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A Seat at the Table
Persons with Disabilities and Policy Making
The Canadian Charter of Rights and Freedoms has been used to strike
down fifty-eight statutes that permitted the exclusion of persons with
disabilities, women, ethnic minorities, or gays and lesbians. While
some conservatives see this trend as "rulings for the many by the few,"
those representing excluded groups view their successful court chal-
lenges against unjust laws as a long-awaited coming of age, allowing
them to finally obtain a seat at the table.
A Seat at the Table documents the participation of disability activists
and organizations in public policy making in Canada. The authors
combine studies of contemporary federal and provincial policy making
with a historical perspective on the progress made by disability groups
since World War I. The cases they discuss illustrate the tension between
issues of human rights and personal capacities that the disability move-
ment must deal with, but which have implications for other groups as
well. An analysis of contemporary social policy networks in Canada
makes it possible for the authors to suggest reasons for the inconsistent
success that disability organizations have had in translating their 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 it
provides 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 at
Queen's University. MARY TREMBLAY is associate professor of rehabili-
tation science at McMaster University. MARY ANN MCCOLL is professor
of rehabilitation therapy at Queen's University. JEROME BICKENBACH
is professor of philosophy and law at Queen's University. ANNE
CRICHTON is professor emerita of health care and epidemiology at the
University of British Columbia, j. STEVEN ANDREWS is consultant for
Queen's University. NANCY GEREIN is a lecturer at the Nuffield
Institute for Health at the University of Leeds. APRIL D' AUBIN is a 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 Press
Montreal & Kingston • London • Ithaca

McGill-Queen's University Press 2001
ISBN 0-7735-2180-1 (cloth)
Legal deposit fourth quarter 2001
Bibliotheque nationale du Quebec
Printed in Canada on acid-free paper
This book has been published with the help of a grant from the
Humanities and Social Sciences Federation of Canada, using funds
provided by the Social Sciences and Humanities Research Council
of Canada.
McGill-Queen's University Press acknowledges the financial support of the
Government of Canada through the Book Publishing Industry
Development Program (BPIDP) for its activities. It also acknowledges the
support of the Canada Council for the Arts for its publishing program.
Canadian Cataloguing in Publication Data
Main entry under title:
A seat at the table: persons with disabilities and policy making
Includes bibliographical references and index.
ISBN 0-7535-2180-1 (bnd)
i. Handicapped - Government policy - Canada, I. Boyce, William
JL86.P64S42 2001 362.4'o4561'og71 000-901692-9
This book was typeset by Dynagram Inc. in 10/12 Baskerville.

Contents
Glossary of Organizations in this Study vii
Paternalism or Participation? 3
1 From Asylum to Independent Living:
Disability Policy Making, Past to Present 10
2 Theoretical Frameworks for Citizen Participation:
Contextualizing the Case Studies 23
3 Constitutional Ferment: Proceeding to Patriation 38
4 The Canadian Charter of Rights and Freedoms:
The Political Battle over Four Words 49
5 The Charlottetown Accord: Post-Patriation 66
6 The Ontario Advocacy Act: Representing Persons with
Intellectual Disabilities 85
7 Adult Guardianship Legislation in British Columbia:
Reform and Restructuring through Community
Participation 108
8 Themes in Disability Policy Participation 124
9 The Potential for Influencing Policy 145
10 Recommendations for Research and Strategy 166

vi Contents
Notes 171
Appendix 185
References 187
Index 203

Glossary of Organizations
in this Study
ARCH Advocacy Resource Centre for the Handicapped
BCACL British Columbia Association for Community Living
BIA Brain Injury Association
BOOST Blind Organization Offering Self-help Tactics
CACL Canadian Association for Community Living
CAILC Canadian Association of Independent Living Centres
CCD Council of Canadians with Disabilities
CDRC Canadian Disability Rights Council
CHS Canadian Hearing Society
CNIB Canadian National Institute for the Blind
COPOH Coalition of Provincial Organizations of the Handicapped
CPA Canadian Paraplegic Association
CPC Canadian Pensioners Concerned
CRCD Canadian Rehabilitation Council for the Disabled
DAWN DisAbled Women's Network
LEAP Legal and Educational Advocacy Project
OAC Ontario Advocacy Coalition
OACL Ontario Association for Community Living
OMA Ontario Medical Association
OFS Ontario Friends of Schizophrenics
PRAG Project to Review Adult Guardianship
PUSH Persons United for Self-Help
SRRS Seniors Resources and Research Society

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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 with
concerns for defining the capacity of individuals to make fundamen-
tal life decisions.
Members of the disability community find themselves in the middle
of this tension and are often forced to adapt their focus. At the same
time, interests of others (parents, families, professionals) may lead to
radically different perspectives on policy issues. The result is a complex
policy environment with a strong measure of impassioned debate. This
book explores that environment principally from the perspectives of
persons with disabilities and organizations advocating on their behalf.
Two sets of federal and provincial policy initiatives are used in this
book to illustrate this tension.
The team for this study included the Council of Canadians with
Disabilities as a full research partner, along with academics from three
universities (Queen's, McMaster, University of British Columbia) in
disciplines varying from law, philosophy, history, and sociology to reha-
bilitation science and epidemiology. The diversity of the team allowed
us 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 and
members; and to federal and provincial government officials. It also
offers material appropriate for courses in disability studies.

