Full Report - Canadian Foundation for Healthcare Improvement (CFHI)

Commentaires

Transcription

Full Report - Canadian Foundation for Healthcare Improvement (CFHI)
A Canadian Institute on the Disability Process
Karen A. Blackford, RN PhD
Canadian Centre on Disability Studies (CCDS)
Patrick Fougeyrollas, PhD
International Network on Disability Creation Process (INDCP)
Michael Mahon, PhD
Health, Leisure and Human Performance Research Institute
University of Manitoba
Submission for:
Canadian Institute of Health Research Design Grant Program
Social Sciences and Humanities Research Council of Canada
Canada Health Services Research Foundation
October 1, 1999
INVESTIGATORS AND CO-INVESTIGATORS
Investigator: Patrick Fougeyrollas
Co-investigators:
Alfred Neufedt
Alice Eriks-Brophy
Astrid Vercaingen-Menard
Chantal Laroche
Charles Pare
Clermont Dionne
Colette Dubuisson
Jacques Barrette
Joachim Reinwein
Karen Blackford
Linda Garcia
Line Robichaud
Luc Noreau
Lucie Brosseau
Marie Gervais
Meredith Wright
Michel Loranger
Michel Pepin
Myreille St-Onge
Olga Krassioukova
Rachel Thibeault
Rose Martini
Serge Dumont
Investigators: Mike Mahon
Karen Blackford
Co-Investigators:
Henry Enns
Aldred Neufeldt
Joseph Kaufort
Kari Krogh
Mary Tremblay
Olga Krassioukova
Patrick Fougeyrollas
Susan Boutilier
Universite Laval
The University of Calgary
University of Ottawa
Universite du Quebec a Montreal
University of Ottawa
Unknown/Other
Universite Laval
Universite du Quebec a Montreal
University of Ottawa
Universite du Quebec a Montreal
University of Manitoba
University of Ottawa
Universite Laval
Universite Laval
University of Ottawa
Universite Laval
The Ottawa Civic Hospital
Universite Laval
Universite Laval
Universite Laval
Canadian Centre on Disability Studies
University of Ottawa
University of Ottawa
Universite Laval
University of Manitoba
Canadian Centre on Disability Studies
Canadian Centre on Disability Studies
The University of Calgary
The University of Manitoba
University of Victoria
McMaster University
Canadian Centre on Disability Studies
Universite Laval
Nova Scotia Community College
TABLE OF CONTENTS
The Issue
Demographic Realities
Presentation for the Canadian Centre on Disability Studies
Doubly Marginalized Groups
The Social Model of Disability
Participatory Action Research
Summary
Methodology
The Framework
Disability Creation Process Figure
Axes of Research
A.
B.
C.
D.
Prevention of the causes of significant and long-term impairments and disabilities
among the population
The development of knowledge on significant impairments and disabilities as
consequences of diseases, trauma and other disruptions in the development or integrity
of a person as well as methods of intervention and compensation in adaptation and
rehabilitation
The study of personal and environmental determinants of social participation defined
as the result of an interactive process
The organization and evaluation of services, programs and policies related to health
services, rehabilitation and multisectoral support to social integration or inclusion of
people with organic or functional differences
The Organizational Structure of the Institute
Governance of the Institute
A.
B.
C.
Planning of research
Grant Programs
Assessment
Representatives of the Institute on other Cross-Cutting Institutes Boards
Review Process
A.
B.
Relevancy Committee
Scientific Committee
Accountability
Transfer of Knowledge and Appropriation for Improving Health Services and Social Change
Conclusion
Bibliography
Letters of Support
A CANADIAN RESEARCH INSTITUTE ON THE DISABILITY PROCESS
The Canadian Institutes for Health Research have created a unique opportunity for a robust interdisciplinary
examination of the disability process. This paper presents the rational for a Canadian Health Research
Institute on the Disability Process. Proposed is a national research alliance that builds on a strong
foundation of existing networks of researchers, people with disabilities, service providers and policy makers.
This Institute would be unique in the world because of its broad focus on issues ranging from social
participation and health to prevention, treatment and health services and the disability process. The
credibility of the proposed Institute can be found in the already existing vast partner network presented in
this paper.
The mission of the Institute is to address the breadth of the disability process. This includes: the dimensions
of risk factors for disease, trauma and other disruptions to the integrity of a person that have long-term
consequences; the continuum of health, adaptation rehabilitation and social integration support services for
people with significant and persistent impairments and disabilities; studies related to the cultural and sociopolitical phenomenon of disability as a social construction; and finally, all of the physical and social factors
that ensure the exercise of rights and equal opportunities of people with disabilities, such as social
measures and policies. The Canadian Institute of Research on the Disability Process concerns all types of
impairments (motor, auditory, visual, language and speech, intellectual, psychological) and all age groups.
Within a multi-disciplinary perspective, the organization of the Institute aims to create bridges and
collaborations between the diverse aspects of fundamental, clinical, applied and evaluative research on
both bio-medical and social facets. The guiding principle for this Institute will be the development of
research within a cultural and socio-political perspective, based upon the viewpoints of the people
concerned (people with disabilities, families, researchers, service-providers, policy-makers).
The Issue
Disability issues and the interdisciplinary field of Disability Studies have long been marginalized in health
related research funding initiatives, and other areas such as the social sciences and humanities. With the
exception of the Human Resource Development Canada (HRDC) – Social Sciences and Humanities
Research Council (SSHRC) Strategic Grants on Disability, there has been no significant federal research
funding targeted to disability related issues. This marginalization is exemplary of a much larger problem in
Canada, which is the continuing systemic and interpersonal exclusion of people with disabilities. Disability
oppression is an over-arching term which accurately describes the barriers experienced by people with
disabilities who are stigmatized and historically disadvantaged in the economy, the state and civil society
(Oliver 1990; Abberley 1987).
Demographic Realities
This Institute is based on the necessity to reconsider the disability process in light of a major societal priority
within the field of health, i.e. an increase in the prevalence of chronicity and long-term functional limitations
and aging among the population. In 1980, the World Health Organization estimated that “approximately
10% of the world’s population at any given time is physically or mentally impaired”(Scheer 1988, 24). The
1991 Statistics Canada post-censal survey on persons with disabilities (Health and Activity Limitation Survey
(HALS)) revealed that 4.3 million people in Canada live with a disability (16% of the Canadian population).
The Canadian Mental Health Association reports that one in three people will have mental illness in their
lifetime. In fact, disability is a reality concerning the vast majority of the population at one time or another in
their lives. Considering recent advances in medical science, which have allowed more people with
disabilities to survive birth and childhood, and the aging of our population (both generally and among
people with disabilities), it is clear that this percentage will continue to rise into the new millennium.
4
The field of Disability Studies is important because of the number of persons involved. Everyone, at some
point, becomes disabled. The large number of Canadians with disabilities and the vast amount of dollars
spent on such areas as rehabilitation, support services and income support make it an important area for
research. Data from the HALS survey indicates that Canadians spend 2.5 billion dollars on disability
through the Canada Pension Plan. Canadians are becoming more aware of the implications of our aging
population. However, little research has been conducted regarding people with disabilities as they move
into later life (Mahon & Goatcher, In Press). Research must be conducted to determine the changing
needs of seniors with disabilities, the barriers facing aging people with disabilities, the participation of major
stakeholders in finding solutions, and the issues around coping with stereotypes of aging and disability
(Canada: National Advisory Council on Aging). Many aging people with disabilities must deal with
secondary symptoms of their disability as they age, and “the onset of secondary disabilities may violate
strongly held beliefs regarding the ‘normal’structure of the life course”(Campbell, 1996). Research on
aging with a disability could contribute to a broader interest in assistive technology, personal assistant
services and health and long-term care issues (Campbell 1996). The oppression of people with disabilities
has led to their exclusion at the economic, state, and civil levels of Canadian society. Economically, people
with disabilities rank among the lowest in terms of income, and the highest in terms of unemployment. In
1994, almost 60% of Canadians with disabilities had incomes below Statistics Canada’s poverty levels
($20,000 per year). It is now broadly accepted that unemployment and low income are strong indicators of
poor health. The following table describes this data by income level:
Figure I: Percentage of Adult Canadians with Disabilities (age 15-64) by Income Level
Percentage of Adult Canadians with
Disabilities
26%
Income Level
17%
$5,000 - 9,999
11%
$10,000 - 14,999
9%
$15,000 - 19,999
8%
$20,000 - 24,999
7%
$25,000 - 29,999
22%
$30,000 +
< $5,000
Canadians with disabilities also face unemployment and under-participation in the labour force at rates
substantially higher than those for other Canadians. The following chart illustrates these discrepancies.
Disability strongly influences other determinants of health and people with disabilities. For example, people
with disabilities have less formal education, than their non-disabled peers. This can be attributed to such
things as lack of access, and other disability related problems. Nearly half (45%) of the respondents to the
HALS survey, who had severe disabilities, had eight years of education or less. Many people with
disabilities report difficulty moving outside of their neighborhood because of challenges related to
community living. People with severe disabilities also are quite dependent on attendant support for
personal care needs. Finally, there is an alarming risk of malnutrition in children with disability which is
attributable to factors such as physical and cognitive disability and altered nutrition requirements due to
medical conditions (Shah)
5
Doubly Marginalized Groups
Disability research addresses issues across all types of disabilities. Where people with disabilities have
been previously identified as a monolithic people, it must be recognized that they bring a variety of
experiences and levels of exclusion and stigmatization. Very little literature exists on doubly marginalized
group of people with disabilities, especially regarding Aboriginals, new Canadians, and aging people with
disabilities. Slightly more literature exists concerning women with disabilities. All accounts cite these
marginalized groups as facing exceptional barriers to full social inclusion.
According to HRDC, “30 per cent of Aboriginal adults report a disability, more than double the national rate”
(1999). This exceptionally high rate results from poverty, harsh living conditions, and lack of adequate
services (Fricke 1998) faced by many Aboriginal people in Canada. Disability for an Aboriginal person
creates different problems than for non-Aboriginal, urban Canadians. According to Stienstra & Kellerman:
“Aboriginal parents living on reserves have to relinquish guardianship of children with disabilities to gain
access to provincially funded special education programs”(1999). For Aboriginal adults, having a disability
often means relocating to an urban setting in order to receive adequate medical and social services. This
forces them into a “triple jeopardy’situation of being Aboriginal, living away from their home community,
and having a disability (Durst 1999).
New Canadians with disabilities face much different obstacles. “Exceptionality intersects with factors such
as gender and race or ethnicity in interesting and complex ways”(Banks 1997). Certain ethnic or racial
groups are more largely represented in categories of disability such as those with intellectual disabilities and
the learning disabled. Cultural differences in perception and acceptance of disability leads many ethnic
people with disabilities to remain isolated, without access to community services. Certain ethnic
communities view disability as a reflection of moral or religious behavior, of either the parents of the person
with a disability, or of the person themselves (Kowalchuk 1999; Ingstad 1995). Social scientific inquiry may
lead to insight into these issues, which must be addressed in order to find applicable and meaningful
solutions.
Women with disabilities are among the poorest people in Canada (HRDC 1998). They face much higher
rates of violence and abuse than non-disabled women: “It is estimated that women with disabilities are 1.5
to 10 times as likely to be abused as non-disabled women, depending on whether they live in the
community or in institutions”(Rivers-Moore). Their ability to provide care for their children has been
undermined by recent cuts in federal funding for childcare (Masuda 1998), and by prejudicial attitudes
about parents with disabilities (Blackford, 1999). Women with disabilities lack access to education and
training programs that would help to reverse the poverty of this group (Masuda 1998).
Historical and Political Forces
Disability Studies has emerged as a discipline within the contexts of the Disability Rights and Independent
Living Movements which have advocated for civil rights and self-determination over the past two decades.
Since the 1970s, this movement on behalf of the rights of persons with disabilities in Canada and the United
States has achieved significant policy, and also helped in the emergence of Disability Studies by uniting
academics and advocates who discovered that they shared common concerns.
Canadians with disabilities have and continue to demand their right to equal citizenship, a demand which
includes equal access to education, employment, public access, family support services, transportation,
health care, and the development of research initiatives around these disability issues. In Unison: A
Canadian Approach to Disability Issues (HRDC 1998), calls for improved access to government programs
and services, education and training opportunities, and barrier free environments, among other things.
Most importantly, this document recommends changing the focus of government programs from ‘support’
to ‘participation’, from ‘dependence’to ‘independence’. The Federal Task Force on Disability Issues (1996)
6
recommended that the government establish a “Canadians with Disabilities Act”, which would provide an
infrastructure to build policy, provide funding potentials, and serve as a centre of accountability on disability
issues in Canada. HRDC has produced other documents calling for increased participation of people with
disabilities (consumers) in decision making and planning around all issues: HRDC has been moving
towards working more in partnership with the disability community, and away from a directed style of
community assistance”(HRDC 1999).
The Social Model of Disability
Disability cannot be abstracted from the social world which produces it; it does not exist outside the social
structures in which it is located and independent of the meanings given to it. In other words, disability is
socially produced”(Oliver 1992: 101).
Disability Studies has broadened disability issues their historic place within the medical and rehabilitation
spheres to include the social and political aspects of Canadian society. This is consistent with an ever
broadening view of health demonstrated in such reports as the Premier’s Council on Health Strategy that
emphasizes the central importance of social and economic supports to achieving health. This changing
perspective on disability has resulted in the development of a "disability framework" which examines the
social, political and economic forces which have marginalized and oppressed persons with disabilities for
centuries. This paradigm shift has meant that persons with disabilities, along with their advocates and
allies, are taking an increasingly active role in demanding that society acknowledge their rights, eliminate
barriers to full participation and provide appropriate supports, with a view that these interventions, "will
enable people with disabilities to live in ways that are personally satisfying, socially useful and meet national
1
and international standards of social well-being, human rights and citizenship."
The traditional medical/rehabilitation model focuses on disability as physical impairment, with the goal of
maximizing individual physical potential. Although rehabilitation is acknowledged as an important process
for people with disabilities, it has been criticized for its individualized focus, its preoccupation with the
physical or cognitive limitations of the “patient”and with enhancing their ability to function “normally”within
society (DeJong 1979). Research conducted under this paradigm has focused its inquiry in disability on
long-term dysfunction in the lives of people with disabilities, and ignores the social implications (Verbrugge
1990). The Social Model seeks to define disability in terms of social and environmental limitations.
The social model of disability has shifted the focus of inquiry away from individual impairment and society’s
construction and interpretation of disability. Linton compares the impact disability theorizing can have by
comparing it to Women’s Studies. When feminists differentiated between ‘sex’and ‘gender’, they allowed
gender to be analyzed as a social construction separate from the biological determinant of sex. Similarly,
when disability scholars differentiate between ‘impairment’and ‘disability’, the social model may also be
applied to disability (Linton 1997: 536).
The focus of disability research must be on the social factors which interact with the individual in either a
disabling or empowering way (Verbrugge 1990), in other words, research must be conducted within the
Social Model of disability. Oliver concurs with this view, stressing that the experience of disability should be
understood in terms of material factors, life histories, and with respect to the meanings assigned to life
events by individuals with disabilities (Oliver 1992).
1
Marcia H. Rioux "Enabling the Well-Being of Persons with Disabilities" Paper presented to The World
Bank, Washington D.C., March 1998. p. 1.
7
Many other scholars also argue for a larger, more encompassing social model of disability. Hughes, for
example, claims that “the social model...actually concedes the body to medicine and understands
impairment in terms of medical discourse”(Hughes1997, 326). The social model must therefore embrace
body politics, as feminist discourse has, in order to confront the medical monopoly over the body. One way
this might be addressed is through the inclusion of individual (phenomenological) experiences within the
Social Model of disability. Research must stress subjectivity and locate individuals with disabilities within
both the social and the personal context of the disability experience (Shakespeare 1994).
Participatory Action Research
The Social Model demands the participation and control of persons with disabilities and their agencies over
research. Scholars and consumers have referred to Participatory Action Research (PAR) designs as
models for disability research. PAR emerged, in part, through a marriage between pure and applied
research in social science (Whyte 1991), which has allowed researchers to create a process by which to
conduct research while promoting positive change within the communities they research. According to
Eldon (1987), Participatory Research is designed so that those affected by the research are directly
involved in the definition of the problem, methods of choice, data analysis, and use of the findings.
PAR provides an opportunity for individuals to identify their own strengths and needs and to generate long
lasting solutions where ‘expert strategies’have failed (Simonson 1993). This type of research therefore has
practical relevance for the population under study (Stone 1996). In order for researcher to claim
Participatory design, the research must undertake to improve the situation of the population it researchers,
through empowerment, education, and the creation of change (Bowley 1997).
Methods of research within this model, referred to by some as “Emancipatory Research”, require that
researchers surrender their claims to objective expertise, and respect the subjects expertise in their own
situations (Gilgun 1998). They should take a subordinate role in the direction and control over research by
non-disabled researchers (Stone1996). Advocates of the Social Model argue that the only way research
will have a positive impact on the lives of people with disabilities is to involve them in a meaningful way in
the research - through emancipatory designs (Oliver 1992).
A similar move towards participatory models can be seen within the rehabilitation community: “consumerdirected disability policy and rehabilitation programming should be based on the presumption that
consumers with disabilities are the experts on their service needs”(Kosciulek 1999: 5). He goes on to say
that consumers must direct and control the delivery of services, their service options, have information
made available to them, and participate in systems design and service allocation. These components
would “facilitate more effective policy making, program implementation, and research”(Kosciulek 1999: 5).
Success of PAR depends on strong linkages between the research team and the community (Bailey 1992).
Most importantly, PAR must provide an opportunity for equal participation in decision making and control
for both consumers and researchers (Cantrell 1993; Liberati 1997; Stone 1996; Zarb 1992). For a truly
emancipatory paradigm to be followed, researchers must be made “directly accountable to disabled
people”(Zarb 1992).
