."18

COPOH's members had been involved in the process of negotiationsfor equality rights since the late 19705. Beachall remarked that theycould relate to exclusion and understood it intrinsically. "It hit sort ofa gut level ... for our organization, because we were involved in 1981in the repatriation amendment in the Charter discussion ... A lot ofthe leadership has been around for that ten-year period of time. It waslike, 'Here we go again. We got to fight this one over again.' "19

Carol McGregor, Executive Director of PUSH Ontario, along withFrancine Arsenault of COPOH and other colleagues, met with Bob Rae,then premier of Ontario, on 22 September 1992. Again, while Rae wassympathetic and suggested he would write to the other premiers, noamendments were forthcoming to the Canada Clause.

Across Canada other provincial members of COPOH were also lobby-ing. The Consumer Organization of Disabled People of Newfoundlandand Labrador issued a press release on 18 September 1992 warning ofa hierarchy of rights that "may reduce the ability of persons with disabil-ities to challenge discriminatory actions" (Consumer Organizations1992). They noted that they had arranged a meeting with PremierClyde Wells to discuss the issue.

Don Halechko and other members of the Manitoba League for thePhysically Handicapped, met with the Manitoba Minister of Justice on21 September 1992, to urge him to use his influence "to correct this sit-uation by amending the Canada Clause before the October 26th refer-endum to include reference to disabled Canadians" (Halechko 1992).

In September COPOH sought legal options and opinions from theAdvocacy Resource Centre for the Handicapped (ARCH), and the


Canadian Disability Rights Council (CDRC), and consulted constitu-tional lawyers across Canada on the impact of the Canada Clause.David Baker of ARCH wrote that the inclusion of a sub-clause with aspecific reference to people with disabilities could be added to theCanada Clause. In his analysis of the Canada Clause, Baker argued thatthere was a "real possibility that people with disabilities will be ac-corded a lower level of equality protection than they currently possessand which those groups enumerated in the Canada Clause will con-tinue to enjoy. The proposed clause may create a hierarchy amongstdisadvantaged groups protected by the equality clause where no hier-archy currently exists" (Baker 1992, 1-2). Baker recommended inclu-sion of a sub-clause as the most easily implemented alternative.

In their brief to COPOH on 16 September 1992, the CDRC stated: "Itis CDRC'S opinion that it cannot be said with certainty that the exclu-sion of people with disabilities from the Canada Clause will not down-grade the equality rights of people with disabilities in Section 15 of theCharter" (CDRC 1992).

By mid-September two groups, DAWN Canada and the BritishColumbia Coalition of People with Disabilities were arguing for a NOvote. DAWN reported on 20 September 1992 that, following a unani-mous vote, it was joining with the NAG and the Native Women'sAssociation of Canada to say NO to the Charlottetown Accord. TheBritish Columbia Coalition of People with Disabilities also released apress statement on 22 September 1992 calling for people with disabil-ities to vote against the Charlottetown Accord. Margo Massie,Coalition President, declared: "There is tremendous pressure outthere from the 'YES'juggernaut. But we won't be intimidated into si-lence ... 1992 is the end of the Decade of Disabled Persons and itseems we are no longer fashionable ... The Canada Clause ... may besilent on people with disabilities, but people with disabilities won't besilent on the Canada Clause" (B.C. Coalition 1992).

Another special interest group spoke out in defence of persons withdisability. One Voice: The Canadian Seniors Network protested:"Canadians don't want to hold their noses to vote YES for nationalunity." Among their recommendations for changes was a call to modifythe Canada Clause to include the rights of persons with disabilities andensure that the Clause did not weaken the Charter of Rights andFreedoms (Aitkens 1992). However, letters to Joe Clark prepared byvarious provincial premiers maintained: "The rights of the disabledare in no way negatively affected by the present formulation [of theCanada Clause] ."20

On 9 October 1992 the final legal text of the Charlottetown Accordwas released. The rights of persons with disabilities were not included


in the Canada Clause. Following its release, provincial premiers wroteto COPOH and other provincial disability groups arguing that therehad never been "any intention ... to negatively affect the rights of thedisabled in any way." They promised that they would be open to re-viewing modifications to the Accord after a "positive outcome from theOctober 26th referendum."21

In a last-ditch effort at negotiations, COPOH announced an October19 deadline for first ministers to respond to their proposal for inclu-sion of persons with disabilities in the Canada Clause. They stated at apress conference on 16 October 1992: "We urge you to take this op-portunity and express your collective will publicly to include the rightsof persons with disabilities in the Canada Clause" (COPOH ig92d).

COPOH announced that it would make a public statement on20 October of its position on the referendum. COPOH received no pos-itive response from any of the federal or provincial governments. In-stead its members were urged to accept a commitment "for amodification to section (f) of the agreed Canada Clause at the firstministers' meeting to be held following a successful conclusion to thereferendum" (Clark 1992).

On 20 October COPOH held a news conference to announce its finaldecision on the Accord and recommended that Canadians vote NO. Itspress release reminded voters: "Protection of our rights as Canadianswith disabilities was dropped from the Canada Clause. We were told it wasunintentional and that protection could be re-instated in the legal text.However, now that the draft legal text is public we find ourselves onceagain excluded. We have no choice but to VOTE NO" (COPOH 19926).22

Advertisements placed in newspapers across Canada by COPOH andprovincial disability rights organizations noted that they had "asked for aguarantee that our rights would not be down-graded ... We asked for re-vision 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 saysNO" (COPOH 19926). The sad recognition by Canadian disability orga-nizations that the exclusion of individuals with mental and physical dis-abilities from the Canada Clause of the 1992 Charlottetown Accordwould not be changed by the Canadian first ministers provided a dra-matic contrast to the excitement generated by the inclusion of physicaland mental disabilities in section 15 of the Charter of Rights andFreedoms in April 1981.

A M A J O R P A R T I C I P A N T M A T U R E S

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


During this period, disability advocacy organizations sought to main-tain and enhance the disability rights provision of the CanadianCharter of Rights and Freedoms.

After the failure of the Meech Lake Accord, Canadian disabilityrights groups, particularly those affiliated with COPOH, worked duringthe consultation phase of the Charlottetown Accord to safeguard andenhance the rights of persons with disabilities. They sought to ensuretheir inclusion in the social, political, and economic mainstreamthrough the removal of barriers and the amelioration of conditionsdeemed to be causes of disadvantage. Furthermore, they sought astrong federal structure capable of providing federal leadership to en-sure that persons with disabilities had equal access to social programsacross Canada.

For the leaders of COPOH and other disability rights groups, the pe-riod between September and October 1992 represented a maturing oftheir groups' abilities to mobilize and exert influence on governmentpolicy. In their view, it was better to have no constitutional amendmentthan to have a flawed amendment that could further disadvantage per-sons with disabilities. Fourteen years after the passage of the Charter ofRights and Freedoms, Laurie Beachall, National Coordinator ofCOPOH, argued:

CCD [Council of Canadians with Disabilities, formerly COPOH] probably tookthe best approach it could and made the situation as winnable as it couldwithin the context, within the climate. We certainly got disability, which I don'tbelieve had been on any of the premiers' plates. We got their attention. We gotthe Government of Canada's attention. We got the media's attention ... [Theomission from the Canada Clause] was an unexpected issue that we never ex-pected 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 touchedsectors within the disabled community that had not been closely connected tous previously ... we were able to get public media - national media - coverageof our issue ... And we had significant meetings with premiers and Mr. Clarkaround the issue that I think had a beneficial outcome in the long run. 23

One unexpected outcome of the Charlottetown Accord, however, hasbeen the development of an opposition towards special interest groupson the part of politicians within the Liberal Party and in the Oppositionranks. Special interest groups have been criticized for taking govern-ment funding and then attacking government policy. Indeed, since1993 and the election of the Liberal Government under Jean Chretien,there has been a gradual erosion of federal funding for the CanadaAssistance Program (CAP) and the Vocational Rehabilitation for


Disabled Persons (VRDP) program, the two major federal initiatives forpersons with disabilities.

In addition, discussions between the federal government and theprovinces have moved towards the devolution of federal control overother areas of policy such as manpower training and employment.There has been limited discussion about the establishment of nationalstandards or policies to support the full inclusion of persons with dis-abilities in Canadian society.

6 The Ontario Advocacy Act:Representing Persons withIntellectual Disabilities

I know some people think that the Advocacy Act came into focus because pro-fessionals wanted it and because it seems like professionals were speakingabout it. But it really came through the hearts of people who are vulnerablebecause of this system. We are the people who are getting tired of the systembetraying us or the system locking us up and hurting us and separating us fromour friends and families and society in general. We are people who were reallyscreaming for an independent advocacy system that we can own and that wecan nourish so that we can build a foundation of advocacy. We think it is im-portant that government give us that chance. l

D E I N S T I T U T I O N A L I Z A T I O NAND G U A R D I A N S H I P : 1975 — 85

Ontario's adult guardianship reform movement has recently been con-cerned with potential exploitation by legal guardians and the outdatednature of provincial legislation on mental incompetency. The centralfocus of reform has been to establish a non-legal advocacy system forprotecting the rights and dignity of vulnerable people living inOntario's community and institutional settings. This case study givesthe opportunity to look at the lobbying activities of advocacy groupsfor people with disabilities in this context, and come to some under-standing of the nature of advocacy group participation.2

When the newly elected NDP government announced plans in late1990 to create a non-legal system of advocacy and revive earlier reviewsof Ontario's mental health laws, many disability rights groups were


overjoyed. By the end of 1992, the government had tabled four inter-related pieces of legislation: The Advocacy Act, The SubstituteDecisions Act, The Consent to Treatment Act, and The Consent andCapacity Statute Law Amendment Act, 1992.

Ontario's disability rights community, especially groups representingpersons with psychiatric and intellectual impairments, had been urgingthe government for almost twenty years to create a consumer-driven ad-vocacy system because of the government's failure to create adequatecommunity-based supports in the wake of its deinstitutionalization pol-icy. According to Ernie Lightman: "Deinstitutionalization in favour ofcommunity-based care for persons with psychiatric histories has alwaysbeen marked by a fundamental ambivalence of purpose: the lure of sav-ing money by shutting large and inhumane institutions has been omni-present in government decision making; the commitment to developtrue community care has been far weaker" (Lightman 1992, 25).

This "ambivalence of purpose" meant, for example, that people withpsychiatric disabilities had typically found accommodation in living ar-rangements that provided minimal personal care and support. Despitehaving relatively greater access to adequate community-based housingsupports, at least since the mid-igyos, people with intellectual disabili-ties still faced long waiting lists and often could noly find communityaccommodation in unregulated boarding homes.

This state of affairs created two interrelated sets of problems forthese individuals. The first involved mounting financial pressurewithin government to slow down the deinstitutionalization process un-til adequate community-based housing options were in place; the sec-ond concern, an upshot of the first, was that since large numbers ofpeople with disabilities remained in long-term care facilities they wereconsequently vulnerable to rights violations and abuse. And, given thatmany people with disabilities lived in unregulated boarding homes,the potential for rights violations and abuse in community settings wasomnipresent even on discharge.

The involuntary sterilization of women with intellectual disabilitieshad been another serious rights violation. Until the 19705, many ofOntario's psychiatric institutions forced such women to undergo steril-ization procedures without any form of consent. Moreover, when advo-cates attempted to combat these rights abuses, it became evident thatOntario's Mental Health Act did not contain any provisions to acquireproxy consent for sterilization procedures or any means for determin-ing who was the appropriate decision maker for women who were in-tellectually 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 re-spect to involuntary sterilization for individuals with disabilities. As aresult, the Ministry of Health and the Ministry of the Attorney Generalbegan to hold formal inter-ministerial consultations to determine theappropriate government response. The decision reached at that timewas simply to ban outright all medically unnecessary sterilizations inOntario's hospitals, a decision which avoided the fundamental prob-lem of obtaining consent from persons with disabilities.

At the same time, during the late 19705 and early 19803 models ofguardianship legislation were becoming an increasingly attractive op-tion for the Ontario government for protecting the rights of peoplewith disabilities. Alberta's Dependent Adults Act, which was one of themost comprehensive and widely respected models for legislative re-form, was closely examined by senior government officials in Ontario.

At roughly the same time as models for guardianship were beingconsidered, advocacy groups for Ontario's population of persons withdisabilities began making formal requests to the government for a sys-tem of advocacy. In 1982 Concerned Friends of Ontario CitizensLiving in Long-Term Care Facilities, a lobby group for people living ininstitutions and nursing homes, presented formal policy proposals tothe Progressive Conservative Minister of Health for the establishmentof an advocacy commission to protect people living in these homes.Other groups representing individuals with disabilities, such as theOntario Association for Community Living (OACL) and the AdvocacyResource Centre for the Handicapped (ARCH) , also began makingpresentations and lobbying the Ministers of Health and Communityand Social Services for systematic non-legal advocacy services.

It became evident by the mid-19805 that a wide consultation processwould be required in order to more fully define the costs and benefitsof guardianship and advocacy legislation. In 1984 the OntarioAttorney General decided to form an official advisory committee com-prised of government representatives as well as members from the var-ious advocacy groups for people with disabilities to review Ontario'sadvocacy services and laws related to adult guardianship.

The chronology of the advocacy policy process in Ontario can be di-vided into three stages: policy review through two provincial commit-tees; policy development with input from disability groups; and an ill-fated attempt at policy implementation.

Policy Review: 1985-90

The Fram Committee In 1985 the newly elected Liberal government inOntario established an advisory committee on substitute decision


making for persons with mental incapacity as part of its review processof the legislation relating to mental incompetency. This committeerepresented the first attempt to define a system of advocacy forOntario's vulnerable people.

Steve Fram, a lawyer in the Ministry of the Attorney General, was ap-pointed to chair this advisory committee. Its specific mandate was toreview all aspects of the existing laws that related to persons with men-tal incapacity and to produce a report making recommendations forreform, including a draft legal text of the proposed reforms. The basicproblem the committee attempted to confront was the serious lack ofcoherence in the rules governing how and when persons may havetheir rights to control their lives or property removed, and the powersand duties of substitute decision makers in medical and non-medicalcontexts.

The committee's report was also to address the existing advocacyservices in Ontario, in particular, the Adult Protective Service Worker(APSW) program (under the Minister of Community and SocialServices) and laws relating to conservatorship and personal guardian-ship. The report's aim was to advise the Attorney General, as well asthe Ministers of Health and Community and Social Services, about thekinds of changes that were needed in order to make the existing lawsgoverning mental incompetency more coherent and just.

The committee met regularly over the next three years to discuss re-forms and recommendations that could be included in their final reportto the government. In late 1988, after having reached a rough consen-sus on most aspects of its mandate, the "Fram Report on Substitute Deci-sion Making" was released. Chief among its recommendations were:

• that limiting powers of attorney3 to property decisions, as was thecase in the Mental Incompetency Act, was unduly restrictive; medi-cal and personal care decisions should also be recognized as legiti-mate uses of powers of attorney so that individuals could exercise acertain degree of control over decisions that would affect themshould they become incompetent;

• that any new legislation should strive to recognize the fact that fam-ily members are often the primary source of substitute decisionmaking, and regulations should be structured so as to ensure thatany substitute decision making within families respects the interestsand rights of the incompetent person;

• that a public guardian and trustee be established to act as substitutedecision maker for incompetent persons who lack family andfriends or who may be the object of abuse or neglect;

• that advocacy services for vulnerable people be available prior tothe implementation of guardianship and substitute decision

8g The Ontario Advocacy Act

making legislation. These services would ensure that a vulnerableperson would understand the consequences of substitute decisionmaking for the control of their lives (Ontario Ministry, 1988).

Given the broad terms of reference of the Fram Advisory Committeehowever, a consensus about the nature of advocacy services for vulnera-ble people could not be achieved during its mandate. This led theLiberal government in 1986 (one year after the Fram Committee be-gan) to separate the issue of advocacy services from that of consent andsubstitute decision making and to strike a specific commission on advo-cacy services mandated to report back to the legislature within one year.

The O'Sullivan Commission In 1986 Father Sean O'Sullivan, a LiberalMPP, led a commission sponsored by the Ministry of the AttorneyGeneral into the provision of social, or non-legal, advocacy for vulnera-ble adults in Ontario. The O'Sullivan Commission's mandate was tostudy the concept of social advocacy in relation to vulnerable adults liv-ing in long-term care facilities and community settings, with an eye toformulating specific recommendations for advocacy services, organiza-tional structures, accountability, the training of advocates, and servicedelivery options. The commission was also to review existing volunteerand professional advocacy services as provided by institutional andcommunity support mechanisms and report to the government duringthe summer of 1987 (Ontario Ministry, 1987).

The two most significant recommendations that came out of theO'Sullivan report were the concept of a "shared advocacy model" andthe notion of an "advocacy commission." The former suggested thatresponsibility for advocacy be shared among government, volunteers,and community groups. The model proposed an evolutionary ap-proach to service delivery that would build on the success of programssuch as the Ontario Legal Aid Clinic Funding Program, which encour-aged community groups to develop advocacy services to meet the spe-cific needs of their constituents.

Second, in order to implement this vision of shared advocacy, aprovincial advocacy commission would be required. This body wouldbe empowered to train advocates, set policy, and deliver and monitornon-legal advocacy services throughout Ontario, but at arm's-lengthfrom government. The commission would be staffed by people with a"demonstrated commitment to the interests of the vulnerable andshould not be employed by a service provider, ministry or agency"(8-9). This objective was soon to become one of the most conten-tious issues in the process of developing advocacy policy.

The timing was not propitious, however. The release of the two advi-sory 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 bat-tles as the Liberal government approached the 1990 provincial elec-tion. Consequently, the development of the recommendations intopolicy and legislation did not take place.

Policy Development: iggo-tyzIn August 1990, just prior to the NDP vic-tory in Ontario, a powerful report on community mental health con-sultations by NDP MPP David Reville was released. Entitled "Doing theRight Thing Right," the report emphasized the need to conduct publicconsultations on Ontario's mental health system so as to enable peoplewith disabilities to participate in the policy-development process. Thisreport reinforced an earlier set of recommendations articulated byRobert Graham in his "Building Community Support for People: APlan for Mental Health in Ontario" (1988).

Another important event occurred just after the NDP took office inthe fall of 1990: the release of a coroner's report on the violent deathof Joseph Kendall, a resident of an unregulated boarding home forpeople with intellectual and psychiatric disabilities. This was at thetime the longest coroner's inquest in Canadian history, and the reportcontained over eighty recommendations for reforming residential ac-commodation for adults with disabilities.

A key recommendation of the report was to create a commission ofinquiry to examine the conditions of Ontario's vulnerable populationliving in unlicensed residential homes. In late fall 1990, theCommission of Inquiry into Unregulated Residential Accommoda-tion for Vulnerable Adults was established under Professor ErnieLightman of the University of Toronto. The Lightman Commissionhad members from disability organizations and heard a number ofbriefs from other disability groups.

These initiatives clearly signaled to members of Ontario's disabilityrights community that the new government was serious about includingpeople with disabilities in the policy-development process. Indeed, inDecember 1990 when the minister of Citizenship announced plans tointroduce legislation to establish a province-wide advocacy system andresurrect earlier reviews of Ontario's mental health law, disability advo-cacy groups believed their involvement in the process would be essen-tial for defining a consumer-driven system designed to promote therights, autonomy, and dignity of Ontario's 600,000 vulnerable adults.4

The government tabled the Advocacy Act, the Substitute DecisionsAct, and the Consent to Treatment Act in the spring of 1991 and royalassent was granted in December 1992. The lobbying events that tookplace between tabling and royal assent indicated, however, a clear gapbetween the ideal of a consumer-driven policy process and the result-ing legislation. At the heart of the controversy was the organizational

g i The Ontario Advocacy Act

structure and mandate of the advocacy commission - the instrumentfor developing and implementing advocacy services for Ontario's vul-nerable adult population.

In essence, the Advocacy Act was designed to promote respect forthe rights, freedoms, autonomy, and dignity of Ontario's vulnerableadults. It sought to secure these rights by establishing an advocacycommission composed mostly of persons with disabilities and seniorcitizens. The Advocacy Commission's mandate was to organize andtrain advocates for the provision of individual and systemic advocacyservices for Ontario's vulnerable adults.

The Substitute Decision Making Act was conceived to protect vulner-able people from exploitation, abuse, neglect, and financial loss byproviding a process through which a competent person (for example,a family member) could be placed in charge of important decisionsabout finances and personal care. In addition, the legislation gavegreater legal protection to vulnerable individuals so that they did notlose the right to determine for themselves what was important andmeaningful in life. It also provided for comprehensive support to fami-lies 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 aguardian for those who lacked family support or friends.

Finally, the Consent to Treatment Act codified existing common lawregarding consent to medical treatment for people who were mentallyincapable. Moreover, it provided a mechanism for obtaining decisionsfrom a substitute decision maker when a person was incapable of con-senting to treatment. A further feature of the legislation was that itprovided rights protection for people deemed incapable of makingtreatment decisions by securing an appeal mechanism for any findingof incapacity, and supplied, if requested, an advocate or rights advisorfor such an appeal.

During the winter months of 1991, government officials constructedthe draft for the advocacy legislation, and refined the drafts of theSubstitute Decisions and Consent to Treatment Acts formulated dur-ing the late 19805. By spring 1991 the government had brought for-ward Bills 74, 108, 109, and no for first reading before thelegislature. After their second reading in June 1991, the bills werereferred to the all-party Standing Committee on the Administration ofJustice for review and public consultation.

At roughly the same time, a coalition of health care provider groupsincluding the Ontario Medical Association and medically orientedgroups such as the Ontario Friends of Schizophrenics (OFS), wasformed. The central purpose of this Ad Hoc Coalition of Service Provid-ers seemed to be to pressure the government into changing the Consent

g i The Ontario Advocacy Act

g2 A Seat at the Table

to Treatment and Substitute Decision Making legislation, and to en-sure that coalition representatives were appointed to the AdvocacyCommission. The lobbying activities of this group substantiallychanged the shape and tone of the legislation.

In December 1991 Minister of Citizenship Elaine Ziemba made astatement to the standing committee outlining the basic structure ofthe Advocacy Act. She made frequent reference to the O'SullivanCommission 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 phaseon the legislation in early February 1992. It heard over 140 presenta-tions in two rounds of public hearings between February and April andbetween June and October of that year. It also solicited and receivedabout 200 written submissions from a wide variety of individuals, advo-cacy groups, and interest groups, which commented on all aspects ofthe legislation. In April the committee considered and debated manyof the concerns raised during the first round of the hearings process.Senior governmental officials from the Ministries of the AttorneyGeneral, Community and Social Services, Citizenship, and Health as-sisted in drafting amendments to the legislative package.

All of these draft amendments were then referred to the OntarioCabinet for consideration and approval. On 4 May 1992 the govern-ment announced publicly that it was making changes to the entire leg-islative package, on the basis of the problems and recommendationsraised during the first round of consultations. Despite formal involve-ment in the process of developing the Advocacy, Substitute DecisionMaking, and Consent to Treatment legislation, most advocacy groupson either side were not satisfied with the changes announced in May1992. The essence of their complaints was that the proposed changeswere either too weak to overcome the perceived deficiencies of the leg-islation, or that the amendments reflected compromises that harmedthe interests of one or another group of individuals with disabilities.

One of the major changes was the government's move to alter thestructure of the Advocacy Commission. Originally, the commission wasto be composed of twelve consumers (or representatives) plus a chair.But due to pressures placed on the government from the Ad HocCoalition of Service Providers, four of the twelve positions on the com-mission were reserved for representatives sponsored by this group.

Implementation Of Legislation: 1993-95

Between early 1993 and i April 1995 when the legislation came intoeffect, the primary lobbying activity undertaken by all lobby groups

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93 The Ontario Advocacy Act

centred on two fronts: the first related to securing participation on thegovernment committees established to draft regulations and policyframeworks for implementing the legislation; the second related to thestructure of the Advocacy Commission and the process through whichmembers of the commission were to be selected.

The most controversial developments regarding implementation con-cerned the structure and composition of the Advocacy Commissionitself. During April 1994 the Management Board of Cabinet debated thespecific relationship the commission should have with the government.Originally, the commission was intended to function at arm's-lengthfrom government in order to promote and defend the rights of peoplewith disabilities independently. However, some government officialscalled for a closer relationship between these two entities by designatingthe commission to be a Schedule I Crown Agency that would be directlyaccountable to government. As a result of the lobbying actions of manygroups, the Advocacy Commission was ultimately designated aSchedule III Crown Agency, at arm's-length from government.

Another significant and controversial issue was the process for ap-pointing advocacy commissioners. The legislation created an Appoint-ments Advisory Committee to recommend to the Minister ofCitizenship a list of possible candidates for membership on theAdvocacy Commission. This committee itself was made up of nine con-sumer representatives, to be appointed by the Minister of Citizenship.