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A Seat at the Table

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Paternalism or Participation?
Voluntary citizen participation in governance has long been a valued
concept and social practice in Western democratic societies. Citizen
participation has been described as one of the five essential "locality-
relevant functions" of any community system, along with an economic
base, resources for socialization, social control mechanisms, and mutual
aid arrangements (Warren 1963). Historically, citizen participation has
comprised collective responsibilities for community self-improvement,
voluntarism in charitable organizations, and citizen responsibilities for
local governance. The process of participation in the area of gover-
nance and policy making is the subject of this book.
The development of health and social policies in the disability field
has always presented policy makers with a conundrum about citizen
participation. On the one hand, well-meaning, yet paternalistic, efforts
of bureaucrats and policy-makers to provide for persons with
disabilities1 have made it difficult for individuals and their organiza-
tions to make their needs and views known. In most cases, they have
not been invited to the table. This lack of involvement of persons with
disabilities has resulted in significant gaps and inconsistencies in pol-
icy. The absence of democratic principles such as full participation has
been detrimental to persons with disabilities. On the other hand, the
involvement of persons with disabilities in the policy arena requires ex-
tra structural and personal supports for equal access such as those re-
quired for other minority groups such as women, youth, the aged, and
ethnic 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 of
any formal agreements, just to proceed with the policy process. An in-
cremental policy process rather than a transformational policy process
may 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 process
and demonstrates the types of policy support required. The study of
policy participation of disadvantaged groups can illustrate the prob-
lems that may be experienced in later stages of policy implementation
and help avoid expensive revisions of policy initiatives. The study of
such processes increases our understanding of how governments can
both meet the needs of people with disabilities, and indeed other mar-
ginalized groups, and facilitate their contributions to society.
A brief historical note about the concept of citizen participation is in
order. Pateman (1970) notes that the word "participation" became
part of the popular political vocabulary during the late igGos. 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 liberation
movements worldwide had stimulated the emergence of new social
movements in the West (for example, student, environment, urban re-
newal and women's movements), which demanded wider influence in
public matters. Their resistance to state control, coupled with the
state's inability to afford the level of public services that they de-
manded, provided the context in which early calls for citizen participa-
tion were advanced.
More than ever, governments called upon community members to
participate in local activities. At times, they encouraged citizen partici-
pation in order to improve efficiency through community-member
contributions to public services. At other times, governments sug-
gested that empowerment could be achieved through increased public
involvement in decision making. Hopes for both cost-savings and legit-
imization of emerging political agendas were evident in these calls for
participation. Thus, governments appeared to cede to external de-
mands for citizen participation since it could be fashioned to meet the
state's needs as well (Litwin 1986). This book takes the perspective
that new social movements have entered into traditional interest
group politics and in the process have transformed the political

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

6 A Seat at the Table
priority of problems? Issue definition and issue filtration, or deciding
how to decide, go hand in hand in policy making. Governments are ex-
pected to be major actors in problem identification through feedback
from 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 often
related to the nature and intimacy of links between policy makers and
researchers. 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 their
historical impact on policy makers, and to the interaction with and use
of the media by consumer organizations.
Policy formulation, the second step in policy making, is more formal
and bureaucratic. Research in this area looks at who formulates policy
and how the policy-making process is structured, and identifies the
roles of various government actors - political parties, the executive
level, and the civil service, as well as non-government interest groups
and individuals. Analysis of policy formulation reveals how policy ob-
jectives and priorities are set. Options analysis examines the establish-
ment of assumptions, as well as forecasting scenarios to help predict
implementation issues and likely outcomes of policy. Finally, the study
of policy formulation examines the roles of various participants in 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, this
type of study has most often focused on powerful interest groups, or at
least on well-organized community sectors such as neighbourhood as-
sociations. With the trend towards increased citizen participation in
public affairs a similar enquiry is needed for marginalized groups. In
the case of disadvantaged groups, there are reports of the relatively
poor performance of strategies to involve citizen participation in many
sectors, including policy making, in the United States (Windle 1981),
in Europe (Watt 1988), and in developing countries (De Kadt 1982).
The problems they reveal underlie our motivation to study the partici-
pation of disability organizations, which are arguably among the least
powerful, in various policy processes.
Overall, we have taken a sociological approach rather than a political
science approach in this book, since disability organizations are still
emerging as political interest groups and have not yet been institution-
alized into political parties. Nor do members of disability organizations
vote in solid electorate blocs. In the cases we have chosen to highlight, a
sociological analysis has better potential to explore the dynamics of 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 and
the 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 that
can be modified independently by disability organizations - are key in
the policy environment and lead to useful recommendations.
Canadian disability policy development was selected as the context
for this study for several reasons: there is ample documentation avail-
able; articulate disability advocates and other policy participants were
willing to be interviewed; and recent examples of policy initiatives in
this area at both the federal and provincial level contain much mate-
rial that bears close examination.
For our study we used historical and qualitative research methods
best described as historical ethnography. This type of study attempts to
describe the development of political and organizational structures
and processes that influence, and in turn are influenced by, a culture,
in this case, the culture of disability organizations in Canada. We analy-
sed four examples: the Charter of Rights and Freedoms; the Charlot-
tetown Accord; the Ontario Advocacy Act; and the British Columbia
Adult Guardianship Legislation. We selected these cases because they
included a balance of federal and provincial examples, as well as a 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. These
respondents included disability advocates, government bureaucrats,
politicians, and members of interest groups representing alternative
views. They were identified through investigative contacts, review of
pertinent correspondence, and historical accounts of the four cases.
A sub-sample of respondents from three cases (the Charter, the
Charlottetown Accord, and the Ontario Advocacy Act) was interviewed
in depth to obtain additional information on the structural character-
istics of disability organizations. The glossary at the front of the book
lists the organizations mentioned in this study. The interviewees' name
are listed in the appendix.
Interviews generally took one to two hours, and some were con-
ducted on more than one occasion. Researchers followed a semi-
structured interview format, although they tailored each interview to
fit the role and affiliations of the interviewee. Transcribed interviews
were read over by the researcher and, where possible, by the inter-
viewee as well.

8 A Seat at the Table
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 in
clarifying the social context of the policy issues, in building the case
chronologies, and in assessing policy outcomes.
Our researchers wrote separate reports on each case using a stan-
dard format that included the following aspects: the social and politi-
cal context of discrete policy issues affecting persons with disabilities in
Canada; 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 disability
organizations; 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" in
that 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 the
process of policy making or the veracity of claims about participation
were clearly bracketed in the reports, so as to avoid confusion.
In the comparative analysis of the structural characteristics of dis-
ability organizations, a traditional ethnographic analytic approach
with three levels of coding was used. The analysis aimed to develop a
framework for describing organizations that represent individuals with
disabilities in legislative advocacy in Canada.
This book is arranged in three parts. Part One begins with a history of
the involvement of Canadian disability organizations in policy making,
demonstrating important styles of interest group influence that have
long been in practice. Recent development of the disability movement
during an expansion of the social welfare state provided a unique op-
portunity for making major policy gains. Part One continues with a con-
ceptual review of the literature about citizen participation, especially as
it 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 participation
of disability organizations is best examined from a structural perspective
using new social movement and interest group theories.
In Part Two we outline the four cases in this study: two federal con-
stitutional processes - the Patriation of the Constitution (1981-82)
(Bickenbach, D'Aubin) and the Meech Lake and Charlottetown
Accords (1990-92) (Tremblay, McColl); and two provincial policy 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 that
have matured as advocacy groups but have not been consistently able
to achieve policy gains. The provincial cases illustrate not only the di-
vergence of disability groups' views on fundamental issues of capacity
and decision making, but also differences in the latitude that they al-
low for the involvement of consumer groups in policy implementation
and formulation.
Part Three contains a comparative analysis of the strategies and tac-
tics that disability organizations use in the policy process, and the
structural requirements for their involvement in policy making. The
discussion focuses on various issues and theories that are useful in ex-
plaining the participation of persons with disabilities in policy making
in Canada. In the final chapter we offer some tentative conclusions
and recommendations for improving the participation of organiza-
tions of persons with disabilities in the policy arena.