Summary
The disability process has become a very significant area of research in the past 30 years. At present,
there is a vast potential network of researchers available in Canada who are involved in multi disciplinary
research targeted at all aspects of the disability process. Evidence of the vastness of this network can be
found in, for example, the development of interdisciplinary health and social research centres in the
Province of Quebec, the Canadian Consortium on Rehabilitation Science, the Research Network on Social
8
Participation (INDCP’s) and the network of Canadian researchers at the Canadian Centre on Disability
Studies. The proposed Institute creates a unique opportunity to formalize this network and create a process
for interdisciplinary and multisectoral disability process research.
Methodology
Originally, two separate proposals were submitted by the Canadian Centre on Disability Studies (CCDS) in
Winnipeg and the International Network on the Disability Creation Process in Quebec (INDCP), both of
which proposed the creation of an institute broadly focused on disability issues. Because the proposals are
complementary, SSHRC asked us to develop a joint paper. A joint action plan for designing an
interdisciplinary and pan-Canadian multisectoral research Institute on Disability Process.
Leaders from the two research teams met in Winnipeg in order to develop a process for combining the two
proposals. At this meeting it was decided that consultation would be sought cross-Canada from as many
consumers, disability organizations, and researchers as possible. This feedback would be solicited through
an initial mailing describing the process of the CIHR and including the original two proposals from CCDS
and INDCP. This mail-out requested feedback on the proposals, the CIHR process, and a request for their
participation in the proposed institute. The mailing also included announcements of four focus group
meetings to be held across Canada in Quebec City, Ottawa, Winnipeg, and Calgary. A sample of those
who received the mailed package also received follow-up phone calls.
A broad Literature Review was conducted on disability. This review presented information on the Social
Model of Disability, Canadian policy on disability, participatory models for disability research, emerging
issues in disability research such as doubly-marginalized groups, new Canadians with disabilities, and
employment issues, among many other things. This review has helped to illustrate the many barriers faced
by people with disabilities in achieving full social participation in Canadian society.
In spite of the limited time available, an extended effort was made to elicit feedback from consumers,
researchers, and community and academic organizations involved in disability research. A mailed request
for feedback was sent to over 800 individuals and organizations. Given the short turn-around, a response
rate of 124/700 was considered to be quite successful by the research team.
Four focus groups were organized, one each in Quebec City, Ottawa, Winnipeg, and Calgary. These
meetings provided community organizations and individuals the opportunity to discuss their views on a
Disability Institute and to provide feedback on the original proposals. These meetings were attended by
approximately 55 people, and resulted in a wealth of important information on the scope and process of a
disability research institute.
The following questions were asked to both the focus group participants and all those who received the
mailing:
1. How can the two proposals be melded into a cohesive framework that will guide our position paper?
2. What is missing from the two proposals?
3. What aspects of an Institute on Disability will be important to ensure that you (your organization) can
participate fully in research fostered through the Institute? What specific constraints need to be
addressed to ensure your full participation?
4. What type of structure and operational mechanisms (e.g. location, funding process, peer review, ethical
procedures) will be useful for ensuring equitable participation by all constituents?
5. How can we structure an Institute on Disability to ensure that social and consumer based research can
coexist with biomedical research on disability?
6. Are you willing to participate in an Institute on Disability as a researcher, community partner, or in some
other capacity? If yes, please complete the attached information form.
9
The focus groups were taped and transcribed so that they could undergo a Key Theme Analysis. These
themes were considered in the final preparation of the position paper.
A three page summary was compiled for distribution to SSHRC. This summary provided the basis of this
final position paper. It was distributed for feedback to all individuals and organizations who provided written
feedback or who participated in the focus group meetings.
Throughout the process of compiling this paper, the Winnipeg and Quebec research teams met 3 times in
person, and several more times through conference calls, telephone conversations, and e-mail contacts.
The Framework
An institute that addresses the disability process must rely upon a coherent frame of reference that
integrates all components of prevention, adaptation, rehabilitation and social participation of people with
disabilities. This conceptual framework must be useful for all people involved in the Institute: the people
with disabilities, researchers, service-providers, and policy-makers. It must allow for the articulation of the
organization and evaluation of services, programs and policies, as well as research and teaching activities,
academic training, service providers training, the dissemination of knowledge and appropriation of the
results of research for action and social change. This framework should also provide a common language
that becomes an essential tool for the accomplishment of multi-disciplinary and multi-sectorial integration
that is inherent in the concept of the Canadian Institute for Health Research.
This proposal is grounded within the Disability Creation Process (DCP) framework developed by the
International Network on the Disability Creation Process (INDCP) (Fougeyrollas P., Bergeron H., Cloutier
R., StMichel G., Côté J. 1996, 1998). This theoretical conceptual model relates to the understanding of
causes and consequences of disease, trauma and others disruptions to integrity and development of a
person and is well validated and widely applied both in Canada and internationally. It was developed in
relation with international debates co-ordinated by the World Health Organization (WHO) on the revision of
an international classification (International Classification of Impairments, Disabilities and Handicaps ICIDH) ( Fougeyrollas P., Noreau L.et al 1998)
10
Ri
sFa ktor
c
s
Cause
P
eonar Fa
s
l tor
c
O gani
r
c
S te
y sm s
Integrity
Impa i mentr
Env onm
i r nta
e Fa
l tor
c
s
Capabi til ei
Ability
s
s
Fac li ator
it
Disability
Obstac e l
Interaction
Life Habits
Social Part ci at
i on
p i
© IN
Handicap Si uatit n o
H / CC ICIDH
SP 1998
Figure 2: The Disability Creation Process
The DCP is based upon an interactive, anthropological, universal, person-environment model. This model
allows for the creation of interdisciplinary research based on its different conceptual dimensions. The
dimensions of this model are: risk factors (causes); personal factors that are sub-divided into organic
systems (impairments), functional capabilities (disabilities) and socio-cultural identity; environmental factors
and life habits (handicap situations). The model assumes that disease, trauma and other disruptions to the
integrity and development of a person may cause organic impairments and functional disabilities of a
stable, progressive or regressive nature. The traditional bio-medical model is necessary and of high value
when it is directed towards a diagnostic (etiology, pathology, manifestations) and curative approach. But the
construction of this Institute will also take into consideration the insufficiency of the curative bio-medical
model in understanding the social consequences of long term organic and functional differences , and the
contemporary socio-political disability model that insists on social change and equalization of opportunities.
It is the diverse obstacles or facilitators encountered in real life that become a new target of priority
research. In fact, these environmental factors in interaction with a person’s impairments and functional
limitations may compromise the accomplishment of his or her current activities and social roles. They may
11
also foster full social participation, or, on the contrary, a handicap situation (social exclusion) (Nagi 1965,
WHO 1980 ; Badley 1987; Minaire 1992, Bickenbach 1993, Fougeyrollas 1995, Oliver 1993).
The Axes of Research
The proposed Institute is founded on the effective participation of people with disabilities and their organizations in all aspects of research and transfer of knowledge. This is in keeping with the emerging model of
participatory action research. At the same time, the success of the Institute will be based on a multi
methodological approach inherent in the large spectrum of research covered by an institute on the disability
process.
Proposed areas of research grounded in the participation of consumers, services providers, policy makers
and interdisciplinary researchers are:
A. Prevention of the causes of significant and long-term impairments and disabilities among the
population
For example, the domains of health and work security in relation to the problem of
- back pain or vocational acquired deafness
- road accidents
- aging
- loss of autonomy and adaptation strategies
- aging process for people living with congenital or acquired impairments and functional limitations
during life span
- access and quality of services related to perinatality and premature births
- reproductive technology
- social poverty
- social violence
These research domains are of crucial importance in understanding the disability process. These
domains of primary and secondary prevention related to long term and significant impairments and
disabilities will be addressed by cross-cutting theme institutes such as health promotion, aging, ethics or
specific disease related Institutes on cancer, genetic diseases, arthritis or mental health. Degrees of
overlap and collaborations on general predisposing and triggering risk factors and causes will depend
on the fields chosen by CIHR. A specific interest of a research institute on the disability process is the
development of knowledge on systemic secondary aggravating causes of additional health problems,
impairments and functional limitations for people living with existing organic or functional differences.
Some examples are the psychological problems caused by stigmatization, social exclusion, double
marginalization status or the aggravation of physical or intellectual limitations related to a poor access
to interpersonal stimulation, educational services, compensations of extra costs , architectural or
transportation barriers, family burden and so on.
B. The development of knowledge on significant impairments and disabilities as consequences of
diseases, trauma and others disruptions in the development or integrity of a person as well as
methods of intervention and compensation in adaptation and rehabilitation
Examples of diseases, trauma, and disruptions in development are:
Diseases:
·
stroke
·
Alzheimer
·
arthritis, multiple sclerosis, schizophrenia, glaucoma
12
Trauma:
·
spinal chord injury
·
brain injury
·
amputation
·
psychological traumas related to family or sexual violence
·
cerebral palsy
Disruptions in the development or integrity of the person:
·
Down syndrom
·
intellectual development
·
congenital deafness
·
autism
All of these conditions need to be considered in relation to all ages consumers, as well as motor, visual,
auditory, language and speech, intellectual and psychological dimensions.
This research axis is strongly connected to the rehabilitation sciences. The initiative to create a
consortium on the rehabilitation sciences as a part of the CIHR initiative is very much in keeping with a
broad-based institute on the disability process. The letter of support from this group emphasizes the
complimentary nature of the consortium and an institute on disability.
Research dimensions related to this axis which were specifically stressed during the consultation
process were:
·
giving an equitable importance to the field of adaptation and development of people with
intellectual disabilities (41% of the population with disabilities)
·
the rehabilitation of people with long term mental health problems
·
people with multi-impairments conditions
·
aging process and adaptation of people with disabilities
·
follow-up and long term maintenance of physical, intellectual and behavioral performance
·
the consideration of socio-cultural identity and life-projects
·
participation and control of the consumer in the dynamics of the interdisciplinary team
·
consideration of the real life context in the adaptation/rehabilitation individualized service plan
·
the role of family and proxies in the rehabilitation process
·
the impact of adaptation/ rehabilitation approach focused not only on physical and psycho
social performance but also on quality of social participation and quality of life outcomes.
C. The study of personal and environmental determinants of social participation defined as the
result of an interactive process
The field of disability studies is a neglected and poorly funded field of interdisciplinary and multisectoral
social research. This axis is related to the study of social integration and the understanding of complex
interactions between an individual or population. The dimensions of social participation can be hindered
or facilitated by environmental influences such as physical factors (built accessibility, climate,
geographical distance) and social factors (governmental structures and responsibilities, income security
policies and programs, economic factors as labour market and adapted resources supporting the
employment of people with:
·
·
·
·
disabilities
social poverty
accessibility to educational services
leisure facilities
13
·
·
·
·
·
public infrastructures as transportation
tele communication services
impact and access to technological development in general and to specific assistive devices
socio-cultural factors as attitudes, social network as peers, neighbours, community members,
service providers
informal social norms and formal rules as legislations, law, official policies
The development of research within a cultural and socio-political perspective is based upon the
viewpoints of the people concerned (independent living movement, social minority group approach,
evolution of paradigms, struggle against inequity factors, disruption of the exercising of a person's
rights, development of college and university teaching programs within this field).
Crucial research areas identified in our focus groups were:
- issues of doubly marginalized groups of people with disabilities such as Aboriginal people with
disabilities, new Canadians with disabilities, lesbians and gays with disabilities, women with
disabilities, older people with disabilities and children with disabilities ;
- emerging fields or cutting edge areas in disability studies such as innovations in technologies,
entrepreneurship as a viable path to employment for people with disabilities, "caring" professionals
with disabilities, parenting with a disability, eugenics
- best practices in international participatory action research into disability issues in locations in which
partners have already established research links such as Russia, the Ukraine, Japan, Mexico, and
China.
D. The organization and evaluation of services, programs and policies related to health services,
rehabilitation and multisectoral support to the social integration or inclusion of people with
organic or functional differences
This axis is also related to rehabilitation sciences , social research and disability studies. Research
priorities are:
-
-
-
studies of the evolution of needs for people with different types of disabilities and social participation
restrictions
the evolution of needs of families and proxies
studies related to changes in the health services delivery toward home care services
planning, organization and functioning of adaptation, rehabilitation and long term social integration
support services. Relevant studies are related to characteristics of rehabilitation and social
integration
analysis of the process of change in services organizations and professional practices, community
organizations controlled by consumers , social economy, independent living centres
identification of factors facilitating or hindering organizational modalities answering to needs and
characteristics of people with disabilities, and criteria of efficacy and efficiency in the use of
resources
exploration of effects of organizational modalities on families and proxies
studies related to outcomes research
development of information systems, program assessment, impact of deinstitutionalisation, as well
as studies of cost-benefit, progress measures, results and efficacy, development of assessment
tools specifically related to the application of the DCP model and specifically for measuring quality
of domains of social participation and impact of environmental factors, quality of involvement of
people with disabilities and families, etc.
It is important to be mindful of the fact that the axes of research will continue to change over time.
14
The Organizational Structure of the Institute
CIHR has been conceptualized both as a topic-specific institute as well as cross-cutting issues within these
institutes. CIRH must accommodate research on the disability process through the creation of a Disability
Institute as well through the infusion of disability research across other related institutes. For example, an
Institute on Aging must address disability as a part of its research mandate on life-span related issues; a
Cancer Institute must address the social impact of the disability process related to cancer. The vision of an
Institute on the disability process is that it would not only serve to facilitate its own research program, but at
the same time would collaborate with other related institutes to facilitate disability related research.
The Institute will be constituted by key stakeholders including:
·
·
·
·
Peoples with disabilities, including people with all types of impairments, from all age groups and
including family and family supports
Researchers from a diversity of disciplines ranging from economics, sociology, education, architecture,
engineering, etc., to traditional bio-medical and rehabilitation sciences. The Institute will be particularly
committed to the inclusion of researchers with disabilities
Service-providers including individuals involved in the continuum of health and social services as well as
other sectors (employment, education, transportation, leisure, etc.), and including the private sector
Policy-makers drawn from all levels of public and private policy making, ranging from local to national.
Governance of the Institute
Governance of the Institute will be guided by the following principles:
·
·
·
·
equitable representation of key stakeholders within the governing structure, including the participation of
people with disabilities as partners at every step of research administration and planning process
regional and linguistic representation within the governing structure
research programs will be driven by a collaborative process which includes input ranging from local to
national
research programs will be representative of the perspective of the key stakeholders
The governing council should be constituted of representatives from the 5 following regions: Atlantic,
Quebec, Ontario, Prairies and British Columbia. Representativeness of the members of the council will be
based upon the main axes of research, the diversity of stakeholders and the region of origin. The position
of chairperson would rotate according to two criteria: region of origin and type of research (biomedical and
social).
The governing process of the Institute encompasses the following items:
A. Planning of Research
It is of the utmost importance for the Institute to define and adopt a research needs assessment and
prioritization process informed by local as well as regional and national issues. It is also crucial that the
Institute collaborate with existing local and regional mechanisms and structures in the assessment and
prioritization of research themes (eg. funding agencies, universities research centers)
B. Grant Programs
15
The grant programs should address a breadth of standard as well as strategic research themes. Particular
emphasis should be placed on research projects emanating from stakeholders (e.g. persons with
disabilities) and developed in collaboration with researchers
The Grant programs should also cover other funding issues including mentoring and support of young
researchers, transfer of knowledge, dissemination of research results and support of stakeholders,
including participation of people with disabilities at every step of the research process.
C. Assessment
We propose a two-fold mechanism for assessing research: a relevancy committee and a scientific
committee. Our proposal is detailed in a further section of this text.
Representatives of the Institute on other cross-cutting institutes boards
Representatives of the Disability Process Institute should sit on other institutes’boards that are relevant to
disability to insure that the question of disability process is addressed. For example, on the boards of the
Institutes addressing the first axis of research, i.e. prevention.
Review process
A fundamental issue in disability research has been participation of consumers and stakeholder
organizations in peer review processes and evaluation of the ethical and community impact of research.
One mechanism for insuring consumer participation and involvement of stakeholder groups has been
research funding process requiring that the investigators demonstrate the commitment and full participation
of “community partners”. For example the special competition supporting research on disability-related
issues sponsored by the Social Sciences and Humanities Research Council encouraged investigators to
document the participation of partners, including other academic centers and consumer organizations
representing the community of persons with disabilities (SSHRC, 1994). Ideally partnership was intended to
foster balanced participation with consumer and stakeholder organizations in identifying relevant problems,
design and grant writing, data collection and interpretation and dissemination of results. Although this
initiative and subsequent competitions emphasizing community partnership have fostered linkages between
academic centers and consumer organizations with established research agendas, key informants
attending the focus groups emphasized that:
1. research was predominantly initiated by researchers in universities, rather than consumer
organizations
2. consumer organizations had limited resources to do the preliminary work of defining problems,
identifying potential partners and writing fully developed proposals which were more likely to receive
funding
3. full partnership was emphasized in the initial stages of project development and frequently was not
maintained throughout the duration of the project
4. consumer organizations were at a disadvantage in competing for grant funds in partnerships and in
developing independent submissions because they had limited overhead resources including research
staff who could do the preliminary research and development of proposals
5. the process of internal review from the consumer perspective for relevance, and methodological and
ethical appropriateness was usually documented by requiring submission of letters of support from
consumer organizations or recruitment of co-investigators from the organization or disability group.
There was usually no way of determining whether the letter of support or commitment to coparticipation reflected the consensus of the members or even the governing bodies of consumer
organizations. In particular it was difficult to establish the degree of support and commitment to
research problems which involved consumer participation across disability groups.
16
6. In conventional peer review of research initiatives which were defined as participatory partnership with
consumer organizations there was often no mechanism for assessing extent to which consent and coparticipation were negotiated as continuing process. Funding agencies and ethical review boards
seldom had adequate mechanisms for monitoring compliance with ethical contracts and assessing
whether each partner met their commitments to participants.