The process for selecting an initial list of candidates from which ap-pointments to the Advocacy Commission were to be made was compli-cated. First, six geographic regions of the province and eight separatecategories of organizations could nominate candidates (service provid-ers and disability advocacy groups being the dominant categories).The next step involved regional elections of candidates; regionallyelected candidates would then enter a province-wide election. Individ-uals who were successful at that level were then part of the list of candi-dates from which the minister was to choose eight members for thecommission.

The remaining four commissioners were to be selected by theMinister herself from an additional list of people who had "a demon-strated commitment to the purposes of the Act" (The Advocacy Act,1992 section 5 (4)). However, all four positions went to candidatesrecommended by the Ad Hoc Coalition of Service Providers, some ofwhom were extraordinarily critical of the legislation. This change inrepresentation seemed to be the result of lobbying efforts by theAd Hoc Coalition that had been directed not only to the Minister ofCitizenship during the Standing Committee hearings in 1992, but toPremier Bob Rae himself.



The greatest controversy arose, however, over the appointment aschair of the commission of David Reville a former NDP politician whoat that time was Premier Bob Rae's senior policy advisor. Besides theobvious charge of a patronage appointment, controversy erupted overhis $125,000 annual salary and his outspoken allegiance to commis-sioners with disabilities over those whom the Minister appointed fromthe Ad Hoc Coalition. The resulting hostility among some members ofthe commission confounded the process for developing the AdvocacyCommission and implementing the Advocacy Act.

C H A R A C T E R I S T I C S O F

T H E C O M P E T I N G C O A L I T I O N S

The Ontano Advocacy Coalition

The largest and most influential disability advocacy organization tosupport the proposed legislation was the Ontario Advocacy Coalition(OAC). As of i March 1994, the coalition was composed of forty-six dis-ability rights advocacy groups from across Ontario, including non-gov-ernmental organizations and arm's-length government agencies.

The loosely structured coalition was initially formed in 1986 byOrville Endicott, a long-time able-bodied advocate for people with in-tellectual disabilities and legal consultant with the Ontario Associationfor Community Living (OACL) and People First Ontario, an advocacygroup for people with intellectual disabilities. The central goal of theOAC in this policy process was to promote the establishment of an in-dependent, fully funded, advocacy system for vulnerable people livingin Ontario. The OAC'S specific mandate to establish an advocacy sys-tem in Ontario was described in its official statement of principles:

• the advocacy system should be introduced and be fully operationalprior 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 initialdrive to create an advocacy system in Ontario: ARCH, ConcernedFriends, People First Ontario, and the OACL. In essence, these groups



made initial contact with each other during their separate lobbying ac-tivities in the early 19805. Concerned Friends was lobbying the Conser-vative Minister of Health, Larry Grossman, over the treatment ofvulnerable elderly people in Ontario's nursing homes. At roughly thesame time, the OACL and People First Ontario were lobbying the Min-istry of Community and Social Services for a more formal advocacy sys-tem to protect people with intellectual disabilities living in nursinghomes and long-term care institutions. ARCH, being a specialized legalaid clinic for people with disabilities, began to be called upon to repre-sent individuals with disabilities in legal matters surrounding guardian-ship and rights advocacy.

It is interesting to note that all the dominant figures leading thesegroups either worked for the OACL or had on-going contact with OACLstaff. As previously mentioned, Endicott, the Coordinator of the Advo-cacy Coalition, worked as a legal consultant with both People First andOACL. David Baker, the executive director of ARCH, and one of thecentral players in the disability rights community in Ontario, was a law-yer with OACL. Trish Spindell, the spokesperson for ConcernedFriends, was a staff member focusing on advocacy for OACL during theearly 19805. And Patrick Worth, Past President of People First Ontario,worked closely with Endicott and had collaborated with OACL on advo-cacy and guardianship issues. Thus, the central leadership of theAdvocacy Coalition began its advocacy work with a strong representa-tion on behalf of people with intellectual disabilities.

The involvement in the coalition of people with psychiatric disabili-ties and their advocacy organizations was also facilitated by contacts be-tween ARCH and the Psychiatric Patient Advocate Office (PPAO) of theMinistry of Health. Baker of ARCH and David Giuffrida of the PPAOhad worked together on the Fram Committee beginning in 1985.Giuffrida's contacts in the mental health field drew to the AdvocacyCoalition mainstream groups such as the Ontario and Torontobranches of the Canadian Mental Health Association.

As well, an influential seniors group - Canadian PensionersConcerned - initiated their contact with the Advocacy Coalition dur-ing the coroner's inquest into the death of Joseph Kendall between1985 and 1990. Mae Harmen, a retired social work professor whowould later serve as co-chair of the OAC, participated on behalf ofthis seniors advocacy group in the activities surrounding the coro-ner's inquest.

During the official government-led drive for advocacy services in the1990-95 period, the key spokespersons for the Advocacy Coalitionwere Orville Endicott (Coordinator), Joan Fussel (Co-Chair) MaeHarmen (Co-Chair), Patty Bregman (ARCH), and David Giuffrida



(PPAO). Patrick Worth and Norval Sears of People First Ontario andAudrey Cole of the OACL were also important leaders in the advocacydebate, but their role was complicated by the fact that both groupssplit away from the Advocacy Coalition in 1991 over the substitute-decisions legislation, to be discussed later.

One difficulty in determining who were the chief spokespersons forthe Advocacy Coalition was its loose structure: key member groupswould often speak to the media or before government committees asrepresentatives of their member group and not as representatives ofthe Advocacy Coalition. But this practice was not perceived as detri-mental to the objectives of the coalition: Patrick Worth, for instance,was generally viewed to be a passionate, well informed, and articulatespokesperson on the need for an advocacy system. Indeed, as theHansard record reveals, Worth's presentations before the StandingCommittee on the Administration of Justice clearly moved the politi-cians and senior government officials.

Despite the Advocacy Coalition's inability to speak with one voice onimportant organizational issues, it received government funding untilthe Progressive Conservative government of Ontario assumed powerin June 1995. The position of coordinator for the Advocacy Coalitionwas a paid, part-time position, dependent on funds from the Ministryof Citizenship. In addition, the Advocacy Coalition obtained moneyfrom the same ministry to assist with public information sessions re-lated to the advocacy legislation during 1993-94.

The key organizational feature of the Ontario Advocacy Coalitionwas a shifting membership base. Although its groups were all commit-ted to the overall goal of securing advocacy legislation, there weremany competing views: for example, on how the leadership of theAdvocacy Coalition was to be structured, on the funding of groupswithin the coalition, and on the type of lobbying tactics to be em-ployed. Ultimately, the Advocacy Coalition was a loosely structuredgroup that was able to make dramatic gains in terms of problem identi-fication and policy formation, but lacked sufficient depth and consis-tency to prevent challenges from well organized opposition groupsduring the policy implementation phase.

Tfo Ad Hoc Coalition of Service Providers

The other major interest group in this policy-making process was theAd Hoc Coalition of Service Providers. Although not composed of per-sons with disabilities per se, it included family members who advocatedfor persons with disabilities. The Ad Hoc Coalition provides an inter-esting and illustrative contrast to the Ontario Advocacy Coalition.


gy The Ontario Advocacy Act

Unlike the Advocacy Coalition, the Ad Hoc Coalition was tightly or-ganized and well funded through its major institutional members. Thelobby was made up of the major medical interests of the province andincluded: the Ontario Medical Association (OMA), the College ofPhysicians and Surgeons, the Ontario Hospital Association, theRegistered Nurses of Ontario, the Ontario Friends of Schizophrenics,and the Alzheimer Association of Ontario. These groups formed a coa-lition during the summer of 1991, after the first and second reading ofthe advocacy legislation. According to Barb LeBlanc of the OMA, "whatwe realized is that we did share a number of common concerns [andso] we organized around a very few basic points."5

Those basic points related to all three pieces of legislation becauseof 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 AdvocacyCommission and on the Appointments Advisory Committee;

• to change the sections of the Consent to Treatment bill that relatedto provision of emergency services to incapable people;

• to amend sections of the Substitute Decisions bill, particulary thoseaspects dealing with the nature of powers of attorney and guar-dianship.

These basic points that motivated the Ad Hoc Coalition also func-tioned as their explicit mandate. That is, their overall goal was practi-cal: how to make the legislation more responsive to health careproviders and families of people with psychiatric disabilities.

At the centre of the Ad Hoc Coalition was the OMA. It provided staffsupport, and Barb LeBlanc was the principal spokesperson for theCoalition during the Standing Committee consultation process.LeBlanc was also responsible for coordinating the lobbying activitiesfor the OMA and the Ad Hoc Coalition during the 1991-92 period.

The Ontario Friends of Schizophrenics and the Alzheimer Associa-tion of Ontario were two other key member groups that representedconcerns related to the involvement of family members in this policyarena. The involvement of these "family" groups in LeBlanc's view, alsoaltered the dynamic of the Ad Hoc Coalition's meetings: "Their interestswere much more family oriented, much more oriented towards a systemthat works for their ill family members rather than how we can make thesystem go in practical terms."b The key organizational elements of theAd Hoc Coalition included a consistent and selective focus on objec-tives, clear leadership and authority, consistent funding, and the abilityto resist being drawn into contentious issues between member groups.

gy The Ontario Advocacy Act


F I N D I N G A V O I C E

In many ways the process for developing advocacy, consent, and deci-sion-making legislation signified new gains for persons with disabilitiesin Ontario. At the governmental level, the structure of the FramAdvisory Committee itself was unique since it represented the firsttime that disability advocacy groups were officially involved in policymaking on that issue and at that level of political influence.7

A unique feature of the O'Sullivan Commission was the ongoing in-volvement of a consumer-advocate - Patrick Worth of People FirstOntario. The personal bond that grew between Father O'Sullivan andWorth deeply influenced the urgency and scope of the recommenda-tions brought forward for advocacy services. And the most significantaspect of the Lightman Commission, from the perspective of this casestudy, was that three out of its seven public consultation meetings wereorganized and conducted by people with disabilities themselves.

Of course, intense lobbying activities both by groups supporting thelegislation and those opposed to it occurred in regard to all aspects ofthe legislation, but none was as significant for defining the nature ofadvocacy services in Ontario as was the debate around the structure ofthe Advocacy Commission. The central players in this conflict wereconsumers (or disability advocates) and medically oriented interestgroups, such as the Ontario Medical Association and the OntarioFriends of Schizophrenics.

The lobbying efforts of Concerned Friends and the Ontario Advo-cacy Coalition through ARCH, one of its dominant member groups,put pressure on the new government to follow through on its assur-ances and election promises to create an advocacy system in Ontario.These groups lobbied government officials through direct consulta-tions with the Minister of Citizenship and with MPP Gary Malkowski, adeaf activist and parliamentary assistant to the minister. In addition,ARCH and Concerned Friends lobbied senior government officials inthe Office of Disability Issues and the Advocacy Project Team, the newgovernment departments that had been assigned responsibility for de-veloping the advocacy legislation.

Two persons stand out among the dominant members of theParliamentary Standing Committee: Gary Malkowski, the MPP respon-sible for coordinating the public consultations, and Steve Fram of theMinistry of the Attorney General, the senior government official actingas counsel and policy advisor to the Standing Committee. These twoindividuals had both been involved in the advocacy process, both at anofficial governmental level (Fram), and at a grassroots and politicallevel (Malkowski).


F I N D I N G A V O I C E


Notable among the disability rights groups making formal presenta-tions to the Standing Committee during 1992 were: the OntarioAdvocacy 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 andHIV disease. During the two rounds of public consultation, thesegroups presented formal submissions to the Standing Committee. Asthe Hansard records reveal, these groups addressed the committee inthree distinct ways: first, as members of the Ontario Advocacy Coali-tion; second, as representatives of a specific vulnerable population;and third, as individuals with disabilities or as family members of a per-son with a disability. The concerns of these disability rights groups canbe organized into three key areas: the effect of the three bills on thelives of persons with disabilities; the process through which various as-pects of the legislation were developed; the appropriate mechanismsfor implementing the legislation.

Interestingly, these concerns were the same as those of the Ad HocCoalition of Service Providers with respect to the legislation, but theywere seen from diametrically opposite points of view. Generally, the lat-ter group was opposed to a system of non-legal advocacy and to most ofthe provisions contained in the Substitute Decision Making andConsent to Treatment legislation. But as noted earlier, when theAd Hoc Coalition perceived the government moving ahead with thelegislation, it demanded more participation on the Advocacy Commis-sion and the Appointments Advisory Committee, the device for select-ing candidates for the commission.

It was also unusual that legal representatives for the OntarioAdvocacy Coalition assisted senior government officials in drafting sec-tions of the Bills 74 and 108. This action was permitted by senior gov-ernment officials as a way of accommodating the Advocacy Coalition'sspecific concerns about the legislation.

However, the frustration surrounding the Cabinet amendments thatwere subsequently introduced led many advocacy groups to privatelylobby Standing Committee members for additional changes. GaryMalkowski and Steve Fram were important focal points for the activi-ties of all the groups because of their responsibilities on the StandingCommittee during the public consultation process.

One of the most important political events that forced changes tothe Substitute Decision Making legislation was the demonstrationheld by People First Ontario at the Attorney General's Office inSeptember 1992 to protest the guardianship provisions in theSubstitute Decision Making bill. This event led directly to substantialchanges in the legislation.


T

During the implementation stage, ARCH, one of the most activemember groups of the Ontario Advocacy Coalition, obtained a seat onthe committee for implementing Substitute Decision Making. Thiscommittee then consisted of over thirty other advocacy groups and in-terest groups that represented Ontario's medical establishment. In ad-dition, ARCH was concerned with the regulations that were beingdeveloped around Consent to Treatment, and actively lobbied officialsat the Ministry of Health not to abandon the original intent behindthe legislation as they were being urged to do by the groups represent-ing physicians and health practitioners.

When the Advocacy Coalition and Concerned Friends discovered theManagement Board's intentions to create the Advocacy Commission asa Schedule I agency, and thus subject to direct government control, theyquickly organized a press conference and revealed the government'snew plans. In fact, they planned to "pin an eviction notice" on PremierRae's office door if the government went ahead with designating thecommission as a Schedule I agency.8

According to Trish Spindell of Concerned Friends, the real catalystfor the formation of the Ontario Advocacy Coalition was the involve-ment of Ontario's disability rights groups in the Fram and O'Sullivanadvisory committees. Their participation in the official government ad-visory bodies initiated the process of coalition-building between con-sumer groups and supportive social service agencies.

Complicating the process of participation was the fact that theAdvocacy Coalition had an ever-increasing number of associations andconsumer groups (in 1990 it had twenty-three members and by 1994 ithad forty-six). Spindell argues that the OAC never really expressed asingle voice over a non-legal system of advocacy. She suggests four rea-sons for this failing: First, many member groups were shell organiza-tions. "They weren't organizations that actually represented whatI would consider to be a formed constituency, people who were reallyon top of the issues, who knew what was going on and who had a visionof what they wanted put forward."9

The second complication was that the membership of the AdvocacyCoalition was constantly changing: "People would show up for one ortwo meetings and then you would never see them again." Third, the factthat the Advocacy Coalition included consumer groups, formal advocacyorganizations (for example, the PPAO), and service delivery agencies inits membership meant that the Coalition "never came together as a realcommunity of interest. There were always such significant conflicts thatit never actually came together and took a unified position." These con-flicts within the Advocacy Coalition were not merely differences of opin-ion over strategic matters. On the contrary, as Spindell puts it, "this

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group was shot through with philosophical disagreements" becausethere were no real criteria about who could join it.

The fourth major issue, the question of whether the AdvocacyCoalition should accept funding from the government, divided mem-ber groups significantly. Concerned Friends was firmly opposed to ac-cepting money from the government, but ARCH believed the work ofthe Advocacy Coalition could be facilitated by tapping into availablemonies. In Spindell's view, this discrepancy created a two-tier system:some groups within the coalition received funds and some did not, yetall were important stakeholders in advocacy legislation. Moreover, ac-cepting government funds, as Spindell put it, "sometimes drives awedge 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 alsopossible to discern differing views about the dominant groups withinthe Advocacy Coalition, and who the key personalities driving the coa-lition's decision-making process were. Key member groups of theAdvocacy Coalition during the 1991-95 period were ARCH, the PPAO,and AIDS Action Now!. Spindell's impression is that the [OAC] was "anARCH-driven coalition." Cole describes the meetings of the coalition asa "battle between the Davids," that is, between David Baker of ARCHand David Giuffrida of PPAO. Cole adds that the vast majority of coali-tion member groups were vulnerable people who were neophytes inthe whole arena of public policy and political lobbying and easily fellinto line with either ARCH or PPAO representatives on a preferred ad-vocacy system.10

David Kendall of AIDS Action Now! was also a powerful member ofthe Advocacy Coalition, although his organization did not join the coat-lition until 1990-91, at least four years after it began lobbying for ad-vocacy in Ontario. The source of this group's influence rested largelywith Kendall because of his political sophistication and legal expertiseover advocacy issues affecting people living with HIV and AIDS. How-ever, there was some resentment generated by the late involvement ofAIDS Action Now! in the advocacy process as well as a perception bygroups representing people with psychiatric disabilities that yetanother lawyer (also named David) was a dominant figure in strategicdebates.

The differences between AIDS Action Now! and psychiatric survivorswithin the Advocacy Coalition reflected a somewhat broader tension be-tween more politically seasoned and legally trained advocates and dis-ability consumer representatives. Not only was the Advocacy CoalitionARCH-driven but it was primarily dominated by professional lawyerstrained in the adversarial method. Their dominance, according to Cole

i o i The Ontario Advocacy Act


and Spindell, tended to silence the less articulate consumer representa-tives and suppress a full airing of alternative policy options for advocacyand substitute decision making. Although the Advocacy Coalition pro-cess operated formally by majority vote, many consumer groups feltstranded outside the real decision-making process, which reflectedstrength of expression of opinion.

Spindell argues, moreover, that the decision-making structure of thecoalition was too cumbersome when strategic political decisions wererequired in response to major changes of direction from the govern-ment. The monthly meetings of the Advocacy Coalition during the1991-92 period were too infrequent to allow participants to reach aconsistent and unified stand on emerging issues (e.g., whether theAdvocacy Commission was to be an arm's-length government agencyor a directly accountable one).

Although other representatives of the Advocacy Coalition were gen-erally perceived to be reasonable and well-informed representatives oftheir constituents' interests, when certain of them spoke out on se-lected aspects of Substitute Decision Making legislation, they inadvert-ently undermined the coalition course. For example, when AudreyCole of OACL and Patrick Worth of People First argued before theStanding Committee that Substitute Decision Making legislationwould violate the equality rights of persons with severe intellectual dis-abilities and should therefore be replaced by a new model of decisionmaking called "supportive decision-making," otherwise positive politi-cians and government officials balked and dismissed their argument.

This new model of supportive decision making involved using trainedadvocates to interpret a person's wishes, whether directly or indirectlyexpressed, rather than involving family members and friends who knewthe person well. There were significant problems with the processthrough which the concept was introduced. First, the new idea was intro-duced at the eleventh hour when both the OACL and People First hadpreviously supported traditional substitute decision-making principles.Second, the tone of OACL-People First representatives' remarks in com-mittee was aggressive and amounted to telling the government that un-less it accepted their model of supportive decision making it would besanctioning a legislative framework that would unjustly discriminateagainst persons with severe disabilities. Since there seemed so little inter-nal support from the rest of the Advocacy Coalition for these proposalsand the politicians were clearly not convinced, the alternative platformtarnished the generally positive image of People First and the OACL andreflected negatively on the Advocacy Coalition itself.

The comparatively narrow focus of the Ad Hoc Coalition, on theother hand, kept larger, more complex issues about the legislation and



its effects on member groups to a minimum. Their focus on smallerand more strategic points enabled member groups to participate effec-tively without risking the development of internal factions. As LeBlancstates, "We picked our issues because there were certain things that wenever came to agreement on as an ad hoc group."11 The Ad HocCoalition encouraged members to speak out on their own on contro-versial issues that member groups felt strongly about, as representa-tives of their specific constituency. In LeBlanc's view, there was nostatus hierarchy among groups within the Ad Hoc Coalition. The so-called family groups (the Ontario Friends of Schizophrenics and theAlzheimer Society) "participated fully at meetings ... and in terms ofinput, [there] was equal footing."

Despite being well funded and well organized, the Ad Hoc Coalitioninitially received a hostile response from the NDP government in 1991.According to LeBlanc, the protests from the Ad Hoc Coalition with re-spect to the provisions for emergency treatment in the Consent toTreatment Bill were greeted with accusations of scare-mongering. Thisinterpretation led to the government view, subsequently modified sub-stantially, that the Ad Hoc Coalition in general, and the OMA in partic-ular, were fundamentally opposed to the legislation and wouldobstruct attempts to develop and implement the legislative package.

But when the government began to appreciate the concerns of phy-sicians over aspects of practical implementation of Consent to Treat-ment legislation, the negative perception of the medical lobbysoftened. As LeBlanc puts it, "once we were able to use actual case sce-narios ... [in describing the likely consequences of the Consent toTreatment Bill] there became some political interest and that is whenwe started to be invited to the occasional [bargaining] table."

P O L I C Y O U T C O M E S

The entire process of refining the implementation of the Advocacy,Substitute Decision Making, and Consent to Treatment legislation, cameto a halt soon after the election of Ontario's Conservative Party underMike Harris. In the fall of 1995, the Harris government introduced Bill19, An Act to Repeal the Advocacy Act, 1992, Revise the Consent toTreatment Act, 1992, and Amend the Substitute Decisions Act, 1992.

This action followed an explicit election promise by the Conserva-tives to dismantle the Advocacy Commission and review all aspects ofthe new legislative package. Unlike the former government, which hadengaged in many forms of consultation with disability rights groupsand the health care community, the Conservatives conducted onlybrief public hearings on Bill 19 and conducted no formal discussions



with advocacy groups about the consequences of repealing theAdvocacy Act.

Moreover, despite protests from the disability rights community thatjettisoning advocacy legislation while maintaining the central aspectsof substitute decision making and consent to treatment legislationwould result in people with disabilities' losing the right to make vitaldecisions affecting their lives, the government passed the bill into law.The new consent to treatment legislation was amended and renamedthe Health Care Consent Act, 1996, and the substitute decisions act isnow simply a set of amendments to Ontario's Mental Health Act.

Despite the reversals, it is nonetheless instructive to examine thesubjective and objective outcomes of the lobbying activities conductedby the key stakeholders in these policy-making processes. One diffi-culty in characterizing the outcomes of the lobbying initiatives of boththe Ontario Advocacy Coalition (including the OACL and People First)and the Ad Hoc Coalition of Service Providers relates to the multitudeof perceptions held by different stakeholders. Despite repeated com-plaints by all parties about the content of the legislation, the objectiveoutcomes were clear: the creation of advocacy legislation for vulnera-ble adults living in Ontario; substantial changes to Ontario's mentalhealth law with the addition of substitute decision making and consentto treatment legislation; the active participation of health care provid-ers, disability advocates, and families on the Advocacy Commission andits advisory bodies; and the revival of policy objectives related to pro-tecting the rights of Ontario's vulnerable population.

More specific objective outcomes can be grouped around particularlegislation and relate to the participation of persons with disabilities inkey aspects of civil society. The first amendment to the Advocacy Actthat can be linked with specific stakeholder activity concerned astrengthened role in the advocacy process for families and caregiversrather than for persons with disabilities or their advocates. This wasachieved through the Ad Hoc Coalition's increased representation onadvisory committees to the Advocacy Commission.

A second amendment, attributable to the lobbying activities of theOntario Advocacy Coalition, gave advocates the authority to providesome services to safeguard the health and safety of vulnerable personsif they could not provide instructions to advocates about their situa-tion. The final bill contained a whole new category of duties entitled"The Responsibilities of Advocates" (sections 17-19). The newsections essentially clarified the scope of activity for advocates and rec-ognized the possibility of non-instructed advocacy (section 17,subsection 3), that is, making decisions based on the advocate's bestjudgement of the interests of the person.



Third, People First Ontario and the OACL had section 15 of theAdvocacy Act modified in response to the stigmatizing effects of label-ling.12 In addition, members of the Ontario Advoacy Coalition such asDavid Baker (ARCH), David Giuffrida (PPAO), Audrey Cole (OACL),and Patrick Worth (People First Ontario) pushed for and achieved fur-ther amendments to ensure that advocates would not become substi-tute decision makers for vulnerable people.13

Without a doubt, the Substitute Decision Making Act engenderedthe most controversy and sustained the most persistent attack from allquarters. Indeed, various misunderstandings of the act caused manysenior citizens to suppose that without some pre-validated power of at-torney,14 their assets would immediately become the property of thestate if they became seriously incapacitated.15 Nonetheless, the amend-ments that had been proposed in May 1992 reflected a serious attemptto accommodate many concerns raised by advocacy groups.

The first major amendment occurred in the sections on powers ofattorney for personal care (sections 46-54). Specifically, the AttorneyGeneral amended the act to allow people to make powers of attorneyfor personal care based on knowledge of persons whom they trust (sec-tion 46).