i From Asylum to Independent
Living: Disability Policy Making,
Past to Present
Disablement has traditionally been defined from a biomedical per-
spective that emphasized the causes or diagnosis of impairment and
led to interventions such as medical and surgical services designed to
help with the resulting physical problems. Disablement has also been
defined from an economic perspective that emphasizes the impact of
disability on society and on the sense of self-worth of the person with a
disability. Currently, disablement is commonly defined from a socio-
environmental perspective that emphasizes the influence of physical,
economic, social, and attitudinal constraints on the participation of
persons with disabilities in society. This approach emphasizes the inter-
action between social handicaps and environmental problems, and
leads 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 persons
with disabilities in influencing and shaping Canadian disability policy.
We proceed to outline the more recent context in which the cases in
this book occurred. It is important to note that there has been limited
Canadian historical research on the roles of persons with disabilities in
the development of policy, and more research is needed before a com-
prehensive historical analysis can be undertaken. Table i at the end of
this chapter provides a summary of significant legislative initiatives, the
disability organizations involved in the development of initiatives, and
the key leaders in the disability movement.

11 From Asylum to Independent Living
FIRST INITIATIVES
The earliest initiatives in Canadian disability policy were the provision
of housing and care for individuals with mental illness or handicap,
education for children with disabilities, and the development of
Workmen's Compensation programs. These early initiatives were not
led by persons with disabilities but rather by coalitions of individuals,
government officials, physicians, labour unions, and employer 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 the
responsibility for dealing with mentally ill and mentally handicapped
persons to the Provincial Secretary as a matter of maintaining "law and
order." In some provinces, "disturbed" people were put in jails, but
this practice was eventually seen to be an unsatisfactory way to cope
with their problems. One of the earliest Canadian policy initiatives was
the development of asylums to house persons with mental illness or a
mental handicap and other persons, probably including individuals
with physical disability, who could not find a proper place in society
(Simmons 1982).
Some of the earliest asylums, established in the first half of the nine-
teenth century, were designed on the principles of "moral treatment"
to aid persons with disabilities to return to community life. By the end
of the nineteenth century, however, most asylums had devolved into
"warehouses" designed to provide custodial care for inmates through-
out their lives. Many individuals with disabilities were also found in
county homes or municipal houses of refuge (Struthers 1994). This
practice of housing persons with disabilities continued well into the
twentieth century.'
Education for Children with Disabilities
The first initiatives in policy development in the area of education for
persons with disabilities occurred in 1867 when an Ontario govern-
ment report prepared by Egerton Ryerson, Ontario's first superinten-
dent of education, recommended the establishment of special
residential 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 a
school for the blind to be established in Brantford, Ontario, in 1871,
and a school for the deaf in Belleville, Ontario, in 1872. (It is of interest

12 A Seat at the Table
to note that during this period the provincial government did not yet
provide funding for general public education.)
Some Canadian provinces followed the Ontario example and estab-
lished residential schools, while others provided funding for students
with disabilities to travel to another province for their education (Win-
zer 1993). By the 19205 many provincial governments had passed
compulsory public education legislation and assumed the cost of pub-
lic education from the tax base. New policies were developed to either
exclude students with disabilities from public education or place these
students in special classes. These new policies were often championed
by physicians and proponents of eugenics who argued that the inclu-
sion of children with disabilities in the classroom would interfere with
the education of regular students (MacMurchy 1915; McLaren 1990;
Simmons 1982). Education policies of this nature continued through-
out most of the twentieth century. Indeed, by 1976, a major national
survey of Canadian education noted: "Most provinces fall far short of
adequate provision in public schools for handicapped children. The
result is that, typically, these children must either be sent to expensive
private institutions (with the parents bearing all or most of the costs),
or the children are simply kept at home (which is quite legal). Thus
the key pressing issue is not integration in regular schools or special
provision, but adequate provision for handicapped children 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 by
coalitions of families of children with disabilities, advocates for chil-
dren, and educators. In the late 19705 these coalitions of families also
began to lobby for legislation to include students with disabilities in
regular classrooms (Balance and Kendall 1969; Simmons 1982). Since
the 19805, new groups of parents and disability advocacy groups have
used the Canadian Charter of Rights and Freedoms to argue for edu-
cation for all students in the regular classroom.
Income Support, and Medical and
Vocational Rehabilitation for Workers
The third major field of legislation affecting the lives of persons with
disabilities was workers' compensation. During the late nineteenth 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 and
began to introduce similar programs. The first provinces to enact legis-

13 From Asylum to Independent Living
lation were British Columbia (1902), Alberta (1908), Quebec (1909),
and Manitoba (1910) (Babcock 1995). Labour union members were
often the main proponents of new legislation because they were 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 Ontario
Workmen's Compensation Act of 1914, which instituted the doctrine
of liability without fault (Piva 1975). This principle meant that com-
pensation was paid to the worker, as a right, without the necessity of
proving negligence. Medical care and rehabilitation were also offered
within a few years of the passage of the Ontario legislation (Guest
1985). Workers' compensation programs were financed by employ-
ers, who were required to pay insurance premiums that were assessed
according to the hazards of their working conditions.3
It is important to note that there were no civilian rehabilitation or vo-
cational training programs available until after World War II. At that
time, the newly developed veterans' medical rehabilitation programs
were first made available to civilian workers with disabilities, whose costs
were covered by provincial workers' compensation boards. Canadian
workers' compensation programs, however, did not provide income
benefits for those who were injured or became ill outside of the work-
place or for those who were unemployed, groups which represented a
much larger proportion of Canadians. Persons in these categories
could only look to municipal relief or assistance from philanthropic 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 were
involved in promoting policy development, persons with disabilities
themselves were not involved.
THE PIONEERS IN EARLY DISABILITY
POLICY MAKING
World War I
During World War I, the Canadian government developed a series of
programs to provide medical care, rehabilitation, limited vocational
training, and pensions to veterans with disabilities (Segsworth 1920;
Kidner 1918; Todd 1918). Unlike workers' compensation programs,
which provided only pensions and medical care, World War I programs
also offered vocational training to veterans with disabilities who were