Some of the initiatives which would be undertaken by the Disability Process Institute in addressing these
criticisms of the existing system of peer review for disability research which would maximize the input of
consumers and stakeholder organizations would include:
1. Development project development grants which would allow consumers and consumer organizations
to commit time and resources and hire external consultants to develop problem statements and
fundable research proposals.
2. Development of research funding mechanisms allowing consumer organizations to submit directly to
CIHR or other research councils independently or as joint initiatives with university-based partners.
3. Development of mechanisms for including consumer expertise in (a) scientific review, (b) relevance
rating and (c) ethical review of proposed research focusing on disability issues. This would include a
two part review process as outlined below:
A. Relevancy Committee
The relevancy committee would be composed of people representative of different stakeholders
involved in the Institute. Their mandate would be to assess the relevancy of the research projects
presented. When a project is considered relevant, it is automatically referred to the scientific
committee for purpose of assessment of its scientific quality.
Criteria of choice for committee’s members:
- Regional representivity;
- Representation of all stakeholders;
- Representation of the different types of disabilities;
- Representations of families and proxies.
B.
Scientific Committee
The main objective of this committee would be to assess the scientific quality of the research projects
that were retained by the relevancy committee. One concern of the committee would be to ensure the
recruitment and participation of researchers with disabilities.
Criteria of choice for committee’s members:
- Representativeness based upon region of origin and types of research (programs)
- Scientific knowledge in the field of research
- Specific knowledge of the research theme or project
In working to develop a system of peer review of both scientific, ethical and policy relevant dimensions of
disability research, the Disability Process Institute would support development of peer review systems which
are scientifically rigorous and capable of evaluating the validity and feasibility of research developed by
investigators working in a wider range of disciplines and interdisciplinary areas. It would draw on the broad
network of individual researchers, centers of research excellence and centers of consumer policy expertise
identified in the focus groups and survey of individuals and organizations to work in the area of disability
studies. Scientific review committees evaluating applications for research funding within the structure of
individual institutes within CIHR and committees funding research which cuts across the priorities of several
17
committees would be able to draw on the expertise of members of the network who have expressed interest
and documented their areas of expertise and current research involvement.
The Disability Process Institute could also perform a dual role of training peer review committees reviewing
research in the area of disability studies and training individual consumers and representatives of consumer
organizations to participate more effectively in the scientific and ethical review processes. It could work with
committees to train reviewers without experience in the field of disability studies to enable them to
understand consumer-based frameworks for assessing interventions, such as the independent living model.
It could help interpret alternative design models, such a s participatory action research to reviewers and
committees who have not worked in research relationships in which research relationships are negotiated
and redefined over the life of the research program.
Finally the work of the Disability Process Institute could improve the peer review process within the planned
CIHR by providing resources to enable reviewers to evaluate the feasibility of proposals to conduct research
among individual consumers or within the structure of stakeholder organizations. In review of ethical
dimensions of research involving human participants and the consent of communities the Institute could
provide consultant expertise and training to enable review committees to:
1.
2.
3.
To help assess the validity of individual consent agreements for individual participants.
To assess the validity of agreements between organizations or collectivities and researchers
To monitor ongoing research processes in terms of compliance with (a) the original methodological
and ethical provisions of the protocol and (b) co-participation in the design, data collection and
interpretation and dissemination of research products.
Accountability
The accountability for this institute will exist on at least two levels:
-
The Institute will be accountable based upon its programs of research and the resulting research
outcomes;
The researchers and stakeholders funded through the Institute will be held accountable to the principles
of the Institute through requirements for transfer of knowledge and the effective use of research
outcomes by key stakeholders.
The Institute should support new emerging research teams. It is important to develop research that is
useful at the clinical and community levels and for public, para-public and private policies. The Institute
should endeavor to support service-providers involved in research in such a way that no harm be done to
the quality of services. It is of the outmost importance that the Institute adapt its practices to recognize the
time constraints that are a reality for many researchers with disabilities who very often need more time to
accomplish normal daily activities.
Transfer of Knowledge and Appropriation for Improving Health Services and Social Change
This is a crucial issue for the Institute of Research on Disability Process. The Institute must be able to
demonstrate its strong will to innovate in matters relating to dissemination of knowledge acquired through
research, e.g. alternate media, popularization, appropriation and systematic return to partners and
collaborators involved in the research. The Institute should allow mechanisms and means to disseminate
information about the Institute and its activities. As an example: Bulletin, Journal, other publications, etc.
Also, the Institute should go beyond the simple dissemination of research report or results. The research
results should be use for training of the service providers and consumers organizations and feed the
emergence and consolidation of Disability studies program in Canadian Universities.
18
Partner Network
The two key promoting partners for the Institute are The International Network on the Disability Creation
Process (INDCP) and the Canadian Centre on Disability Studies (CCDS). The International Network on the
Disability Creation Process is non-profit organizations that aims to develop research, information and
training concerning the conceptual evolution on the Disability Creation Process and the Determinants of
Social Participation of people with disabilities. This network addresses all types of impairments and
disabilities. Over the last ten years, it has contributed to the recognition of Quebec’s and Canada’s
expertise in the revision work of the International Classification of Impairments, Disabilities and Handicaps
(ICIDH). Patrick Fougeyrollas, who acts as co-principal researcher in this Institute project, is president and
director of research within this organization. The Board of Directors is made up of the representatives of
disability organizations, public organizations such as work and traffic accidents insurances (CSST-SAAQ),
l’Office des personnes handicapées du Québec (OPHQ), representatives of service providers, rehabilitation
centres, and researchers. INDCP is closely associated with the Institut de réadaptation en déficience
physique de Québec, university institute (Laval University). The INDCP is the parent organization of the
Research Network for Social Participation (RNSP). This project was subsidized, between 1994 and 1997,
within the scope of a collaborative research initiative between the Federal Status of Disabled Persons
Secretariat (HRDC) and SSHRC. It is the only Canadian network to have been subsidized within the scope
of this program. The network has more than 300 members from fifteen countries. One may note a
diversity in the composition of membership with regards to both training and fields of activity (research,
services, and consumer groups), as well as a multi-disciplinary and multi-sectoral influence.
Housed in Winnipeg, the Canadian Centre on Disability Studies is affiliated with the University of Manitoba.
CCDS board members, research committee members and research associates are located in educational,
advocacy and research centres across Canada. Incorporated in 1995, the Canadian Centre on Disability
Studies (CCDS) has its roots in Canadian disability organizations, community groups and representatives
from different faculties at a number of universities across Canada. A collaborative effort between the
community, University of Manitoba and the Government of Canada led to the establishment of an
Endowment Fund to make the Centre a reality. CCDS has established research project partnerships with
disability organizations, universities and colleges, governments and public and private agencies locally,
nationally and internationally. In partnership with the University of Manitoba a national summer institute on
curriculum for Disability Studies programs was held in 1996, and a Graduate program in Disability Studies is
being developed. CCDS is being proposed as the site for the international Disabilities Studies Association
meetings in 2001. In fact, the CCDS is closely associated to Canadian associations that promote the rights
of people with disabilities, community groups and representatives of different faculties of the University of
Manitoba. The support of the CCDS is essential and unavoidable in a Canadian Institute on the Disability
Process.
Table 1 provides an overview of the individuals and organizations who have committed to association with a
Canadian Health Institute for Disability Research. While this list is large and very diverse, it represents only
a fraction of the potential network that would be developed through the creation of a Canadian Health
Institute for Disability Research.
19
e I: Database of Researchers in Disability Studies
isation
Affiliated Organisations
Field of Interest
•Influence of disability perception on family
•Services process
•Immigration, aging and disability
•General condition of people with disabilities in ethnocultural communities
lti-ethnique
on des
icapées
Administration faculty of Ottawa University (OU)
•Performance measuring at work
ARCH: A Legal Resource Centre for Persons with
Disabilities
•Legal research: charter of rights, human rights, disability support. etc.
•Disability income programs
•Federal/provincial fiscal arrangements in relation to disability
Special education department of Sherbrook University •School and pre-school integration for kids with severe disabilities
(SU)
•Transition to adult life of young people with motor disabilities
•Preparation to work for young people with multi-disabilities
Ministry of Health and Social services
•Autonomy and social participation
Centre-Normand-Laramée
Centre de services en déficience intellectuelle
Mauricie/Centre du Québec (CSDI MCQ)
IRDPQ
CSDI MCQ
Leisure sciences and communication department of
Quebec University at Trois-Rivières
•International index and dictionary of rehabilitation and social integration
•Computer and clinical therapy for people with disability
Regional authority of Health and Social services of
Mauricie and Centre-du-Québec
Association pour la déficience intellectuelle – Centrede-la-Mauricie (ADI)
International network on disability creation process
(INDCP)
CSDI MCQ
Queen’s University, School of Rehabilitation Therapy
•Disability Policy Making
•Consumer Organizations
•Community Participation
Surrey Place Centre
•Autism
•Psy. and Behavioral Disorder in Persons with Mental Retardation and Autism
Ontario Association on Developmental Disabilities
•Quality of Life
•Families
•Vocational Supports
•People with head injuries
aptation
arie-Paule
•State and aging
Aboriginal People with Disabilities Roundtable
Education sciences of Quebec University at TroisRivière
•Intellectual disabilities
IRDPQ
•Visual disability rehabilitation
•Life habit and social integration
Institut de réadaptation de Montréal
•Intervention project
•Reorganisation and civic follow up
CH St-Julien
•Disability
Psychoeducation department of Quebec University at
Trois-Rivières
Rehabilitation department of Laval University
•Back pain and work
Dew Research
Office des personnes handicapées du Québec (OPHQ) •Evaluation and follow up of government policies and programs
•Poverty and condition of life
•Family support
•Fair compensation
School of Rehabilitation Sciences at Ottawa
University
•Bilingulaism and rehabilitation
•Hearing impairment
Linguistic and languages didactic department of
Quebec University at Montreal
•Bilingualism and rehabilitation
•Hearing impairment
Social service school of Laval University
•social and professional reintegration of medullary injured
•Adaptation process of parents with disabled children
Andrée
Faculty of Health Sciences, School of rehabilitation of
Ottawa University
•Young adult with hearing impairment in regular school
•Early identification of hearing impairment
•Audiology
Alice
Audiology and Speech-Language Pathology Program
•Communication, culturally-based miscommunication
re-Jehanne
of Ottawa University
Association de l’Ouest de l’Île pour les handicapées
intellectuels
DAWN Canada
•Sleeping impairment
:
personnes
ences reliées
atrick
•Teaching
Religious sciences department of Quebec University at
Rimouski (QUR)
IRDPQ and INDCP
•Conceptual evaluation in the field of disability process
•ICIDH
•Personal and environmental determinants of social participation
•Progression and outcomes measures
•Program and social policies evaluation
Psychoeducation department of Quebec University at
Trois-Rivières
Audiology and speech therapy program of Ottawa
University
•Social integration of people with communication disorders
IRPDQ
•Head injuries
•Medullar injuries
•Mental health
•Community and disability
Centre Butter-Savoy and Horizon
Department of Nursing, University of Manitoba
•Multisensory environment & quality of life
Faculty of Rehabilitation Medicine
OPHQ
•Adapted books, Braille, communication
Project Inter – Seed Research officer with the Ministry
of Health, Policy Planning & Legislation.
University of Calgary Faculty of Ed. & Community
Rehabilitation Disability Studies Program
arlotte
Nova Scotia Allergy and Environmental Health
Association
aptation de
Institut de réadaptation de Montréal, service Social
•Partnership research, social construction and Disability, Narrative approaches to
community development. International construction and Interdisciplinary models
Studies.
•Social integration of people with head injuries
•Empowerment
Sturgeon Creek Enterprises
Office for Disability Issues
The Abilities Foundation of Nova Scotia
University of Victoria, Education and Nursing,
Interdisciplinary Doctoral Student
University of Victoria, Faculty of Human and Social
Development
Centre-du-Florès
•Collaborative research methodology
•Partnerships in community
•Entrepreneurship
•Community development
nformatique
erminologie
on et de
IRDPQ
•International index and dictionary of rehabilitation and social integration
•Computer and clinical therapy for people with disability
Centre-Normand-Laraamée
-
Intellectual disabilities
Centre-du-Florès
-
Intellectual disabilities
Psychoeducation department of Montreal University
-
Intellectual disabilities
Audiology and speech therapy program of Ottawa
University
•Work integration of people with communication disorders
Psychoeducation depatment of Quebec University at
Trois-Rivières
Equal Opportunity Office, City of Toronto
Mount Royal College, Dep’t Physical Education and
Recreation
•Disability and sport
•Adapted physical education
•Therapeutic recreation
Audiology and speech therapy program of Ottawa
University
-
Hearing disorders
The Migraine Association of Canada
Psychology school of Laval University
Ryerson University
•Cognitive evaluation
•Cognitive training
•Education psychology
University of Alberta
University of Manitoba Faculty of Education
•Social acceptance- friendships
•Community living-participation
•Inclusive education
University of Alberta. Dep’t of Occupational Therapy,
Faculty of Rehab
INDCP
•Social policy development and evaluation
Learning Disabilities Association
Canadian Injured Worker’s Alliance
•Literacy and Injured Workers
•Voc. Rehab and Re-employment of Injured Workers
University of Calgary
•Partnership research
•Social Construction & Disability
•Narrative approaches to research & community development
•International constructions and interdisciplinary models re: Disability Studies
Canadian Mental Health Association
•Violence towards women by mental health providers
•Housing
•Cross cultural mental health
•Experience in consumer empowerment involvement
Occupational Therapy of Rehabilitation Sciences of
Ottawa University
•Occupational therapy
•Coordination disorders and learning disability
Queen’s University, School of Rehabilitation Therapy
•Aging and disability
•Coping & social support among people with disabilities
•Spirituality & disability
•Community integration following rehabilitation
•Policy participation among people with disabilities
•Models of service to people with disabilities
School of Rehabilitation Sciences of Ottawa
University
•Impairment, technology and space capacities
Canadian Paraplegic Association Ontario
•Aging with a spinal cord injury in progress
•Employment participation for people with SCI
Department of Psychology, Queen’s University
Canadian Cystic Fibrosis Foundation
Huntington Society of Canada
University of Waterloo of Renison College
•Disability studies
•Quality of life in health and rehabilitation promotion
•Autonomy
•Physical, psychological, sexual and emotional abuse of people with disabilities
•School integration of disabled people in post-secondary school
•Research and advocacy in strategies of legislation
University of Calgary
-
Society for
Disabled
IRDPQ
Independent living and rehabilitation
•Quality of life
•Service and technology
•Evaluation and measures of life habits
•Children and motor disabilities
Centre for Research and Education in Human Services •Individualized funding
•Family support
•Employment
•Informal/formal empowerment
•Community Support
•Dual Diagnosis
•Advocacy & Grassroots Organizations
•Evaluation of social integration
onnes
Québec
ntoine
Children’s Hospital of Eastern Ontario
Learning Disabilities Association of Canada (LDAC)
CSDI MCQ
Disability Resource Centre - MSC 274, University of
Calgary
•Independent Living philosophy
Centre de réadaptation La Triade
•Programs and services evaluation
•Training and teaching in the health and social service network
University of Waterloo Recreation and Leisure Studies
•Social Policy
•Inclusive communities
•Community development
•Persons with developmental disabilities
•Older adults
•Participatory action research
Psychology departement of Laval University
•Computer science and reeducation
•Cognitive Reeducation
•Down Syndrome
•Alzheimer disease
•Thyroid function
•Regulation of iron metabolism
•Importance of iron in health and human behaviour
Neurogenetics Laboratory, Surrey Place Centre
Brain Injury Association of Nova Scotia
, Elizabeth
Linguistic and languages didactic department of
Quebec University at Montreal
•Bilingualism and rehabilitation
•Hearing impairment
-
Intellectual disabilities
CSDI MCQ
Geriatrics unity research of LU
•Aging
CSDI MCQ
Centre Butter-Savoy and Horizon
Canadian Association of the Deaf
•Transportation
•Communication
•Education
•Technology
•Political socialization
•Human rights
•Employment
IRDPQ
•Collaboration between clinical personnel and parents with disabled children
Ryerson School of Disability Studies, Centre for
Evaluation Research in Human Services
Glenn Crombie Centre for Disability Services
•Many different areas
Doctoral Program Rehabilitation Science, Faculty of
Health Science, University of Western Ontario
•ICIDH
•Developmental disabilities
•Enhanced quality of life
Rehabilitation department of Laval University
•Transition, family, day nursery/work
énard, Astrid
•Nutrition, collaboration of family and intervener
Occupational Therapy program of Ottawa University
•Quality of services evaluation
•Occupational therapy
•Psychiatric impairment
University of Prince Edward Island
•Literacy
•Quality of Life of Children with special needs
•Inclusive Education
Human Resources Development Canada
INDCP
•Training
Public health board of Quebec
•Nurse practices with South-East refuges with mental disorders
•Severe mental disorders and community life
McMaster University, School of Rehabilitation
Science
•Aging and Disability
•Spinal cord injuries
•History of Med. and Rehab
•Canadian Disability Policy
•War and Disability in the 20th Century
•Human Rights and Disability
•Comparative Sociological History of Disability
OPHQ
•Policies and programs evaluation and follow up
•Leisure
•Domestic upholding
Linguistic and languages didactic department of
Quebec University at Montreal
•Bilingualism and rehabilitation
•Hearing impairment
Canadian Centre on Disability Studies
Muriel
Faculty of Health Sciences - McMaster University
Institute for Clinical Evaluative Sciences
Nursing professional Practice of the Patterson
education Centre, Ottawa Hospital-Civic Campus
•Communication disabilities
Conclusion
The Health Institute Design Grant process has created an air of expectation among all stakeholders as to
the creation of an Institute on the disability process. At the same time, these stakeholders have agreed that
the process has just begun and that the framework for this Institute needs to evolve over time with
continuing and meaningful involvement from all relevant constituents.