The second significant amendment to bill 108 related to additionalprovisions for partial guardianship (section 60). Partial guardianship re-ferred to the notion that persons may be deemed to be capable ofmaking important decisions for themselves in some areas of life, forexample, in contexts relating to personal care, but be considered inca-pable in other areas, for instance, in circumstances involving financialmatters. Partial guardianship allowed for persons to authorize some-one to make decisions for them in just those areas they believe them-selves incapable.

With respect to subjective outcomes, or the various and often-conflicting interpretations and perceptions of the policy developmentprocess, both the Advocacy Coalition and the Ad Hoc Coalition believedthat the other side had received the lion's share of concessions from thegovernment. For example, the OACL believed that the intellectual dis-ability rights community achieved virtually nothing from the legislationbecause the government failed to abandon substitute decision makingand appoint anyone from the OACL to the Advocacy Commission. TheAd Hoc Coalition argued, on the other hand, that the government gavepreferential treatment to consumer organizations and that was the rea-son Ad Hoc Coalition recommendations were not followed in changingthe Consent to Treatment legislation.

Other groups believed that the legislation that was brought forward,however imperfect, was at least something concrete upon which to



structure new institutions for the protection of Ontario's vulnerableadults. These disability advocacy groups, in particular ARCH, recog-nized that compromise was inevitable, and so focused their energieson ensuring that the implementation procedures developed for trans-lating the legislation into concrete policy were fair and representativeof the interests of their constituencies.

We can judge the subjective outcomes more systematically by examin-ing some of the key objections raised by advocacy groups after amend-ments were announced to the legislation in May 1992. During thesummer of 1992, the Advocacy Coalition and the Ad Hoc Coalitionboth quickly pointed out that the proposed changes to the legislationdid not capture what they demanded. Again, according to MPP GaryMalkowski, advocacy groups on all sides assumed that the opposinggroups received the majority of concessions. For example, the OMA andthe Ad Hoc Coalition believed that they "lost" with respect to thechanges they demanded to Bills 108 and 109, whereas the AdvocacyCoalition believed the Ad Hoc Coalition had "won" and they had "lost"in terms of overall gains and losses. Malkowski argues that neither set ofopposing groups received everything they wanted, but each made sig-nificant gains and had a strong influence on the legislative amend-ments that were put forward. Orville Endicott makes it clear that thegovernment's concessions to the Ad Hoc Coalition to appoint serviceproviders to the Advocacy Commission undermined whatever influencethe Advocacy Coalition may have had in shaping the government's di-rection on advocacy legislation. Audrey Cole (OACL) confirms this viewand suggests that the Ad Hoc Coalition received more overall recogni-tion and had a greater influence over the resulting legislative amend-ments than groups representing persons with disabilities.

The OACL, CACL and People First Ontario argued that the additionsand clarifications to the Advocacy Act were insufficient to enable peo-ple with severe intellectual impairments to use advocacy services. "It isunacceptable that individuals with severe disabilities will qualify fornothing more from an advocate than assistance when their health andsafety are at serious risk."16 On the other hand, the Ontario Friends ofSchizophrenics of the Ad Hoc Coalition complained of being shut outof the amendment process because they were not consulted about theproposed changes to the Advocacy Act.17

With respect to substitute decision making, none of the powerfulgroups were satisfied with the amendments. The Ontario Friends ofSchizophrenics thought that partial guardianship was too weak to en-able families to make decisions on behalf of their family member. TheOACL and People First Ontario rejected any form of guardianship asinherently unjust towards persons with severe disabilities.


thhhhhhhhhhhhht

In addition, the latter two groups objected to the new sections ofsubstitute decision making relating to powers of attorney for personalcare and the provisions for pre-validated powers of attorney. For theOntario Friends of Schizophrenics, this provision meant further delaysin treatment, since the requirements to be met under section 47(9)(the capacity to give powers of attorney) when combined with the con-ditions 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 advocacygroups for vulnerable people, despite their active involvement andconsultation in this process.

In summary, advocacy groups for persons with disabilities, as well asthose for service providers, played a vital role in the legislative processsurrounding Ontario's advocacy legislation. Many changes and amend-ments were the direct result of suggestions, arguments, and the actionstaken by a variety of such groups. In addition to the larger changesmentioned, some smaller but symbolically important modifications tothe legislation occurred as the direct consequence of intervention byadvocacy groups. An interest group perspective appears to largely ex-plain this participation.

Although the efforts of these groups to modify the legislation oc-curred both prior to and after the actual public consultation phase,their participation and influence over the members of the StandingCommittee contributed substantially to public recognition of theirclaims. In addition, this participation gave advocacy groups access togovernment officials that they might not otherwise have obtained. Re-gardless of the extent to which these groups remain unsatisfied withthe degree of influence they.exerted over the legislative process, or thestructure and process of the Advocacy Commission itself, it remainsclear that advocacy groups played a crucial role in motivating andmodifying the Advocacy Act and its companion legislation.

This case study shows that disability advocacy organizations are capa-ble of effective participation in Ontario's policy development pro-cesses. To the extent that the policy objectives of disability groups havepublic support, it appears that contentious policy and organizationalissues can be effectively managed by strong leadership, and advocacygroups can overcome an experienced Opposition and government bu-reaucracy in achieving key policy goals. Of course, the particular formof citizen participation within the policy development process dependslargely on the ruling political party's views on public consultation andthe usefulness of involving organized interests within whatever consul-tation process is established.


tin British Columbia:Reform and Restructuringthrough CommunityParticipation

Some members of society lack the competence necessary to managetheir own affairs; others are very vulnerable to abuse or exploitation.In the past it was argued that all such people needed formal guardiansto help them cope with daily living. In British Columbia, contempo-rary legislation providing legal guardianship was set out in two acts dat-ing from the 19408 (Patients' Property Act, Power of Attorney Act). In1982, however, the Charter of Rights and Freedoms, which recognizedthe rights of persons with disabilities, was appended to the patriatedConstitution. With the new Charter it became clear that these twoguardianship acts, particularly the former, were outdated and shouldbe replaced. At the same time there were major changes in the way inwhich disability was viewed due to the International Year of DisabledPersons, 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 interre-lated pieces of legislation designed to protect the rights of its vulnera-ble adult population of persons with disabilities: the RepresentationAgreement Act, the Adult Guardianship Act, the Public Guardian andTrustee Act, and the Health Care (Consent) and Care Facility(Admission) Act. These acts represented the government's attempt tocomprehensively modernize the legislative frameworks governing thelives of those with mental disabilities. The overall policy reform pro-cess was characterized not just by the need to modernize BritishColumbia's adult guardianship legislation through the recognition ofthe human rights of people with disabilities but also by the need to

AdultGuardianshipLeigislation

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 legislationwas partly the result of action taken by the British ColumbiaAssociation for Community Living (BCACL), a key advocacy group forpeople with intellectual disabilities.1

THE NEED TO UPDATE G U A R D I A N S H I P LAWS

The reform of adult guardianship statutes for British Columbia's vulner-able population was motivated primarily by the requirement to have lawsthat better reflected the current living conditions of such individuals.The Patients' Property Act had originally been developed to meet theneeds of persons who were involuntarily committed to institutional carewhen they became mentally disordered in some way.2 But Canadian gov-ernments had begun to reduce the numbers of patients in institutionsafter the Second World War, beginning with those whose disorderscould be controlled by drugs or social training and then moving on tofind community solutions to the problems of persons with more pro-found disorders. Consequently, there were many people living in BritishColumbia communities who would earlier have been institutionalized.

The Power of Attorney Act regulated the transfer of authority overanother person's property. It gave individuals the means to allow aproxy decision-maker (for example, a family friend or lawyer) to makea range of decisions related to their property when they were unable todo so themselves. However, in the case of individuals with mental dis-abilities, the act allowed the transfer of authority to be requested bytheir family, friends, or mental health professionals, if it was judgedthat they could not make sound decisions affecting their property.

The Power of Attorney Act was outdated because it was too rigid insome ways and too loose in others. It enabled some people to be ex-ploited and did not provide adequate protection for those who hadslipped into dementia. Although attempts had been made to correctthis last inadequacy by introducing the concept of an "enduring powerof attorney," the distinction between power of attorney and enduringpower was not always understood by those who wished to provide forfuture needs.

Under the existing laws, legal adult guardianship differed from as-signment of powers to a chosen representative in that it was the trans-fer of power to another individual without consent of the vulnerableperson. This transfer of power could be sought by family, friends, orother community members when a person ceased to function ade-quately 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 Columbiahave been made by doctors.) A family member or friend could be ap-pointed as a "committee" to look after the affairs of the incapable per-son, or the Office of the Public Trustee could take over. As indicated bythe emphasis on property in the acts, the committee was expected pri-marily to manage the person's estate. Less emphasis was put on per-sonal care, although social work support could be sought if necessary.

The terms "Patients' Property" and "Power of Attorney" emphasizedthe management of business affairs, not personal relationships. Com-mitting a person to the care of a professional advisor (such as a bankmanager) or the Public Trustee did not give enough attention to per-sonal relationships to satisfy the disability community that humanrights were being adequately addressed. Nor did these two acts offeradequate protection to those who might become incompetent for aperiod but return to full capability at a later date.

It was recognized that the Patients' Property Act was outdated, butreforming the legislation did not appeal to the Social Credit govern-ment in power in Victoria from 1975 until igga.3 No Social Creditminister was prepared to introduce legislative changes until Bud Smithbecame Attorney General. Previously, an NDP government had tried toset up Human Resource Boards (with community membership and au-thority) in British Columbia. The province seemed to be more open toideas of citizen participation in policy making than many other prov-inces except perhaps Saskatchewan and Quebec.

Because Al Etmanski, the Executive Director of BCACL,4 recognizedthat an opportunity was opening up in the spring of 1989, he called to-gether a group of people interested in reform of adult guardianshiplegislation to see whether they could push the government into mak-ing changes. The group was named the Project to Review AdultGuardianship (PRAG).

The chronology of this case falls into two stages: policy developmentand implementation.

Negotiating New Legislation

A new Public Trustee, Myrna Hall, was appointed by the AttorneyGeneral in the summer of 1989, and an Inter-Ministry Committee rep-resenting the Ministries of Health, Social Services, Housing, and theAttorney General was set up in January 1990 to assist her with the pro-cess of guardianship reform.5 Meanwhile, PRAG had begun to meetregularly in 1989, calling itself the Guardianship Committee. Thecommittee 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 necessaryto consider the views of people whose lives would be affected by thelegislation (PRAG, iggoa). Consequently, they sought funding andwere able to persuade the Law Society and the Notary Foundation toprovide financial backing for a community survey to determinewhether there was general interest in the idea and ask what were thespecial concerns of respondents.6 PRAG developed its community sur-vey in the fall of 1989 and sent it out to those who they thought wereconcerned about the matter. The response indicated that there wasconsiderable interest and diversity of views in the community. Therewas agreement on the need for change but not on how changes wouldbe implemented.

On 4 October 1990 a formal agreement was reached between PRAGand the Inter-Ministry Committee to work together. The statement ofprinciple said: "It is agreed that community input7 is imperative andthat all parties will work cooperatively to achieve [their] goal [of im-proving systems, policies, and legislation] within the mutually agreedupon time frame [i.e. by agreeing to the principles underlying guard-ianship legislation by June 1991 and drafting legislation by September1991]" (PRAG and Government of British Columbia 1990). Two re-searchers were seconded from the Attorney General's Office to write aseries of Trigger Papers (i.e., literature reviews, summary of options) topromote discussion among PRAG members (Office of the PublicTrustee 1991).

By fall 1990, PRAG decided to put out a philosophical statement, amission statement, and terms of reference to guide its working pro-cesses because it was necessary to try to coordinate the activities of itsthree task groups on administration, research and education, issues andstrategy (PRAG iggob). They decided on eight guiding principles.8

According to Rob Gordon of PRAG, it was during these group discus-sions that cracks began to appear in the process of working towardsconsensus and "the first firestorm over principles arose." Gordon saidthat there was a push from some individuals (particularly one memberof BCACL) for minimal intervention. The minimalists wanted to set upcircles of support - friends, families, neighbours - instead of formalprocedures. This group felt that the proposed legislation was funda-mentally disempowering and robbed people of their rights and free-doms. It was agreed, however, that abused persons needed protectionof some kind.

By late 1990 it was accepted that the major task for PRAG was to bal-ance interests within itself. In the meantime, the more challengingpresentations had led to a breakdown of barriers between participantsin the discussion sessions. Nervous people began to talk to one


another, not at the professional level as before, but sharing their expe-riences across disability groups. Rob Gordon said, "There was a cross-fostering of dialogue - non-structured - and a development of a recog-nition of what were common problems and an understanding of oneanother's predicaments. This exchange generated cohesion. Thus, theminimalists' agenda had some success."9

Over the 1990 Christmas break, Gordon developed a chart of theprocesses that the discussion groups thought were needed when a vul-nerable person seemed to need adult guardianship. This chart pro-posed several steps and options in an integrated decision-making andguardianship system.10 The chart seemed to act as a catalyst and led tothe development of a draft position paper by PRAG staff. After restat-ing the principles enunciated earlier, it went on to discuss: compe-tency assessments, competency and civil rights, advocacy, futurefinancial planning, protection of vulnerable adults, medical issues, dueprocess, and certification.

In May 1991 PRAG produced a complete draft report, known as theFramework Document, which developed the ideas that had been underdiscussion thus far.11 This was a very rough draft but served to demon-strate that there was agreement in principle on guardianship issues(PRAG 1991). It also led to the next stage, which was for PRAG and theInter-Ministry Committee to consult together on drafting legislation. Insummer 1991, PRAG and the Inter-Ministry Committee agreed to set upa Joint Working Committee to implement these ideas in policies andlegislation. The committee was composed of three government repre-sentatives and three PRAG representatives, plus two secretaries.12

PRAG and the government-appointed members of the committeebegan to work closely together to redefine the content area and to de-cide on the process of reform. Members of the Joint Committee visiteddifferent centres in the Lower Mainland, Victoria, and the rest of theprovince during May and June 1991 using a traditional public-consultation process model.

Several members of the committee have said how their close work-ing relationship seemed to lead to greater trust on both sides and solidsteady progress. By May 1992 they produced a discussion paper: "HowCan 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 publicand government discussion of the ideas (which were built on PRAG'Sframework document), reviewed the comments that were sent in, andmade minor revisions to the paper in September 1992.

By the time the revised version of "How Can We Help?" was re-leased, 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, consistingof Myrna Hall, Gerrit Clements, Rob Gordon, and Claire Riley (SeniorLegislative Counsel, Attorney General's Office). They were obliged towork secretly because that was government policy about drafting legis-lation, although Gordon was able to consult with PRAG members onkey areas of concern and the wording of key provisions, which he didon many occasions.

The attitudes of committee members soon began to change on spe-cific implementation details, however, and by the end of 1992 thegood will period of working together was over. Nonetheless, despitethe differences between some BCACL and PRAG members, the draftingteam moved ahead with its task. It worked extremely hard in order thatfour bills could be brought before the House in the Spring Session of1993. These were the Representation Agreement Act; the Health Care(Consent) and Care Facility (Admission) Act; the Adult GuardianshipAct (which included provisions to deal with reports of Abuse, Neglect,and Self-Neglect); and the Public Guardian and Trustee Act. Therewas an expectation that the legislation would be phased in over thenext two to three years.

At the end of the drafting process, Cabinet reviewed the bills fourtimes and referred them back to PRAG for comment. PRAG set up acommittee of twenty members to review the drafts and suggested anumber of amendments, which were negotiated at the last minute byAl Etmanski and Wendy Baker QC (both advocates for BCACL workingwithin the PRAG framework) with the Attorney General. The PRAGcommittee also raised the question of relationships between the AdultGuardianship legislation and the stalled Mental Health legislation.The government then appeared to retreat in the face of potential pub-lic controversy. For four days it looked as if the entire guardianship ini-tiative was finished, but the government representatives made anumber of compromises that were accepted by the two negotiatorsfrom PRAG. The legislation went through with some of the suggestedamendments in June 1993 (see Appendix to this chapter in Notes).

Grassroots Policy Implementation

Following passage of the legislation, there was a pause before calling atwo-day conference in September 1993 that was facilitated by a consult-ant in adult learning and ethical decision making. The consultant washired by the government to plan discussions dealing with issues of inter-agency cooperation, as the interested parties moved into the implemen-tation stage. The conference facilitator was given a list of 175-180 com-munity representatives who should be invited, while the government


nominated 80 representatives. Although it was promoted as a jointcommunity-government initiative, community and government repre-sentatives met separately on the first day and came together only on thesecond day.

Many participants regarded this conference as a disaster since it wasrun on a radically different model of working together and interruptedthe previously successful process of joint working sessions. Some mem-bers of PRAG who attended the conference expressed hostility to pro-fessionals and bureaucrats who were no longer viewed as the welcomeallies that they had been before the legislation was passed.13 On a moresubstantive level, the community representatives' emphasis in earlierdiscussions had been to avoid use of the last resort (i.e., commitment tothe Public Trustee's services), whenever possible.14 The Public Trustee'sOffice was to be the necessary fall-back option only in the following cir-cumstances: when there were no caring relatives; when estates were toosmall for lawyers or banks to take on; when the person concerned ex-pressed 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 re-form process, wanted consumer-driven implementation of the legisla-tion.15 They thought that there was need for further communitydevelopment to engage the consumers in self-advocacy and, wherepossible, self-directed guardianship. PRAG had recommended in thespring 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 interestwas ready to become involved in the implementation phase, and thecommunity of interest was said to be not yet ready to do so because thiscommunity had yet to be developed. Only certain subgroups of the dis-ability community that were strongly entrenched in their local commu-nities and interested in the legislation were at that point able to speakout for their members. PRAG thought that more local groups of poten-tial users could also be developed if given the time.

The Public Trustee Office had intended, however, to follow theusual pattern of legislative implementation after acts are passed,namely to set up a steering committee to move things along. But theSeptember conference had shown the Public Trustee that PRAG'Smembers were not willing to follow the usual pattern. They were deter-mined to take the idea of community participation further than everbefore. Instead of cooperating with the Office of the Public Trustee(OPT), PRAG made it clear that it was going to follow through on itsown concept of consumer-driven implementation and would not ac-cept the traditional approach. The fact that this new approach to


implementation was also strongly supported personally by the AttorneyGeneral, made things difficult for the OPT bureaucrats, and they wereunable to get a steering committee off the ground.

PRAG was also having its own internal difficulties in maintaining aunited front and remained in place until 31 December 1993 when itdisbanded. Certain members remained interested in the reconstruc-tion of a consumer guardianship group, however. A transitional grouppresented a report on its proposed activities to 145 people who in-cluded persons on the former Transition Committee, the Partnershipand Structure Subcommittees, the Representation Agreements TaskGroup, and the Advocacy Task Group. Following a motion of support,the first formal meeting of the new Coalition to Implement AdultGuardianship Legislation (the Coalition) was held in January 1994.l6

Thus, although the influence of BCACL and PRAG decreased afterthe passing of the Adult Guardianship legislation, a new advocacy or-ganization emerged to press for community-based alternatives to for-mal guardianship structures and to ensure active consumerparticipation in the proposed system of rights protection for BritishColumbia's vulnerable population.17

The new coalition re-examined PRAG'S final goal statement (PRAG1994) and said it now wanted "to create a range of supports and assis-tance for adults who are vulnerable so that every opportunity to useprivate, informal, family and community-based options for supporteddecision-making is exercised ... Only the community can do the workof building this range of support and assistance ... Government has nomandate or ability to provide this support. It is in a potential conflict ofinterest in providing support and assistance of the first resort, becauseit must be a guardian of the last resort." The Coalition saw the govern-ment's principal role in guardianship as administrative - monitoringinstitutions, establishing administration support systems, educatinggovernment front-line workers about the demands of the legislation,and developing court processes.

The Coalition, now led by Christine Gordon, a community develop-ment activist, went directly to the politicians for funding support, ad-dressing its demands to Colin Gabelmann, the new Attorney General,and bypassing the Public Trustee. The Coalition proposed working di-rectly with the Deputy Ministers' Committee, or Inter-MinistryCommittee, rather than with the Joint Working sub-committee. TheCoalition's rationale was that: "Only the community can do the work ofbuilding a continuum of support and assistance because with the newadult guardianship legislation, the Courts will insist that all efforts bemade to provide support and assistance to adults who are vulnerable,before substitute decision making is imposed" (Coalition i994a).l8


Meanwhile, the Public Trustee had to reconsider what steps to takein the light of the Coalition's actions. A number of task forces were ap-pointed. These included members from the OPT and the Coalition, al-though some task forces excluded OPT representatives altogether. TheCoalition took over the total responsibility for discussion of Represen-tation Agreements and Advocacy, while there were joint task forces onDefining Capability; Abuse and Neglect; Health Care Consent andCare Facility Admission; and the Court Ordered Decision MakingPlanning Group. The Coalition took issues regarding Advocacy, Repre-sentation Agreements, and Abuse and Neglect to communities all overthe province for discussion. The other task force groups worked on theproblems in Vancouver.

In July 1994, Myrna Hall, the Public Trustee, resigned citing per-sonal reasons. Subsequently, the rest of the senior staff members of theOffice of the Public Trustee who had been involved with the adultguardianship legislation also handed in their resignations.19 After asix-month gap, a new Public Trustee, Dot Ewen, was appointed, andthe 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 strate-gies for the working groups: to express any findings in plain language;to hire two writers, one from the community and one from govern-ment to develop policy documents; to involve the community in tack-ling abuse and neglect.

The Coalition continued to press its case and in the fall of 1994 re-ported on the work of its task forces to its members. Task forces met inPrince George, Kamloops, White Rock, Vancouver North Shore,Powell River, Victoria, and other centres using participatory action re-search methods. The Coalition claimed to have facilitated thirty-fiveworkshops involving more than 600 people over a ten-month period.21

In 1995, following through on the idea of prescribed advocacy, theCoalition employed a consultant to investigate the prospects for grass-roots participation, rather than using a professional legal cadre to pro-vide this service. The alternative proposal by the Coalition was toprovide an organization consisting primarily of selected and trainedvolunteer community members who would provide counseling on hu-man rights and on issues perceived to be broader than legal issues. Itproposed that access to help should be made available through a tele-phone number to a central office that would call on a local advocatewithin 24 hours. The Coalition argued that this alternative would pro-vide more holistic care through better local knowledge, going beyondlawyers' privileged information, while maintaining client confidential-ity and focusing on social as well as legal matters. The concept was


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 actswere implemented as soon as possible, and a new OPT staff positionwas created to further this goal. Lynda Derkach, who had worked atthe Port Alberni branch of the BCACL and had a daughter with a men-tal disability, was selected for the post of guardianship implementer inApril 1995. She then took steps to set up task forces to include a muchwider range of interests than those of consumers alone.

An overall Implementation Steering Committee, chaired by thePublic Trustee herself, had twelve members, of whom four were bu-reaucrats, one a facility administrator, one a financial expert, one alawyer, and five representatives of consumers. By November 1995 fivecommunity response networks had been set up to work on abuse andneglect issues.

Finally, the OPT appointed two consultants (Rob Gordon and StanRemple) in 1995 to assist in developing its plans for implementation.These consultants consolidated the OPT influence in the implementa-tion process by writing the regulations in support of the legislation,developing a coordinated implementation plan, and setting up an ac-countability framework.

T H E K E Y P L A Y E R S

The specific disability advocacy communities in British Columbia thatbecame interested in adult guardianship legislative reform includedprovincial organizations of persons with intellectual, physical, and psy-chiatric disabilities, as well as the elderly and people suffering from de-generative diseases such as AIDS. But it was the British ColumbiaAssociation for Community Living (BCACL), the major provincial orga-nization for people with intellectual disabilities, that spearheaded theadult guardianship reform process within the disability rights commu-nity. BCACL had taken the lead first in developing PRAG and theneventually in developing the Coalition.

The involvement of BCACL with provincial policy reform for peoplewith intellectual disabilities was not a new initiative. On the contrary,this advocacy organization had been lobbying the government sincethe mid-i 9608 for greater accommodation and participation of peoplewith intellectual disabilities in mainstream institutions. Yet, with re-spect to adult guardianship reform, it became apparent to the leaderof the BCACL that a broader coalition of groups representing thewhole range of vulnerable people would be more effective in forcingthe government into action.

n8 A Seat at the Table

In the late 19805, another key accomplishment by BCACL in relationto adult guardianship policy was to establish a network of elderly par-ents of people with intellectual disabilities (Planned Lifetime AdvocacyNetwork - PLAN) to create and deliver personal support services totheir children. The motivation was to create community-based serviceoptions for people with intellectual disabilities so that state bureaucra-cies would not become de facto decision makers for them and therebyincrease their vulnerability.