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

15 From Asylum to Independent Living
The development of programs and services for civilians with blind-
ness began with the founding of the Canadian National Institute for
the Blind (CNIB) in 1918. Eddie Baker and L.M. Wood, a wealthy
Toronto financier, were the early leaders in this institution. Baker and
Wood argued for services for civilians and placed blind individuals on
the board of directors and in central administrative roles in the organi-
zation. The CNIB was the first national Canadian organization led by
persons with disabilities.
During the interwar period, civilians with disabilities relied on mu-
nicipal or provincial government's or on philanthropic institutions for
relief. There was no provision for medical treatment or rehabilitation
except for those who qualified for workers' compensation programs.
Social reformers of the period, such as Harry Cassidy and Leonard
Marsh, recommended social legislation to protect against illness, acci-
dents, old age, and unemployment (Research Committee of the
League for Social Reconstruction 1935). The only legislative initiative
related to disability during that period, however, was an amendment to
the Old Age Pensions Act in 1937 that provided for payment of a pen-
sion to every blind person over the age of forty who was in financial
need (Guest 1985). The legislation made no provision for treatment
or vocational training, two other services that had long been sought by
Baker, the CNIB, and the Canadian Federation of the Blind, which was
formed in 1927 (Greenland 1976; Guest 1985). The new pensions
were means-tested and reduced dollar for dollar by the equivalent of
any income that a recipient acquired over a specified amount.
World War II
In 1939 the Canadian government set up a number of committees to
create plans for the reintegration of all Canadian veterans into civilian
life following the war. By 1945 the newly established Department of
Veterans Affairs began to provide medical treatment, rehabilitation,
education and vocational training, war service gratuities, Veterans'
Land Act provisions, and other benefits for all veterans. Veterans with
disabilities were also offered income tax-free pensions, "helplessness"
allowances, and funding for special equipment such as wheelchairs
and prostheses. Finally, preference in employment was granted by the
Canadian Civil Service Commission, and veterans with disabilities 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 the
unfolding of policies to provide medical care and services to civilians
with disabilities (Tremblay 1996).
In 1948 the associations representing injured veterans formed the
National Council of Veterans' Associations. This group, which contin-
ues today, was very successful in lobbying for policies that provided
programs and services to support the full participation of Canadian
veterans with disabilities in civilian life.4 The National Council of
Veterans' Associations is the first example of interest group 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 their
work 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 economic
rehabilitation for veterans with disabilities was established. The pro-
gram actively recruited veterans with disabilities to become Casualty
Rehabilitation Officers because of the belief that those who had suc-
cessfully adapted to their disabilities could best provide counselling
and advice to those with new disabilities. In the late 19405, Dunlop
drew on his own experiences in veteran rehabilitation to develop pro-
posals for new Canadian policies for civilians (Dunlop 1947). He was
joined by other veterans in lobbying federal and provincial govern-
ments for the development of civilian rehabilitation and vocational
training programs (Montreal Rehabilitation Survey Committee 1949).
The second Canadian veteran who played a major role in changing
Canadian disability policy was Lieutenant John Counsell. In 1945 Coun-
sell, also working with L.M. Wood, established the Canadian Paraplegic
Association (CPA). The CPA was the first organization in the world
founded and administered by persons with spinal cord injury. Counsell
and six other veterans with spinal cord injury formed its first board of
directors. The first CPA constitution included a mandate to meet the
needs of both veterans and civilians with spinal cord injury. The two
central goals of the association were to provide "mutual aid" to individ-
uals with spinal cord injury and to lobby all levels of government for
medical care and rehabilitation programs for civilians with spinal cord
injuries. The association expanded to have divisions across Canada by
the i gGos and became one of the main lobbying groups for legislation
for persons with disabilities. The directors of its divisions, such as Tony
Mann of the Manitoba Division and Don Curren of the Maritime
Division, were among the leaders in the development of lobbying ef-
forts for provincial and federal disability policy initiatives between 1950

17 From Asylum to Independent Living
and 1980. They, along with other veteran leaders in the CPA such as
Ed Desjardins, were involved in the development of associations for ci-
vilians with disabilities across Canada. These included groups such as
the Western Society for Physical Rehabilitation in British Columbia and
the Manitoba League for the Physically Handicapped.
Post-War Rehabilitation
During the early 19408, four significant reports expressed interest in
the preparation of social legislation to protect all Canadians against
unemployment, disability, sickness, and old age. The Report on Social
Security for Canada (1943) by Leonard Marsh called for the 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, a
state system of medical care, and provincial programs of assistance for
the unemployed, aged, mothers with dependent children, and persons
with disabilities. The third proposal, Social Security and Reconstruc-
tion in Canada (1943) by Harry Cassidy, called for a federal program
of social insurance to offer partial protection through cash benefits
from federally funded, provincially administered old-age assistance,
disability allowances, mothers' allowances, and general assistance pro-
grams. Finally, the Heagerty Report of 1943, which had been prepared
for 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 Dominion
Provincial Conference on Reconstruction during 1945. However, after
nine months of discussions relating to federal-provincial jurisdictional
issues, the conference adjourned, unable to reach agreement on 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, and
funding for individuals with disabilities (Hudson and Jarmain 1944;
Kelsey 1947; Andoff 1947; Montreal Rehabilitation Survey Committee
1949). One early group, the Council for the Guidance of the Handi-
capped in British Columbia, argued that "the disabled person does not
want pity, charity or sympathy. All he wants is an opportunity to take
his place among able-bodied men and women and prove ability to do
any type of work" (Editor 1945).
One of the first comprehensive Canadian reports on disability was
The Rehabilitation Needs of the Crippled and Disabled in Canada
(1947), prepared by Edward Dunlop, head of the Casualty 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 will
enable each and every crippled or disabled Canadian who may require
special 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 for
the 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 pensions
or other funding benefits to individuals with disabilities.
In 1951 the Canadian government appointed an interdepartmental
advisory committee drawn from the Departments of Labour, Health
and Welfare, and Veterans Affairs to advise on the development of ci-
vilian programs5. A federal-provincial conference held in Toronto in
February 1951 resulted in the formation of the Advisory Committee
on Rehabilitation. The work of this committee laid the foundation for
the passage of legislation and the development of rehabilitation for ci-
vilians in Canada. Central to the work of the committee was the need
to develop both medical treatment and rehabilitation programs, and
vocational training and employment placement for Canadians with
disabilities who were not eligible for veterans' or workers' 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 of
Canadians with disabilities. The Medical Rehabilitation Grant, 1953,
dealt with funding for medical rehabilitation. The Disabled Persons
Allowance Act of 1954 established a joint federal-provincial program
of vocational rehabilitation and allowances for individuals over the age
of eighteen who had total and permanent disabilities. Finally, the
Vocational Rehabilitation of Disabled Persons (VRDP) program and
the Co-ordination of Rehabilitation Services Act of 1961 were passed
to provide funding for vocational training for civilians.
Eddie Baker, John Counsell, and Edward Dunlop played key lobby-
ing roles in the establishment of the early advisory committees and in
the ongoing development of legislation. They were joined by govern-
ment officials, particularly from the Departments of Labour and
Health 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 of
legislation for Canadians with disabilities were the workers' compensa-