33
APPENDIX A: BIBLIOGRAPHY
Abberley P. The significance of the OPCS Disability Survey’s.In Oliver M. (ed) Social Work : Disabled People
and Disabling Environments, London : Jessica Kingsley Publishers. 1993.
Abberley P. «The concept of oppression and the development of a social theory of disability»,Disability,
Handicap and Society, vol. 2, no 1, 1987.
Abberley, P. « Disabling Ideology in Health and Welfare-the case of occupational therapy ». Disability &
Society, vol.10, n? 2 : 221-232, 1995.
Abberley, P. « Work, utopia and impairment. » In: Barton, L- (Ed.). Disability, and Society, Longman, London :
61-80, 1996.
Abery, B.H. et Fahnestock, M. « Enhancing the social inclusion of persons with developmental disabilities.»
In M.F. Hayden & B.H. Abery (Eds.) Challenges for a service system in transition. Baltimore: Paul
Brookes : 83-120, 1994.
Abramson, L., Joseph, C., Ripke, B., Schweitzer, K. « Strategy to Increase Job tenure for People with
Psychiatric Disabilities: An overview of the Back to Work Program». American Rehabilitation, vol.20,
n? 11 : 13-17, non-daté.
Ainley, S., Becker, G., Coleman, L. (Eds.). The Dilemma of Difference: a Multidisciplinary View of Stigma.
Plenum Press, London, 1986.
Allie, R. La main-d'oeuvre ayant des incapacités au Québec. Collection Statistiques, Office des personnes
handicapées du Québec, Gouvernement du Québec, 1993.
Alper, S., Wisniewski, L. «Including Students with Severe Disabilities in General Education Setting».Remedial
and Special Education, vol.15 : 4-13, 1994.
American Association of Retired Persons. Barriers to Living Independently for Older Women with Disabilities:
Housing. Washington DC: AARP Public Policy Institute, 1991.
American Association on Mental Retardation. Mental retardation: Definition. classification, and svstems
supports (9th ed.). Washington: American Association on Mental Retardation, 1992.
Amundson, R. « Disability, Handicap and the Environment.» Journal of Social Philosophy, vol.23, 1992.
Amundson, R. et al. « Vocation therapy : a community normalization experience for people with long-term
mental illness. » Psychosocial Reabilitation Journal, vol.14, n? 3 : 81-91, 1991.
Anderson, J. « How technology brings blind people into the workplace. » Harvard Business Review, vol.67,
n? 2 : 36-40, 1989.
Anderson, J.M., Blue, C. and Lau, A. « Women's Perspectives On Chronic: Ethnicity, Ideology and Restructuring
of Life. » Social Science and Medicine vol.33: 101, 1991.
Anderson, R., Bury M. « Introduction. » In: Anderson R, Bury M, eds. Living with Chronic Illness: the
Experience of Patients and their Families. London: Unwin Hyman, 1988.
Anspach, R.R. « From stigma to identity policies: political activism among the physically disabled and former
mental patients. » Social Science & Medicine, vol.13A : 765-773, 1979.
Armstrong, Pat; Armstrong, Hugh; Choiniere, Jacqueline; Feldberg, Gina; White, Jerry
Take Care: Warning Signals for Canada’s Health System. Toronto: Garamond Press. 1994
Arons, B., Schauer, C. « Recovery and rehabilitation of Persons with Severe Mental Illness:A vision».
American rehabilitation, vol.20, n? 4 : 18-24, 1994-1995.
Asch, A., Fine, M. (Eds.). Women with Disabilities: Essays in Psychology Culture and Politics
. Temple
University Press, Philadelphia, 1988.
Association canadienne pour la santé mentale / division Québec (ACSM). «La longue marche vers
l'intégration ». Synapse, vol.1, n? 2 : 4, 1993.
Association du Québec pour l’intégration sociale. Déficience intellectuelle hier: l'exclusion. Aujourd'hui:
l'intégration. Le changement, ça se travaille ensemble! 5e congrès annuel de l'AQIS (Association du
Québec pour l'Intégration Sociale), 23-25mai 1996.
Astin, M., Lawton, D., Hirst M. «The Prevalence of Pain in a Disabled Population». Soc. Sci. Med., England,
York, vol.42, n? 11 : 1457-1464, 1996.
Audisio, M. « Mental illness, handicap, and the introduction of legal positive discrimination in France.»
International Journal of Social Psychiatry, vol.23 : 144-148, 1987.
34
Bachrach, L.L. « Deinstitutionalization. The meaning of the least restrictive environment». In. Robert H.
Bruiminks et K. Charlie Lakin (Eds), Baltimore, Paul H Brookes Publishing: 23-36, 1985.
Badley E.M. « The ICIDH Format, «Application in different Settings and distinction between Disability and
Handicap», International Disability Studies, vol.9, no 3, 1987.
Badley E.M. «An introduction to the Concepts and Classifications of the ICIDH»,Disability and Rehabilitation,
IS n? 4 : 161-178, 1993.
Badley. E. « The genesis of handicap : definition, models of disablement, and role of external factors.»
Disability and Rehabilitation, vol.17, n? 2 : 53-62, 1995.
Bailey, Darlyne Using Participatory Research in Community Consortia Development and Evaluation: Lessons
from the Beginning of a Story. American Sociologist 23(4), 1992.
Baker, F. et Intagliata, J. « Quality of life in the evaluation of community support systems. » Evaluation and
Program Planning, vol.5 : 69-79, 1982.
Balogh, R., Simson, A., Bond, S. « Involving Clients in Clinical Audits of Mental Health Services». International
Journal for Quality in Health Care, Printed in Great Britain, vol.7, n? 4 : 343-353, 1995.
Barnartt, S., Seelnian, K. « A comparison on federal laws toward the disabled and racial/ethnic groups in the
USA. » Disability, Handicap and Society,vol.37, 1988.
Barnes, C. « Theories of disability and the origins of the oppression of disabled people in western society.»
ln: Barton, L. (Ed.), Disability and Society, Longman, London : 43, 1996.
Barr, J. Social support for head iniured individuals and their family caregivers
. Master's thesis, Dalhousie
University, 1993.
Barrera, M.E. et Vella, D.M. « Disabled and Nondisabled infants'interactions with their mothers.» The
American Journal of Occupationnal Therapy, vol.41, n? 3 : 168-172, 1987.
Barrette, J. Toward a social model on the integration of persons with human communication disorders into
workplace. Ottawa, University of Ottawa, 1998.
Barry, M. « Rules for equalization of opportunities for persons with disabilitie
s. » ICIDH International Network,
vol.2 : 6-8, 1995.
Barry, M. «Le concept de l’incapacité. The Disability Concept»,Réseau International CIDIH. International ICIDH
Network, vol.2, no 2-3, 1989.
Batavia, A.I., Dejong, G., et McKnew, L.B. «Toward a national personal assistance program : The independant
living model of long-term care for persons with disabilities.» Journal of Health Politics, Policy and Law,
vol.16, n? 3 : 523-545, 1991.
Baum, C.M., Law, M. « Occupational therapy practice : focusing on occupational performance. » The
American Journal of Occupation Therapy, vol.51, n? 4 : 1997.
Beauchamps, A. Qualité de vie versus aides techniques. Colloque, André Beauchamps, 1993.
Beaulieu, M. «L’application du concept de handicap dans un centre de jour d’intégration communautaire»,
Réseau international CIDIH, vol. 5, no 1-2 : 11-12, Québec, 1992.
Belgrave, F.Z. « The effectiveness of strategies for increasing social interaction with a physically disabled
person. » Journal of Applied Social Psychology, vol.14 : 147-161, 1993.
Beresford, P. « Poverty and Disabled People: challenging dominant debates and policies.». Disability &
Society, vol.11, n? 4 : 553-567, 1996.
Berkanovic, E. et Telesky, C. « Mexican-American, Black-American and White-American differences in
reporting illnesses, disability and physician visits for illnesses.
» Social Science and Medicine, vol.10,
n? 6 : 567-577, 1985.
Bertolote, J.M., Sartorius, N. WHO Initiative of Support to People Disabled by Mental Illness: some issues and
concepts related to rehabilitation, 1996.
Bethoux, F., Calmels, P., Gautheron, V., Minaire, P. «Quality of life of the spouses of stroke patients: a
preliminary study ». International Journal of Rehabilitation Research, vol.19 : 291-299, 1996.
Bickenbach, J.E. Physical Disability and Social Policy. Toronto, University of Toronto Press, 1993.
Bickenbach, J.E., Chatterji, S., Badley, E.M., Üstün, T.B. «Models of disablement, universalism and the
international classification of impairments, disabilities and handicaps.» Social Science & Medicine,
vol.48 : 1173-1187, 1999.
35
Blackford, K.A.. The Process of Growing Up for Children Whose Parents Have Multiple Sclerosis: A MicroHistorical Sociological Perspective.Doctoral Dissertation, York University, North York (Under revisions
for University of Toronto Press) : 1-295, 1995
Blackford, K.A. Talking It Out In the Family. Toronto and Sudbury: Persons United for Self Help : 1-40, 1989
Blackford, K.A., Cuthbertson, C., Odette, F. & Ticoll, M. (Eds.)Women and Disability, Summer Issue, Canadian
Woman Studies, North York: York University, 1993
Blackford, K.A. «Caring to Overcome Differences, Inequities and Lifestyle Pressure: Living with Parental
Disability », in K.Blackford, M.L. Garceau & S. Kirby (Eds.)Success Stories in “Feminizing” Institutions,
Ottawa: University of Ottawa Press, In press.
Blackford, K.A. «Can others really do our marching for us? in: M. Assheton-Smith & B. Spronk (Eds.)» Women
and Social Location: Our Lives, Our Research. Charlottetown, P.E.I.: Gynergy Books : 56-68, 1993.
Blackford, K.A., Richardson, H. & Grieve, S.«Prenatal education principles to meet the needs of mothers with
disabilities». Journal of Advanced Nursing, Accepted for publication.
Blackford, K.A. «A Child’s Growing Up with a Parent Who Has Multiple Sclerosis: Theory and Experience
».
Disability & Society, Fall, 14 (5), In press
Blackford, K.A. «Communication skills of children whose parents have multiple sclerosis», Disability, Pregnancy
& Parenthood, 24 October: 11-12, 1998.
Blackwell, G. « New center helping disabled get ahead in the work place. » Cumputing Canada, avril : 16-17,
1991.
Blanche, I.E. Alma Coping with Culture, poverty and disability. The American Journal of Occupational Therapy.
50(4): 265-276, 1996.
Blatt, B. The conquest of mental retardation. Pro-Ed. : Austin, TX, 1987.
Blaxter, M. The meaning of disability. London: Heineman Educational Books, 1976.
Bogden, R. et Taylor, S.J. « Conclusion: The next wave. » In S.J. Taylor, D. Biklen, & J. Knoll (Eds.),
Community Integration for- People with Severe Disabilities: 209-213. New York, NY, Teachers
College Press, 1987.
Bolduc, M. «Les enjeux politiques et sociaux d’une révision en profondeur de la CIDIH et de l’introduction des
facteurs environnementaux. Synthèse d’une présentation à la rencontre nord-américaine de la révision
de la CIDIH et au Colloque sur les déterminants environnementaux de la participation sociale: enjeux
et perspectives», Réseau international CIDIH et facteurs environnementaux, vol. 8, no 3 : 55-60,
Québec, 1996.
Bolduc, M. « Une approche conceptuelle des conséquences des maladies et traumatismes qui tient mieux
compte de l’environnment physique et social. » In Actes du 6e Congrès annuel de l’Association
latine pour l’analyse des systèmes de santé : 245-249, 25 au 27 mai, Editions Sciences des
systèmes, Montréal 1995.
Bolduc, M. «Making equal opportunity a reality : An insurance plan covering the additional costs associated with
impairments, disabilities and handicap situations»,ICIDH International Network, vol. 5, no 1-2 : 40-51,
1992.
Bolduc, M. «Social and political issues of an ICIDH in depth revision and the introduction of Environmental
Factors», ICIDH and Environmental Factors ICIDH Network, vol. 8, no3: 49-54, 1996.
Bolduc, M., Fougeyrollas P. «Présentation du Réseau pour la participation sociale, réseau de recherche et
d’information sur les déterminants environnementaux des situations de handicap et de la participation
sociale des personnes ayant des incapacités», Réseau international CIDIH et facteurs
environnementaux, vol. 7, no 3 et vol. 8, no 1, Québec, 1995.
Bolduc, M. Pour un projet de société axé sur l'égalité des chances et la participation sociale. Texte préparé
dans le cadre du Colloque scientifique International "dix ans de recherche à partager" les limitations
fonctionnelles et leurs conséquences sociales: Bilan et perspectives, 1992.
Bolduc, M. Pour un Québec où il n'y aura plus de "personnes handicapées". Mémoire présenté à la
Commission de la Capitale sur l'avenir du Québec. Rédigé par Mario Bolduc pour le Comité québécois
sur la CIDIH (Classification internationale des déficiences, incapacités et handicaps), Février 1995.
36
Bolduc, M. Analyse de la cohérence de politiques québécoises à l'égard des personnes ayant des incapacités.
Première partie: Les clientèles ou problématiques considérées. Direction générale de l'Évaluation et
de la planification, ministère de la Santé et des Services sociaux, 1986.
Bolduc, M., Boucher, N. La sécurité sociale dans le Canada de demain. Mémoire présenté au Comité
permanent du développement des ressources humaines. Texte préparé par Mario Bolduc et Normand
Boucher pour La Société Canadienne de la CIDIH et le Réseau de recherche et d'information sur la
participation sociale, 1994.
Boschen, A. K. Variables qui influencent la vie autonome des personnes ayant une déficience physique.
Département d'ergothérapie, Université de Toronto, Toronto, Ontario. Service de la recherche Centre
de réadaptation Hugh MacMillan,Toronto, Ontario, 1995.
Boschen, K.A. Variables qui influencent la vie autonome des personnes ayant une déficience physique.
Somaire, département d’ergothérapie, Université de Toronto, 1995.
Boston, Patricia, et al Using Participatory Action Research to Understand the Meanings Aboriginal Canadians
Attribute to the Rising Incidence of Diabetes. Chronic Diseases in Canada: 18(1), 1997
Bouchard, D. «L’utilisation de la CIDIH: un essai dans un centre de réadaptation pour enfant»,Réseau
international CIDIH, vol. 5, no 1-2 : 15-16, Québec, 1992.
Bowe, F. « Accessible transportation. » In N-M- Crewe & I.K. Zola (Eds.), Independent Living_for Physically
Disabled People. Washington DC: Jossey-Bass, 1983.
Bowley, A. Action Research and Rapid Appraisal Techniques «in Research Methods in Health». Open
University Press: 366-369, 1997
Bransma, J.W. et al. « Reflection on the definition of impairment and disability as defined by the World Health
Organization ». Disability and Rehabilitation, vol.17, n? 3-4 : 119-127, 1995.
Brendan, Gleeson Beyond Goodwill: The Materialist View of Disability. Social Alternatives: 18(1), 1999
Brock, D. W. « Justice and the ADA : does prioritizing and rationing health care discriminate against the
disabled ? » Providence, Social Philosophy and Policy Foundation: 159-185, 1995.
Bronfenbrenner, U. « Toward an experimental ecology of human development. » American Psychologist,
vol.32 : 513-530, 1977.
Brook, N.A. « Self-Empowerment Among Adults With Severe Physical Disability: A Case Study. » Journal of
Sociology and Social Welfare, vol.18 : 103, 1991.
Brown, E.S. Creating a Disability Mythology. International Journal of Rehabilitation Research. 15: 227-233,
1992.
Brown, I., Raphael, D. et Renwick, K. The Quality of Life Profile. Toronto: Centre for Health Promotion, 1993.
Brown, L.D. et Tandon, R. « Ideology and political economy in inquiry : action research and participatory
research. » Journal of applied behavioral science, vol.19 : 277-294, 1983.
Brown, R. « The search for well-being » Fine balances. Symposium report : women and well-being. Ottawa,
Canadien advisory council on the status of women, 1989.
Brown, Y. Bulletin du projet d'évaluation de la qualité de vie. The center for health promotion, Université de
Toronto, Ontario, 1995.
Brunelle, Y., Rochon, M., Saucier, A., et Robine, J.M. «Understanding changes in the health status.» In J.M.
Robine, C.D. Mathers, M.R. Bone et I. Romieu (Eds.) Calcul des espérances de vie en santé :
harmonisation, acquis et perspectives : 287-308, Montrouge, France, Éditions John Libbey Eurotext,
1993.
Bruun, W., Torgeir.« Disability models in geriatrics: comprehensive rather than competing models should be
promoted. » Disability and Rehabilitation, vol.19, n? 11 : 480-483, 1997.
Buell, M.K., M. Minnes, P. « An Acculturation Perspective on Deinstitutionalization and Service Delivery.»
Journal on Developmental Disabilities, vol.3, n? 2 : 94-107, 1994.
Bulletin de liaison en déficience intellectuelle. L'idée. Centre Butters-Savoy, Granby, Québec, vol.6, n? 2,
1995.
Bunch, G.O. Inclusion : how to : essential classroom strategies. Toronto, Inclusion Press, 1999.
Bunch, G.O. The curriculum and the learning-impaired student : theoretical and practicle considerations. Little,
Brown, Boston College-Hill publication, 1987.
37
Butler, R. et Bowlby, S. « Bodies and space : an exploration of disabled people’s experiences of public space.»
Society and Space, vol.15 : 411-433, 1997.
Bynoe I, Oliver M, Barnes C. Equal rights for disabled people: the case for a new law. London, Institute for
Public Policy, 1991.
Campbell, M.L. A Life-Course Perspective: Aging with Long-Term Disability. Maximizing Human Potential.