In 1989, when the British Columbia government appointed a newpublic trustee and informed the citizens of the province that it was in-terested in reforming adult guardianship legislation, BCACL and PLANwere poised to assume leadership roles in this policy area through thePRAG vehicle. The PRAG Guardianship Committee brought together asmall number of people with a particular interest in the matter. They in-cluded Jim Pozer, Executive Director of the Community LegalAssistance Society; Rob Gordon, a professor in criminology; PearlMackenzie, a representative from the North Shore Seniors Associationwho was specially concerned with elder abuse and neglect; and othersfrom voluntary organizations who had been working with vulnerablepeople. Marguerite Ford, Executive Director of the AlzheimerAssociation, expressed support but was already appointed to a concur-rent provincial inquiry into health services and had to give that priority.Don McDougall, a law professor who had been giving a course on theLaw and Aging, also gave it his support. One of his researchers, BarbaraLindsay, became the first employee of PRAG in the fall of 1989.

The Law Society and the Notary Foundation provided funding topermit PRAG'S work to proceed. The Community Legal AssistanceSociety offered office space and BCACL agreed to administer thefunds. Another staff member of the Society, Chloe Lapp, a project di-rector with previous experience in managing voluntary services, wasappointed coordinator of PRAG in May 1990.

PRAG was developed without any formal structure, but there was anad hoc committee of seven and a core group of about twenty people. Itstarted as an almost completely Vancouver-centred group, but interestin PRAG and the guardianship issue gradually spread out across theprovince. As the attendance fluctuated at every meeting, it was quitedifficult to work steadily towards consensus. Similarly, the lack of struc-ture made it difficult for the chairpersons of the three discussiongroups on administration, research and education, and issues andstrategy to know how to focus their discussions.

The composition of the Coalition, which eventually took over the re-sponsibility for developing an implementation policy, was different inmany respects from that of PRAG. PRAG had claimed to be an


unstructured group of individuals working towards consensus, andmost members had been professionals or managers of voluntary agen-cies. Now that the Coalition asserted that it was past the legislative de-velopment phase, new members with other useful connections (e.g.,Margaret Birrell, Executive Director of the British Columbia Coalitionof People with Disabilities; Don Beddows, Treasurer of the Council ofSenior Citizens' Organizations [cosco]; Patricia Fulton representingthe Seniors' Resources and Research Centre of British Columbia) be-gan to work with the Coalition.

Later, Christine Gordon said: "Our community coalition includes allof the individuals who may be subject to guardianship legislation, theirsupporters, and any other individuals or organizations who endorsethe guiding principles and purposes of the coalition ... The commu-nity office will organize and coordinate a cross-sectoral, cross-disabilityprovisional coalition of individuals, groups, and organizations in orderto achieve the community mission during the implementation of adultguardianship legislation, to ensure representation of minority mem-bers in policy making that evolves from the community mission"(Gordon 1994).

The rules about membership in the new Coalition were set out asfollows:

• membership was for groups only (including charities, not-for-profitorganizations and support groups, or groups of individuals whocame together for a stated purpose);

• member organizations must endorse the mission statement andprinciples of the Coalition;

• more than one representative of a group can attend meetings buteach 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 shouldmake a partnership with government. They questioned whether it was"automatically good to sit down as community members at policy com-mittees or advisory committees with government" (Coalition 1994^).22

R E D E F I N I N G P A R T N E R S H I P S

A N D O B J E C T I V E S

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


any individuals who might be interested in the topic. Meetings were heldalmost every evening in the Community Legal Assistance Society pre-mises in Vancouver. Up to twenty people might attend one meeting butthe attendance fluctuated. It was said that 3,000 individuals from 350 or-ganizations attended at one time or another (Doherty igg3).23

During the first stage in the process of revising the Adult Guardian-ship legislation, the main concern of those with mental illness was theconcurrent proposal to revise the Mental Health Act (in light of thechange in Human Rights legislation). A committee set up to study thematter could not reach agreement on compulsory treatment versuschoice for persons with mental illness, and eventually the MentalHealth committee was disbanded and the reforms were abandoned.

The divisions in the Guardianship Committee had grown greater asdiscussions went on. Psychiatrists and family members wanted to ensuretreatment of persons with mental illnesses. "Psychiatric survivors"claimed that professional control of treatment was in breach of a per-son's human rights. "Libertarians" wanted to allow patients to choosewhether or not to accept treatment even when they were compulsorilycommitted to a mental hospital. These divisions over the Mental HealthAct Review took up most of the energy of the mental health advocates.

In the early stages of the Adult Guardianship reform process, few se-niors came to the discussions on legislative change, but in 1995 theybegan to take more interest. One reason for the early lack of interestin guardianship might be that seniors' groups were in competitionwith one another for money to carry on their activities.*4 This moneywas not available in lavish amounts so seniors' leaders got caught up inthinking about small financial matters relating to the survival of theirassociations rather than looking at the broader picture of seniors'needs. Another view is that seniors did not wish to look at the pros-pects of becoming demented or to think about the possibilities ofabuse and neglect by their families when they became frail with age. Fi-nally, the Alzheimer Association, which perhaps might have been ex-pected to act as an advocate for the elderly, underwent a change ofmanagement soon after the proposals for reform were introduced andhanded over the responsibility for guardianship issues to a volunteer.

At the end of 1992, the contracts of the first two PRAG employeesran out and the core group decided that they should not be renewed.The core group decided instead to appoint Christine Gordon, who wasexperienced in community development, as a staff member. It was an-ticipated that she could take the organization forward into the imple-mentation stage when the legislation was passed in the summer of1993. However, soon after Christine Gordon was appointed, PRAG be-gan to change its objectives.


During the drafting period (January-June 1993), PRAG had re-ceived reports from five of its policy groups on: personal support net-works; abuse, neglect and self-neglect; capacity and needs review;health care consent; and the role of the Office of the Public Guardianand Trustee. These reports formed the basis for the document "Pro-posals for Implementation" (PRAG 1993).25 As well as making propos-als on the development of content areas, this document, significantly,dealt also with process. The report said that the PRAG volunteers whohad worked on the project until then had been pushed to their limit,and that new representatives would have to be recruited from outsidethe core group: "Some of the policy group representatives have ex-pressed frustration with the structure within which they have had towork. People who are used to working in community contexts are ori-ented to action. The conceptual and analytical nature of the policygroups has not enabled them to work from their strengths ... The pol-icy groups will be putting forward recommendations for implementa-tion that involve some degree of testing of the ideas that have beendeveloped".

The document went on to say that the PRAG Guardianship Commit-tee wanted to reassert its independence of the Office of the PublicGuardian and Trustee: "It might be wise to consider some alternativesto [setting up a] Steering Committee as a vehicle for coordinating thefield testing of the services that would largely be a community respon-sibility" (PRAG 1993). Proposals were put forward for selecting com-munities to test out the new legislation using strong communitydevelopment principles.26

There is no doubt that there were ideological differences withinPRAG, but strong personalities also seem to have been involved inpushing ideas forward. Al Etmanski, the head of BCACL, has publishedhis reflections on this period. He writes that it was agreed that "it wasfar better for the community to develop consensus on the potentiallydivisive issues than to let the government attempt to do it, [and] it wasclear that change could only occur within a broad based coalition. Noindividual organization or sector had sufficient strength to lobby forgovernment change on its own" (Etmanski 1992).

There are a number of unanswered questions regarding the changesin PRAG and its objectives. Al Etmanski was definitely at the centre ofthe shift. Was the new uneasiness within PRAG related to a redefinitionof his relationships with other BCACL members? Was there a change inrelationship between him and Rob Gordon? It is clear that Etmanskithought that Gordon should not have joined the government team asa paid drafter of legislation. In a subsequent publication Etmanski(1994) wrote:


It was disappointing but perhaps inevitable that the amicable relationship thathad characterized the first stage of our relationship with government staff didnot last. Budget, policy, philosophy and even personal considerations seemedto bear no resemblance to the community's recommendations. Disagreementsover interpretation occurred often, tempers flared. Patience often left theroom. We were informed that government lawyers disagreed with this recom-mendation, that budget considerations prevented that one from goingthrough, that this point was not practical, that point or the other one too sim-ple. Sometimes we were accused of being too demanding or motivated by per-sonal considerations ... Most of our difficulties were dealt with honestly and ina straightforward manner. In retrospect, however, those issues infected thehealth of our coalition. One of our most talented and able members was re-cruited by government and paid to work on related matters while at the sametime retaining membership in the Coalition [i.e., Rob Gordon in his draftingrole]. I am personally convinced that this posed a serious and unjustifiablecontradiction. As well, the views of consumers of mental health services oftenconflicted with those of family members. Consequently, there was no consen-sus on some key mental health issues. Unfortunately not all members of theCoalition respected the open process we had established ... [some] phoned orwrote to the Minister to oppose the Coalition (Etmanski 1992, 11).

By 1994 many of those who had been involved in the PRAG discus-sions felt that they had done their bit. It was nearly four years since theprocess of working towards reform had started, and some were verytired. The more active members had chaired task force groups orserved on the Joint Working Committee. Many had put in a lot of timeattending the first stage discussions in which there had been an initialsearch for consensus building.

In reviewing these outcomes, one interviewee said, "Myrna [Hall,Public Trustee] was squeezed and her expectations violated. Therewere proposals from the floor to redefine partnerships of communityand government." The earlier cooperation and trust had vanished.Both parties involved with the legislative agreements now had to stepback and rethink their positions.

F R O M C O L L A B O R A T I O N T O C O N T R O L

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


lation having been passed, there was a transition during which the con-sumers' advocates demanded that they should make the arrangementsfor policy implementation. Many of the professionals and bureaucratswho 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 subjectivesecond stage.

By the time the legislation was passed, Al Etmanski and ChristineGordon were ready to take forward the issue of implementation of leg-islation as a challenge to the bureaucrats and professionals. To whatextent was citizen participation to be possible in British Columbia?They recruited new supporters from other community organizationsto make their case for citizen participation in drafting the guidelineson implementation and appeared to push the concerned caregivers toone side. They began to educate families and communities on the ne-cessity for forward planning to support those persons at risk.

It is clear that the Coalition won its battle and established the con-cept of consumer-driven (or perhaps advocate-driven) adult guardian-ship services. The Coalition went beyond making claims for individualhuman rights and sought powers of policy implementation driven byconsumers. It took the discussion out to non-institutional groups inthe community and fed information back into power structures, eitherbypassing structures that were not helpful or forcing them to recog-nize the pressures for change.

It is interesting to see the extent to which the idea of citizen partici-pation was taken in British Columbia. The Coalition's thrust at theimplementation stage was to develop "circles of friends," to providesupport to those in need, and to exclude, or at least limit, the extentto which bureaucrats and professionals would be able to intervene infamily and community affairs. The contrast with a similar coalitionworking on advocacy in Ontario is striking and ultimately reflects theinfluence of senior bureaucrats and ministers in allowing consumerinitiatives.27

8 Themes in DisabilityPolicy Participation

The preceding four cases provide rich descriptions of the policy-making process from the perspectives of representatives of Canadiandisability organizations. Each case makes certain points and offers cer-tain lessons about the changing political environment and the oftentenuous relationship between disability organizations and state actors.However, the experiences of these cases, which describe negotiationson issues of importance to persons with disabilities at different times,in different places, and with different actors, suggest that they containcommon elements that invite examination and analysis.

Our approach has been to look at the participation of disability or-ganizations from a structural perspective. This approach identifies thepolitical-legal-economic, social-cultural, and organizational dimen-sions that affect the process of citizen participation. Although the per-sonal and interactional perspectives of individuals are also importantin understanding how participation develops, we believe that at leastsome of the structural dimensions of participation - particularly theorganizational aspects that might be modified independently by dis-ability organizations - are key in the policy environment.

The purpose of this chapter is to compare the cases we have de-scribed in order to distil and better understand the potential forstrong citizen participation in disability policy making. Elements ofsocial movement theory, such as autonomy, culture, and resource mo-bilization are useful tools in this comparison.

A study of the participation of poor women, street youth, and per-sons 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 affectthe process of citizen participation either positively or negatively. Thisstudy found that citizen participation can be fundamentally influencedby factors at the organizational level such as agency reputations and re-sponsibilities, available financial and coalition-based resources, and or-ganizational roles. These themes were also common to our cases, andwe use them in this study to analyse the experience of Canadian dis-ability organizations in policy participation.

R E P U T A T I O N S A N D R E S P O N S I B I L I T I E S

O F D I S A B I L I T Y O R G A N I Z A T I O N S

The ideological, or philosophical, positions of community organiza-tions can give them a "moral reputation" that both attracts participantsand allows them access to the policy table. For example, organizationsthat develop reputations as proponents of disability rights may be ableto mobilize significant consumer interest on the basis of this position.Organizations that have an advocacy responsibility in contrast to a ser-vice responsibility (more often seen as a governmental concern) areoften considered by bureaucrats to have a certain legitimacy for partic-ipation in the policy process. Let us look more carefully at these ideo-logical elements.

Attitudes towards the Participation of People with Disabilities

An important measure of the disability organizations in these cases istheir perspective on the participation of people with disabilities. Whatare their attitudes to the participation of people with disabilities bothin the organization itself and in society as a whole? We suggest thatviews about the participation of people with disabilities in communityorganizations reflect broader views about their participation in society.

Some groups, such as People First, for example, view people withdisabilities as consumers and strive for majority representation by peo-ple with disabilities in all aspects of their operation. Other groups viewpeople with disabilities as clients; such groups speak on behalf of, andin support of, people with disabilities. Examples of groups of this typeare organizations made up of family members, such as the OntarioFriends of Schizophrenics or the Alzheimer Association of Ontario, orthose made up of professionals, such as the Canadian RehabilitationCouncil for the Disabled (CRCD). The main factor underlying theirdifferences in perspective is the extent to which members of suchgroups consider people with disabilities to be self-determining. Ac-cording to one activist, the CNIB and the CHS (Canadian Hearing


Society) are examples of the two ends of this spectrum: "Look at theCNIB and their model, and the CHS and their model, because theyhave very different philosophies. The CHS philosophy is empowermentof clients, giving information, training for advocacy, getting involved inthe political approach. [The] CNIB is quite different... it's more aboutmaking decisions for people."1

Thus, in spite of the leeway given to individual agents of the CNIB, ex-emplified by the empowerment of David Lepofsky during the patriationof the Constitution, the CNIB did not actively promote broad client in-volvement in policy making. On the other hand, self-determination isthe cornerstone of the Independent Living Movement's view of peoplewith disabilities. As one representative asserted: "We like taking care ofourselves, with authority, decision-making, and risk-taking. We'll let youknow when we need you." This approach obviously has the potential toalienate some potential able-bodied supporters: "That notion was a bigchallenge, and it upset people who were very genuine. To this day, it stilltroubles many excellent, dedicated caregivers who feel that they shouldbe responsible [for people with disabilities]." Other principles of theIndependent Living philosophy that signal their view that people withdisabilities should be self-determining include the promotion of self-help strategies, resistance to professional over-involvement, and provi-sion of equitable access to resources and training.

A number of the interviewees referred to a change in the attitude oftheir own organization towards people with disabilities at approxi-mately the same time as the federal and provincial policy initiatives inthe cases under study occurred. In fact, some saw participation in thepolicy process as the catalyst that stimulated their organization to re-think its own view of people with disabilities: "I think their shift tookplace during the committee hearings. I think that the changes and themodernization took place during the hearings because these billsbrought on a level of reality and possibility that didn't really exist be-fore." Several interviewees also placed a perceived change in attitudein the broader context of change associated with the disability socialmovement over the past few decades: "You can't forget there was theemergence of this whole new thing called the consumer movement inCanada at this time." Finally, interviewees talked about the emergingsense of political power in the disability community, which galvanizedsome of the policy initiatives we have been speaking about: "We car-ried a big stick! I think that it instilled amongst the local disabled per-sons a sense that there is somebody there, some group out there, thatcan actually do something."

From the literature, Drake (1992) notes that a common history ofstruggle will mobilize a group but that this mobilization can be difficult


to institutionalize and sustain, especially if the group has low internalcohesion. Wallerstein (1992) andWoelk (1992) suggest that marginal-ized groups are both actively excluded and internally fragmented to theextent of being unable to organize. As a consequence, disadvantagedpersons may develop a worldview that open participation with non-marginalized persons will not be productive for their survival. This viewmay explain the tendency of disability groups to focus exclusively eitheron people with physical disabilities or on those with mental disabilities.A combined group may not have sufficient internal cohesion, and alsomay cause conflict to surface between self-representation by those withphysical disabilities, and representation on behalf of those with mentaldisabilities by able advocates. In light of the varied experiences of orga-nizational sustainability in our cases, an interesting proposition for fur-ther study arises. To what extent do the stability and cohesion of adisability group affect its members' participation in social movements?

Service or Advocacy ?

The overall purpose of an advocacy organization is often established inits origin; organizations advocating for people with disabilities are noexception. As we have pointed out in chapter 2, many of these organi-zations have short histories. One of the oldest organizations in Canadafor people with disabilities, the Winnipeg League for the Hard ofHearing (WLHH), was founded in 1925, while others, such as theBlind Organization Offering Self-help Tactics (BOOST) and PeopleUnited for Self-Help (PUSH), were founded as recently as the mid-19705 to early igSos, during what Driedger (1989) refers to as thefifth civil rights movement.

Groups founded in the early years of this century, of which theUnited Handicapped Groups of Ontario (UHGO), the CanadianParaplegic Association (CPA), and the Canadian National Institute forthe Blind (CNIB) are examples, were begun primarily for the purposeof providing service to their members. These groups focused internallyon their membership with the aim of fulfilling the needs of their indi-vidual constituents: "WLHH was for people who were hard of hearing,and decided to get together for social or recreational purposes, to sup-port each other in their desire to have better hearing aids, to educatethe public about hearing loss, and to do good works, you know, pro-vide a scholarship for a hard-of-hearing student ... That's quite differ-ent from an organization that sees a social problem and sets out tostrategically influence public policy."

The other main purpose of groups representing people with disabil-ities is advocacy. Advocacy groups tend to focus on their constituents as


a collective rather than as individuals, and address a range of concerns.Our interviewees referred to five fundamental issues for groups advo-cating for people with disabilities: housing, education, employment,transportation, and human rights. These core issues mobilized andgalvanized the membership of organizations at different times in theirhistories: "We were founded because there were no services availablein transportation, housing, education, and employment. We're stilldealing with 50 per cent unemployment of the disabled, and we havelimited housing options and limited access across the country. We havelots of education, but it was slow ... province by province, town bytown, school board by school board. It's a never-ending battle."

Advocacy appears to have taken several forms among the organiza-tions represented in our study. Some advocacy groups founded withinthe last twenty years had from the outset a single mission: to achieve aspecific policy change. For example, "Concerned Friends [ofSchizophrenics] was started to deal with abuse in nursing homes andseniors' residences."

Still other organizations focused their advocacy activities on morephilosophical, abstract issues, with the purpose of creating an environ-ment or climate that was inclusive towards people with disabilities.Such an environment would ensure that people with disabilities wereconsulted on policy issues, that their needs were considered, and thattheir rights were upheld: "It was just a natural flow for people with dis-abilities to extend their human rights lobby to the idea of constitu-tional protection ... The idea of constitutional protection was veryinvigorating. That was something that people could really get onboard and think about. It really preoccupied most of our businessmeetings at the time."

One of our interviewees, however, identified an internal debatewithin disability organizations. In his view, the more abstract policy is-sues faced by disability groups sometimes derailed organizations fromtheir more practical missions, which were to advocate for the availabil-ity of services: "I think as the consumer movement evolved ... we got sotied up in philosophical discussions and debates that we forgot why wewere founded. We were founded because there was no service availablein transportation, housing, education, or employment."

Service and advocacy responsibilities were not strictly defined di-chotomies that could be easily separated. They represented a contin-uum and thus allowed the possibility of change. Some of theorganizations represented in our sample experienced transitions ofpurpose from service provision to advocacy. The United HandicappedGroups of Ontario (UHGO), for example, primarily a service organ-ization, 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 annualgeneral meeting [of UHGO] ... with a proposal to change their consti-tution, and it lost by about three votes. There were tears in people'seyes. I recall quite clearly that the activists, who had struggled so hardto transform that existing organization into a more active one, werebitterly disappointed. It was after that [meeting] that they decided toform a whole new organization [PUSH] and apply for membership inCOPOH." UHGO subsequently disbanded.

Another participant described a similar transition in which a groupof younger members who were disillusioned with the focus of an exist-ing organization established a new group: "BOOST is a self-help con-sumer group formed in the seventies, because you will rarely meet ablind person who is not unhappy with the services of the CNIB. BOOSTwas organized by three or four bright, articulate, young blind peopleas an advocacy group, initially targeted at getting dramatic reforms inthe CNIB."

An advocacy purpose can be achieved in different ways (Neufeld1991). Some disability organizations become directly involved in advo-cacy on specific issues. Other organizations fulfil their advocacy mis-sion by supporting the self-help initiatives of their members. Theythrow the strength of their reputation and credibility behind memberswho try to help -themselves: "They knew people were hurting, theyknew what they needed, and they knew what kind of support theyneeded to make their voices heard."

One interviewee expressed a strong preference for the latter, indi-rect approach: "If there is to be strong community development [inthe disabled community], then our organization can't replace thecommunity. The risk would be [that] if we took positions on things, itwould be in place of the community, so we have to be extraordinarilycareful not to play that role."

The gradual transition of Canadian disability organizations towardsan advocacy focus is consistent with findings in other community devel-opment settings (Jackson et al. 1989). The literature suggests that advo-cacy organizations can often be distinguished according to theirobjectives. Some organizations have goals and objectives that advocatefor the status quo. Their members tend to be placid, and their organiza-tional structure tends to be formal, with little involvement of membersin leadership roles. Advocacy organizations that have more radical,change-oriented goals and programs tend to have more ideologicallyoriented members, and their organizational structures are more infor-mal and fluid. Members in such organizations have access to a variety ofpositions, roles, and activities (Sills 1968; Knoke 1990). There was someevidence from our cases that advocacy goals fostered an informal


organizational style that gradually became more structured after theearly days of involvement in Constitutional reforms. More recently, how-ever, disability coaliti6ns in Ontario and British Columbia have beenfluid, although this fluidity has not necessarily provided effective results.

Our case studies, which focused specifically on advocacy, yieldedmixed data on the degree of individual member participation. Someorganizations had significant member involvement, while others hadonly a few committed members. It has, however, been reported else-where (Wandersman, 1981) that the number of participants in com-munity organizations increases when organization goals are selectedby community members rather than by staff, or when goals are at leastmutually set. Wandersman also noted that the grassroots members inadvocacy organizations who do not have strong ties or responsibilities,generally have much less effect on the instrumental goals of these or-ganizations than do elite members who hold office.

There are a number of possible explanations for low grassroots par-ticipation in some of the disability organizations. An absence of con-crete tasks and outcomes in advocacy work may explain the inactivityof community members (Sills 1968). Godbout (1981) has also notedthat consumers are more interested in goals related to improving localconditions than in goals related to technical innovations, which mayappeal to service agencies. Consumers are also less interested in trans-forming relationships between negotiating parties, a goal that may ap-peal to advocacy group leaders.

Another issue of concern is the extent to which disability advocacy or-ganizations can sustain active member participation. We will discuss thiskey aspect of the policy-making process in Canada in the next chapter.

R E S O U R C E S F O R P O L I C Y P A R T I C I P A T I O N

A resource mobilization perspective demonstrates that material andhuman resources are elements that are indispensable for supportingthe advocacy mission of an organization. In addition, organizationalrelationships such as coalitions formed through active or passive link-ages with other agencies are important resources. Coalitions have in-creased in number and effectiveness as communication capabilitieshave developed in the disability movement.

Resource Mobilization

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


needed funding in order to get organized. Without resources, peoplewith disabilities simply cannot get together."

A crucial issue for many groups was the lack of resources to mountan ambitious coordinated lobby. Funding was often scarce to non-existent, and many initiatives depended on the ability and willingnessof a small number of people. This is particularly well illustrated by anamusing story about individual initiative: "I got a call at 7:00 onemorning, and it's Don Harron from 'Morningside' saying 'We want tohave you on our show today', so I said 'Sure'. But they said aboutseventy-five times, 'Please get a coffee'. So I went downstairs to thekitchen, make a coffee, go back upstairs and phone them back. So I'msitting on my bed in my pajamas, drinking a coffee and being inter-viewed on national radio by Don Harron! It was surreal!"

Financial resources also allow organizations to have paid staff: "Wehave to have some kind of resource base to operate on. There's still toomuch poverty in our constituencies to be able to get along without exter-nal help. We won't be able to represent ourselves. We have to haveskilled staff. We have to be able to pay for telephone calls and flying peo-ple to Ottawa. Without it, we won't be able to operate in that arena."

Sources of revenue were varied. Some organizations received gov-ernment financial support, about which there was some controversy:"Some of our member organizations used to accept money from theprovincial governments. But the federal money that we negotiated forthem gave them a great deal of liberty to challenge provincial policyand provincial legislation." Advocacy funding was thus occasionally ac-cepted from one level of government and applied against anotherlevel. This strategy obviously implied risks for the organization, as wellas for cooperation between different levels of government.