i g From Asylum to Independent Living
tion programs, the Veterans Charter following World War II, and the
legislative initiatives of the 19508 and 19605 to provide medical 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 a
model of a very effective interest group. The council continues to be
the 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 and
lobbying for legislation from their work with veterans. The provincial
offices of veterans' organizations often provided leadership to other
organizations for persons with disabilities that began to arise in the
late 19605.
Initially, disability organizations, such as the Canadian Arthritis
Association, for example, were formed to address the needs of specific
disability groups. After the passage of the Disabled Persons Act of
1954, however, new organizations begin to focus on disability in gen-
eral rather than on specific disabilities. As generic rehabilitation cen-
tres opened and brought together new groups of health professionals
and people with a variety of disabilities, disability organizations begin
to address broader issues such as barriers to employment, transporta-
tion, and housing. Organizations such as the Manitoba League for the
Physically Handicapped, the Handicap Action Group Incorporated of
Thunder Bay, and the Toronto Mayor's Committee began to form to
work on societal access issues. A new type of cross-disability social
movement emerged.
TOWARDS INDEPENDENT LIVING
The philosophy of the Independent Living (IL) movement underlies
the evolution of recent policy participation by persons with disabilities
in Canada. The IL movement arose in response to the growing mili-
tancy of persons with disability who rejected the control of profession-
als over their lives (De Jong 1979). The IL movement advocated that
consumers have control over the organizations and resources required
to achieve maximal independence in their communities. Traditional
service providers addressed disability by employing professional pro-
gram staff, by providing services for "clients," by emphasizing private
charitable fundraising, and by focusing on specific disabilities. In

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

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

22 A Seat at the Table
Table i
Early Involvement of Canadian Disability Organizations in Policy Making
Legislation Organizations
PRE-WORLD WAR I
Ontario Workmen's Compensa-
tion Act (1914)
WORLD WAR I
Pensions, medical care, voca-
tional training for veterans
(1918-20)
War Amps Association Canadian Tuberculosis
Veterans Association
Sir Arthur Pearson Association of War Blinded
Soldiers and Sailors
Canadian National Association for the Blind
WORLD WAR II
Veterans Charter (1944-48) National Veterans Association
Canadian Paraplegic Association
POST WORLD WAR II
Medical Rehabilitation Grant
(1953)
Disabled Persons
Allowance Act (1954)
Vocational Rehabilitation of
Disabled Persons and Coordi-
nation of Rehabilitation
Services Act (1961)
Canadian National Association for the Blind
Canadian Paraplegic Association

2 Theoretical Frameworks for
Citizen Participation:
Contextualizing the Case Studies
KEY CONCEPTS
We now turn to a discussion of concepts in the field of citizen partici-
pation that are essential for understanding the events analysed in this
book. We also review a variety of theories of social change that are rele-
vant to the process of citizen participation, as these theories will help
provide a conceptual basis for the case studies on policy participation
that follow.
Citizen participation is a vast field of study that has been investigated
in many sectors such as health, environment, governance, interna-
tional rural development, and urban renewal. It has become a central
value 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" is
used, to indicate the process of involvement with the intent to achieve
a predetermined common social goal or objective. Participation in this
sense is a way of using existing physical, economic, and social resources
to attain a valued outcome or benefit, and is also a means to achieving
efficiency in organized activities. Examples of instrumental citizen par-
ticipation in the policy development arena include presenting briefs,
serving on advisory committees, and lobbying government. This form
of citizen participation tends to be short-term and does not necessarily
increase individuals' capacity to participate. Instrumental participation
is often associated with interest group theories of policy making.