1(3): 1-2, 1996. A Research Perspective: Next Steps in Bridging the Gap Between Aging and
Disability. Maximizing Human Potential. 3(4): 1-2, 1996. Fact Sheet: Development of Survey
Instrument Changing Needs and Life Circumstances of Persons Aging With Disability. Rehabilitation
Research and Training Center on Aging with Disability. 1996.
Campbell, M.L. Next steps in bridging the gap between aging and disability: a research perspective Maximizing
Human Potential. Quarterly Newsletter of the Aging. Disability and Rehabilitation Network of the
American Society on Aging. 3(4), 1996
Campbell, M.L.; Sheets, D.; Mitchell, J,; McNeal, D. Incorporating consumer expertise in applied social
research on aging with disability. In (Eds.) Participatory Action Research. Maryland: Brook Publishing,
1996
Canada: National Advisory Council on Aging Member’s Editorial. Expression: Newsletter of the National
Advisory Council on Aging. 11(1).
Canada NewsWire Global Healthcare Experts Unveil Leading-Edge Research Expected to Impact Plans for
Healthcare Reform , 1999.
Canadian association for independent living Centers. Guidelines for independent living centres in Canada.
Ottawa, ON., Canadian association for independent living centres, 1991.
Canadian Society for the ICIDH — Comité Québécois sur la CIDIH. Consensus conference on the ICIDH2 Beta
1 Draft, November 1997, In Canadian Report on ICIDH 2 Beta Testing 1, Canadian Institute on Health
Information, 1998.
Canadian Sub-Committee on the Status of Persons with Disabilities Sub-Committee on the Status of Persons
with Disabilities of the Standing Committee on Human Resources Development and the Status of
Persons with
Disabilities. Ottawa: House of Commons Canada, 1998.
Cantrell, Robert P., Martha L. Walker Participatory Action Research and Policy Making: Consumers and
Nonconsumers deliberate the Reauthorization of the Rehabilitation Act. Rehabilitation Counseling
Bulletin: 37(1), 1993.
Caplan, G. Support system and community mental health : concept development. New York: Behavioural
Publications, 1974.
Carling, P. J. « Homes or group homes: Future approaches to housing support, and integration for people with
psychiatric disabilities. Adult Residential Care Journal, vol.6 : 87-96, 1992.
Carling, P. J. « Major mental illness, housing, supports: The promise of community intégration. » American
Psychologist, vol.45 : 969-975, 1990.
Caro, P. « Parent-infant interaction between parents and their infants with severe handicaps.» In S.
Dansereau, B. Terrisse, J-M. Bouchard (Eds.). Education familiale et intervention précoce. Montréal,
QC: Les éditions d'ARC, 1990.
Carpenter, S. « The canadian model of independent living centres : trends and issues. » Rehabilitation Digest,
vol.22, n? 2 : 3-7, 1991.
Carpenter, S. A functional perspectives of the independent living movement in Canada. Centre for
Independent Living in Toronto Manual. Toronto: Centre for Independent Living in Toronto, 1987.
Castelein P., Noots-Villers P. «Création et expérimentation d’un «outil» d’évaluation systémique de patients
cérébrolésés; ESOPE», Réseau international CIDIH et facteurs environnementaux, vol. 7, no 2,
Québec, 1994.
Centre Technique National d'Études et de recherches sur les Handicaps et les Inadaptations. (CTNERHI).
« Autisme et Psychoses Infantiles ». Handicaps et Inadaptation, les cahiers du CTNERHI : 67-68,
1995.
Chaib, M. « La politique suédoise d'intégration des personnes handicapées en question; un défi pour l'État
providence ». Handicaps et Inadaptations - Les cahiers du CTNERHI,n? 74, 1997.
38
Chamie, M. « Survey design strategies for the study of disability.» World Health Statistic Quaterly, vol.42, n?
3 : 122-140, 1989.
Charmaz, K. Good days, bad days: The self in chronic illness and time. New Jersey: Rutgers Univ. Press,
1991.
Christiansen, C., Baum, C. Person-environment occupational performance : a conceptual model for practice.
In C. Christiansen and C. Baum (eds), Occupational Therapy : Enabling function and well-being (2nd
ed.) Thorofare, NJ : SLACK Inc., 1997.
Clear, Mike Disability and the Political Perspective. Social Alternatives. 18(1): 6-11, 1999.
Coleridge, P. Attitudes: Breaking Out of the Vicious Circle. Enabling Education Network, 1992.
Colvez, A., Robine, J. « Problems encountered in using the concepts of impairment, disability and handicap
in a health assessment survey of the elderly in upper Normandy. International Rehabilitative Medicine,
vol.8 : 18, 1986.
Commission canadienne des droits de la personne. « Emploi: trouver les réponses à l'intérieur de soi.» Forum
des droits de la personne, Commission canadienne des droits de la personne, vol.6, n? 1, 1996.
Condon, S.G. « Hiring, the handicapped confronts cultural uneasiness.» Personnel Journal, vol.66, n? 4 :
28-38, 1987.
Confédération des organismes de personnes handicapées du Québec (COPHAN). Citoyens à part
entière...avec ou sans limitations fonctionnelles, Québec, COPHAN, 1997.
Conrad, P. « The experience of illness: recent and new directions in the experience and management of
chronic illness. » In: Roth JA, Conrad P (Eds.), Research in the Sociology of Health Care. vol.6 : 1-31,
Greenwich, CT: JAI Press, 1987.
Conseil de l'Europe. Accessibilité de l'environnement bâti. Conseil de l'Europe, Parties II et III de la brochure,
comité d'experts sur la formation du personnel, autre que de santé, s'occupant de réadaptation
(Architectes et Urbanistes), Conseil de l'Europe, comité pour la réadaptation et l'intégration des
personnes handicapées. 14e session Strasbourg, 1995.
Conseil de l'Europe. Activités en faveur des personnes handicapées, Accord partiel dans le domaine social
et de la santé publique. Rapport d'activité 1991-1992, Strasbourg, Les éditions du Conseil de l'Europe,
1993.
Conseil de l'Europe. Comité pour la réadaptation et l'intégration des personnes handicapées.Groupe de travail
sur le vieillissement des personnes handicpées (P-RR-VPH) 3e Session, Strasbourg, 1995.
Conseil de l'Europe. Intégration des personnes handicapées. Conseil de l'Europe, Accord partiel dans le
domaine social et de la santé publique, rapport d'activité 1993-1994, Strasbourg, 1995.
Conseil de l'Europe. L'emploi et l'utilité de la CIH pour la politique et la planification des pouvoirs publics
.
Édition du Conseil de l'Europe, 1995.
Conseil de l'Europe. Rapports, recommandations, résolutions et autres documents publiés dans le domaine
de la réadaptation et l'intégration des personnes handicapées, Strasbourg, Conseil de l'Europe, 1997.
Conseil de l'Europe. Vieillissement des personnes handicapées. Conseil de l'Europe. Accord partiel dans le
domaine social et de la santé publique CD-P-RR/T, 1996.
Conseil des Canadiens avec Déficiences (CCD). Identification des failles au système: Le Système de sécurité
sociale et les personnes ayant des incapacités. Présentation faite dans le cadre de la phase au
Comité du développement des ressources humaines, Winnipeg, Manitoba, 1994.
Conseil national des transports. Mesures en faveur des personnes handicapées dans les différents moyens
de transport et les différents pays. C.N.T., Conseil National des Transports, 1995.
Conseil National des Transports. Transports des personnes handicapées, législations et réglementations.
Comité de liaison pour le transport des personnes handicapées (COLITRAH), 1995.
Cooper, Charlotte. « Can a Fat Women Call Herself Disabled? » Disability & Society, vol.12, n? 1 : 31-41,
1997.
COPOH. Définition des paramètres de la vie autonome. COPOH: Winnipeg, non-daté.
Côté M., Fougeyrollas P. Système québécois de classement des aides techniques pour les personnes
handicapées. Québec, Conseil consultatif sur les aides technologiques et CQCIDIH, 1994.
Cottone,L.P. et Cottone, R.R. « Women with Disabilities: on the paradox of Empowerment and the Need for
a Trans-systemic and Feminist Perspective. » Journal of Applied Rehabilitation counseling,vol.23, n?
4 : 20-25, 1992.
39
Coyne, J.C. et Fiske, V. « Couples coping with chronic illness. » In T.J. Akamatsu, J.C. Crowther, S.C.
Hobfoll, & M.A.P. Stevens (Eds.), Family Health Psycholoizy, Washington, D.C, Hemisphere, 1992.
Creal, L.D. The ‘Disability of Thinking’the ‘Disabled Body. Course paper for Ambiguous Bodies: Studies in
Contemporary Sexuality. Department of English, York University, 1999.
Crepeau, F., Lacroix, J. « L'employabilité des personnes ayant subi un traumatisme crânien. » Élargir les
horizons, Perspectives scientifiques sur l'intégration sociale: 259-267, ed. MultiMondes, 1994.
Crewe, M.N. « Freedom for disabled people: The right to choose. » In N.M. Crewe & I K. Zola (Eds.).
Independent living for physically disabled people. : 357-361. Sanfrancisco: Jossey-Bass, 1983.
Crewe, N., Zola, I. Independent Living for Physically Disabled People. London, Jossey-Bass, 1983.
Crisp, R. « Community Intergration, Self-esteem, and Vocational Identity Among Persons With Disabilities».
Australian Psychologist, vol.31, n? 2 : 133-137, 1996.
D.P.I. « Proceedings of the First World Congress. » Singapore, Disabled People’s International, 1982.
D.P.I. Charter Disabled People’s International, 1980.
David Blanck, P. « Empirical Study of the Americans with Disabilities Act: Employment Issues From 1990 to
1994 ». Behavioral Sciences and the law, vol. 14 : 5-27, 1996.
David Blanck, P. Students with Learning Disabilities, Reasonable Accomodations, and the Rights of Colleges
and Universities to Establish and Enforce Academic Standards, Guckenberger v. Boston University,
MPDLR, vol.21, n? 5 : 679-686, 1997.
Davis, Lennard J. J’Accuse!: Cultural Imperialism -- Ablist Style. Social Alternatives. 1 (18), 1999.
Davis, M. Living with multiple sclerosis: a social psychological analysis. Springfield, Ill, Charles C. Thomas
Pub, 1973.
Dear, M. et al. « Seeing people differently : the sociospacial construction of disability». Society and Space,
vol.15 : 455-480, 1997.
Deegan, M.J. et Brook, N.A. (eds). Women and Disability: The Double Handicap. New Brunswick, New Jersey:
Transaction Books, 1985.
Degarie, R. « Un psychologue de l'Ud'O mène une recherche sur les personnes handicapées ». Gazette,
Ottawa, Ontario, vol.6, n? 12 : 4, 1994.
Dejong G. «Independent Living : From Social Movement to Analytic Paradigm»,Archives of Physical Medicine
and Rehabilitation, vol. 60, no 10 : 435-446, 1979.
Dennis, R.E., et al. « Quality of life as context for planning and evaluation of services for people with
disabilities. » Exceptional Children, vol.59 : 499 –512, 1993.
Desjardins, A. Personnes handicapées : les mythes. Québec, FTQ, 1994.
Développement des ressources humaines Canada. « Le pouvoir des mots. » Conseil généraux et guide
terminologique pour une représentation adéquate des personnes ayant une déficience, Gouvernement
du Canada, Ministre des approvisionnements et services Canada, 1991.
DiMatteo, M.R. « Social support and serious illness. » In B.H. Gotlieb (Ed.), Social networks and social
support : 117-148. Sage Studies in Community Health, Beverly Hills: Sage, 1981.
Disability Awareness in Action (DAA). Newsletter Thirty-Three. Londres, Royaume-Uni, 1995.
Disability Awareness in Action. Overcoming obstacles to the integration of disabled people. UNESCO,
sponsored report as a contribution to the World Summit on Social Development, Copenhagen,
Denmark, 1995.
Disability Today. «Play Time Toys As Tools For Learning. » Disability Today, Oakville, Ontario, vol.5, n? 1 :
60, 1996.
Disability Today. «War on Words Label vs. Euphemism. » Disability Today, Oakville, Ontario, vol.4, n? 4 : 68,
1995.
Disabled Women’s Network (DAWN). Violence Against Women with Disabilities, 1997.
Dobren, A. A. « An ecologically oriented conceptual model of vocational rehabilitation of people with acquired
midcareer disabilities. » Rehabilitation Counseling Bulletin, vol.37 n? 3 : 215-226, 1994.
Doriguzzi, P. L’histoire politique du handicap. De l’infirme au travailleur handicapé. L’Harmattan : Paris, 1994.
Dorval, J. L'intégration scolaire des élèves en situation de handicap, d'hier à aujourd'hui
. Rapport de stage
présenté à Normand Boucher, Centre François-Charon, Julie Dorval, Département de sociologie,
Faculté des sciences sociales Université Laval, Québec, 1996.
40
Dorvil, H., Renaud, M. et Boucher, L. « L’exclusion des personnes handicapées. » In Dumont, F., Langlois,
S. et Martin, Y. Traité des problèmes sociaux : 711-738, 1995.
Drake F.R. « Charities, Authority and Disabled People: a qualitive study.» Disability & Society, vol.11, n? 1 :
5-23, 1996.
Driedger D. The Last Civil Rights Movement. London, Hurst and co., 1989.
Drieger, D., D'Aubin, A. « Women with Disabilities Challenge the Body Beautiful.» Healthsharing : 35-38,
1992.
Duckworth, D. « Measuring disability: the role of the ICIDH». Disability and Rehabilitation, vol.17, n? 7 : 338343, 1995.
Duckworth, D. The classification and measurement of disablement. London, Her Majesty’s Stationery Office,
1983.
Dulas, M.C. « La révolte des Sourds ». L'actualité : 23-27, 1995.
Dunn, A.P. « Policies and Community Responses which Promote Barrier-free Housing for Seniors ».
Technologicl options, Active Living, non-daté.
Dunn, A.P. « The economic, social, and environmental obstacles which seniors with disabilities confront in
Canada. » Canadian journal of community mental health , vol.9, n? 2 : 137-150, 1990.
Dunn, A.P. « The Impact of th Housing Environment upon the Ability of Disabled People to Live
Independently ». Disability, Handicap & Society, vol.5, n? 1 : 37-52, 1990.
Dunn, A.P. Accessible housing legislation and policies: a framework for future policy development. Faculty
of social work, Wilfrid Laurier University, Waterloo, Ontario. Prepared for:-Building non-handicap
environments, Hungary, 1991.
Dunn, A.P. Government policy innovations in barrier-free housing, accessible transportation and personal
support. Facutly of social work, Wilfrid Laurier University, Waterloo, Ontario -Prepared for: The
progress through Partnership-National Independent Living Conference Winnipeg, Manitoba, 1994.
Dunn, P. Government policy innovations in barrier-free housing, accessible transportation and personal
supports. Winnipeg, National independent living conference, 1994.
Dunn, W., Brown, C., et McGuigan, A « The ecology of human performance : A framework for consedering
the effects of context. » American Journal of Occupational Therapy, vol.48, n? 7 : 595-607, 1994.
Dupuy, J.R., Thibault, M.-J. Technologie des communications et de l'information et personnes handicapées.
Industrie Canada pour le Comité aviseur auprès du ministre des communications pour la Stratégie
nationale pour l'intégration des personnes handicapées. CITI (Centre d'innovation en technologie de
l'information), 1993.
Dupuy. J.R. Communication and information technologies and persons with disabilities. Submitted to the
Advisory Committee to the minister of Communications on the National Strategy for the Integration of
Persons with Disabilities. Ottawa. March, 1993.
Durst, D., Mary Bluechardt, Georgina Morin, Melissa Rezansoff Urban First Nations Persons with Disabilities:
Triple Jeopardy!, 1999.
Dybwad, Gunnar and Hank A. Bersani New Voices: Self Advocacy by People with Disabilities. Cambridge,
MA: Brookline Books, 1996.
Ebersold, S. « L'intégration et l'insertion face à l'exclusion». Handicaps et inadaptation, les cahiers du
CTNERHI, n? 64 : 29-38, 1994.
Ebrahim, S. « Clinical and public health perspectives and applications of health-related quality of life
measurement. » Soc. Sci. Med., vol.41, n? 10 : 1383-1394.
Edwards, S.D. « Dismantling the disability/handicap distinction». The Journal of Medicine and Philosophy,
vol.22 : 589-606, 1997.
Eisenberg, M.G., Griggins, C., Duval, R.J. (Eds.). Disabled People as Second-Class Citizens. Springer Pub
Co, New York, 1982.
Elsass, L. et Kinsella, G. « Social interaction following severe closed head injury.» Psychological Medicine,
vol.17 : 67-78, 1987.
English W.R. Combating stigma towards physically disabled persons, New York, N.Y, Springer Publishing Co.,
1977.
41
Enns, H. « An excerpt from the historical development of attitudes toward the handiccaped: A framework for
change. » In A. D’aubin (Ed.), Defining the parameters of independent living, Winnipeg, Man., COPOH,
1986.
Enns, H. « The Historical Development of Attitudes toward the Handicapped : A Framework for Change. An
excerpt from Perspectives on Disability and the Helping Process.» Chapter 11 : 175-186, In David S.
Freeman and Barry Trute, eds, Treating Families with Special Needs, Ottawa, Alberta Association of
Social workers, 1989.
Enns, H. «Disabled People International (DPI) Statement on the WHO’s ICIDH»,Réseau international CIDIH
International ICIDH Network, vol. 2, no 2-3 : 28-30, 1989.
Erekson, T.L. et Rotatori, A.F. Accessibility to Employment. Training for the Physicàlly Handicapped.
Springfield, Ill., C.C. Thomas, 1986.
Erevelles, N. « Disability and the Dialectics of Difference». Disability & Society, vol.11, n? 4 : 519-537, 1996.
Escomel, G. « Les personnes handicapées au Québec ». Gagner sa vie, vol.11 : 51, Québec, OPHQ, 1987.