Other organizations charged dues to their members although theirmembers' poverty often severely limited their ability to raise resourcesin this way. Others raised funds through private donations when gov-ernment funding decreased: "When the government turned their bud-get back, hoping they would die out, in fact the reverse happened.They found resources from community groups, from labour, from thechurches. Their staff grew, their budget grew and they became morepowerful."

In some cases, organizations collaborated by sharing their resources.Organizations of professionals, in particular, were more resource-richand could provide support to consumer organizations. This type of de-pendent collaboration had potentially negative implications for powersharing, however: "Very few of us had the horsepower that the govern-ment had, so you just needed to share expertise. Groups like the OMAdid the secretarial work. The College of Nurses, the College of


Physicians, and the Ontario Hospital Association all had large resourcebases, but in terms of input, we were on equal footing."

At the organizational level, it is self-evident that community agenciesutilize financial resources to facilitate participation in advocacy throughexpenditures on staffing, rent, and meeting costs (Butterfoss et al.1993). Phillips (1992) noted, however, that, funding to special interestgroups in the Canadian social sector decreased dramatically beginningwith the 1989 federal budget. Limitations on agency funding have beenshown to affect citizen participation levels adversely (Van Til 1984). Inaddition, funding conditions and short-term grants create organiza-tional uncertainty, diversion of purpose, more frequent staff turnover,and increasing bureaucratization, all of which negatively affect advo-cacy (Ng 1990, Shragge 1990). The state may also take advantage of or-ganizations' dependency on financial resources to control strategies foradvocacy by funding only compliant local agencies, or by co-opting non-compliant individuals with offers of employment or state appointments(Loney 1977, Pal 1993). Both provincial cases discussed here providedexamples of this exercise of state control.

The effects of inadequate resources on citizen participation havebeen reported recently in health-promotion projects (Farrant 1991,Boyce in press) and in community-care planning for people with dis-abilities (Bewley and Glendwinning 1994, Boyce 1999). In these situa-tions, the goal of citizen participation is relegated to a back burner.Organizations respond to the challenges of limited resources withthree strategies that have both positive and negative repercussions oncitizen participation in policy making:

• the efficiency response (co-funding, using private resources, staff cut-backs, collaborative ventures with allies), which leads to a reducedemphasis on advocacy as time is spent on more "profitable" activi-ties;

• the co-optation response (altering the advocacy focus to match thecurrent political agenda and/or the inclusion of currently populargroups), which leads to expansion of the organizationally networkand occasional new linkages between citizen groups;

• the empowerment response (lobbying with allies for increased sharesof social programs), which leads to increased organization-to-organization contact but reduced contact with grassroots commu-nity members.

An era of financial restraint in government spending may spell thedemise of consumer-based disability organizations since little fundingis available for the organizational or personal support that they need


for full participation. This demise may presage a return to a service ori-entation in public policy. Such an orientation may lead to greater in-vestment in professionals, who become resources to those in need,than in programs that improve the conditions and capabilities of per-sons with disabilities directly. It is also possible that disability groupsmay be left to fend for themselves.

Overall, we observed that an uncertain economic environment de-creases citizen participation in two ways. First, sponsors may diverttheir attention to resource mobilization activities rather than support-ing the activities that are necessary to promote citizen participation.Second, lack of resources may create organizational instability andmake staff positions insecure, thereby decreasing staff effectiveness inrecruiting members. Both of these mechanisms are consistent with ex-isting literature on resource requirements in community organizations(Ng 1990, Shragge 1990).

Resource mobilization theory (McCarthy and Zald 1987) and newsocial movement theories (Scott 1990) predict that the effects of re-source availability on citizen participation are co-determined by otherstructural factors such as program mandate, leadership, and programlinkages.

Linkages With Other Policy Actors

One category of resource links in the policy process, and an essentialone, was contact within government. Our interviewees discussed linkswith government in three categories: with politicians (or elected offi-cials), bureaucrats, and committees. They found that in all three cate-gories, attention to jurisdiction was essential. Contacts needed to becultivated and sustained at all levels, particularly federal and provin-cial, according to the issue at hand.

Links with politicians included contacts with high-profile officials re-sponsible for certain portfolios, with provincial premiers and cabinetministers, and with local MPS and MPPS. One example involved theCharter case: "The coalition met with the Premier and the LabourMinister, and got them to agree to a proposed amendment and to fur-ther meetings with us to discuss it."

Another interviewee reported on negotiations over the CanadaClause: "We had meetings with Joe Clark when he was Minister forConstitutional Affairs and Kim Campbell when she was JusticeMinister ... All of our members were encouraged to go to their MP, andget 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 mostdirect possible influence on the policy process. Individuals with disabil-


ities and their groups sought to reframe issues in the minds of politi-cians, to provide elected officials with information about the disabilitycommunity, to raise the profile of disability issues in discussions in theHouse and in legislative committees, to alert politicians to potentialconsequences if people with disabilities were disadvantaged by policy,and to directly influence the way politicians would vote when legisla-tion was presented.

Our interviewees also considered relationships with bureaucrats tobe essential to successful policy participation: "The politicians moveon, but the bureaucrats are always there, so we used the bureaucracy alot". The main purpose of links with bureaucrats seemed to be the ex-change of information. By providing information to the relevant min-istry staff, disability advocates attempted to ensure that the right pointwas made at the right time in any proceedings that were not open tothe public. Bureaucratic connections had the potential to influence in-ternal governmental discussions on the disability perspective. In addi-tion, by knowing who in government was working on particular aspectsof policy, non-confidential information, which might otherwise not be-come public, could be obtained in a timely fashion: "We have a coupleof people who have worked in different ministries who have disabilitiesthemselves and who are interested in being our inside people. Theycan get us into a lot of places that we couldn't get otherwise."

Another important channel for influence within government is in-volvement on committees, which are the venue for a good deal of thework of policy development and review. Participation on relevant gov-ernment committees is a way of getting directly into the mainstream ofthe policy process and being heard by a broad range of influential peo-ple 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 back-benchers and ministers that I can talk to them or their staff immedi-ately. So I know them and I know the process. I know what they want tohear, and what you strategically have to say."

Partnerships with individual professionals, professional groups, andconsultants were also described. Professional groups were sought forpartnership because of their power, their resources, and their legiti-macy: "We have a government that listens to doctors. It's been reallyclear on a number of initiatives that the OMA has an awful lot of influ-ence on the premier, and this thing was eventually going to end up inhis office."

Consultants were engaged for numerous purposes, mostly to givepolitical 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


formal basis and others were approached informally for their profes-sional expertise: "This one law professor at Harvard, who was a Cana-dian, was a kind of helpful pal, and I talked to him several times."

Members of the media are also valuable contacts in the policy pro-cess. Disability organizations have used the media effectively in a num-ber of policy initiatives to gain public attention for their position on anissue. Media coverage can be an incredibly effective and efficient wayto disseminate a message: "There were seventy headlines in newspa-pers across the country and live coverage by two networks when I didthe announcement. So they picked it up and it went right across thecountry." The media can also be successful in enlisting public sympa-thy, by putting a human face on issues: "You try and use the media tobring in people who are really affected to say 'Here is a real-life situa-tion, and here is what it means to me.' " Finally, the media can also beused as a form of leverage to keep politicians honest: "We also had thecapacity to obtain press coverage, so our strategy with the governmentwas 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 influ-ence the policy process? What did they hope to achieve in these part-nerships? Some of the most interesting partnerships were thoseinvolving other groups of people with disabilities. These partnershipsdiffer in terms of form and tactics.

Partnerships took one of three forms: ad hoc coalitions, permanentcoalitions, or networks. Ad hoc coalitions are purpose-specific, time-limited affiliations of people or groups with a single issue in common.A good example is the Coalition for Human Rights for the Handi-capped which formed in Ontario in 1979: "We got some eighty-fivegroups for and of people with disabilities to rally and fairly quicklyform a coalition on the human rights side." The main functions of adhoc coalitions of this type are to rally support, raise numbers, and gainpolitical attention.

Another type of ad hoc coalition was partnership with other groupsof able-bodied individuals. In such cases, disability-focused groupspartnered with women's groups, anti-poverty groups, seniors' groups,gay and lesbian rights groups, and other groups who felt similarly mar-ginalized or disadvantaged on a specific issue, in order to present aunited front: "Seniors have always been a part of our coalition. For thelast few years at least, there has always been a co-chair from the seniorscommunity and one from the disability community."


The main effect of multi-sectoral coalitions seems to have been to in-crease numbers of supporters, and to impress policy makers with thebreadth of support for a position. Interviewees also reported that theybenefited from the information networks of other organizations out-side of the disability network: "NAC (National Action Committee onthe Status of Women) had members at the first meeting inCharlottetown, and they saw the first draft of the Canada Clause. Theycalled us and said, 'You're not in there. What do you want to do aboutit, and we'll support you as much as we can.' "

The second form of partnership between disability groups wasthrough permanent coalitions. Permanent coalitions form when anumber of groups recognize a broad area of shared concern, and anon-going need to coordinate activities and act in concert on various is-sues. The Council of Canadians with Disabilities (CCD), formerly theCoalition of Provincial Organizations of the Handicapped (COPOH), isan example of a permanent coalition that has been influential in pol-icy since it was founded: "We are a membership organization repre-senting advocacy groups from each province that adhered to theprinciples 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 spe-cific issues, and raising numbers and profile. They have the additionalpurpose of building solidarity within a social movement and generat-ing a sense of legitimacy and permanence. Furthermore, permanentcoalitions provide the opportunity to build sustainable and depend-able links and partnerships. The CCD president notes: "Our nationalcoordinator has been with us eleven years now and he knows almost ev-eryone in Ottawa. He can pick up the phone and, if he doesn't knowwho to talk to, he can find out."

The third kind of partnership among people with disabilities de-scribed in our cases was what we have called a "communication net-work," a loose affiliation of individuals or groups with no formalstructure, but with a tacit agreement to keep one another informed ondevelopments of shared interest. "We did send out stuff to them andthey sent stuff to us. Various national organizations were receiving ourinformation, but we were also receiving feedback from them as to whattheir stand was, so we could support them ... Often what we'll do is notformally 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 organizationswithin each type of partnership were similar, their tactics for achievingspecific goals differed widely. At one end of the spectrum were groupswho 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 in-gredient, and I think [the premier] understood our intention at a ratio-nal 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 govern-ment ... We had a history of being a consultative body, particularly withrespect to some federal departments. So we had access in Ottawa."

At the other end of the spectrum were groups that believed in, or ac-knowledged, a need to create a certain amount of tension in order toaccomplish their ends: "There were those who felt that organizationscould be too collaborative. There were those who felt that public dem-onstrations and rallies on the Hill were the way to go."

This does not mean that an organization cannot change its tacticsover time. Indeed, a number of our interviewees commented onchanges in tactics: "Organizations change from activist to non-activist,or from non-activist to activist. They move in both directions, and ithas something to do with the people that are in it, and the causes thatanimate the organization."

The move from collaborative to confrontational tactics may be seenas a process of radicalization: "I have seen people who make politespeeches and write letters finally become so frustrated that they arewilling to take an activist stance ... I think in general, activism is predi-cated 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 avail-able and can be harnessed. The absence of these [is] like a disease inan activist organization."

Movement in the opposite direction, from confrontation to co-operation, may be thought of as co-optation. One interviewee describedthe effect of co-optation. "We started to slide into the abyss of back-room meetings and philosophical discussions. We became almost to-tally co-opted by the bureaucracies in Ottawa." Another observed:"There were no boundaries between the [NDP] bureaucracy and theAdvocacy Coalition, and to me, that indicates a fundamental lack ofunderstanding of what advocacy is."

Another participant saw co-optation as part of a common develop-mental process that happens to interest groups and referred to theoryon interest group development: "We went through a period wheresome people dropped out because they felt we were too friendly withgovernment and with the commission, and we weren't sufficiently ef-fective. But you know the history of organizations - forming, storming,norming, and conforming. We have had our stormy period, and thingsare kind of dull right now."

Lest the picture we have painted of partnerships in the disability pol-icy process appear too rosy, we must also mention the barriers and


challenges to these liaisons that were encountered by our interviewees.Although the Ontario Advocacy Coalition could be classified as an adhoc coalition, our interviewees identified some of the strategic prob-lems that its loose structure caused: "Rather than trying to connectwith a common position ... people were just trying to shout each otherdown, and there wasn't any intent to collaborate and come up with acommon position." And "Yes, there was voting, but usually what endedup happening is [that] it just divided the coalition - not down the mid-dle, but about 60/40."

Another Advocacy Coalition member said: " [It] never really cametogether, and I think there were a number of reasons for that ... Thecomposition kept changing ... I'm not sure the constituencies thatthey said they were representing were with them all the time ... I don'tthink you can have a coalition unless you have at least a core piece ofcommon ground that people can agree on. I think the basic philoso-phies 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 whowere opposed to working with other groups because of personal andphilosophical differences. For example, People First, an advocacy orga-nization of people with developmental disabilities, did not want to workwith the Ontario Association for Community Living, which consistedprimarily of family members of people with developmental disabilities.

Perhaps the most threatening challenge to a partnership occurswhen, in spite of having one or more issues in common, the partnershold other values that conflict: "Some of these groups were not talkingabout disability at all, and so there was some friction there. Some ofthem were having some fairly vicious dealings with politicians and get-ting themselves knocked out of the fray. And they wanted us to dragthem back in. Some of them were using the coattails of disability to gettheir agenda on line. They knew their issues were going to be offensiveto 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, andwe knew that it wouldn't go through and then we would all sink."

Similarly, competition within partnerships can be destructive andcounter-productive: "My personal view is that it was a fight as to who wasgoing to control the advocacy community. Who's going to be seen as hav-ing the power? And there just seemed to be actions that were meant tosplit the community, to divide it, and to keep anybody from gaining toomuch ground." Another activist commented: "What's going on internallyis really far more destructive and depressing in a way. Very hostile kinds ofthings are being said, and it's unfortunate, because we don't have the en-ergy to fight on two fronts. We're really hurting our credibility right now."


Political inexperience often fostered unrealistic expectations: "Newgroups, when they're just starting, they want everything. And theythink that if you look righteous and you have a good argument, peoplewill accept it; that things should be as obvious to everyone else as theyare to you." Groups new to the game found it difficult to appreciatethat small achievements could be considered successes.

Timing is another important issue that can act either for or againstpartnerships in the policy process. The tipping of the scales in negotia-tions over the Canada Clause was a prime example: "Someone on thecommittee said, 'You know, given that this is the International Year ofDisabled Persons, don't you think we should reconsider this?' AndChretien said, 'OK, we'll reconsider it.'" But timing could also actagainst disability groups: "It was a trade-off. At the same time, the OMA[financial] agreement was being negotiated. So the government sawthat they could gain some ground in the OMA negotiations by givingup something on advocacy. So you always have to be aware of other is-sues that are going on at the same time."

The literature suggests that forming coalitions may be used as astrategy for involving wider groups of people in common objectives oractivities of mutual interest. As such, they can be considered examplesof "community agency advocacy." Some structural factors that stimu-late coalition formation are resource scarcity, a legislative mandate towork together, the presence of an effective catalyst organization, a pre-vious history of collaboration or competition, and a capacity to main-tain linkages (Butterfoss et al. 1993). Factors that contribute to themaintenance of coalitions include the establishment of formalizedrules and procedures, and the participation of strong core leaders whosupport members' concerns and are competent in negotiation, gather-ing resources, and problem solving (Roberts-DeGennaro 1986).

In the cases we studied, coalitions were effective only if they werecomposed of groups with mutual goals. For example, in the Ontariocase, coalition solidarity based on self-identity as a disability organiza-tion was less important than consensus on concrete concerns of deci-sion-making capacity. In particular, the interests of family-orienteddisability groups were distinctly different from those of consumer dis-ability groups. It is possible that coalitions of these two types of organi-zations are useful only for non-contentious issues such as accessibilityand human rights, rather than for highly charged issues such as capac-ity and substitute decision-making.

Social movement theory suggests that coalitions of groups of disad-vantaged persons may find it difficult to mobilize resources becausethey lack associational contacts or partnerships with those who controlresources (Knoke 1990). However, the strength of the political group


identity achieved by such coalitions or social movements maycompensate for this instrumental shortcoming (Touraine 1981). Asthe participation of disability groups in policy making matures, it willbe important to study the relative advantages of the networking strat-egy for persons with disabilities in comparison to its advantages forable-bodied community groups with more resources.

R O L E S W I T H I N D I S A B I L I T Y

O R G A N I Z A T I O N S

In characterizing the dynamics of citizen participation within disabilityadvocacy groups, it can be useful to examine them from an interestgroup perspective. Participants' formal positions, informal roles, andpower dynamics can be affected by a number of factors related tomembership and leadership.

Membership and Governance

A key characteristic that can help describe organizations advocatingfor people with disabilities is the structure of their governance andtheir membership. The organizations discussed by our intervieweesmay be divided into three types of membership: organizations madeup of individuals, family and friends, and groups and organizations.

Examples of organizations made up of individuals included theCNIB, the Multiple Sclerosis Society, and the Canadian ParaplegicAssociation, to name a few. Such organizations tended to be service or-ganizations or self-help groups aimed at providing counselling or sup-port to members. Individual members of organizations may be verydiverse, with a number of personal concerns unrelated to disability is-sues: "The disabled community is not separate from the women's com-munity, the Aboriginal community, or from visible minorities. Ourmembers 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 oursample by groups such as the Concerned Friends of Schizophrenics,the Canadian and Ontario Associations of Community Living, and theAlzheimer Association. In all cases, these organizations were composedof individuals who cared for people with disabilities and sought atten-tion for their issues. One participant raised an interesting questionabout disability groups made up of family members. To what extent dofamily members represent their own concerns rather than those of theperson with disabilities, and how much do they focus on their ownfamily member, rather than on a larger group of individuals with dis-


abilities? " [They] really created a different dynamic ... Their interestswere different, much more family-oriented, much more oriented to-ward a system that works for their ill family-member."

One interviewee observed an interesting phenomenon among orga-nizations of friends and family members. She noted a process of wan-ing loyalty toward the medical system and the development of morecreative forms of problem solving when traditional service organiza-tions failed: "They went through the process of putting their faith indoctors and found that it wasn't working. So they started looking forother solutions ... when they realized that doctors and hospitals didn'thelp that much. Some of them, I think, move [d] into some really inno-vative ways of dealing with things."

The final type of organization represented in our sample is the orga-nization made up of other organizations. Two such organizations withinthe disability community are COPOH/CCD and ARCH umbrella groupscomposed of other organizations that have a common purpose and phi-losophy. "[COPOH] is a membership organization representing cross-disability advocacy groups from each province. [Our members] adhereto the principles of independence and dignity for disabled persons, fullparticipation in the community, and equal opportunities. Our organiza-tions were 51 per cent consumer controlled, and we followed theIndependent Living philosophy." (COPOH subsequently changed itsname to the Council of Canadians with Disabilities, to reflect its inclu-sion of a number of other national organizations, such as the CanadianAssociation of the Deaf and the Multiple Sclerosis Society.)

The specific purpose of ARCH is to provide legal services: "[ARCH] isa cross-disability organization, linking people with physical, emotional,and developmental disabilities. We had about forty member groups in1992, as opposed to about fifty-five today. We have about twelve staff,including five lawyers."

A third umbrella organization discussed by our interviewees was theCanadian Rehabilitation Council for the Disabled (CRCD). CRCD pro-vided a unifying structure for a variety of national professional organi-zations. With a membership exclusively of professionals, it wassometimes seen to be in conflict with other consumer-oriented organi-zations. A COPOH member recalled its early days: "One of the firststrategies of CRCD was to integrate our emerging movement [COPOH]as a sub-committee of their board. Then they would digest our recom-mendations and forward them at their own discretion." To counterthis strategy, "[COPOH] went on a cross-country tour, to recruit organi-zational memberships, and to beat down our rivals, PUSH and theCRCD. It was a rival model that really stimulated the effort to form anational autonomous voice of consumers."


Regardless of the type of membership, a number of intervieweescommented that organizational structure was sometimes an impedi-ment to timely action: "Some groups would say, 'We'd like to act onthis, but we've got to wait for next month's board meeting, andpresent 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 for-mal board of directors and executive director can undermine the dem-ocratic process, especially in large and expanding communityorganizations. Smaller organizations are able to maintain a democraticdecision-making process more readily (Shragge 1990). Our cases dem-onstrate, however, that with extremely fragile organizations, individualswho have not received any formal mandate from a board may be calledupon to run the policy campaign and represent the board's policy posi-tion purely on trust - trust that the organization's values, its views ofpersons with disabilities, and its leaders' good sense will not be compro-mised in the various stages of policy negotiation and implementation.

Leadership and Experience

Leadership is an important factor affecting tactics in policy participa-tion. Each case illustrated had three to four leaders who took the ini-tiative, organized the work, and represented the organization's views.It is interesting that in none of the cases did a single leader monopo-lize the entire process. This collaboration was perhaps due to the em-phasis on coalitions.

Individual leaders can strongly affect the success of advocacy organi-zations. Sometimes one energetic leader can make things happen onbehalf of a whole organization. Opportunities to influence policy mayoccur simply because a person is in the right place at the right timeand is prepared to seize the moment: "We were very lucky in some ofour leadership, because they were very sophisticated in understandingwhat was possible ... We had some very skilled leaders who were able tobridge the gap with other communities and attract resources."

And leadership must continually be renewed so as not to become tooentrenched as it did in one example cited: "They got tired and they gotco-opted very early in the game. That's why you need new blood all thetime. And you need people with different ideas and approaches ... I'veseen the same executive directors ten, fifteen, twenty years in organiza-tions. 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 alsohelp to create opportunities: "A friend of ours knew we were trying to


get to the Minister, and he was very good friends with his legislativesecretary. So he introduced us to the legislative secretary, who got us into see the Minister." Experienced people are another most valuable re-sources: "I don't think we necessarily had the structures in place to de-liberately sit down and analyse policy, but we did have people with goodpolitical experience, who, when we did decide to undertake a certaincourse of action, made sure we did it with legitimacy and credibility."

In the literature, leadership has been conceptualized to include ele-ments of competence, performance, support, and control (Knoke1990). Wilson (1973) argues that while leaders are important to theachievement of the functional goals of a program, they often have dis-tinctly different, and more extreme, ideological positions than mem-bers do. Social exchange theory suggests, however, that a leader's chieftask in promoting citizen participation in policy advocacy is to managethe organization's incentive system. Incentives may include opportuni-ties for travel, influence, and public profile (Knoke 1985).

Even though most organizations have constitutions or bylaws thatcall for full participation by the members, they tend to be ruled by aminority, through what Michels has called the "iron law of oligarchy"(Michels 1959). The obligations of organizational roles and the struc-tural needs of the organization itself usually prevent full and equal par-ticipation of all members (Sills 1968). Leaders with specialized skills,available time, and temperament or charisma will tend to dominate inany organization (Knoke 1985).

Nonetheless, persons with greater perceived influence are thosewho are involved more frequently: "opportunity structures," or theability to access situations that foster influence, may be an importantelement in the process of empowering participation (Tarrow 1989).Oakley (1991) found that potential access to positions of power was asignificant factor for the recruitment and retention of participants foradvocacy work. Balcazar et al. (1994) has also reported that the leader-ship skills in advocacy organizations of persons with disabilities mark-edly affect the issues raised, the actions taken, and the outcomesachieved in advocacy.

All these previously identified effects of leaders on member partici-pation were evident to some degree in the cases we reviewed. Few neg-ative aspects were reported among leaders in these cases, although ourdecision to primarily interview individuals acting as leaders rather thangrassroots members of the organizations may have had a bearing onthe findings. Overall, the disability organizations were often strugglingfrom an underdog position in which leadership was necessary forgroup survival. The risk of a leader dominating the process appearedto be less pressing than the need for strong action.


Finally, although advocacy organizations tend generally to have mem-bers who are ideologically oriented and make strong commitments toparticipation (Sills 1968), this may not be the case in organizations ofpersons with disabilities who rely on others to speak for them. The dis-crepancies in status and experience between leaders and other moremarginalized target-group members may lead to leaders' assuming con-trol in order to achieve the public advocacy goals of an organization. Astudy comparing the characteristics of leaders and members in advo-cacy organizations and service agencies in both the disability popula-tion and the general community may be helpful in ascertaining theeffects of program mandates, leadership, and disadvantaged status oncitizen participation.

R E P R E S E N T A T I O N I S N O

G U A R A N T E E O F I N F L U E N C E

We have shown how reputations, responsibilities, resources, and rolesaffect citizen participation both within the policy-making process andwithin advocacy organizations themselves. Factors such as ideology, ad-vocacy mandates, leadership, membership base, coalition-building,and resource mobilization strategies had a direct effect on citizen par-ticipation. In particular, ideological and reputational mechanisms ap-peared to provide a degree of self-identity and autonomy to theorganizations in a way that facilitated the confidence and involvementof its members. Thus, a number of social movement characteristicswere observed in these cases (Castells 1983, Touraine 1981).