24 A Seat at the Table
When participation is understood as an end in itself, the term "trans-
formational participation" is used. It indicates a long-term process in-
tended to develop and strengthen people's capabilities to involve
themselves in social development. Participation in this sense promotes
ideological and normative goals such as social justice, equity, and de-
mocracy (Pitkin 1969). In the policy arena, transformational participa-
tion includes activities designed to build organizational reputations
and develop capacities to become permanent partners in the policy-
making process. Transformational participation is often associated
with new social movement theories of policy making.
The ends and means argument in citizen participation is linked to
the interpretation of its purpose. Currently, there are three broad 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 (participation
as an instrumental means). For example, volunteers from within an or-
ganization may participate in activities such as bake sales or bingos to
raise funds for their own organization. This purpose values the effi-
ciency obtained in meeting instrumental objectives through people's
own efforts. It implies that community interests are cohesive and that
internal community conflicts can be resolved through democratic pro-
cesses. Participation as contribution is often promoted by the state and
does not necessarily imply that control and direction of activities pass
to the local level (Cohen and Uptoff 1980).
Citizen participation as organization is the process of organizing or
arranging people in common activities (participation as both means
and end). For example, participation in board of director develop-
ment activities meets the purpose of organization. In this interpreta-
tion, the origin and form of organization are crucial. Some community
organizations are conceived and introduced by external agents such as
government bureaucracy, while others emerge and take shape from
the process of community members' own involvement (WHO 1991). In
either case, this purpose for participation values the process of 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 skills
and the ability to make decisions that affect their lives (participation as
a 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 to
exercise power, and values the social equity that is achieved when
power 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 (Mikkelsen
1995). Analysis of citizen participation through an "empowerment"
lens entails a study of the mechanisms by which participation addresses
inequitable power relations (Stone 1992).
Citizen involvement in policy making is a special case of participa-
tion that often involves advocacy. Neufeld (1991) identifies six levels
of 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, system
advocacy, and public advocacy).
If we propose that the legitimate purpose of citizen participation in
disability policy making is empowerment and participation is conceived
as a transformational phenomenon that influences the process of deci-
sion making, we discover a number of implicit assumptions (Arnstein
1969, 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 to
introduce 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 a
central feature (Rifkin 1986). However, the concept of power is itself
problematic. Some authors equate power with force and coercion
(Dahrendorf 1959); some use the notion of authority (Weber 1947);
and others suggest that power is a bipolar concept entailing both
dominance of authorities and dependency on the part of the oppressed
(Emerson 1962). More recent formulations have incorporated
Gramsci's concept of hegemony, according to which the dominance of a
group rests upon its ability to translate its own world view into a perva-
sive ethos (Femia 1985). In the context of disability, the hegemonic no-
tion of able-bodied dominance has been pervasive. In these recent
views, power is not an object (which can be possessed), but is a medium
or process through which social relations involving conflict are
expressed (Giddens 1979).

26 A Seat at the Table
It is essential to distinguish between the terms influence and power.
Having influence does not necessarily imply having power or the abil-
ity to determine the outcome of a decision-making process. Influence
only implies a contribution to the processes of information gathering,
deliberation, and argument (Pateman 1970) and is akin to a neutral-
ized form of interest group participation.
Sociological theory suggests that concrete elements such as activi-
ties, division of labour, networks, social relationships, organizational
groups, 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). These
elements are reflected in observable social institutions that may affect
citizen 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 developed
historically, such as the dependency and marginalization of minority
groups 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 administrative
networks, procedures, and the attitudes of planners that shape
decision-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 or
limit citizen participation. The political-legal-economic dimension also
includes policy decisions to include or exclude certain groups such as
persons with disabilities from policy making. Any, or all, of these broad
structural dimensions may be operative in a participatory setting.
It is important to emphasize, however, that factors in these structural
dimensions do not act alone but are mediated through the agency of
individuals (Freeman 1983). Thus, macro- and micro-influences can
combine in the phenomenon of citizen participation. In order to study
them, methodologies that can capture their interaction are required
(Kelly 1989). One possible methodology is the analysis of the percep-
tions of community members about structural influences on participa-
tion. We have chosen this methodology in order to focus primarily on
the organizational dimension of participation, mostly from the per-
spectives of disability organizers themselves. Overall, a perspective on
participation that recognizes a variety of structural dimensions, the
role of human actors, and the importance of power appears to be
needed for illuminating the process of citizen participation in policy
development.

27 Theoretical Frameworks for Citizen Participation
TOWARDS A DEFINITION
OF CITIZEN PARTICIPATION
Considering the variety of possible analytic perspectives on this field, it
is not surprising that there are numerous definitions for citizen partic-
ipation. The challenge is to select or develop definitions that are con-
sistent with the assumptions of the study. Specifically, a suitable
definition 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-empowerment
interpretation of participation. Finally, the definition should explicitly
address concepts of power.
Citizen participation has a variety of meanings that focus on sharing
in activities by virtue of entitlement or right and derive from the basic
constructs of democratic theory (Neufeldt 1988). Pateman, in her 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 in
which even a minimal amount of interaction takes place. This interac-
tion might imply little more than that a particular individual was
present at a group activity. Pateman suggests that suitable definitions
of participation must include four elements: participation by some-
one, participation with someone, participation in something, and par-
ticipation for some purpose. She accepts the following definition of
citizen participation: "A process in which two or more parties influ-
ence each other in making plans, policies or decisions. It is restricted
to decisions that have future effects on all those making the decisions
and on those represented by them" (French et al. 1960, 3). Pateman
interprets this definition of participation to exclude the following situ-
ations: where an individual merely takes part in a group activity; where
an individual is merely given information on a decision affecting him
or her before it is executed; or where an individual is present at a
meeting but has no influence.
From an egalitarian perspective, Pearse and Stiefel (1979) define cit-
izen participation with a purpose of empowerment as: "the organized
efforts to increase control over resources and regulative institutions in
given social situations, on the part of groups and movements of those
hitherto excluded from such control" (8). This definition reinforces
the centrality of the issue of power in citizen participation. Pearse iden-
tifies the intended outcome of participation as "control" over re-
sources and institutions by the "excluded." Changes in political and
economic relationships are also implied. The community is seen, not
as a cohesive whole with mutual interests, but rather as a constellation

28 A Seat at the Table
of distinct advantaged and disadvantaged groups. This definition of
participation satisfies Pateman's general criteria, addresses both the or-
ganizational and empowerment purposes of participation, uses a struc-
tural perspective, and is applicable to many disadvantaged groups
within 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 of
activities 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, to
improve their quality of life. There are doubts as to whether this definition
is appropriate to represent family member participation, or the partic-
ipation of able-bodied advocates for persons with disabilities.
THEORIES OF PARTICIPATION
Virtually every field that has attempted to involve community members
in organized public activities has contributed to the knowledge base of
citizen participation. There is an extensive literature in this area 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 descriptive
and non-theoretical (Sadler 1979, Howell et al. 1987, Canadian
Council 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 context
in which organizations of persons with disabilities operate, we focus
principally on sociological theory but also present a brief overview of
citizen participation in a political sense.
A key issue in political science theories of democracy is the distinc-
tion between representative democracy and participatory democracy
(Pateman 1970). Underlying this distinction is the struggle between
the liberalist values of free choice espoused by Locke, Hobbes,
Bentham, and Mill and the democratic values of equality promoted by
Rousseau andJ.S. Mill (Weingert 1976, Wolfe 1977). Liberalist views
are reflected in the "first generation human rights" of free speech
and private property, and assert that all citizens have the right to 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,