Fairweather, J.S. et Shaver, D. M. «A troubled future? Participation in postsecondary education by youths with
disabilities. » Journal of Higher Education, vol.61 : 332-348, 1990.
Falcocchio, J.C. et Cantilli, E.J. Transportation and the disadvantaged : The poor, the aged and the
handicapped. Toronto, Lexington Books, D.C. Heath & Company, 1974.
Fawcett,S.B. et al. « A Contextual-Behavioral Model of Empowerment: 22 Case Studies Involving People with
Physical Disabilities». American Journal of Community Psychology, n? 4 : 471-496, 1994.
Fecteau, D. « Recruter des personnes ayant une déficience: qu'est-ce que cela veut vraiment dire?» Forum
des droits de la personne, Ottawa, Commission canadienne des droits de la personne, vol.6 n? 1 : 2-5,
1996.
Federal Task on Disability Issues.Federal organization and approach to disability issuesin Equal Citizenship
For Canadians With Disabilities: The Will To Act, October1996.
Fédération Québécoise des Centres de Réadaptation pour les personnes présentant une déficience
intellectuelle. Rôle et orientation des CRPDI: Une perspective écosystémique. Bibliothèque Nationale
du Québec et du Canada, 2e Édition, 1994.
Fédération québécoise des centres de réadaptation pour les personnes présentant une déficience intellectuelle
et Fédération de la réadaptation en déficience physique. La réponse au besoin des personnes ayant
des déficiences physique et intellectuelle: des orientations pour une intervention réseau
. Non-daté.
Ferreol, G. Intégration & exclusion dans la société française contemporaine. Presse universitaire de Lille: 251279, 1992.
Fichten, C.S. « Students with physical disabilities in higher education: Attitudes and beliefs that affect
integration. » In H. E. Yuker (Ed.), Attitudes toward persons with disabilities : 171-186. New York.
Springer, 1988.
Fine, M. et Asch, A. « Disability beyond stigma: Social interaction, discrimination, and activism.» Journal of
Social Issues, vol.44, 3-21, 1988.
Fine, M. et Asch, A.(eds). Women with Disabilities : Essays in Psychology, Culture and Politics
. Philadelphia,
Temple University Press, 1988.
Finkelstein, V. « Planning services together with disabled people: the importance of a common language. »
World healt statistics quaterly, 1989.
Finkelstein, V. Attitudes and Disabled People: Issues for Discussion World Rehabilitation Fund
. New York,
1980.
Fisher, B. et Galler, R. « Friendship and fairness: How disability affects friendship.» In Fine, M and A. Asch
(Eds.), Women with disabilities: Essaysin psychology, culture, and politics: 172-194. Philadelphia;
Temple Univ.Press, 1988.
Flipczak, B. « Adaptive Technology for the Disabled. » Training, vol.30, n? 3 : 23- 29, 1993.
Flynn, R.J. « Social integration between 1982 and 1992 : conceptual and operational definitions. » ICIDH
International Network, vol.6, n? 2 : 34-41, 1993.
Fougeyrollas P. Is there a place for «Impairment» in a social model of Disability, Roher Institute Seminar on
Research in Disability and Public Policy, August 1997.
42
Fougeyrollas P. Les déterminants environnementaux de la participation sociale des personnes ayant des
incapacités : le défi sociopolitique de la révision de la CIDIH, Canadian Journal of Rehabilitation, vol.
10, no 2, p. 147-160, 1997.
Fougeyrollas P. « Pour mieux comprendre les corps et esprits différents agissant dans leur culture.» La
construction de l'anthropologie québécoise, Mélanges offerts à Marc-Adélard Tremblay, Les Presses
de l'Université Laval : 166-172, 1995.
Fougeyrollas P. Conduire une automobile: un exemple d'utilisation de l'analyse environnementale du
processus de production des situations de handicaps et de leur prévention, 1995.
Fougeyrollas P. Les déterminants environnementaux dans la mesure des conséquences des maladies et
traumatismes. Québec, CQCIDIH-SCCIDIH, 1995.
Fougeyrollas P. Prévenir, réduire et compenser les conséquences des maladies et traumatismes : déficiences,
incapacités et situations de handicaps. Dossier thématique, Commission d’enquête sur la santé et les
services sociaux, Québec, 1988.
Fougeyrollas P. The influence of the social environment on the social participation of people with disabilities
.
In C. Christiansen and C. Baum (eds), Occupational Therapy, Enabling function and well-being (2nd
ed.) Thorofare, NJ : SLACK Inc., 1997.
Fougeyrollas P. «Documenting environmental factors for preventing the handicap creation process: Quebec
contributions relating to ICIDH and social participation of people with functional differences»,Disability
and Rehabilitation, vol. 17, n? 3-4 : 145-153, 1995.
Fougeyrollas P. «Les implications de la diffusion de la CIH sur les politiques concernant les personnes
handicapées», Rapport trimestriel de statistiques sanitaires mondiales, vol.43, no 4, p. 281-285, 1990.
Fougeyrollas P. «Normalité et corps différents. Regard sur l’intégration sociale des handicapéphysique».
Anthropologie et Sociétés, vol.2, n? 2 51-71, 1978.
Fougeyrollas P. Bergeron H., Cloutier R., St Michel G. «Le processus de production du handicap: analyse de
la consultation et nouvelle proposition»,Réseau International CIDIH, vol. 4, n? 1 et 2 : 18-20, Québec,
SCCIDIH-CQCIDIH, 1991.
Fougeyrollas P. Entre peaux : Logis de la différence. Du handicap à l’autonomie. Thèse de maîtrise,
Département d’anthropologie, Québec, Canada, Université Laval, 1983.
Fougeyrollas P. Le processus de production culturelle du handicap. Contextes sociohistoriques du
développement des connaissances dans le champs des différences corporelles et fonctionnelles,
Québec, CQCIDIH-SCCIDIH, 1995.
Fougeyrollas P. Noreau, L. « L'évaluation des situation de handicap: La Mesure des habitudes de vie appliquée
aux personnes ayant une lésion à la moelle épinière ». Canadian Journal of Rehabilitation, vol.10,
November : 81-97, 1996.
Fougeyrollas P., Cloutier R., Bergeron H., Côté J., Côté M., St Michel G. Classification québécoise : processus
de production du handicap. Québec, CQCIDIH-SCCIDIH, 1998.
Fougeyrollas P., Cloutier R., Bergeron H., St Michel G. Correspondance entre la Classification internationale
des déficiences, incapacités et handicaps (CIDIH - OMS - 1980) et la Proposition québécoise de
classification du processus de production du handicap (CQCIDIH - SCCIDIH -1991), Québec,
CQCIDIH-SCCIDIH, 1995.
Fougeyrollas P., Cloutier R., Bergeron H., St Michel G. Correspondance entre la Proposition québécoise de
classification du processus de production du handicap (CQCIDIH - SCCIDIH -1991) et la Classification
internationale des déficiences, incapacités et handicap (CIDIH - OMS - 1980), Québec, CQCIDIHSCCIDIH, 1995.
Fougeyrollas P., Majeau P. «Le processus de production des handicaps, comment utiliser le modèle
conceptuel - exemples». Réseau international CIDIH, vol. 4, no 3, Québec, 1991.
Fougeyrollas P., Noreau L. «La mesure des habitudes de vie», Réseau international CIDIH et facteurs
environnementaux, vol. 7, no 3 et vol. 8, no 1, Québec 1995.
Fougeyrollas P., St Michel G. et al. Comments of the Quebec Committee and Canadian Society for the ICIDH
on the prebeta draft ICIDH, 1997.
43
Fougeyrollas P., St Michel G., Blouin M. «Consultation proposition d’une révision du 3e niveau de la CIDIH: le
handicap», Réseau International CIDIH, vol. 2, no 1, SCCIDIH-CQCIDIH : 9-29, Québec, 1989.
Fougeyrollas, P. « Documenting environmental factors as determining variables in theperformance of day-today activities and the fulfillment of social roles by persons with impairments and functional limitations.»
ICIDH International Network, vol.5, n? 3 : 8-13.
Fougeyrollas, P., Noreau, L., Bergeron, H., Cloutier, R., Dion, S-A., St-Michel, G. «Social consequences of
long term impairments and disabilities: conceptual approach and assessment of handicap ».
International Journal of Rehabilitation Research, vol.22 : 127-141, 1998.
Fougeyrollas, P., Bergeron, H., Cloutier, R., St-Michel, G. Révision de la proposition québécoise de
classification : processus de production du handicap. RIPPH- CQCIDIH- SCCIDIH, Québec, 1996.
Fowler, C.A. et Wadsworth, J.S. « Individualism and Equality :Critical Values in North American Culture and
the Impact on Disability. » Journal of Applied Rehabilitation Counseling, vol.22, n? 4 : 19-23, 1991.
Freidson E. Disability as social deviance. Sociology and Rehabilitation A structural Approach.New York, N.Y.
Doss, Mead and Co., 1965.
French, S. « Researching disability: the way forward.» Disability and Rehabilitation, vol.14 : 183, 1992.
French, S., Swain, J. « Changing Disability Research: Participating and Emancipatory Research with Disabled
People ». Scholarly Paper : 26-32, 1996.
French, S.S. « Disability and work : the economics of american policy. » Sociology, vol.10, n? 2 : 21, 1983.
Friedman, S. « Accomodation issues in the work place for people with disabilities: a needs assessment in an
educational setting ». Disability, handicap & society,vol.8, n? 1 : :3-23, 1993.
Fricke, M.W. First Nations People With Disabilities: An analysis of service delivery in Manitoba. University of
Manitoba, Department of Community Health Sciences, Dissertation, 1998.
Frizpatrick, R., Newman, S., Lamb, R. et Shipley, M. « Social relationships and psychological well-being in
rheumatoid arthritis. » Social Science and Medicine, vol.27 : 399-403, 1988.
Fulcher, G. Disabling Policies? A Comparative Approach to Education Policy and Disability
. Falmer Press,
Lewes, 1989.
Garcia, L.J., Barrette, J. et Laroche, C. Perception of the obstacles to work reintegration for persons with
aphasia. Ottawa, University of Ottawa, 1998.
Gartner, A., Joe, T. (Eds). Images of the Disabled, Disabling Images. Praeger, New York, 1987.
Gaudreault C., Madon S. «Illustration d’une application de la proposition québécoise de la classification
internationale des déficiences, incapacités et handicaps dans un milieu de réadaptation de moyen
séjour», Revue québécoise d’ergothérapie, vol. 5, no 2 : 64-69.
Gaudreault C., St-Amand H. Le plan d’intervention individualisé: un outil de structuration du travail
interdisciplinaire à l’Institut de réadaptation de Montréal
. Québec, Session d’affichage du Colloque du
CQCIDIH-SCCIDIH sur les déterminants environnementaux de la participation sociale, 1995.
Gauthier J. «Complémentarité du modèle de rendement occupationnel en ergothérapie et de la proposition
québécoise de la CIDIH». Revue québécoise d’ergothérapie, vol. 5, no 2 : 70-74, 1996.
Geoffroy, C. Les technologies de communication de l'information et les aîné(e)s. Ministère Industrie Canada,
Laval, Québec, 1994.
Geoffroy, C. Les technologies de communication et de l'information et les aîné(e)s. Sommaire, Pour Centre
d'innovation en technologies de l'information, la VOIX, le réseau canadien des aîné(e)s, 1994b.
Giami, A. « Du handicap comme objet dans l’étude des représentations du handicap ». Sciences Sociales
et Santé, vol.12, n? 1 : 30-60, 1994.
Gilgun, J.F. Human Development and Adversity In Ecological Perspectives, Part I: A Conceptual Framework.
Families in Society: The Journal of Contemporary Human Services. 77(Sept): 395-402, 1996.
Gliderbloom, J.I., Rosentraub, M.S. « Creating the accessible city: proposals for providing housing and
transportation for low income, elderly and disabled people. » American journal of Economics and
Sociology, vol.49, n? 3 : 271-282, 1990.
Gliedman, J. and William Roth. The unexpected minority: handicapped children in America. Hartcourt Brace
Jovanovich: New York, 1980.
44
Gluekauf, R.L, Webb, P.M., Papandria-Long, H., Rasmussen, J.L, Markland, O., & Farlow, M. «The family and
disability assessment system: Consistency and accuracy across codes and measures.» Réhabilitation
Psychology, vol.37, n? 4 : 291-304, 1992.
Goerdt, A. « Social integration of the physically disabled in Barbados.» Social Science and Medicine, vol.22 :
459-466, 1986.
Goffman E. Stigmate. Les usage sociaux des handicaps. Paris, France, Les éditions de minuit, 1963.
Goffman, E. Stigma : Notes on the Management of a Spoiled Identity. Penguin, Harmondsworth, 1963.
Golledge, R.G. « On reassembling one’s life : overcoming disability in the academic environment». Society
and Space, vol.15 : 391-409, 1997.
Goodall, J.C. « Is disability any business of nurse education?» Nurse Education Today, vol.15 : 323-327,
1995.
Gouvernement du Canada. Étude de cas de pratiques exemplaires dans l'emploi de personnes handicapées.
Groupe de consultation sur l'équité en emploi pour les personnes handicapées, Gouvernement du
Canada, 1994.
Gouvernement du Canada. La sécurité sociale dans le Canada de demain. Ministère des Approvisionnements
et services Canada, 1994.
Gouvernement du Canada. La Stratégie nationale pour l'intégration des personnes handicapées.
Gouvernement du Canada, 1994.
Gouvernement du Canada. Personnes handicapées: Un document d'information - La sécurité sociale dans
le Canada de demain. Approvisionnements et Services Canada, 1994
Gouvernement du Canada. Promotion de la santé de la population. Modèle d'intégration de la santé de la
population et de la promotion de la santé, 1986.
Gouvernement du Québec. La réussite pour elles et eux aussi, mise a jour de la politique de l'adaptation
scolaire. Ministère de l'éducation, Gouvernement du Québec, 1992.
Gouvernement du Québec. Les municipalités et l'intégration sociale des personnes handicapées. Bibliothèque
nationale du Québec, Gouvernement du Québec, 1993.
Government of Canada. Obstacles. Report of Special Parliamentary Committee on Disabled and
Handicapped, 1981.
Government of Canada. The national strategy for integration of persons with disabilities
. Ottawa, Supply and
service Canada, 1991.
Grandjean, E. « Man-machine systems. » Fitting the task to the man : an ergonomic approach. London,
Taylor and Francis, 1980.
Gregory, R.J. « Definitions as power ». Disability and Rehabilitation, vol.19, n? 11 : 487-489, 1997.
Groce N., Scheer J. «Introduction, Cross cultural perspectives on disability». Social Science and Medicine
,30(8), 1990.
Groupe de travail fédéral concernant les personnes handicapées. Donner un sens à notre citoyenneté
canadienne. La volonté d’intégrer les personnes handicapées. Gouvernement du Canada, 1996.
Groupe de travail sur l'intégration et la réintégration en emploi des personnes handicapées.Le droit au travail
des personnes handicapées. Québec, CSN, 1994.
Groupe d'étude de la qualité de vie du centre "For Health Promotion". Bulletin du projet d'évaluation de la
qualité de vie. Publié par le centre "For Health Promotion", Université de Toronto, Canada, 1995.
Groupe-Conseil DOME. Étude de rentabilité socio-économique des services externes de main-d'oeuvre
(SEMO) pour personnes handicapées. Regroupement de SEMO personnes handicapées, 1995.
Gutman, G.M. Environmental design, staffing and programming needs of younger adults in long-term care
facilities : residents and staffs perception : report of a study. Vancouver, B.C., Gerontology research
centre, Simon Fraser University at Harbour centre, 1989.
Gutman, G.M., Killam, J. et Anderson, K. Characteristics and Service preferences of Younger Aduits with
Severe Phvsical Disabilities. Report for the Capital Regional District, Vicoria, B.C, in press.
H. Price, R. « Wither Participation and Empowerment ». American Journal of Community Psychology, vol.18,
n? 1 : 163-167, 1990.
Hahn H. « The H Factor » in the ICIDH. What’s left of the original concept ? » ICIDH and Environmental Factors
International Network, vol.8, no 3, p. 31-41, 1996.
45
Hahn H. «Equality and the Environment. The interpretation of «reasonable accomodation » in the Americans
with Disabilities Act»,Journal of Rehabilitation Administration, no 17 : 101-106, 1993.
Hahn H. «The minority group model of disability; Implications for medical sociology», In R. Weitz and J.J.
Kronenfeld (eds), Research in the sociology of health care, vol. 11 : 3-24, Greewich, CT : JAI Press
1995.
Hahn H. «The political implications of disability definitions and data»,Journal of Disability Policy Studies,vol.
4, no 2 : 41-52, 1993.
Hahn H. «Towards a Politics of Disability : Definition, Disciplines and Politics»,The Social Science Journal,
vol.22, n? 4 : 87-105, 1986.
Hahn, H. « Can Disability Be Beautiful?» Social Policy Winter, 1988.
Hahn, H. « Civil rights for disabled Americans: the foundations of a political agenda.» In: Gartner, A., Joe, T.
(Eds.), Images of the Disabled/Disabling Images, Praeger., New York : 181, 1987.
Hahn, H. « Public support for rehabilitation programs: the analysis of US disability policy. Disability
». Handicap
and Society, vol.1 : 121, 1986.
Hahn, H. « The Politics of Physical Differences: Disability and Discriminat
ion. » Journal of Social Issues, vol.44
: 39-47, 1988.
Hahn, H., 1982. « Disability and rehabilitation policy: is paternalistic neglect really benign?» Public
Administration Review, vol.42, n? 4 : 385,1982.
Halbertsma, J. « H.G.Dickson's problems with the ICIDH definition of impairment ». Disability and
Rehabilitation, vol.18, n? 10 : 533-535, 1996.
Hall, E. M. Women's Work: An Inquiry into the Health Effects of Invisible and Visible Labor
. Baltimore, 1990.