Previous studies on interest groups support the findings in this studyas well. The organizational characteristics that have been found to beimportant for the development of other advocacy organizations aresimilar to those that were important in these cases. Differences fromother advocacy organizations described in the literature are generallyminor and can largely be explained in terms of the early maturity ofCanadian disability organizations, their heavy reliance on expressiveleaders rather than on grassroots support, and their lack of material re-sources in comparison to other policy actors.

Hadley and Hatch (1981) highlight the diversity of form as well asfunction in agencies that represent disadvantaged groups. This diver-sity ranges from: "organizations no less formal than those found in thestatutory sector to some that are so informal that they hardly merit theterm organization." The present study adds to the scant literatureavailable on the latter type of community agency in the disability sec-tor. The next chapter further describes the potential for such agenciesto influence disability policy reform.

9 The Potential forInfluencing Policy

In the course of this study we have investigated the ways in which per-sons with disabilities participate in policy making, in order to developan understanding of the strategies and tactics, and the structural re-quirements for improved citizen participation in the policy arena. Inthis chapter we will examine the potential of disability groups to influ-ence policy by focusing on three areas. First, we conceptualize interestgroup roles and the effect that disability as a specific policy issue canhave on interest group participation. Second, we discuss some issues re-lated to the participation of disability organizations in policy making.These issues include: the distinction between representativeness andrepresentation in disability groups; the relationship between advocacyactivities, organizational structure, and grassroots member participa-tion; and the preconditions for disability groups to exert influence inthe policy relationship. Third, we link participation in the disability sec-tor to a broader analysis of the policy-making process in Canada, specif-ically the concepts of state autonomy and capacity, organizationaldevelopment and influence, and policy communities and networks.

I N T E R E S T G R O U P R O L E S

A N D P O L I C Y I S S U E S

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


primarily with the sociological and organizational bases for disabilitygroups' involvement in policy making, however, we will not allude tothese political science issues any further. We will instead focus specifi-cally on the roles that interest groups and policy content can poten-tially play in influencing policy.

Typology of Interest Groups

Interest groups can play different roles in the policy arena dependingon their type (Walt 1996). "Insider" interest groups are accepted as le-gitimate by government policy makers, with whom they have a closeconsultative relationship, providing and testing ideas for policychanges. An insider organization should be clear about its goals and itsintention 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 ofCOPOH as an insider group that could be counted on for support bythe government was a major dynamic in the Charlotte town case andprovided an interesting example of how even insider status may betemporary for marginalized groups.

How does a group achieve and maintain insider status? Some com-mon tactics are: to invite retiring bureaucrats to take positions in thegroup; to maintain regular contacts with specific civil servants; to orga-nize formal meetings between the organization and top officials a fewtimes a year; and to have a series of contacts with members of parlia-mentary committees. These tactics, which depend on developing closerelationships, may be ineffective, however, if the group is representingmarginalized persons or is challenging basic values.

"Outsider" groups (for example, Greenpeace or AIDS Action Now!)are perceived by government policy makers to be illegitimate. Theyuse different tactics: direct action with sensational strategies; persuad-ing individual politicians to take up their cause in legislature; and us-ing lobbyists or paying professionals (lawyers, journalists, or socialworkers) to put their cause to the media or to elected representatives.Outsider groups are often subject to sanctions if they are dependenton powerful groups such as professionals. An outsider group (for ex-ample, People First in this study) can sometimes become an insider or-ganization because of its moral authority, or its credibility, in the eyesof government interests.

A third alternative is described as a "thresholder" group. Suchgroups work in areas that are marginal - sometimes on the inside, butoften on the outside. For example, a government may value the advicea group provides without accepting its analysis of a problem or its sug-gestion for a reasonable solution. This threshold role appeared to be

147 The Potential for Influencing Policy

useful to some organizations in our cases, as they observably shifted be-tween insider and outsider status. This shift was sometimes a deliberatestrategy but was also occasionally caused by a change in governmentthat moved groups from insider to outsider status. In the patriationcase, COPOH acted as a thresholder group, sitting on governmenttransportation committees, and then using these opportunities asbases from which to tackle constitutional issues from outside.

Characteristics of the Successful Policy Issue

The characteristics of the policy issue can themselves affect policy pro-cess and outcome. In this study we considered the context withinwhich a policy issue arose and the interest that advocacy groups had inthat issue. Then we considered the characteristics of the disabilitygroup and other organizations involved, their structure, tactics, andstrategies.

Some characteristics of the disability policy that affected both pro-cess and outcome were evident in these cases. A policy is most likely toget on the agenda if a government has the support or trust of the pub-lic and thinks that the issue is highly legitimate and its implementationis feasible. Coleman (1985) suggests that if problem, politics, and pol-icy streams all come together, then policy action is more likely.

The term "problem stream" characterizes the way in which govern-ment officials learn about social conditions requiring legislative action.The problem stream may involve the use of statistical indicators, feed-back from existing programs, or events that may involve some kind ofcrisis (for example the Joseph Kendall coroner's hearing in theOntario Advocacy case). The term "politics stream" characterizes thevisible participants (the organized interests who highlight a problemand use the media to get attention), who can be inside or outside gov-ernment; and the hidden participants, such as consultants, research-ers, or academics, who can leak information to the press, or callattention to problems through scientific articles. The "policy stream"characterizes the methods of policy makers who select from amongproblems using criteria such as: congruence with existing values, antic-ipation of future constraints, public acceptability, politicians' receptiv-ity, and technical feasibility of implementation.

Overall, Coleman predicts that policy is more likely to be formulatedand implemented if the following conditions apply:

• the policy will not generate strong reaction, or the government candissipate reaction;

• the proposed change is marginal (also known as incrementalism);


• the goals of the policy are clearly stated and there is one major ob-jective;

• the policy is perceived to be based on a clear theory of cause and ef-fect (perceived as a "good" policy and likely to succeed);

• the policy has relatively simple technical features (knowledge andtechnology 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 coordi-nation;

• the policy can be introduced quickly, and is therefore less likely toencounter resistance or leadership changes.

The fact that many of these elements were lacking in our case stud-ies may help explain the difficulties they met with in the policy stream.For example, in Ontario, the Advocacy legislation lacked a number ofthese policy characteristics: the legislation was complex; it involvedfundamental changes; it was technically difficult; and it needed to beimplemented by networks. Ultimately the Advocacy legislation failed,while other changes to the Consent to Treatment Act, which were mar-ginal and simpler, survived the change of provincial government. Atthe same time, the British Columbia case illustrated essentially thesame advocacy issues being more successfully addressed due to a stron-ger set of disability participants who had no real opposition from pro-fessional or family groups.

In the Charlottetown case, on the other hand, the complexity of pol-icy implementation should have predicted failure as well. However, de-spite the fact that implementation would ultimately fall on theshoulders of the provincial governments (even though they wereagainst it), since the federal politicians were in favour, the policy initia-tive proceeded - at least until more pressing constitutional issuespushed the disability groups aside in 1992.

C O N T E N T I O U S I S S U E S I N D I S A B I L I T Y

G R O U P P O L I C Y P A R T I C I P A T I O N

Representativeness or Representation ?

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


state can be contrasted with "participatory" democratic principles of eq-uity and community representation within a social welfare state.

The representativeness of an organization in policy making indicateswhether there is participation from the entire range of individualswho could be involved in a policy-making process. This approach de-rives from the politics of consumerism and market welfare, and is ofprime interest to funders and government in their relationship withcommunity organizations that are participating in policy making. Rep-resentativeness utilizes formal administrative structures such as elec-tions based on notions of representative democracy. Under such astructure, there may be problems with individuals' being heard. Dem-ocratic theory itself presumes that there will always be inequities ineconomic power, and, by extension, inequity in the ability of disadvan-taged groups to participate (Held 1987). Under a system of represen-tative democracy, the average member of an organization is relativelyremote from the real exercise of power. The elite leadership roles thatrepresentative systems create are also cause for concern. Representa-tives often develop vested interests in their functions that may conflictwith those of the members who selected them (Dachler and Wilpert1978, Sadler 1979). The British Columbia Adult Guardianship caseprovided some examples of the exercise of power by those with vestedinterests.

Representation of a collective organization, on the other hand, is quitedifferent. It indicates whether a whole organization is included in thedecision-making process. This approach derives from the politics ofliberation, inclusion, and equal opportunities, and is of prime interestto community organizations that attempt to form a collective identitybased on shared experiences and ethical, rather than material, motives(Jenson 1994). Representation is based on informal power struc-tures and notions of participatory democracy (Held 1987). TheCharlottetown Accord case illustrated the concept of representation bydisability interests in the constitutional policy field.

Even if there is representation by community groups in decision-making, however, organizational influence is not guaranteed. Studieshave shown that power hierarchies, lack of access to information, anddisparities in administrative skills can inhibit equal participation. Forexample, Godbout (1981) reports that consumer groups require aguaranteed number of elected seats to be able to exercise any influ-ence in CLSCS (Centres Locaux de Services Communautaires) inQuebec. In contrast, Eakin (1984) reports that in Quebec hospitals de-mocratization of board membership beyond elites was ineffective intransferring control to community interest groups. Sullivan andScattalon (1995) also note that persons with disabilities who were


members of health policy boards in Nova Scotia had no increase in de-cision-making authority. These studies indicate that the status quo wasmaintained because of the traditional power hierarchy, because indi-viduals lacked legitimated ties to formal consumer organizations, andbecause as consumers they had insufficient knowledge and skill levelsto participate on an equal basis with professionals and elites.

Citizen participation in policy making that is based on representa-tive principles is rife with conflict over the question of legitimacy. Onthe one hand, when citizens demand participation, they may be metwith the bureaucratic challenge: "Who do you represent anyway?" Thischallenge may reflect either a real power struggle or a conflict betweenrepresentative and participatory democratic principles. On the otherhand, when bureaucrats themselves select citizens for participationfrom particular groups, there is often a requirement that these partici-pants act not as representatives of those groups but only as individuals.This again may reflect either a power struggle or a fear that representa-tives will continually seek approval from their constituent group intime-consuming ways (Lucas 1978).

Furthermore, Alford (1975) notes that inter-agency planning com-mittees that include grassroots community members may operate un-der rules that require a consensus, and are thus doomed to failure. Heargues that the inclusion of a wide range of community members in or-der to make community groups representative prevents consensusfrom being reached within the community itself, much less with pro-fessional and bureaucratic participants. A "veto group" process canlead to stalemate and perpetuation of the status quo.

Beresford and Campbell (1994) and Bewley and Glendinning(1994) note that consumer organizations of persons with disabilitieshave been criticized for not being representative, or inclusive, of thebroad population of persons with disabilities who are users of their ser-vices. However, in defence of individuals who try to represent others,Godbout (1981) argues that consumer leaders have often themselvesevolved from being passive service users to becoming active advocatesfor change. Since they bring their personal experiences, the represen-tation of the collective interests through leaders may be broader thanthe apparent non-representativeness of its members might indicate. Itshould be noted as well that not all persons with disabilities are able toassume 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 dem-ocratic principles of representativeness by focusing on a broad rangeof activities that are important to all or most persons with disabilities,rather than by formally recruiting a broad range of people to


participate. This strategy is based on a social model of disability and as-sumes that differences among people with disabilities are not as greatas differences between access to activities by persons with disabilitiesand by able-bodied persons. For a community organization to involveall subgroups in policy development, according to ethnicity, sexual ori-entation, and disability status, for example, significant external sup-ports would be required.

Regardless of the model used to represent a broader domain of per-sons with disabilities, there is an increasing realization that targetgroup members must not act individually, but as true, informed, andlegitimated representatives. However, for this to happen there mustalso be organizational support in the form of training and physical, in-formational, and temporal forms of access (Drake 1992).

Relationship Between Advocacy Activities andGrassroots Citizen Participation

A major trend in our sample cases was that over time there was an in-crease in the roles and influence of staff and organizational leadersand a decrease in the participation of local community members. Thistrend appeared to have been influenced by a shift in organizationalobjectives from self-help and education for grassroots members to ad-vocacy and lobbying with other agencies for changes in public policiesand programs. Thus, the tendency in advocacy work to politicize issuesin order to address structural conditions had the concomitant risk of agradual alienation from grassroots groups that had continuing serviceneeds. General shifts in project objectives, or goal displacement, havebeen noted previously to have varying effects on citizen participation(Sills 1968, Klandermans 1984).

The intention here is to discuss how advocacy activities in particularare associated with low levels of grassroots member participation. Twointerpretations, the motivational and the instrumental, are relevant toexplanations of this shift in participation.

The motivational view helps explain the tendency for more advan-taged groups, which have fewer needs for material benefits, to pre-dominate in advocacy. These groups are not as preoccupied withsurvival needs and may instead desire the status that can be achievedthrough participation in an advocacy campaign (Hermann 1991). Thespecific focus, or orientation, of the advocacy activity is important inthis motivational view. Turner and Killian (1987) describe threeorientations of advocacy campaigns: a participation orientation, or ori-entation towards the personal benefits of participation; a power orien-tation, or orientation towards acquiring and exerting influence; and a


value orientation, or orientation towards the goals and ideology of themovement.

Klandermans (1984) uses the motivational typology to hypothesizethat organizations with a power orientation must convince potentialparticipants that the advocacy campaign will be successful, or memberswill not participate since there is little direct material benefit to the in-dividual. Paradoxically, once an organization convinces individualsthat the campaign will be successful, the more attractive it becomes forindividuals to take a free ride, and thus have fewer reasons to partici-pate (Olson 1968). If an organization has a value orientation as well,however, this problem of non-participation is reduced, since the indi-vidual may participate for the achievement of an ideological goal.Thus Klandermans's analysis predicts that advocacy groups with apower orientation, but without additional material, ideological, oridentity formation benefits, are unlikely to have significant memberparticipation. All of the cases in this study appeared to have multipleorientations towards advocacy, and it is difficult to explain our findingsfrom the motivational view point alone.

An instrumental perspective on advocacy is perhaps more useful inexplaining the emergence of the advocacy strategies of these organiza-tions. Shakespeare (1993) notes that disability organizations may shifttheir focus to advocacy in an effort to increase their legitimacy and re-sources. In so doing, they may oppose the funding of new groupsclaiming to represent the same interests. In Canada, the decisionmade by disability advocacy groups (COPOH) and government in the19805 to exclude emerging Independent Living Centre organizationsfrom involvement in systemic and public advocacy activities is an exam-ple of this dynamic that perhaps reflects a power orientation(Valentine 1994).

Phillips (1994) notes the instrumental difficulties that communityadvocacy organizations face in trying to balance the need for represen-tation through lobbying by leaders and the need for member partici-pation through collective action. Offe and Weisenthal (1985) andMelucci (1988) note a similar distinction between representation (in-direct, deferred goal satisfaction, by leaders) and participation (direct,immediate, large investment of time, by members) which are both nec-essary in social movements. However, these strategies require differentresources, types of knowledge, and organizational processes, and aredifficult to balance. If a social movement organization chooses to pur-sue advocacy primarily through attendance at meetings, through theconduct of research, and through fundraising, it runs the risk of losingtouch with the grounded passion and participation of its constituency.On the other hand, an advocacy strategy focused principally on public


participation and collective protest brings the attendant dangers of di-minishing effectiveness, reduced credibility of representation, and thealienation of more moderate supporters.

The literature suggests that organizations do not necessarily chooseone option over the other but develop strategies to allow both optionsto have a place. For example, national organizations such as COPOHmay leave some participatory advocacy activities to local groups thatcan quickly mobilize public interest. However, there is a danger thatlack of connection between national and local levels may divide issuesinto national and local responsibilities, with a resulting loss of influ-ence. An alternative approach is to share responsibility for advocacystrategies in order to address the same issues at national and regionallevels. This approach recognizes that political opportunity structuresare operative as well (Tarrow 1989). For example, government inter-est, funding sources, alliances with other organizations, and existingstructures of gender, class, and race relations may vary within a countryand should be addressed at different levels of an advocacy organiza-tion according to the context. This intersection of structure (invita-tions and opportunities provided by existing conditions) and theagency of organizations (choices and opportunities which are made) isa major focus of new social movement theory (Scott 1990).

Klandermans (1984) provides a structural typology of social move-ment organizations that leads to explanations regarding their relianceon local participants. An "isolated" social movement organization hasno branches and relies on direct contact with its members. In its earlydays, BOOST was an example of this type of organization. In contrast, a"federal" structure has local branches with which it can interact in oneof three different ways. A loosely coupled "network" structure (e.g.,DAWN), which often results from a merger of pre-existing organiza-tions, may have good coordination within a community. A "pyramid"structure (e.g., COPOH) has weak links between levels, with higher-level organizations defining common goals, providing services tolower-level organizations, and giving advice to policy makers, all ofwhich promote the unity and legitimacy of the movement. Local orga-nizations in pyramid structures (e.g., PUSH) are relatively autonomous,diverse, and spontaneous. In "centralized" federal movement struc-tures (e.g., CPA), local organizations are coordinated by a highly cen-tralized national organization.

Klandermans suggests that federal structures may be able to make useof local chapters, but there is no guarantee that local chapter officerswill be able to mobilize local members, especially in loosely coupled net-work structures (DAWN). Movements with a pyramid (COPOH-PUSH) orcentralized structure (CPA) are more likely to be able to mobilize local


officers; however, if they cannot do so they are worse off than a move-ment with an isolated structure, because the movement is cut off from itslocal constituencies and may face extinction (Boyce 1999).

Thus, advocacy organizations that use a loose network structure mayrely on grassroots mobilization in times of crisis. Those that utilize pyr-amid and centralized federal structures may be better able to take ad-vantage of opportunities and claim legitimacy of group goals, but maybe less able to respond rapidly. They face greater risks in the context ofa rapidly changing funding environment.

Preconditions for Policy Influence

The fundamental importance of power, or relations of dominance be-tween state, disability, and other groups was evident in these cases. As abackground to discussing these expressions of power, it is useful toclarify certain power typologies. It is important in this discussion toemphasize the differences between the terms "influence" and "power."Influence only implies a contribution to the processes of informationgathering, deliberation, and argument. Influence does not necessarilyimply power or the ability to actually determine the outcome of adecision-making process (Pateman 1970).

Contemporary power theories assume that power is relational ratherthan undimensional (Lukes 1974, Foucault 1979, Alford andFriedland 1985). When one actor dominates in a situation, otheractors can resist the process in ways that may aid other goals such asidentity formation. In this sense, power is not zero-sum and absolute,but relative and negotiable through processes of conflict andco-production (Susskind and Elliott 1983).

Dubins's (1958) concepts of power are very helpful in explainingwhat happens in government policy making. He suggest that there arefour types of power: technical, or knowledge-based power; formal, orcoercive power, backed by force; non-formal power, or knowing how towork 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) sug-gest that different power processes can coexist at each level of analysis(individual-group, organizational, societal). In particular, Lukes's anal-ysis of power processes suggests that, in any setting, a dominant groupmay exert control over a subordinate group in three ways: they mayuse force or authority to actively prevent others from occupying influen-tial or authoritative positions; they may fail to act through non-decision,thus leaving in place obstacles and barriers that prevent others fromexercising power; or they groups may construct and reinforce a


hegemony, in which it becomes the norm for them to exercise powerand for subordinate groups to be passive recipients of benefits. Thesedynamics can occur in any class, race, disability, or gender grouping.

Assuming that power is relational, however, the non-dominantgroup may respond with a resistive challenge. Drake (1992) notes thatcertain preconditions are necessary for non-dominant participantssuch as disability groups to attain power. Our four policy cases illus-trate certain local structural factors that are associated with these pre-conditions. First, consumer representatives in advocacy organizationsmust develop the personal capacity to actually resist power, especiallyin situations of force and authority. Structural factors that limit thispersonal capacity and impede progress include disability group mar-ginalization and stigma. Second, disability groups must occupy organi-zational positions in which power can be exercised; they must haveauthority to counteract non-decision. Structural factors that facilitatetheir taking on these positions of authority include organizationalstructures such as credible membership rights, role mobility, leader-ship development, and various forms of access. Third, disabilitygroups' organizational positions must be situated within norms andnetworks such that the exercise of power is effective and achieves itspurpose, especially in hegemonic situations. Structural factors that fa-cilitate the effective development of norms and networks include legit-imate organizational mandates for representation, sufficientresources, and a managed role for professionals.

Drake (1992) adds that participant power cannot be expressed ifany of these local preconditions are absent. Political influence may bepresent, but not actual power. Our next section outlines other broadstructural characteristics of the policy arena that are also critical forsuccessful policy participation.

C A N A D I A N D I S A B I L I T Y O R G A N I Z A T I O N S '

I N F L U E N C E I N P O L I C Y M A K I N G

We reviewed earlier the various streams of social change theory thatare relevant to participation of organizations in public life - Commu-nity Organization, Social Movement, Interest Group, and PoliticalEconomy theories. These structural theories have significant concep-tual advantages in explaining trends and capacities in citizen participa-tion, but all are limited in their usefulness for explaining theparticipation phenomenon in the area of policy making since they un-der-conceptualize the role of specific state actors. Neo-marxist politicaleconomy theories, in particular, assume a uniformity between state in-terests and bureaucratic motivations, which, as the Adult Guardianship


case showed, were in fact quite divergent. Numerous studies have dem-onstrated that significant variations occur across policy sectors evenwithin a single country such as Canada (Coleman and Skogstad 1990).Skocpol (1985, 17-18) notes that "one of the most important factsabout the power of the state may be its unevenness across policy areas.And the most telling result, even of a far-reaching revolution or reformfrom above, may be the disparate transformations produced across so-ciopolitical sectors." In the final section of our discussion, we will anal-yse some of the meso-level sectoral influences on citizen participationin the policy process. We use many of the definitions developed byColeman and Skogstad in Policy Communities and Public Policy inCanada: A Structural Approach (1990).

State Autonomy and Capacity in Policy Making

In studying the participation of sectoral interests such as disabilitygroups in the Canadian policy-making process, we should first exam-ine two structural variables of the state itself. The concept of state au-tonomy refers to the degree to which state actors are independentfrom societal interests when they formulate policy objectives. Duringthe period 1980-94, state autonomy was relatively low in the Canadiandisability sector. Although political support for federal bureaucracy(Secretary of State Disabled Persons' Participation Unit) and provin-cial 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 fromvarious disability perspectives (i.e., the impairment-medical model asopposed to the handicap-social model). Thus, the state was necessarilydependent on disability groups to articulate policy directions. This sit-uation can be contrasted with the issue of gender, about which manybureaucrats had clear opinions based on their personal experience.

Furthermore, since federal-provincial responsibilities in social wel-fare and employment training for persons with disabilities were in con-flict, neither level had complete policy jurisdiction - anotherillustration of low state autonomy. Nonetheless, some government de-partments were penetrated by disability activists and their supporters.This form of influence meant that ministries had political mandatesfrom their disability clientele, rather than having well-conceptualizedfunctional mandates and self-contained expertise in disability issues.

Finally, as the social model of disability gained popular credibility, thebreadth of technical information required by bureaucrats to analyse pol-icy initiatives increased exponentially. Government departments be-came dependent on key disability organizations, acting as thresholders,


to assemble this information. Since it focused on issues such as social in-clusion which were difficult to quantify, such information was consid-ered "soft." Even fundamental tools for policy making, such ascategorization of disability within the population, became obscured withcriticisms of the standards expressed in the International Classificationof Impairments, Disabilities, and Handicaps (ICIDH) on its release in1980 (Fougeyrollas et al. 1998). An Ontario example that illustrates thelow state autonomy in disability matters during this period was the needto convene the separate O'Sullivan Commission on advocacy issues tohelp disentangle issues of consent from issues of advocacy.

State capacity, another structural variable in policy making, state ca-pacity, refers to the ability of the state to draw on sufficient institutionalresources to design and implement policies that will realize its policyobjectives. Again, in the area of Canadian disability policy making, statecapacity was relatively low during the period under study, since few offi-cials had skills across the broad domain of disability issues. Disabilityhad not been integrated as a cross-cutting theme in the way that genderhad been integrated. Also, fewer financial resources were available fordisability policy development in the latter part of the decade comparedto the early 19805 (Phillips 1992). Finally, there was little capacity to co-ordinate the actions of participants in the policy-making process sincethere was no single government agency that dominated negotiations ateither federal or provincial levels, and inter-departmental and federal-provincial committees were not fully functional.

State autonomy and state capacity may occur together in policy mak-ing. However, they cannot themselves ensure an efficient and equita-ble policy process. The organizational development of societal actors isalso important, especially when these actors are needed for problemidentification and policy implementation, as they were in the AdultGuardianship case. Such webs of interdependence may constrain theeffectiveness of state officials.

Nonetheless, given that a Canadian disability bureaucracy, albeit rel-atively weak, was in place at this time, the potential for disability orga-nizations to achieve their progressive policy goals was increasing,especially with symbolic non-monetary issues such as constitutional in-clusion, consent, and decision-making. Why did these efforts eventu-ally falter? We look to the structural elements of the disabilityorganizations themselves for answers.