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

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

31 Theoretical Frameworks for Citizen Participation
activities and confusion amongst staff and participants. Stirling (1989)
suggests that the functions of community organizations have devel-
oped beyond early social action conceptualizations of enabling, medi-
ating, and activism towards more recent trends of "institutional
access," "local cooperation," and "intersectoral coordination." These
trends demonstrate an increasing bureaucratization of the functions
of community organizations in their relationships with the state.
A second stream in community organization theory focuses on 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 to
be a fixed amount of power or benefits in society. The power that one
group wins is achieved only through loss of power by another group.
Arnstein's "Ladder of Participation" is implicit in many of the efforts
to develop scales for evaluating the degree of citizen participation
(Rifkinetal. 1988).
Alternatively, Susskind and Elliott (1983) propose a non-zero-sum
gradient of participatory influence: from paternalism (centralized de-
cision-making), to conflict (citizen confrontation over control of poli-
cies), to co-production (negotiated decision-making wherein power is
shared and both parties gain information about community prob-
lems). Crenson (1983) notes, however, that while the co-production
process tends to occur more often in low-income neighbourhoods, it
usually benefits the high-income residents of these neighbourhoods.
This imbalance raises the issue of who benefits from a negotiated deci-
sion-making process.
Most community organization theorists view the practice of citizen
participation 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 makes
analysis and evaluation of community projects problematic. There is a
consistency of view, however, that over time community organizations
must address their relationships with outside groups, institutions, and
social structures that influence the well being of the community
(Jackson et al. 1989).
Overall, community organization theory is concerned with explain-
ing the structure, function, and process of participatory activities in lo-
cal policy making and is important in the analysis of factors that
contribute to successful community involvement and also in the

32 A Seat at the Table
development of evaluation strategies for citizen participation (Rifkin
igSi.Rifkinetal. 1988).
Social Movement Theory
A second stream in social change theory that is applicable to citizen
participation in policy making is contained in the literature on social
movements. Social movement theory is concerned with the develop-
ment, maintenance, and impact of collective organizations of social
change (Hannigan 1985). Early theories of social movement focused
on the emergence of social problems and the motivations of aggrieved
populations and leaders in responding to these problems (Turner and
Killian 1987). However, these analyses of collective behaviour gave lit-
tle explanation for the participation of non-aggrieved persons (Olson
1968) or the development of community organizations in the social
movement (McCarthy and Zald 1987). Two social movement theories
apply particularly to citizen participation in disability policy making:
resource mobilization theory and new social movement theory.
Resource mobilization theory proposes an economic analogy to 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 organizations
with 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 agents
between the state and the community. While this theory can explain
how an advocacy organization is set up and how it maintains levels of
citizen participation, it sheds no light on the reasons why organizations
initially arise or on their potential for long-term survival. This issue is
important in transformational participation and in the participation of
disability agencies in coalition activities.
New social movement theory addresses these transformational is-
sues. Castells (1983) argues that recent social movements have devel-
oped in response particular historical and cultural events that are
anti-institutional and self-identifying in nature. He asserts that the
survival of a social movement organization depends on more than a
rational mobilization of resources alone, since such a narrow focus in-
evitably leads to institutionalization and loss of purpose. Castells pro-
poses that the future of such organizations depends on improved
collective conditions, an autonomous community culture, and politi-

33 Theoretical Frameworks for Citizen Participation
cal self-management. Similarly, Touraine (1981) identifies autonomy
and self-identity as crucial requirements for new social movements
that are more concerned with reform or creating alternatives within
the dominant society, than they are with increasing their own power.
More broadly, Castells (1989) conceptualizes citizen participation it-
self as a component of a general social movement for local autonomy.
In summary, social movement theories may help explain how citizen
participation is supported, identify why it arises, and assess its 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 group
theory, the predominant political theory of Western democracies, as-
sumes that societies are comprised of constituencies with different
goals and that conflicts between competing interests can be resolved in
various decision-making fora. Pluralism is a particular interest group
theory that assumes that the government acts in response to the pres-
sures of competing interest groups (Dahl 1961). Pluralist research at-
tempts to identify who the competing parties are, to what extent their
interests 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 interests
have 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 collectivity
excluded from full participation in the system (Herman 1983). Elite
theorists argue that political power is concentrated in established elite
groupings (Mills 1959). Neo-marxists also argue that elite groups con-
trol the political process through influence over the state, which acts as
an instrument of economic class domination (Miliband 1969).
An alternative interest group theory is concerned with identifying
the dominant, challenging, and repressed interests in decision-
making groups and assessing how their positions are maintained in
relationship with the predominant institutional and class structures.
In an analysis relevant to social policy making, Alford (1975) argues
that the traditional power of dominant "professional monopolizers"
has been challenged by "corporate rationalizers," or groups of health
and social administrators, bureaucrats, and business persons intent
on rationalizing the social welfare system to make it more efficient.
Alford identifies community advocates as a third interest group that
has largely been repressed in its attempts to gain influence. The

34 A Seat at the Table
repression of community advocates can be partially explained by lay-
professional conflicts (Young 1975) that are part of the disability
movement's history.
One of the limitations of interest group theories has been their inad-
equate conceptualization of the role of the state. Traditionally, the
state has been viewed as a neutral mediator (Latham 1952), as an
equal player (Dahl 1961), or as a body primarily interested in main-
taining the status quo (Alford 1975). These views do not explain the
current tendency of the state to actively promote a social agenda that is
based rhetorically on fundamental change, for the advancement of
persons with disabilities. Theories of political economy of the state
help to clarify this tendency.
Political Economy Theory
Why does the state espouse citizen participation as a primary strategy
in policy making? Political economy theories relate the policy arena to
society as a whole. They acknowledge the powerful interests that rule
Canada, consigning an important role to ideology, and they adopt as-
sumptions of critical theory such as emancipation, structural influ-
ences, and the power of knowledge (Salmon 1989). An additional
core consideration in the political-economic view is the legitimation of
different groups as participants in decision-making.
Theories of political economy are generally concerned with the in-
fluence of broad economic and political factors on the role of the state
and its actions (Dahrendorf 1959, O'Connor 1973). Theories differ
on the basis of their views of the role of the state in a class society. In
Dahrendorf's view of class structure, post-capitalist society has a new
middle class, increased social mobility, and more equality between
classes. Power does not derive from the economic base directly, but
through relationships of political authority that the state controls. The
state camouflages the real source of control by espousing "participa-
tory democratic" institutions, of which citizen participation may be
viewed as the most recent example.
Dahrendorf notes that increased state control of the economy in a
social welfare state brings a need to legitimize this control through cit-
izen participation in order to augment the legitimacy usually granted
by elections. In a purely representative democracy, electoral support
for the ruling party does not sufficiently legitimize the increasing bu-
reaucratization of society, and this deficit in support is actively solicited
by those in power. The public, even those who are not supporters of
the ruling party, are likely to accept their new role in citizen participa-
tion, since it seems to represent an opportunity to exert influence.