Hallberg, L.R-M., Carlsson, S.G. « A qualitative study of situations turning a hearing disability into a handicap.
»
Disability, handicap & Society, vol.8, n? 1:71-86. in Montreal, Journal of Landscape and Urban
Planning, 1993.
Hamonet, C. Les personnes handicapées. Collection Que sais-je, Paris, PUF, 1990.
Hamonet, C. « Commentaires sur le handicap. » Réseau international CIDIH, vol.3, n? 2 : 6-7, 1990.
Hanzlik, J.R. et Stevenson, M.B. « Interactions of mothers with their infants who are mentally retarded, retarded
with cerebral palsy, or nonretarded. » American Journal of Mental Deficiency, vol.90, n? 5 : 513-520,
1986.
Harrison,K., Barlow, J. « Focusing on Empowerment: facilitating self-help in young people with arthritis through
a disability ». Disability & Society, vol.11, n? 4 : 539-551, 1996.
Hart, B., Risley, T. R. « Environmental programming: implications for the severly handicapped ». Severly
handicapped learner program monograph , n? 2 : 33-52, 1976.
Harvey, E.B. et Tepperman, L. Selected socio-economic consequences of disability for women in Canada.
Ottawa, Statistics Canada, septembre, 1990.
Heerkens, Y.F. « Impairments and disabilities- The difference : proposal for adjustment of the international
classification of impairments, disabilities, and handicaps.» Physical Therapy, vol.74, n? 5 : 430-442,
1994.
Helios Technical Report. Changing Attitudes and Raising Awareness on People with Disabilities
, 1996.
Henderson, S., Byrne, D.G. et Ducan-Jones, P. Neurosis and the social environment. New York, Academic
press, 1991.
Hershenson, D.B. « Systemic, ecological model for rehabilitation counseling. » Rehabilitation Counseling
Bulletin, vol.42, n? 1 : 40-50, 1998.
Hevey, D. The Creatures that Time Forgot: Photography and Disability Imagery. London: Routledge, 1993.
Heward, William L. and Rodney A Cavanaugh. Educational Equality for Students with Disabilities. «In
Multicultural Education: Issues and Perspectives», Banks and McGee Banks, eds. Boston: Allyn and
Bacon, 1997.
Hill, J.L. « Accessibility: Students with disabilities in univers
ities in Canada. » The Canadian Journal of Higher
Education, vol.22, n? l : 48-83, 1992.
Hughes, B., Paterson, K. « The Social Model of Disability and the Disappearing Body: towards a sociology of
impairment ». Disability & Society, vol.12, n? 3 : 325-340, 1997.
46
Human Resources Development Canada. Future Directions To Address Disability Issues for the Government
of Canada: Working Together for Full Citizenship. Government of Canada. 1999. Nova Scotia
Partnerships for Persons with Disabilities: Implementation Plan, 1999. In Unison: A Canadian
Approach to Disability Issues. Hull, Que: Human Resources Development Canada, 1998.
Hunt, H. A. et Berkowitz, M. New Technologies and the Employment. Geneva, ILO, 1991.
Hurst, R. « The definition of disability, our right to define ourselves.» ICIDIH International Network, vol.6 : 7-8,
1993.
Hutchison, P. et al. « The impact of Independent living resource centres in Canada on people with disabilities.»
Canadian Journal of Rehabilitation, in press, 1996.
Hutchison, P. et Lord, J. Recreation integration : issues and alternatives in leisures services and community
involvement. Ottawa, Ont. (Can.), Leisurability publications, 1979.
Hutchiston, P. et McGill, J. Leisure, integration and community. Concord, Ont. (Can), Leisurability publications,
1992.
Hutchiston, P.
A Study on the Impact of Independent Living Resource Centres in Canada. St-Catherines,
ON, Dept. of Recreation and Leisure Studies, Brock University, 1996.
Hyde, M. « Sheltered and Supported Employment in the 1990s: the experiences of disabled workers in the
UK ». Disability & Society, vol.13, n? 2 : 199-215, 1998.
Imrie, R. « Rethinking the relationships between disability, rehabilitation and society.» Disability and
Rehabilitation, vol.19 : 263, 1997.
Ingstad, B., Whyte, S.R. Disability and Culture. University of California Press, Berkeley, CA, 1995.
INSERM. Classification internationale des handicaps: déficiences, incapacités et désavantages. Manuel de
classification des conséquences des maladies. Paris, INSERM, 1988.
International Association for the Scientific Study of Intellectual Disabilities,Program & Abstracts: International
th
Advances in Research and Practice – global problems, local approaches. 10 World Congress of the
International Association for the Scientific Study of Intellectual Disabilities. Helsinki, Finland, 1996.
Israel, P., Odette, F. et Dale Stone, S. «Women and Disability. » Canadian Women's Studies, vol.13 : 4, 1993.
J. Reed, B., H.Fried, J., Rhoades, B. J. «Empowerment and Assistive Technology: The Local Resource team
Model ». Journal of Rehabilitation : 30-35, 1995.
J. Reed, B., H.Fried, J. « Assistive Technology Knowledge and Utilization Among Vocational
Evaluation/Assessment Professionals: Survey Results.» Vocational Evaluation and Work Adjustment
Bulletin : 43-45, 1995.
J. Yerxa, E., Baum Locker, S. « Quality of Time Use by Adults With Spinal Cord Injuries». The American
Journal of Occupational Therapy, vol.4, n? 4 : 318-326, 1990.
J.Fuhrer, M. et al. « Relationship of Life Satisfaction to Impairment, Disability, and Handicap Among Persons
With Spinal Cord Injury Living in the Community». Arch Phys Med Rehabil, vol. 73 : 552-557, 1992.
Jacquard A. «Éloge de la différence», La génétique et les hommes, Paris, France, Seuil, 1978.
Jazairi, N.T. Approaches to the development of health indicators. Paris (Organisation for European
Cooperation and development), 1976.
Jette, A.M. « Physical Disablement Concepts for Physical Therapy Research and Practice.» Physical
Therapy, 75 : 380-386, 1994.
Johnson, V,.A., Greenwood, R et Schriner, K.F. « Work Performance and Work Personality : Employer
Concern's about Workers with Disabilities.» Rehabilitation and Counselling Bulletin, vol.32, n? l : 5057, 1988.
Jongbloed, L. et Crichton, A. « A new definition of disability : Implications for rehabilitationpractice and social
policy. » Canadian Journal of Occupational Therapy, vol.57, n? 1: 32-38, 1990.
Jongbloed, L. et Crichton, A. « Difficulties in shifting from individualistic to socio-political policy regarding
disability in Canada.» Disability, handicap and society,vol.5, n? 1 : 25-35, 1990.
Kaplan, S. « A model of person-environment compatibility. » Environment and Behavior, vol.15, n? 3 : 311332, 1983.
Karasek, R, et Theorell, T. Healthy Work : Stress, Productivity, and Reconstruction of Working Life
. New York:
Basic Books, 1990.
Kemp, B.J. Care for adults with a disability, now and as they age. In: R. Newcomer and A. Benjamin(Eds)
Indicators of Chronic Health Conditions. Baltimore: John Hopkins Press, 1996.
47
Kemp, B.J. And Adams, B. Monitoring the system of care for adults with disability, now and as they age
. In:
Newcomer, R. (Ed.) Community Indicators of Rehabilitation Success. Robert Wood Johnson
Foundation, 1995.
Kemp, B.J.; Adams, B.A. and Campbell, M.L. Depression and life satisfaction in people aging with polio versus
are-matched controls: The relation to post-polio syndrome, family functioning and attitude toward
disability. Arch. Phy. Med. Rehabil, 1996.
Kennedy, B. « Constricted Employment Opportunities Encountered by People with Severe Disabilities».
Journal of Rehabilitation : 51-54, 1993.
Kennedy, C. « Rehabilitation of People with Severe Mental Disordes: Lessons from Healthcare Reform ».
American Rehabilitation, vol.20, n? 4 : 29-32, 1994-1995.
Kennedy, C.H., Horner, R.P. et Newton, J.S. « The social networks and activity patterns of adults with severe
disabilities : a correlational analysis. » Journal of the association for people with severe handicaps,
vol.15 : 86-90, 1990.
Kielhofner, G. « Functional assessment : Toward a dialectical view of person-environment relations».
American Journal of Occupational Therapy, vol.47, n? 3 : 248-251, 1993.
Kilian, Janicke, and Binder, Terje. Aging with a Disability - Conclusions after a Visit to the USA
. Norwegian
Report, 1998.
Kopels, S. « The Americans with Disabilities Act: a tool to combat poverty». Journal of Social Work
Education, vol.31, n? 3 : 337-346, 1995.
Kosciulek, John F. Consumer Direction in Disability Policy Formulation and Rehabilitation Service Delivery
.
Journal of Rehabilitation. 65(2): 4-10, 1999. The Consumer-Directed Theory of Empowerment .
Rehabilitation CounselingBulletin. 42(3): 196-214, 1999.
Kowalchuk, Lynette A Focus on Ethnocultural Issues, 1999.
Krefting, L. « Reintegration into the community after head injury: The results of an ethnographie study.» The
Occupational Therapy Journal of Research, vol.9 : 67-83, 1989.
L. Mancuso, L. « Achieving reasonable Accommodation for workers with Psychiatric Disabilities: Understanding
the Employer's Perspectives ». American Rehabilitation, vol.21, n? 1 : 2-8, 1995.
L. Schalock, R. « Promoting Quality Through Quality Enhancement Techniques and Outcome Based
Evaluation ». Journal on Developmental Disabilities, vol.3, n? 2 : 1-16, 1994.
L. Schalock, R. et al. « A Multivariate Investigative Study of the Correlates of Quality of Life». Journal on
Developmental Disabilities, vol.3, n? 2 : 59-73, 1994.
L.Thurlow, M. et al. « Testing Accommodations for Students with Disabilities». Remedial and Special
Education, vol.16, n? 5 : 260-270, 1995.
La Croisée. « Intégration au travail des personnes handicapées». La Croisée, Rapport de recherche,
Extension de la main-d'oeuvre du Canada, Québec, 1994.
Lacroix, J., Joanette, Y., Bois, M. «Un nouveau regard sur la notion de validité écologique: apport du cadre
conceptuel de la CIDIH», Revue de Neuropsychologie, vol. 4, no 2 : 115-141, 1994.
Lalonde, M. «Intégration du modèle québécois du CQCIDIH à l’intérieur de la pratique des audiologistes».
Réseau international CIDIH et facteurs environnementaux, vol. 6-7, no 3-1 :7-14, Québec, 1994.
Lavoie, L. Le processus de désinstitutionnalisation et d'intégration de personnes présentant une déficience
intellectuelle. Québec, Université Laval, mémoire de maîtrise, 1991.
Laskiwski, Sharon, and Morse, Janice The Patient with Spinal Cord Injury: The Modification of Hope and
Expressions of Despair. Canadian Journal of Rehabilitation. 6(3): 143-153, 1993.
Law, M. « La perspective historique de Foucault sur la normalité et les environnements restrictifs». Revue
Canadienne de Réadaptation, vol.5, n? 4 : 193-203, 1992.
Law, M. « The environment : A focus for occupational therapy. » Canadian Journal of Occupational Therapy,
vol. 58, n? 4 : 171-180, 1991.
Law, M. Cooper, B.A., Strong, S., Stewart, D., Rigby, P., Letts, L. «Theoretical contexts for the practice of
occupational therapy. » In C. Christiansen and C. Baum (eds), Occupational Therapy : Enabling
function and well-being (2nd ed.) : 72-135, Thorofare, NJ : SLACK Inc., 1997.
48
Law, M. et al. (en ref. du de l’autre) « The environment : a critical review of person/environment relation and
environmental assesment. » Paper presented at Canadian Association of Occupational Therapist, StJohn, NFL, 1992.
Law, M., Cooper, B., Strong, S., Stewart, D., Rigby, P. et Letts, L. «The person-environment occupation model
: A transactive approach to occupational performance. » Canadian Journal of Occupational Therapy,
vol.63, n? 1 : 9-23, 1996.
Lawton, P.M. et Nahemow, L. « Ecology and the aging process. » In C. Eisdorfer & M.O. Lawton (Eds.),
Psychology of adult development and aging, : 619-674. Washington, D.C., American Psychological
Association, 1973.
Legault, L. L’intégration au travail des personnes ayant des incapacités, Wilson et Lafleur Inc., 1996.
Legge V. and Pennay M. Attitudes Towards Disability in a Multicultural Society
. Social Science and Medicine.
36(5): 615-623, 1993.
Lehman, A.F. « A quality of life interview for the chronically mentally ill.» Evaluation and Program Planning :
51-62, 1988.
Lemert, E. Human deviance, social problems, and social control. N.J. (US), Englewood Cliffs, 1967.
Lemieux-Brassard, L. (Ministère de la Justice, Gouvernement du Québec). «L'aide juridique au Québec: une
question de choix, une question de moyens ». Problématique reliée à la situation des personnes
handicapées. Ministère de la Justice, Gouvernement du Québec, non-daté.
Lemieux-Brassard, L. «What characteristics would the revised version of the ICIDH have to have in order that
it get our support ?» «Quelles catactéristiques devrait avoir la version révisée de la CIDIH pour qu’elle
obtienne notre appui ?», ICIDH and Environmental Factors International Network, vol. 8, no 3 : 19-20,
1996.
Lemieux-Brassard, L. Lois constituant des obstacles environnementaux à la participation sociale des personnes
qui ont des incapacités, 1995.
Letts, L., Law, M., Rigby, P., Cooper, B.,, Stewart, D. & Strong, S. «Person-Environment Assessments in
Occupational Therapy. » American Journal of Occupation Therapy, vol.48, n? 7 : 608-618, 1994.
Levine, M., Toro, P. A., et Perkins, D. V. «Social and community interventions. » Annual Review of
Psychology, vol.44 : 525-558, 1993.
Liberati, Alessandro Consumer Participation in Research and Health Care. BMJ: British Medical Journal,
08/30/97: 315(7107), 1997.
Linton, Simi Disability Studies/Not Disability Studies
. Disability, Handicap and Society. 12(1): 525-540, 1997.
Litman, T.J. « An analysis of the sociologic factors affecting the rehabilitation of physically handica
pped
patients. » Archives of Physical Medicine and Rehabilitation,vol.45 : 9-15, 1964.
Livneh, H. « Rehabilitation intervention strategies: their integration and classification.» Journal of
Rehabilitation, 1989.
Livneh, H. « Person-environment congruence : a rehabilitation perspective.» International Journal of
Rebabilitation Research, vol.10, n? 1 : 3-19, 1987.
Locker, David and Kaufert, Joseph The Breath of Life: Medical Technology and The Careers of People with
Post-Respiratory Poliomyelitis. Sociology of Health & Illness. 10(1): 23-40, 1998.
Lord, J. Life in the community : four years after the closure of an institution. Kitchener, Ontario, 1990.
Lord, J. Paticipation : comment accroître les expériences de loisir des personnees ayant des handicaps graves.
Toronto, Institut canadien pour la déficience mentale, 1981.
Lord, J. et al. More than just another human service. Ottawa, Canadian association of independent living
centres, 1992.
Lord, J. et Hutchison, P. « Vivre avec une incapacité au Canada: vers l'autonomie et l'intégration ». La santé
au Canada: Le cadre et les enjeux, Ontario : 391-451, 1995.
Lord, J. et Hutchison, P. Intégration sociale et loisir : comment favoriser l’insertion des personnes
handicapées dans les services de loisirs génériques. Islington, Ont. (Can.), Leisurability publications,
1979.
Lovitt, Thomas C. Parents of Youth with Disabilities Their Perceptions of School Programs”. Remedial
& Special Education. 20(3): 134-142, 1999.
Low, J. « Negotiating Identities, Negotiating Environments: an interpretation of the experiences of
49
students with disabilities». Disability & Society, vol.11, n? 2 : 235-248, 1996.
Loxley, A., Thomas, G. « From Incluse Policy to the Exclusive Real World: an international review».
Disability & Society, vol.12, n? 2 : 273-291, 1997.
Luborsky, M.R. The cultural adversity of physical disability: Erosion of full adult personhood
. Journal
of Aging Studies. 8(3): 239-253, 1994.
Lundgren-Lindquist, B., Nordholm, L.A. « The impact of community-based rehabilitation as perceived
by disabled people in a village in Botswana». Disability and Rehabilitation, vol.8, n? 7 : 329-334, 1996.
Lutfiya, Z.M. Affectionate bonds: what we can learn by listening to friends. Center on human policy:
Syracuse, 1990.
Lutfiyya, Z. « A feeling of being connected: Friendships between people with and without learning
difficulties. » Disability, Handicaps & Society, vol.6, n? 3 : 233-245, 1991.
Lutfiyya, Z. Personal relationships and social networks: Facilitating the participation of individuals with
disabilities in the community. Syracuse, NY: Center for Human Policy, 1991.
Lutfiyya, Z. Other than clients: Reflections on relationships between people with and withoutdisabilities,
Syracuse, NY: Center on Human Policy, 1988.
Lyons, R. et Meade, D. « Painting a new face on relationships: Relationship remodelling in response
to chronic illness. » In S. W. Duck and J. Wood (Eds.).Relationship challenges. Los Angeles: Sage,
in press.
Lyons, R., et Meade, D. « The energy crisis: Relationships and support experiences of mother with
chronic illness. » Canadian Woman Studies, fall issue, 1993.
Lyons, R.F. « Are we still friends? » The impact of chronic illness on personal relationships and
leisure, vol.8, n? 2 :453-465, 1985.
Lyons, R.F. « The effects of acquired illness and disability on friendships.» In. D. Perlman et Jones,
W. (Eds.) Advances in Personal Relationships, vol.3 : 233-276, London, J. Kingsley Pub., 1991.
Lyons, R.F. Relationships in chronic illness and disability. Thousand Oaks, Calif. (US), Sage
publications, 1995.