Organizational Development of Disability Interests

There are a number of roles that sectoral organizations may play inpolicy making. Policy advocacy involves approaching the state in a lob-


bying role, outside the formal decision-making structures, to influencethe nature and content of public policy. The success of advocacy insuch an "outsider" role depends on the group's knowledge of the pol-icy process and where it can fit in; on generating information (or op-tions for consideration) about specific policies; on mobilizing politicalsupport for its proposals; and on maintaining internal member cohe-sion and pressure on public officials.

Policy participation is an "insider" role which requires that a groupnot only develop the capacities of the advocacy role but also formalizeits internal structures and assume a distinct organizational identity thatwill allow it legitimate access to formal decision making structures.

The roles of policy advocacy and policy participation coincide whenorganizational development has occurred. Schmitter and Streeck(1981, 124) state that when organizational structures are more devel-oped: "the more encompassing they are in purpose and scope; themore specialized and coordinated they are internally; the more safelytheir supply of strategic resources is institutionalized; and the greatertheir autonomous capacity to act and to pursue long-term strategies re-gardless of short-term environmental constraints and fluctuations."Such a highly developed situation may have occurred, for a brief timeat least, in COPOH-CCD on the constitutional front. However, the casesin this book primarily represent situations in which policy participa-tion, and not just policy advocacy, was the expected role for disabilityagencies.

Two types of organizational development must be present for policyparticipation, to occur (Coleman and Skogstad 1990). First, the orga-nization must be able to prioritize and coordinate a range of complexinformation and activities that allow it to arrive at, and express clearly,positions on sophisticated policy questions or options. This sophistica-tion requires members who possess both narrow, specialized domains(e.g., single-group disability agencies such as the CNIB or CPA) andbroad, representational domains (e.g., COPOH, BCACL, or OACL).Such a combination produces a highly differentiated system with sub-units containing various interests and, to a degree, political perspec-tives, which are capable of producing the specialized information nec-essary for highly technical policy debates. Without such coordinateddifferentiation, an organization will be unable to provide the knowl-edge that is needed for active policy participation. Furthermore, orga-nizations trying to participate with only a narrow knowledge domainmay be set off against each other or may be reduced to assuming a pol-icy advocacy role. The types of organizations that can integrate inter-ests sufficiently to assume a broader policy participation role includesingle associations such as ARCH, which have a highly differentiated


internal system with expert staff and executive structures capable ofcoordinating diverse concerns. Alternatively, a "sectoral peak" associa-tion such as COPOH (which is an association whose members are otherassociations) may be sufficiently differentiated through its broad mem-bership to be able to speak for the range of member interests as well asto integrate and find a consensus among members through executivecouncil mechanisms.

The second type of organizational development that is a prerequi-site for policy participation is the ability of a group to be sufficientlyautonomous from its members to be able to transcend their short-terminterests and take a longer perspective on policy while still guarantee-ing member compliance. This autonomy depends both on the stabilityand diversity of the group's resources and on the development of akind of monopoly status as an intermediary between the sector and thestate. Associations that rely mainly upon disadvantaged members forresources (e.g., Ontario Advocacy Coalition) usually have a limited,unstable supply of funds and must constantly call on members and ne-gotiate with them for financial support. These repeated appeals in-crease the accountability of an association to its members but lead to adecrease in leader autonomy, which would be needed for full policyparticipation to occur. In coalition activities, coalition members mayresist assuming this accountability by failing to get formal approvalfrom their agency for policy positions. They may end up representingonly their personal views, a stance which usually limits their policy in-fluence in the eyes of other actors.

In situations in which advocacy groups have diverse sources of insti-tutionalized resources (e.g., OMA), leaders are also able to have moreindependence. This independence may be facilitated by a publiclyconferred legitimacy that derives from official recognition of a right tobe a party to decision making (note that in the Ontario case, the OMAhad to fight with the NDP government to be allowed to assume theirtraditional role). The attainment of such a public status becomes morelikely when a group lacks competitors for representation of the inter-ests of the sector. In the Canadian disability sector, this type of monop-oly status has not yet been achieved by any organization because of thesector's traditional distinctions between types of impairment - physi-cal, sensory, developmental, and emotional-cognitive. During the 1980Charter discussions, COPOH was the principal consumer-directed dis-ability organization at the table. By 1992, however, other disabilityagencies had gained strength and also demanded representation.

In the final analysis, could one say whether there was a strongly de-veloped or weakly developed disability sector during the period of thisstudy? The cases in this book suggest a variation, depending on the


issue and the timing. In an example of a weakly developed system thataddressed consent and advocacy in the 19905 (Ontario), there was anunlimited number of specialized groups whose domains overlapped(OAC versus Ad Hoc Coalition, for example) and which competed withone another for members (e.g., the various groups representing per-sons with schizophrenia and their families). Groups were weaklylinked together and there was no single organization able to coordi-nate the diverse interests of the sector. Some disability interests evenremained outside the system on the advocacy issue (i.e., PUSH,COPOH'S Ontario affiliate). A weakly developed system of this naturelends itself to policy advocacy rather than to formal policy participa-tion. With a more modest advocacy goal, groups could have main-tained their own internal cohesion without needing to resolveconflicting policy objectives. As formal policy participants, however,their weak system presented problems for the bureaucracy that had toconsult and accommodate several competing groups. Even then, it wasdifficult for officials to know who spoke for different interests andwhich group was most representative.

In a more strongly developed system that was involved in a similar is-sue (British Columbia Adult Guardianship), groups were linked inways that made the system more encompassing in scope and purpose.Groups were specialized and internally coordinated, balanced and se-cure in their supply of resources, and autonomous in their actions andcapacity to plan for the longer term. Such systems are more likely tosurvive environmental pressures (e.g., the change of coordinators atPRAG) and more able to engage in strategic planning. The opportu-nity that PRAG presented to the state to bargain with a limited numberof more strongly linked organizations made this grouping an attractiveprospective participant in policy making to bureaucratic actors.

These provincial cases indicate that well-developed organizationalsystems are better equipped to move beyond policy advocacy to policyparticipation and that the incentives to increase the level of organiza-tional development should rise as a system becomes involved in policymaking. The federal cases in this book also suggest, however, that acomparatively well-developed advocacy group in the 19905 (CCD) wasless able to influence constitutional policy development (although stillable to contribute to its blockage by referendum) than its compara-tively more weakly developed predecessor in 1980 ( COPOH) .

Schmitter and Streeck (1981) identify broad explanations for theorganizational development of a sector: the logic of membership andthe logic of influence. The logic of membership refers to the interestsand motivations of individuals and organizations that bring them tojoin a sector. In the disability field, these motivations are characterized


by a moderate consensus on deeper values (the debate on disabilityrights versus protection of persons with disabilities); the sense of col-lective identity (within a hierarchy of disabilities and invisible disabili-ties such as epilepsy and chronic fatigue syndrome); the size of thepotential membership domain (under 15 per cent of the population);the geographical distribution of members (dispersed); the resourcebase of organizations (poor); and the nature of primary, informal so-cial relations with others (stigmatized). In combination, these factorsindicate a relatively low logic of membership and thus contribute todifficulties in establishing a cohesive disability sector in Canada.

The logic of influence includes the mechanisms for affecting policydevelopment, particularly the structures of significant institutions suchas the state. In the disability field, there are relatively few complex,cross-sectoral structures that address disability issues. In contrast, inthe gender field there are well-established structures such as women'sdirectorates for dealing with women's concerns in education, employ-ment, safety, and health. In the disability field, there are also disagree-ments on federal-provincial responsibility for particular problems.Disability advocacy groups prefer dealing with federal officials, partlybecause they have valuable political connections and partly becausethey adhere to a philosophical principle that demands portability ofsocial benefits across the country. The dearth of disability organizationpersonnel able to actively lobby and participate in policy developmentat the provincial level also encourages, for efficiency's sake, a focus ona single federal structure.

We have already noted the relatively low autonomy and capacity ofCanadian state actors in disability matters. It is important to add thatthese characteristics of the state, which are largely caused by a lack ofclarity in federal-provincial responsibilities, also result from an ex-panded, yet unclear, understanding of the dimensions of disability is-sues revealed by the social model. This weak policy structure may inturn have shaped the organizational development of disability inter-ests. The disability sector remains fragmented, under-resourced, andprone to pursue particular political connections rather than develop-ing the breadth of skills required for full policy participation. Overall,the logic of influence for advocacy organizations in disability mattershas been low.

State policies may themselves have an impact on organizational de-velopment. For example, the trend in the igSos to support particulardisability advocacy groups with core funding may have led to a depen-dent relationship with government that prevented groups from devel-oping a broader coalition of disability interests. In addition, the ever-changing preference of state actors for various forms of organizational


development, which they are able to influence through funding enve-lopes, (from professionally led or advised groups, to grassroots con-sumer-majority groups, to more recent networks of consumers andproviders) ensures that organizations need to continually evolve theirstructures at the expense of developing their policy capacity (Boyce, inpress). On a more optimistic note, as the state withdraws from the so-cial welfare approach, in which the state assumed responsibility for theless fortunate, in favour of the welfare society approach, in which carefor the disadvantaged becomes a responsibility of all sectors (Crichtonandjongbloed 1998), the disability sector may become less dependenton government funding, with the result that a broader coalition ap-proach to social benefits may develop.

Policy Communities and Networks

The previous discussion demonstrates the diversity in state-society rela-tionships across sectors within Canada. In our efforts to understandthese arrangements at a sectoral level, some concepts of particular in-terest emerged. Policy communities include "all actors or potential ac-tors with a direct or indirect interest in a policy area or function whoshare a common 'policy focus,' and who, with varying degrees of influ-ence shape policy outcomes over the long run" (Wilks and Wright1987, 300). For example, within the disability policy field, the policycommunity includes those with interests from economics to health toeducation to law.

According to Wilks, the "sub-government" part of the policy com-munity is composed of government agencies, organized disability in-terest groups, and health, education and social welfare agencies, whichare all policy participants. The "attentive public" is composed of rele-vant media, interested persons with disabilities, and professionals whoattempt to influence policy and thus are policy advocates.

Policy networks, on the other hand, are relationships that develop inthe policy community on specific issues during the process of policymaking (Coleman and Skogstad 1990). These exist as networks of in-dividuals from various institutions, disciplines, and professions, andcommentators within and outside government. Networks constantlyexchange information about activities and ideas, provide a number ofdifferent fora in which early stages of opinion formation and consen-sus building can take place, and gradually diffuse ideas broadly, so thatsome of them reach government policy makers. Policy networks aremore oriented towards action than are policy communities, and policychange may come about because a number of different members ofpolicy communities initiate action on a particular issue. Policy


networks are not always consensual, and there are occasionally com-peting coalitions within networks. In the Ontario case, for example, anetwork of those both for and against advocacy formed around thequestion of whether a system of public advocates should be put intoplace to safeguard the rights of at-risk persons with disabilities.

The policy networks, or relationships, that form in working out pol-icy issues have been explained using two different approaches. "Powerdependence," which is largely based on functionalist interest groupand social network theories, focuses on the integration of a policy net-work (Wilks and Wright 1987). A highly integrated network has stablerelationships between its members, continuity through a highly restric-tive membership, interdependence and shared responsibility for pol-icy implementation, and insulation from other networks. A weaklyintegrated network has a less restricted and consequently less stablemembership and a lower degree of organizational independence, andis more open to influences from outside the network. Despite the factthat the disability cases in this study often assumed the shape of weaklyintegrated networks they were able, at times, to achieve significant pol-icy influence. Concepts of power dependence may be helpful in analys-ing policy networks that share a similar policy perspective, but they arenot necessarily useful in analysing policy networks where substantivedisagreements occur, as in the Advocacy case in Ontario, for example.

An alternative approach to explaining policy networks focuses on thestructural properties of state agencies and organizational interests. Asmentioned earlier, state autonomy and coordinating capacity, or theability of the state to concentrate its resources and expertise in makingdecisions, are key concepts in policy making. The relative centralizationof state agencies, or the presence of effective inter-departmental com-mittees, is a useful indicator of state capacity. The development of sec-toral interests is also a key indicator of societal capacity to engage inpolicy participation. Although all types of networks may exist in the gen-eral Canadian policy community, the disability sector appears to becharacterized by fragmented state authority and a low level of develop-ment of organized interests, in comparison to other sectors such asbusiness or labour. This combination of dispersed state authority and aweak consumer system that is unable to coordinate the multiple, spe-cialized groups competing with one another, can result in a mode ofgroup-state relations in which groups approach the state indepen-dently, often competing for attention and policy preference.

There are a number of types of policy networks. A "pressure plural-ism" network occurs when state agencies have the capacity to be auton-omous, for example on constitutional issues, and a policy advocacyrole is allotted to the interest group (for example, in the Patriation


case). However, when state autonomy is less developed, or when pene-tration of the bureaucracy by ideologically motivated sectoral support-ers has occurred, state officials may be unable to distinguishthemselves from organized interests (for example, in the case of theOntario NDP government). The state bureaucracy becomes dependenton disability organizations both to supply information and expertiseand to ensure member compliance in not embarrassing the govern-ment, and offers them in exchange an opportunity to participate inthe policy process. This network mechanism is termed "clientele plu-ralism" and has been noted also in the pharmaceutical and health sec-tors in Canada (Atkinson and Coleman 1985, Boase 1982).

Finally, "state-directed" networks can arise when sectoral interestsare very weak and when the state benefits by the creation of a specialinterest group. Phillips (1994) notes this dynamic in the developmentof women's, multicultural, and official language minority groups inthe 19803 as a counter to the Quebec separatist movement. Duringthis same period, federal support for the development of disabilitygroups mushroomed, although this expansion also created resourcedependency for the larger groups. This dependency may then havehad serious repercussions on the policy position that disability organi-zations were pressured to take. For example, the refusal of disability or-ganizations to accept what they saw as their exclusion from theCharlottetown Accord, which in effect helped to defeat the measure inthe referendum, may have been interpreted as a betrayal by the consti-tutional bureaucracy and resulted in longer-term difficulties in gainingstate financial support.

Coleman and Skogstad (1990) note that the concepts of policy com-munities and policy networks cannot explain all the dynamics in anyparticular setting, and there are numerous hypotheses yet to be investi-gated. First, policy communities may become institutions in themselvesand develop integrated values, norms, and beliefs that shape policynetworks and eventually policy outcomes. Individual participants' un-derstandings of the rules of the policy game develop only gradually,however, and thus their organizational responses are not always pre-dictable. As well, the strength of deeply held belief systems in state anddisability organizations, for example belief concerning the capacity ofpeople with disabilities to fully participate in policy development, mustalso be considered as a force that influences their actions. Second, dif-ferent types of policy networks may exist within the same policy com-munity, as they did on the issue of vocational rehabilitation versussubstitute decision making, for example. Allies on some issues may be-come opponents on others. Finally, the changes in some types of policynetworks over time, for example between 1980 and 1992 in the area of


constitutional negotiations, illustrate the dependency of policy dynam-ics on larger political, economic, and social priorities in the country.

Our concluding chapter proposes some guidelines and recommen-dations, aimed at both state interests and disability organizations, tohelp increase the participation of persons with disabilities in thepolicy-making process.

i o Recommendations forResearch and Strategy

F U T U R E R E S E A R C H

O N P O L I C Y P A R T I C I P A T I O N

In preparing this study we used the sociological perspective of structur-alism to examine the complex phenomenon of citizen participation indisability policy development. The broad view of structure that weadopted proved to be relevant as it allowed the exposure of importantstructural barriers that were not evident in the literature. There wasample information available in the study cases about structural condi-tions for citizen participation, much of which was received unsolicitedfrom respondents, although it was at times difficult to substantiatethese data. Simultaneously, respondents offered views on their policyparticipation that could be interpreted from the perspectives of per-sonal empowerment or satisfaction and group interaction dynamics,although these were not fully explored. A comprehensive study ofstructural and non-structural factors in policy participation would beuseful to further examine the links between structure and agency.

At this time, the further development of structural models of policyparticipation is needed in order to assist researchers in exploring prac-tical and theoretical issues in this field. We have posed a number ofpreliminary hypotheses that can be elaborated through social changetheories and inserted in these models. Models may then be used forthe prediction of success in policy participation and perhaps to informthe development of new participatory mechanisms.

Although a case study approach was useful in identifying structuralfactors 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 fu-ture research on policy participation be conducted with methodolo-gies that are generalizable to a variety of settings and can thus providemore ample theoretical explanations. Finally, it is crucial that the so-cial change outcomes, or long-term effects, of policy participation beexamined through longitudinal studies. This future research agendawill require both qualitative methods and valid and reliable survey in-struments, some of which may be developed from the factors identi-fied in this study.

I M P L I C A T I O N S F O R P O L I C Y D E V E L O P M E N T

We were impressed that, in spite of the moderate success achieved bythe disability organizations in these cases of policy making, respon-dents were receptive to this study and interested in learning moreabout policy participation. Their ideals about participatory principleswere still strong, although they expressed particular concerns abouthow to access policy communities and networks and how to prevent co-optation in light of significant power and resource inequities betweenpolicy participants. Our findings lead to a number of strategic recom-mendations for strengthening the participation of disability organiza-tions in policy development, which are applicable to both the state andthe disability community and may modify certain structural factorsidentified as obstacles in this study. These recommendations aregrouped according to their audience - policy makers or disability orga-nizations. More practical suggestions may need to arise from consumerorganizations themselves, in consultation with advocacy organizationsfor other disadvantaged persons.

For Policy Makers:

Policy Coordination The Canadian federal form of governance isintended to provide some coordination of national and provincialhealth and social policies, although this coordination is decreasingwith diminishing federal fiscal responsibility in the area. The currentoverlap and confusion of responsibilities for disability policy needs tobe resolved so as to allow a more appropriate concentration ofdisability advocacy efforts. An ultimate strategy would be to shiftdisability from being a sectoral concern (such as health, education,and welfare) to being a cross-cutting theme in all ministries, as is thecase with gender, environment, and poverty policy. The equalinvolvement of disability organizations should be a fundamentalcondition of fora for disability policy making. To achieve the


legitimacy that this status represents, the state's current emphasis ondisability organization structures that promote accountability and"representativeness" over "representation" should be revised.

Resource Allocation Policy development that is intended to address theneeds of disadvantaged groups such as persons with disabilities is along-term task. Funding policies must allow sufficient resources toincrease the actual participation of grassroots community leaders andto maintain the viability of community organizations over prolongedperiods of time. Such an approach, however, runs counter to the short-term commitment of government funding in this area.

Special supports must be provided to enhance the effectiveness ofthe participation of citizens with disabilities. Training in participationand group management skills for community leaders should be a pri-ority, along with developing leadership skills. Access costs (interpreta-tion, translation, attendant care, transportation) should be treated aslegitimate expenses of participation, but the need for them should bedocumented clearly and the implementation of such supports shouldbe evaluated fully (Broadbent 1999).

Roles of Professionals and Consumers Cooperation between persons withdisabilities and other non-state actors is fundamental in policy makingin the disability sector, which is affected significantly by professional,bureaucratic, and service agency priorities. Some professionalsdemonstrate that they have a genuine interest in the participation ofdisability organizations in policy development. Indeed, an increasingnumber of persons with disabilities are entering professional careers,although the resulting dual roles can occasionally cause conflict(Boyce 1999). Considering professionals' prevailing influence, whichis likely to persist in dealing with physical or mental impairment andfunctional aspects of disablement, professional organizations shouldcontinue to be involved through a more equal partnership withdisability organizations in policies that are relevant to these functionalconcerns. In the area of social handicap, or social participation as ithas become known in the new international disability classificationsystem (WHO 1997), professional agencies should accede to theinsights of disability organizations.

For Disability Organizations:

Policy Education and Strategy Development Disability organizations andtheir 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 onthe agenda, formulation, and implementation). Having a clear graspof these fundamentals would help organizations to decide on the mosteffective tactics and alliances, and whether to act as insider, outsider, orthresholder organizations. For example, if an organization wants to beinvolved in all of the stages of policy development, starting at the firststep of getting an issue on the agenda, then they may need to avoidalienating officials and embarrassing the government, as an outsiderorganization might do. Alternatively, organizations could publiclypressure the government, but once the issue is on the agenda try toswitch to being a partner with government. Maintaining an entirelyadversarial position throughout the entire process of policydevelopment may not be fruitful.

Organizational Structures and Control The marginalized disabilitycommunity has a difficult task in balancing the needs of individualmembers with those of a transformative political agenda that requiresa disciplined mature organization willing to make compromises. Agrassroots focus may not be possible at all levels of an organization.However, organizational control by consumers through membership-based governance models must be a condition of their participationand should be self-monitored by the disability community.Simultaneously, more efficient methods of internal communicationsneed to be developed within disability organizations to allow theirrepresentatives to determine the group consensus on policy issues andnot be limited to representing their individual views in policy fora.

Policy Networks and Advocacy Disability organizations should overcometheir reluctance to engage, and form alliances with, able-bodied actorsin the policy arena. The leadership of disability organizations in apolicy network would allow disability perspectives to become morewidely known and illustrate their similarities with those of othermarginalized groups. Advocacy organizations should use the multipleforms of citizen participation that are available - direct forms (interestgroups, face to face, lobby groups) and indirect forms (voting,campaigning for candidates or parties, joining political parties) - toachieve their goals. There should also be an increased emphasis on theuse of alliances and networks in policy development to allow a focus onthe broader social-structural determinants of health (for example,gender, environment, and poverty) that affect both persons withdisabilities and able-bodied alike. The potential of internationalalliances 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 sincethese bodies often have a stronger influence on the federalgovernment. These organizations can provide tactics, resources, andadvocacy as well as moral authority, especially since the federalgovernment is signatory to international conventions such as the UNStandard Rules on Disability.

Notes

I N T R O D U C T I O N

i Disability terminology has historically been used to focus on the impair-ment (for example, blind man) rather than the person (man with limitedvision). Disability organizations have preferred that the term "people withdisabilities" be used, as it keeps the focus more appropriately on the per-son. However, this convention varies by location. For example, disability ad-vocacy groups in the United Kingdom support using "disabled persons" todenote the disabling effect of society on individuals with impairments.In this volume, we use the standard North American term "people withdisabilities."

C H A P T E R O N E

1 The history of the asylum movement in Canada followed closely on theAmerican experience. The numbers of individuals housed in institutionsgrew throughout the first half of the twentieth century and began to de-cline only in the 19608.

2 The term "Workmen's Compensation" was used in most Canadian legisla-tion until the i g8os.

3 The Ontario model influenced the subsequent development of legislationin other Canadian provinces. There is no historical record that workerswith disabilities were involved in the lobbying activities of labour unions forthis early legislation.

172 Notes to pages 16-44

4 During the 19708, recognizing the impact of aging on veterans with disabil-ities, the association successfully lobbied the government to establish theVeterans' Independence Program ( V.I.P.) to ensure that veterans with dis-abilities could remain in their own homes as they grew older. This programoffers the most comprehensive range of services and benefits for olderadults in Canada.

C H A P T E R T W O

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

C H A P T E R T H R E E

1 In addition, the "Hays-Joyal Committee," or the Special Committee of theHouse of Commons on the Disabled and Handicapped, was created in1980 to consult with disability rights groups about social policy. SeeBickenbach, "Equality Rights and the Physically Handicapped,"332-41 for an overview of the events between 1980 and 1982, in Bayefskyand Eberts 1985.

2 The overview presented here is indebted to Russell 1993, chap. 7; Romanowet al. 1984, chap, i; and Simeon and Banting 1983, introduction.

3 (Romanow et al. 1984, i) Russell errs when he writes that it would "takethe election of the Parti Quebecois to power in Quebec in November of1976 to quick-start another round of mega constitutional politics" (Russell1993,92) because this statement falsely suggests that nothing was going onwith respect to constitutional negotiations prior to the Parti Quebecois'srise 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 proc-lamation and its similarity with the Victoria Charter.

8 According to Romanow, the agreement on these issues was later reaffirmedat a First Ministers' conference in Regina in 1978, despite the federal


government's dissatisfaction with these decentralizing proposals(Romanow 1984, 10).

9 University of Toronto. Options Canada Toronto: University of TorontoPress, 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 theright to live anywhere a citizen desires in Canada.

13 See Russell 1993, 101-15 andRomanow 1984, 13-22 for fuller discussionof the constitutional conferences.

14 See Romanow 1984, 24-54 for a review of the contents of this draft. Withrespect to the Charter of Rights and Freedoms' proposals central to thefederal government, there was no mention of equality rights for specificgroups. Indeed, according to Romanow, the overriding concerns were offi-cial language and minority education rights (43-5). Moreover, the final re-port of the Pepin-Robarts Task Force, "A Future Together," which wasreleased in January 1979, did not express views on additional rights of free-doms, or mention equality rights for specific groups.