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

36 A Seat at the Table
as a mechanism to integrate economic, social/health, and environ-
mental policy making (Hancock 1994). Although undemocratic in
principle since they exclude the masses, neo-corporatist models may
represent a functional advance over traditional "representative"
majority-rule political bodies in their explicit acknowledgement that
no single sector can unilaterally make structural changes. In addition,
nee-corporatism may ensure a public accountability in corporations
and the labour movement that is absent in the present system.
Voluntary associations and groups of disadvantaged persons such as
disability organizations have tended to be excluded from these more
recent decision-making processes since they are not believed to con-
trol the resources necessary to affect basic socioeconomic conditions
(Van Til 1984). There is no inherent reason, however, that disability
groups could not participate in a neo-corporatist model. The key con-
dition for participation is the perceived legitimacy of the community
sector, a particular problem for those perceived to have diminished
capacity (Mulgan 1984).
Political economy theories are useful for studying the motivations
behind the state's promotion of citizen participation and for under-
standing limitations in the state's ability to facilitate it. These theories
also offer a framework for analysing the legitimation of citizen groups
in decision making. In sum, political economy theories provide an im-
portant perspective on the motivations of the state and may explain
the resources provided to citizen participation in policy making, and
the state's expectations of it. They also provide a balance to theories of
community organization, social movements, and interest groups by fo-
cusing on socio-political conditions.
A CRITIQUE OF CITIZEN PARTICIPATION
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 policy
projects, there is little resource support for it in practice. Advocacy
groups are often understaffed and limited in their funding terms, a sit-
uation that precludes public involvement in needs identification, skill
development, and ongoing policy development activities.
Although community members are supposed to be central in partic-
ipatory strategies, competition between more powerful professional
and bureaucratic sectors often marginalizes the community (Smithies
1987). Similarly, even though community experience is claimed to be
the primary basis for planning local projects, funders often give more
credibility to scientifically based knowledge (Stacey 1988).

37 Theoretical Frameworks for Citizen Participation
Pederson et al. (1988) note that citizen participation often implies
mass community activities, but that in reality specific interest groups
tend to dominate. Participation may be intended to promote equity,
but there is always a risk of inequitable distribution of benefits in a
policy context, depending on who is involved and how the process is
controlled.
On a macro-level, Navarro (1984) notes that there is a contradiction
in the state's advocating local autonomy while maintaining 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 Canadian
jurisdictions. In Ontario, Pederson and Signal (1994) note ambiguity
in government calls for citizen participation that on the one hand
promise group empowerment and on the other hand expect individ-
ual responsibility. They question whether this ambiguity results in a
false 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. This
confusion, 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 seem
to provide the most appropriate explanations for citizen participation
in 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 and
bureaucratic actors. In contrast community organization theories of
participation generally assume more established forms of organization
than the emergent disability groups in these cases demonstrate. Fi-
nally, political economy theories of citizen participation, while attrac-
tive on a macro-level, require that data be collected on a larger scale
than these four case studies can provide.

3 Constitutional Ferment:
Proceeding to Patriation
Our case studies of the participation of Canadians with disabilities in
policy making can be organized generally into federal cases - those
dealing with rights of inclusion in Canadian society; and provincial
cases - those dealing with capacity for decision making. The federal
cases deal with policy making on issues of human rights, prohibition of
discrimination, and access to services, which are topics of interest to
many minority groups. The provincial cases deal with issues of capac-
ity, decision making, and the role of personal advocates, and are of
particular interest to persons with disabilities as well as to seniors.
Since the advent of the Charter of Rights and Freedoms in 1982,
Canadian politics has increasingly responded to the demands of many
diverse citizens' groups for inclusion in the policy-formation process.
Advocacy groups representing women, aboriginals, ethnic minorities,
gays and lesbians, and people with disabilities have had a major impact
on the legislative process at all levels of government.
Many students of Canadian politics attribute this increased influ-
ence to the growing second generation "rights consciousness" evi-
dent among disadvantaged groups in our society: citizens have a
greater tendency to demand official governmental recognition and
support of their concerns and entitlements using the specific 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 Canadian
citizens, but people with specific social or political identities
grounded in our differences. These differences in turn shape how we
relate to each other and to government. Explanations of policy mak-
ing from both interest group and social movement perspectives have
been 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-formation
process. Since section 15 of the Charter of Rights and Freedoms gives
explicit recognition to the injustice of discrimination based on mental
and physical disability, advocacy for the rights of persons with disabili-
ties has become an extension of this constitutionally based set of legal
rights 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 a
specific policy issue emerged and by describing the interests of advo-
cacy groups in that issue. We then present a detailed chronological
overview of the main events in the development of policy regarding
that case. We continue with our analysis of the organizational 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 key
groups and coalitions in order to influence the legislation. In addition,
we identify the basic mechanisms through which key advocacy groups
gained access to significant policy-making centres. Finally, we confront
the outcomes of disability advocacy group participation in these policy
processes. Here we examine both the "objective outcomes" - the ac-
tual legislation achieved and the influence advocacy group members
had in shaping it - and the "subjective outcomes" - the perceptions of
the main stakeholder groups about their roles and influence. We also
try to elicit the perceptions of key stakeholders about their successes
and failures in these policy processes and about the lessons they
learned over the course of their participation.
Since the Charter of Rights and Freedoms represents the 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 on
the Canadian scene as part of the patriation of the Canadian Constitu-
tion from Great Britain.

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Seat At The Table Persons With Disabilities And Policy Making William Boyce

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