15 Russell 1993, 114. See Sheppard and Valpy 1982, for an overview of advo-cacy group activity in this context.

C H A P T E R F O U R

1 The authors interviewed eight persons in Winnipeg and Toronto to gatherinformation 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.


19 Simpson, lojune 1995.20 Peters, 12 June 1995.21 McCormick, 14 August 1995.22 Dirkson, njune 1995.23 Lepofsky, interview, 2 September 1995.24 Ibid.25 Peters, 12 June 1995.26 Lepofsky, 2 September 1995.27 Ibid.28 Peters, 12 June 1995.29 Lepofsky, 2 September 1995.30 Simpson, lojune 1995.31 McCormick, 14 August 1995.32 Peters, 12June 1995.

C H A P T E R F I V E

1 The authors interviewed nine persons from Winnipeg, Toronto, andKingston for this case study.

2 In addition, on 25 July 1990, a group of independent MPS in thefederal government announced the formation of the Bloc Quebecois,the goal of which was to act in Parliament in the interests of a sovereignQuebec.

3 We are indebted to Russell (1992) and Reid (1991) for their analyses ofevents 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 inKallen (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 andDAWN Toronto (DisAbled Women's Network), Disabled Peoples' State-ment on Constitutional Clause. (8 June 1990).

8 See also Watts 1992, 10.9 The committee noted that it also heard from other individuals with disabil-

ities including deaf Aboriginals, deaf-blind people, people with develop-mental disabilities, women with disabilities and people with physicaldisabilities. Select Committee on Ontario in Confederation 1991. 21.

10 The brief referenced previous documents from: David Baker, of theAdvocacy Resource Centre for the Handicapped, and the Coalition ofProvincial Organizations of the Handicapped Position Paper onConstitutional Challenge (August 1991); McLellan, A., (May, 1991) Women


and the Process of Constitutional Reform . Alberta Advisory Council onWomen's Issues; and R. Weiler, (March, 1991) Canadian Council on SocialDevelopment: Social Rights Strategy.

11 Report of the Special Joint Committee on a Renewed Canada (Ottawa: Supply andServices 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 NovaScotia, Don Getty, premier of Alberta, Mike Harcourt, premier of BritishColumbia, Roy Romanow, premier of Saskatchewan, Frank McKenna, pre-mier of New Brunswick,

22 See also press releases from provincial organizations: Ontario March ofDimes, (1992); Saskatchewan Voice of the Handicapped, (1992); and Globeand Mail, (22 October 1992); Winnipeg Free Press, (26 October 1992).

23 Interview with L. Beachall, (8 June 1995) 7.

C H A P T E R S I X

1 Patrick Worth, Co-Chair of the Ontario Advocacy Coalition and PastPresident of People First Ontario speaking before the Ontario StandingCommittee on the Administration of Justice, 20 February 1992(Hansard j-iggq).

2 The authors interviewed seven persons in the Toronto area who had beenactive in this policy issue.

3 A power of attorney involves the designation of a proxy, a trusted individualor group of individuals who are to make decisions for a person after he orshe becomes incompetent. It is one kind of advance directive. Another is theliving will, a document whereby a person, when competent, issues more orless specific instructions as to what kinds of treatment or care he or shewishes to have, under certain conditions, when he or is no longer competentto decide. These two forms of advance directive can be combined: a personcan 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 amoderate to severe mental or physical disability, illness or infirmity,whether temporary or permanent and whether actual or perceived (a) isunable to express or act on his or her wishes or to ascertain or exercise hisor her rights, or (b) has difficulty in expressing or acting on his or herwishes 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 igg4-8 Spindell, Trish, interview, 24 May igg5, 3.g Ibid., 4.

10 Cole, Audrey, interview, 15 July igg5-11 LeBlanc, 6.12 The act now reads, "people perceived to have a disability."13 See Bill 74, sections 17(1) and (2), and ig( 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 legallysanctioned advance directive that comes into effect when someonebecomes 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 complainedabout their lack of consultation in the presentation they made to theStanding Committee in March iggz. LeBlanc also suggested that the OMAwas shut out of consultations at this time (Interview, 13 April iggs).

C H A P T E R S E V E N

1 The authors interviewed twenty-three persons, primarily from Vancouverand Victoria, for this case. The number of interviews was higher than inother cases, as the policy process was in full swing at the time of interview-ing. The authors also attended coalition meetings and briefly interviewed anumber of people in attendance.

2 Doherty et al. (i gg3) say that this legislation is based on the ImperialLunacy Act of 18go which can be traced back to the lunacy laws of EdwardII of England, in which the Crown took charge of the property of thosewho could not look after it for themselves.


3 Alberta had reviewed and amended its Adult Guardianship legislation in1982.

4 Etmanski later became Executive Director of PLAN (Planned LifetimeAdvocacy Network), an organization that helps parents of children withmental handicaps to work out plans for the future of these children whenthe parents can no longer take responsibility for their care. In working onAdult Guardianship legislation, however, he defined himself as a parent ofa child with Down's Syndrome rather than as a professional social workerand agency manager.

5 This committee consisted of two representatives of the Office of the PublicTrustee, two from the Ministry of Health, and one from the Ministry of theAttorney General. The terms of reference of this committee were: a) tothoroughly research the relevant issues, drawing upon the work and experi-ence of groups and individuals within the province and from other jurisdic-tions; b) to develop a working paper identifying issues and principles onwhich these issues should be addressed and a framework to address issuesand develop solutions for review with Deputy Ministers of Social Services;c) to seek public input on issues and possible program, policy and legisla-tive solutions through a public review process approved by the DeputyMinisters; d) to develop a report for review by the Deputy Ministers ... andCabinet Committee on Social Services which recommends program, policyand legislation changes; e) to report recommendations and prepare an im-plementation 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 interven-

tion;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 acces-

sible; 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;


3 a process for initiating more substantial interventions through needs andcapacity assessments.

Next, using Quebec's three-tier model of court interventions, to determineone 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

11 The Framework Document developed the ideas that had been underdiscussion 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.12 Government Representatives: Myrna Hall, Public Trustee; Gerrit Clements,

lawyer, Attorney General's Department (Government's legal advisor onhealth matters); Garry Curtis, Chairman of Mental Health Act Review Com-mittee and Executive Director Policy Planning and Legislation, Ministry ofHealth; Mark Perry, lawyer, Office of the Public Trustee.PRAG Representatives: Rob Gordon, criminologist, professor at SimonFraser University; Al Etmanski, social worker, BCACL executive director (fa-ther of daughter with mental disability), Pearl Mackenzie, executive direc-tor, North Shore Community Services, elder abuse expert, Chloe Lapp,coordinator, PRAG office.

13 Although Al Etmanski is a social worker by training he defines himself asthe father of a daughter with Down's Syndrome. Managers of communityagencies were not defined as professionals in the sense used above.

14 The community representatives saw the following as alternatives to thePublic Trustee's services:alternative support networks - advocacy and other support services;pre-planned services; clarification of the law relating to substituteconsent to health care and the use of temporary substitute decisionmakers.

15 Gordon and Verdun Jones (Gordon and Verdun-Jones 1992-94) have de-scribed the form that the implementation stage in British Columbia took inearly 1994 after the participants had begun to recover from the implemen-

179 Notes to page 115

tation conference debacle. They delineated the fundamental principles ofreform in Adult Guardianship legislation as follows:The legal and social relationship known as guardianship is an extremeform of interference in the life of an adult and should be used only as a lastresort. It should involve the least restrictive, intrusive, stigmatizing, and dispower-ingmode of intervention necessary to meet an adult's needs, which reflects anadult's wishes to the maximum possible degree. The need for intervention,the level and form of intervention and an adult's wishes should be ascer-tained through a multi-disciplinary capacity and needs assessment. If the needexists the adult should be assigned by a competent and caring individual oragency, under a clear duty to follow a prescribed philosophy and fulfillprescribed tasks, appointed following a procedure consistent with theCharter of Rights and Freedoms in an accessible, helpful, friendly, but rigorousforum. 6-38. This set of interlocking assertions attracted widespread sup-port and reflected a reasonably unified vision of new guardianship legisla-tion and systems.

Gordon and Verdun-Jones also set out the potential choices in imple-menting new guardianship legislation. They suggested that there is a con-tinuum between a strictly legal and a more flexible social work model ofintervention. This continuum focuses on the difference between juridicaland physical needs. The intervention may be reactive or proactive.

16 The purposes of the Coalition to Implement Adult GuardianshipLegislation were as follows: to be a vehicle for the people immediately andcritically affected by Guardianship Legislation; to protect the vision andprinciples associated with the community mission; to ensure a communitybuilding focus on all relevant issues of implementation of guardianshiplegislation; to represent community-defined interests with government; topromote community-based alternatives to formal guardianship structures;to ensure the independence of the evaluation process; to enable citizeninvolvement in policy making with government; to facilitate the develop-ment of a framework for the independent evaluation of the adult guardian-ship system.

17 The Coalition criticized the existing system in the following terms: It is ar-chaic in its attitudes (for example in assuming that the state has a betterunderstanding of the "best interests" of vulnerable citizens than families orfriends); it is an intrusive form of intervention; it takes an all or nothing ap-proach; it protects the estate rather than the person; there is inadequateprovision of personal care by the Public Trustee's office when the Trustee isthe guardian; it is not good at assessing mental incompetence; instrumentsare inadequate, settings for doing the testing are not properly considered,court proceedings are complex and costly; nor do procedures seem to befair; the provision of mental health services has completely changed but anew relationship between mental health legislation and guardianship has


not yet been worked out; there is little forward planning (though BritishColumbia is the only province where a guardian can be nominated in ad-vance) ; there are no specific rules about conducting the guardianship roleand no plans have to be submitted; finances only are audited; health caresubstitute decision making (to ensure informed consent) is unresolved;abuse and neglect are ill-defined; there have been changes in HumanRights legislation, but guardianship has not yet been challenged.

18 PRAG had been anxious to maintain its independence from governmentfunding and had raised money from other sources. But after the legislationwas passed the Coalition sought public funding and was able to get admin-istrative funding in a special grant from the Attorney General while theOffice of the Public Trustee provided conference and project funding untilMarch 1996.

19 Several of these resigning members were reappointed as consultants to theOPT.

20 The new Public Trustee, who was recruited from outside the provincial bu-reaucracy, was an experienced manager of volunteer organizations whohad worked at the British Columbia Neurological Institute and, earlier, atBCACL.

21 The Report on Representation Agreements said: "It is clear from theworkshops that the community supports the idea of RepresentationAgreements. However, if they are to be used they need to be accessible, thatis, simple, flexible, inexpensive and responsive to a variety of individualneeds. The new law emphasizes the importance of self-determination,supported decision making and the least intrusive means of support. Theworkshop participants felt strongly that these principles should continue toguide future discussion of unresolved issues and the implementation pro-cess" (Coalition 19940, 11).

22 The Coalition suggested that a partnership agreement should be based onthe following principles: equal access to information; shared decision mak-ing; shared accountability and responsibility; regular and independentevaluation 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 imple-

mentation period, to identify the commitment and abilities of organiza-tions, individuals, and government ministries to assume leadership forpriority implementation areas; and to develop sustainable structures forpartnership and coordination of the activities of implementation.

26 This approach emphasizes: a phased-in implementation, rather than pilottesting; decentralized planning and service delivery; community control;use of a community development process; independence from the Office


of the Public Trustee; and maintenance of the original vision of the "HowCan We Help?" document.

27 BRITISH COLUMBIA GUARDIANSHIP LEGISLATION The British Columbiaguardianship legislation is best understood as an integrated package of stat-utes. The most significant difference between the new legislations in On-tario and British Columbia is with respect to advocacy. Although the BritishColumbia legislation makes provision for advocacy and rights advice, thereis no equivalent to the Ontario Advocacy Act and, therefore, no provisionfor an organized province-wide advocacy system. Nonetheless, a system ofcommunity driven policy implementation may achieve the same goal of re-duced bureaucratic influence in the lives of persons with disabilities.

The Representation Agreement Act This Act repeals those sections of thePower of Attorney Act that create enduring powers of attorney and replacesthem with a new and vastly expanded scheme of preplanned personal rep-resentation in the event of mental incapability. Representatives may benominated and empowered to make the full range of personal and health-care decisions and to manage a person's financial affairs, property, andassets (ss. 2-11). Agreements must be executed in writing and registered inorder to be valid (ss. 13 and 14). A person empowering a representativemay specify an event or events that will trigger an agreement and may nom-inate a monitor to oversee the activities of a representative (ss. 12 and 15).Representatives are placed under a set of statutorily prescribed dutieswhich, in the main, reflect the common-law duties of agents and trustees(ss. 16 and 17). The Act makes provision for changing and revoking agree-ments and for a system of objection and mediation in the case of concernsand disputes about the way in which a representative is acting (ss. 27-30).The newly created Office of the Public Guardian and Trustee (previouslythe Public Trustee) is responsible for providing assistance, advice, and me-diation, 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 court-ordered guardianship, and Part 3 which provides for intervention in abuseand neglect cases. The other parts (i and 4) contain a variety of proce-dural, transitional, and consequential provisions. Part 2 provides for re-views of need and assessments of incapability in the case of adults (personsnineteen years of age or older) who are believed to be in need of a decisionmaker or guardian, the procedure for applying to the court for the ap-pointment of decision makers or guardians, and the types of orders thatcan be made by the court. A distinction is drawn between associate decisionmakers, substitute decision makers, and guardians. The areas of power andauthority that can be given to a decision maker or guardian by the court


are prescribed in the Act (along with limitations), as are the duties and re-sponsibilities of a decision maker or guardian. Orders are subject to peri-odic review and the court may remove or replace a decision maker orguardian for cause. Provision is made for a streamlined process for chang-ing and terminating orders where there are no objections. There are manyother related provisions including those dealing with the resealing of or-ders made in other jurisdictions.

Part 3 is the approximate equivalent of the adult protection legislationfound in the Atlantic provinces. This Part provides for intervention incases where people with mental or physical disabilities are experiencingabuse or neglect (including self-neglect). The reporting of abuse andneglect cases is voluntary but, where reports are received, they will beresponded to by designated community organizations empowered toconduct investigations. Any intervention is to be gradual (except inemergencies) and based upon the provision of voluntarily received sup-port, assistance, and services. If this kind of help is needed but not ac-cepted and the adult is mentally incapable of making such a decision, theProvincial Court may order that services be imposed for short periods oftime (up to six months). Orders may include provisions restraining theactivities of persons responsible for abuse.

The Public Guardian and Trustee Act This Act repeals and replaces the Pub-lic 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 advi-sory board (ss. 2-4). The Act sets out the powers, duties, and functions ofthe Office which include urgent and non-urgent investigation powers withrespect to trusts, decision makers, guardians, and representatives (ss. 5-7and 17-19). The jurisdiction of the Public Trustee with respect to infants,mentally incapable adults, and deceased estates is not changed. The Actprovides for a variety of accounts, funds, and investment powers related tothe operations of the Office (ss. 8-16, 23 and 24). It establishes an invest-ment advisory committee (s. 10). There are a variety of other provisionsdealing with audits, accountability, and evaluations (ss. 22 and 25-27).

The Health Care (Consent) and Care Facility (Admission) Act Like its proposedOntario counterpart (Consent to Treatment Act, supra) this Act is a sweep-ing and long overdue consolidation of the law with respect to consent tohealth care and residential care. It applies to persons nineteen years of ageor older. Part 2 modifies and codifies both customary practices and thecommon law of consent, sets out the test of incapability to consent, anddetails what a practitioner is to do if a patient needs health care but isincapable of giving consent (ss. 4-15). Provision is made for emergencytreatment without consent (s. 12). The duties, powers and general


responsibilities of a substitute decision maker are detailed, as is the proce-dure for selecting a decision maker (e.g., a patient's representative or anear relative) (ss. 16-19).

Part 3 of the Act modifies and codifies customary practices with respectto the admission of adults to a wide variety of "care facilities." It details thesteps to be taken by care facility operators in the event that an adult refusesto 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 andreview objections to decisions made by health practitioners (e.g., with re-spect to a patient's capability to give or refuse consent) and related matters(ss. 27-32).

C H A P T E R S E I G H T , N I N E , A N D T E N

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

Appendix

Interviewees

Interviewee Organization

Francine Arseneault

David Baker

Laurie Beachall

Don Beddows

Patty Bregman

Gerrit Clements

Audrey Cole

Gary Curtis

Jim Dirkson

Al Etmanski

Orville Endicott

Dot Ewen

Marguerite Ford

Steve Fram

Patricia Fulton

Christine Gordon

COPOH,CCD

ARCH

C O P O H , C C D

BCACL

ARCH

B.C. Attorney General Office

OACL

B.C. Social Services/Housing

COPOH

BCACL

CACL, OACL

B.C. Office of Public Trustee

Vancouver Health Board

Ont. Attorney General Office

SRRS

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 ofService Providers, 91-4,96, 102-6

Adult Protective ServiceWorker program, 88

advocacy, 20, 25, 48, 89,151—4; Advocacy Com-mission, 89-94, 100,104—7; Ontario AdvocacyAct, 85-107; and policy,157-8; prescribed, 116

Advocacy Resource Centrefor the Handicapped,(ARCH) 80-1, 87, 94-5,98-101, 106, 141

AIDS Action Now!, 99, 101Alberta Premier's Commis-

sion on the Constitu-tion, 71, 73

Alzheimer Association: ofBritish Columbia, 117,n 8, 120; of Ontario: 97

Arsenault, Francine, 79- 80asylums, 11

Baker, Captain Eddie, 14,*5

Baker, David, 61, 81, 95,101

Baker, Wendy, 113

Beachall, Laurie, 79-80, 83Beaudoin-Dobbie Report,

? i > 7 4Beaudoin-Edwards Com-

mittee, 71, 74Belanger-Campeau Com-

mission, 67, 71Bill C-6o, 45Birrell, Margaret, 119Blind Organization Offer-

ing Self-help Tactics(BOOST), 129, 153

Boyd, Eric, 75British Columbia Associa-

tion for Community Liv-ing, 109, 117

British Columbia Coalitionof People with Disabili-ties, 81,117

Cairns, Alan, 38, 48, 70Canada Assistance Pro-

gram, 68-9, 83Canada Clause, 71, 74-82,

133Canadian Association for

Community Living, 78Canadian Association for

the Mentally Retarded,

Canadian Charter of Rightsand Freedoms, 38-48,49-65; in education,12

Canadian Disability RightsCouncil, 69, 79

Canadian Hearing Society,125-6

Canadian IndependentLiving Association, 78

Canadian National Insti-tute for the Blind (CNIB) ,15,52,56, 125-6

Canadian ParaplegicAssociation, 16, 78, 153

Canadian PensionersConcerned, 95

Canadian RehabilitationCouncil for the Disabled,141

Canadian TuberculosisVeterans Association, 14

Cassidy, Harry, 15, 17Charlottetown Accord,

66-84Chretien, Jean, 52-4, 61-3,

83.139circles of support, 111, 123Citizens' Forum on

Canada's Future (SpicerCommission), 71-252

204 Index

civilian programs, 15-17, disablement: definition of,

Clark, Joe, 47, 73-6, 79-81,133

Coalition for HumanRights for the Handi-capped, 135

Coalition of ProvincialOrganizations of theHandicapped, (COPOH)20, 52,54-9, 59-65, 76-84, 141

Coalition to ImplementAdult Guardianship Leg-islation, 115-19, 123

Cole, Audrey, 101-2, 106Concerned Friends of On-

tario Citizens Living inLong-Term Care Facili-ties, 87,94, 95, 98,100-1

consent to treatment, 91,103

Co-ordination of Rehabili-tation Services Act, 18

Council for the Guidanceof the Handicapped, 17

Council of Canadians withDisabilities, 20, 83, 136,141

Counsell, Lieutenant John,16

Crombie, David, 53

deinstitutionalization, 85-7democracy, 28-9; participa-

tory, 29; representative,28

Department of Soldiers'Civil Re-establishment,14

Department of VeteransAffairs, 15-18; CasualtyRehabilitation Section,16, 17

Derkach, Lynda, 117Dinsdale, Walter, 51, 53Dirkson,Jim, 52, 55-8, 61Disabled Persons Act, 13,19Disabled Persons Allow-

ance Act, 18DisAbled Women's

Network, 69, 81, 153

Dunlop, Captain Edward,16, 17-18

education, 1 1—12, 21Endicott, Orville, 94-5,

106Etmanski, Al, no, 113,

121, 123Ewen, Dot, 116-17

Fram, Steve, 87-9, 98-9

Gabelmann, Colin, 115Giuffrida, David, 95, 101Gordon, Christine, 115,

1 19—20, 123Gordon, Rob, 1 1 1-13, 117,

121guardianship, 87, 108-10

Hall, Myrna, no, 113, 116,122

Handicap Action GroupIncorporated, 19

Harmen, Mae, 95Harris, Mike, 103Hays-Joyal Committee, 47,

48,51-4,60-3Heagerty Report, 1 7housing, 21

Independent Living,19-20, 126, 152

interest groups, 83; re plu-ralism, 33, 163; theory

of. 33-4' 107. 137. M0;typology of, 146-7

Inter-Ministry Committee:British Columbia,1 10-12, 1 15

International Year of Dis-abled Persons, 20, 51

Joint Working Committee:British Columbia, 112,

Kanary, Ron, 52, 57Kelman, Reverend John, 14Kendall, David, 101

Kendall, Joseph, 90, 95,H7

Lambert, Reverend Sydney,

HLamontagne/MacGuigan

committee, 46Lapp, Chloe, 118LeBlanc, Barb, 97, 103Lepofsky, David, 52-3, 56,

61-4, 126Lightman, Ernie, 86, gologic: of influence, 161; of

membership, 160-1

Mackasey, Bryce, 54Malkowski, Gary, 72, 98-9,

106Manitoba League for the

Physically Handicapped,

!7>i9. 55. 74. 8o

Marsh, Leonard, 15, 17McCormick, Shawn, 57,

59-62, 64McGrath, James, 53McGregor, Carol, 80Medical Rehabilitation

Grant, 18Meech Lake Accord, 66-71Mental Health Act, 113,

120Mulroney, Brian, 66, 69

National Action Committeeon the Status of Women(NAC), 79, 81, 136

National Council of Veter-ans'Associations, 16, 19

Obstacles, 20, 51Office of the Public Trustee,

no, 114, 116, 121Ontario Advocacy Coali-

tion, 94-6, 98-106, 138Ontario Association for

Community Living, 87,94,138

Ontario Attorney General,87-9

Ontario Friends of Schizo-phrenics, 91, 97—8, 103,106—7

17-19 10

115

205 Index

Ontario March of Dimes,68-9

Ontario Medical Associa-tion, 91,97, 103, 131,

!34> 139Options Canada, 45O'Sullivan, Father Sean,

89-9°' 92> 98

Parliamentary SpecialCommittee on theHandicapped, 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 Forceon Canadian Unity, 44

Persons United for Self-Help (PUSH), 20, 55, 80,128, 153

Peters, Yvonne, 52, 57—60,62-5, 79

Planned Lifetime Advo-cacy Network, 118

policy: definition of, 5;communities, 162; net-works, 162-4; and partic-ipation, 158-60

political economy: theoryof, 34-6

power dependence, 163

Power of Attorney Act, 109Project to Review Adult

Guardianship (PRAG),110-15, 118-23

Psychiatric Patient Advo-cate Office, 95, 100

Rae, Bob, 80, 93-4, 100Remple, Stan, 117representation, 149-51,152representativeness, 149-51resource: dependency, 64,

96; mobilization theory,32, 130, 133

Reville, David, 90, 94Robinson, Svend, 53-4Romanow, Roy, 42, 44, 46Russell, Peter, 40, 45, 47

Secretary of State, 20Select Committee on On-

tario in Confederation,

72,75Simpson, Alan, 55, 58, 64Sir Arthur Pearson Associa-

tion, 14, 22Smith, Bud, no, 115Smith, David, 51social movements, 4, 64;

theory of, 32-3, 153-4Spindell, Irish, 95, 100-2state autonomy in policy

making, 156-7state capacity in policy mak-

ing. 157sterilization, 86-7substitute decision mak-

ing, 91, 102, 105

theories of participation,30-6; community organi-zation, 30—2; interestgroup, 33-4, 163; politi-cal economy, 34-6; socialmovement, 32-3, 124,

133' !39> H4Trudeau, Pierre Elliott,

40-1,45,47,60

United HandicappedGroups of Ontario, 55,128

Verdun-Jones, Alan, 114veterans' programs: World

War 1,13-15; World War

",15-17Vickers, David, 52Victoria Charter, 40-1Vocational Rehabilitation

of Disabled Persons pro-gram, 18, 68-9, 83

vocational retraining, 14, 21

War Amputations Associa-tion, 14

Watts, Ronald, 71Whitton, Charlotte, 17Wood, L.M., 15, 16workers' compensation, 11,

12-13Worth, Patrick, 95-6, 98,

102

Young, Neil, 53, 62

Ziemba, Elaine, 92-3

a seat at the table: persons with disabilities and policy making

Documents