M. Kuyvenhoven, M. et al. « Independently Living Disabled Elderly: First Results from an Innovative
Home Care Project in Haarlem ». The Netherlands, Home Health Care Services Quarterly, vol.15, n?
2 : 99-110, 1995.
Madden, R., Hogan T. Definition of disability in Australia. Moving Towards National Consistency
,
Australian Institute of Health and Welfare Canberra, 1997.
Martin, Nick Equity gets a failing grade at the U of M Winnipeg Free Press. Tues., Apr. 6: p. A8,
1999.
Marder, C. « Education after secondary school. » In M. Wagner, R. D'Amico, C. Marder, Newman &
Blackorby (Eds.), What happens next?-Trends in postschool outcomes of youth with disabilities: the
second comprehensive report from the National longitudinal Transition Study of special education
students, : 3-1 - 3-40. Prepared for The Office of Special Education Programs, U.S. Department of
Education, Menlo Park, CA, SRI International, 1992.
Marinelli, R.P. et Dell Otro, A.E. The psychological and social irnpact of disability. New york, Springer,
1984.
Marks, D. « Models of disability ». Disability and Rehabilitation, vol.19, n? 3 : 85-91, 1997.
Marks, D. « Who needs models ? » Disability and Rehabilitation, vol.19, n? 11 : 492-495, 1997.
Marlett, N.J. « Disabled Youth in Transition: Implications for Social for Rehabilitation Counsellors.
Action Approaches for Rehabilitation Counsellors. » Il In H. Day an R. Brown (eds.) Natcon 14,
Vocational Counselling in Rehabilitation, vol.14 : 353-367. Ottawa, Employment and Immigration,
1987.
Martini,R., Polatajko H.J., Wilcox A. «ICIDH-PR: a potential model for occupational therapy»,
Occupational Therapy International, vol. 2, Whurr Publishers Ltd : 1-21, 1995.
Masuda, Shirley The Impact of Block Funding on Women with Disabilities. Report for DAWN
(Disabled Women’s Network) Canada. Ottawa: Status of Women Canada, 1998.
Matkin, R.E. « Educating Employers to Hire Disabled Workers. » In M. Nagler (ed) , Perspectives on
Disability. Palo Alto, Ca: Health Markets Research : 431-436, 1990.
50
Mattews, M.H., Vujakovic, P. « Private worlds and public places: mapping the environmental values
of wheelchair users ». Environment and Planning A, vol.27 : 1069-1083, 1995.
Mautuit D., «L’intégration sociale et professionnelle des personnes en situation de handicap : des
concepts à l’évaluation des actions», Revue Européenne du Handicap mental, vol. 2, no 7 : 15-24,
Dialogues, 1995.
Mautuit, D. «Évaluation d’un programme d’intégration socio-professionnelle utilisant les activités
physiques», Réseau international CIDIH et facteurs environnementaux, vol. 7, no 2 : 27-33, Québec,
1994.
Maybury, C.P., Brewin, C.R. «Social relationships, knowledge, and adjustment to multiple sclerosis. »
Journal of Neurology, Neurosurgery and Psychology, vol.47 : 372-376, 1984.
McKinnon, Kristin Duare Mental Health at Work: The New Challenge. Cover Page, 1999.
McNeal, D.; Somerville, N.; and Wilson, D. Use of job accommodations by employees aging with a
th
disability”. Prc. 18 Annu. RESNA Conf., 540-541, 1995.
McPherson, G. Regional Governance: A Foundation for a New Social Vision: A Discussion Paper.
Edmonton: Premier’s Council on the Status of Persons with Disabilities, 1997.
McTaggart, R. Principles for Participatory Action Research. Adult Education Quarterly 41: 3. 168-187,
1991.
Meyer, Luanna H., Beth Harry and Mara Sapon-Sheven School Inclusion and Multicultural Issues in
Special Education. In Multicultural Education: Issues and Perspectives, Banks and McGee Banks, eds.
Boston: Allyn and Bacon, 1997.
Meyerson, L. « Physical disability as a social psychological problem.» Journal of Social Issues Social
, vol.4 : 2, 1948.
Meyerson, L. « The social psychology of disability: 1948 and 1988.» Journal of Social Issues, vol.44 :
173, 1988.
Michailakis, D. « When Opportunity is the Thing to be Equalised». Disability & Society, vol.12, n? 1 :
17-30, 1997.
Minaire, P. « Disease, Illness and Health : The critical Models of the Disablement Process»,Bulletin of the
World Health Organization, vol.70, n? 3 : 373-379, 1992.
Minaire, P., «Le handicap en porte-à-faux»,Prospective et Santé, no 26 : 39-46, 1983.
Ministère de la Justice, Gouvernement du Canada. Modifications au code criminel et à la loi sur la preuve au
Canada concernant les personnes handicapées, rapport sur les positions des intervenants. Canada,
Gouvernement du Canada, 1995.
Minnes, P et al. « A transitional living environment for person with brain injuries: staff and client perceptions. »
Brain injuries, vol.12, n? 11 : 987-992, 1998.
Minnes, P. « Attitudes toward person with Drown Syndrome : the impact of television. » Journal of
developmental and physical disabilities, vol.11, n? 1 : 61-76, 1999.
Mitchell, P. « The Impact of Self-advocacy on Families ». Disability & Society
, vol.12, n? 1 : 43-56, 1997.
Mitchell, R.A. « Model of disability : an exemple from ophthalmology ». Disability and Rehabilitation, vol.19,
n? 11 : 490-491, 1997.
Monarque, C. « Association multi-ethnique pour l'intégration des personnes handicapées du Québec.»
L'integration, vol.3, n? 4 : 14-15, 1992.
Moore, E. et al. « Stass-patient relationships in the care of the long-term adult mentally ill». Social Psychiatry
and Psychiatric Epidemiology, vol.27 : 28-34, 1992.
Moos, R.H. « Person-environment Congruence in work, school, and health care settings. » Journal of
Vocational Behavior, vol. 31 : 231-247, 1987.
Moos, R.H. « Specialized living environments for older people : A conceptual framework for evaluation.»
Journal of Social Issues, vol.36, n? 2 : 75-94, 1980.
Morvan, J.S., Paicheler H. et al. Représentations et handicaps. Vers une clarification des concepts et des
méthodes. Paris, France, CTNERHI-MIRE, 1990.
Mottez B. «A s’obstiner contre les déficiences on augmente souvent le handicap : l’exemple des sourds»,
Sociologie et sociétés, Québec, Canada, Les Presses de l’Université Laval, 1977.
Munn, P. « Model of disability for children ». Disability and Rehabilitation, vol.19, n? 11 : 484-486, 1997.
51
Murphy, F.R., Scheer J., Murphy, Y., and Mack, R. Physical disability and social liminality: A study in the rituals
of adversity. Social Science and Medicine. 26(2): 235-242, 1988.
Murphy,R.F. et al. « Physical, Disability and Social Liminality : A Study in the Rituals of Adversity.
» Social
Science and Medicine, vol.26 : 335-342, 1988..
Muszynski, L. «Répondre aux besoins des personnes handicapées dans une optique d’égalité»,Réseau
international CIDIH et facteurs environnementaux, vol. 7, no 2, Québec, 1994.
Nagi, S.Z. « An epidemiology of disability among adults in the United States.» Health and Society, vol.54, n?
4 : 439-467, 1976.
Nagi, S.Z. « Disability concepts revisited : implications for prevention.» In Disability in America : Toward a
National Agenda for Prevention (Edited by Pope A.M. and Tarlov A.R.) : 309-327, Division of Health
Promotion and Disease Prevention, Institute of Medicine, National Academy Press, Washington D.C.,
1991.
Nagi, S.Z. Some conceptual issues in disability and rehabilitation In Sociology and Rehabilitation(Edited by
Sussman M.B.) : 100-113, American Sociological Association, Washington D.C., 1965.
Nagler, M. Perspectives on Disability (3rd Ed.). Palo Alto, CA: Health Markets Research, 1993.
National Center for Medical Rehabilitation Research. Research plan for the National Center for Medical
Rehabilitation Research (NIH publication no. 93-3509). Bethesda, MD, Author, 1993.
NCE News Artificial Intelligence Receives a Helping Hand. Toronto, 1999.
Neath, J., Schiner, K. « Power to People with Disabilities: empowerment issues in employment programming ».
Disability & Society, vol.13, n? 2 : 217-228, 1998.
Neufeldt, A.H. « À la recherche de nouvelles voies pour les services de santé mentale.» Santé Mentale au
Canada, vol.31, n? 4 : 21-25, 1983.
Neufeldt, A.H. « Emperical dimensions of discrimination against disabled people.» Health and Human Right,
vol.1, n? 2 : 174-189, 1995.
Neufeldt, A.H. et al. Disability and self-directed employment : business development models. Toronto, Captus
Press, 1997.
Newell, Christopher The Social Nature of Disability, Disease and Genetics: A Response to Gillam Persson,
Holtug, Draper and Chadwick. Journal of Medical Ethics. 25(2): 172-175, 1999.
Noel, E.C., Chadda, H.S. « Consolidating elderly and handicapped transportation services.» Transportation
Quarterly, vol.41 : 229-246, 1987.
O. Berry, J. « Families and Deinstitutionalization: An Application of Bronfenbrenner's Social Ecology Model».
Journal of Counseling & Development, vol.73 : 379-383, 1995.
O’Brien, J. L’intégration en action : comment améliorer l’école en accueillant dans les classe régulières ces
enfants présentant des besoins particuliers. Institut québécois de la déficience mentale, 1992.
O’Brien, J. et O’Brien, C.L. Members of each other: Perspectives on social support for people with severe
disabilities. Toronto, Inclusion Press, 1996.
Ochacka, J., Don Roth, J.L., Macgillivary, H. Lieux de travail à l'écoute des travailleursSommaire, Centre for
Research & Education in Human Services, Kitchener, Ontario, 1994.
Oddy, M., Coughlan, T., et Jenkins, D. «Social adjustment after closed head injury: A further follow-up seven
years after injury. » Journal of Neurology Neurosurgery. and Psychiatry, vol.48 : 564-568, 1985.
Office des Personnes Handicapées du Québec (OPHQ). L'Office des Personnes Handicapées du Québec
et la scolarisation des élèves handicapés. Drummondville, Québec, 1993.
Office des personnes handicapées du Québec. À part égale, l’intégration sociale des personnes handicapées
: un défi pour tous, (Fougeyrollas P., Zawilski J., Gadreau R., Falcimaigne A.), Gouvernement du
Québec, 1984.
Office des personnes handicapées du Québec. Agir maintenant: Les personnes handicapées au Québec, un
projet de société dix ans plus tard. Drummondville: O.P.H.Q, 1993.
Office des personnes handicapées du Québec. On equal terms. A policy for prevention and social integration
of handicapped persons. Les publications du Québec, Québec, 1994.
Office des Personnes Handicapées du Québec. Orientation concernant les mesures à privilégier pour l'emploi
des personnes handicapées. Lise Constantin, Chef du service d'analyse et de l'évaluation de
52
l'intégration, Direction de la planification de l'évaluation et de la recherche, Office des Personnes
Handicapées du Québec, Drummondville, 1992.
Office des Personnes Handicapées. Étude sur la problématique des personnes handicapées membres des
communautés ethnoculturelles. Québec, Gouvernement du Québec, Office des Personnes
Handicapées, 1993.
Ogien, A. Sociologie de la déviance. Paris, A. Colin, coll. U, Série sociologique, 1995.
Oliver, Mike A Sociology of Disability or a disablist sociology?in «Disability and Society: Emerging Issues and
Insights, Len Barton (ed)». Essex: Wesley Longman Limited, 18-42, 1996.
Social Work With
Disabled People. Basingstoke: Macmillan, 1983.
Oliver, M. « Changing the social relations of research production? » Disability, Handicap and Society, vol.7 :
101, 1992.
Oliver, M. « Social policy and disability: some theoretical issues.» Disability, Handicap and Society, vol.1 : 5,
1986.
Oliver, M. « Defining Impairment and Disability : issues at stake.» In. Exploring the Divide : Illness and
Disability, Barnes C and Mercer G. Eds, Ledds, The Disability Press, 1996.
Oliver, M. Disablement in Society: a Socio-Political Approach. Thames Polytechnic, London, 1990.
Oliver, M. The Politics of Disablement. London, MacMillan, 1990.
Oliver, M. Understanding disability. From theory to practice. MacMillan Press LTD., 1996.
Olivier, M. et Barnes, C. Disabled people and social policy from exclusion to inclusion. London, NY, Addison
Wesley Longman, 1998.
Ontario Ministry of Housing. Planning together: Improving the qualily of life in public housing. Toronto: Queen's
Printer for Ontario, 1992.
Organisation Mondiale de la Santé (OMS). Classification internationale des handicaps : déficiences,
incapacités et désavantages. CTNERHI - INSERM, Paris, 1988.
Organisation Mondiale des Personnes Handicapées. IMPACT, Inclusion et la Fédération Mondiale des Sourds.
Action de conscience sur les personnes handicapées (ACH), Londres, Royaume Uni, n? 34-36-38-3941-42-43-44, 1996.
Ouellette-Kuntz, H. et al., « Evaluating Quality of Life: The Development of the Quality of Life Interview
Schedule (QUOLIS) ». Journal on Developmental Disability, vol.3, n? 2 : 17-31, 1994.
Pain, K. et al. « Quality of life : what does it mean in rehabilitation? » Journal of rehabilitation, vol.64, n? 2 :
5-11, 1998.
Paradis, E. Pour tracer le bon chemin : Problématique de la déficience mentale et de l'intégration des
déficients mentaux. Commission des enseignants des commissions scolaires, 1986.
Peters, D. J. « Disablement observed, addressed, and experienced: integrating subjective experience into
disablement models ». Disability and Rehabilitation, vol.18, n? 12 : 593-603, 1996.
Peterson, M. Ongoing Employment Supports for Persons With Disabilities. Wayne State University, Detroit,
Michigan, non-daté.
Pfeiffer, David and Karen Yoshida Teaching Disability Studies in Canada and the USA. Disability and Society.
10(4): 475-500, 1995.
Pfeiffer, D. « 'We Won't Go Back': the ADA on the grass roots level». Disability & Society, vol.11, n? 2 : 271284, 1996.
Pfeiffer, D. «Major problems with ICIDH», ICIDH and Environmental Factors International Network, vol.8, no
3 : 26-30, 1996.
Phillips, M. «Damaged goods : Oral narratives of the experience of disability in American culture.» Social
science and medicine, vol.30, n? 8, p. 849-857, 1990
Pierce, Linda L. Barriers to Access: Frustrations of People Who Use a Wheelchair for Full-Time Mobility.
Rehabilitation Nursing. 23(3): 120-125, 1998.
Pitaud, P. « Contribution à l'analyse du concept de "handicap" ». Handicaps et inadaptations - Les cahiers du
CTNERHI, vol.38 : 39-44, 1987.
Pope, A.M. et Tarlov, A.R. (Eds). Disability in America. Toward a national agenda for prevention. Institute of
Medicine, Washington, National Academy Press, 1991.
53
Powers, Laurie E., George H.S. Singer, Jo-Anne Sowers On the Road to Autonomy: Promoting SelfCompetence in Children and Youth With Disabilities. Baltimore: Paul H. Brooks Pub, 1996.
Québec. Étude sur la problématique des personnes handicapées membres des communautés
ethnoculturelles. Office des personnes handicapées du Québec, 1993.
Ramund,B., Stensman, R. « Quality of life and evaluation of fonctions among people with severely impaired
mobility and non-disabled controls. » Scandinavian Journal of Psychology, vol.29 : 137-144, 1988.
Raphael, D., Brown, I., Renwick, R., et Rootman, I. A new approach to measuring quality of life of persons with
developmental disabilities: Description, procedures, and psychometric qualities of the measuring
instruments. Manuscript submitted for publication, 1994.
Raphael, D., Renwick, R., Brown, I., et Rootman, I. « Studying the lives of persons with developmental
disabilities: Methodological issues from the quality of life project.» Journal on Developmental
Disabilities, vol.1 : 30-49, 1993.
Ravaud, J.F. et al. « Discrimination Towards Disabled People Seeking Employement ». Soc. Sci. Med., vol.35,
n? 8 : 951-958, 1992.
Reason, Peter Three Approaches to Participative Inquiryin «Handbook of Qualitative Research» Norman K.
Denzin and Yvonna S. Lincoln, eds. London: Sage Publications. (325-339)
Reed, B. The Role of the Vocational Evaluator in Assistive Technology Assesments and Accommodations.
Université of Wisconsin, non-daté.
Reed, K.L. et Sanderson, S.R. Concepts of Occupational Therapy. Second Edition. Baltimore, Williams &
Wilkins, 1982.
Remenyl, A. « From system changes to workplace accom odation: rehabilitation trends in training, education,
and the system of professions in Australia». Disability and Rehabilitation, vol.18, n? 8 : 415-428, 1996.
Renwick, R., Brown, I., Raphael, D. « Quality of Life: Linking A Conceptual Approach to Service Provision».
Journal on Developmental Disabilities, vol.3, n? 2 : 32-44, 1994.
Report of the Workgroup on Children's issues. Proposal for the revision of the ICIDH. Report of the Workgroup
on Children's issues. Québec, Canada, 1995.
Riddick, C.C., Daniel, S. N. « The relative contribution of leisure activities and other factors to the mental
health of older women. » Journal of Leisure Research, second quarter : 136-147, 1984.
Rieu, N. Recherche sur les notions de représentations sociales et de stratégies identitaires.Laboratoire de
recherche sociale sur les déterminants des situations de handicap et de la participation sociale des
personnes ayant des déficiences. Équipe de recherche sociale, réadaptation et participation sociale
(CQRS). Centre François-Charon, Québec, 1995.
Ringeart, Laurie The Delivery of Assistive Technology Viewed from the Consumer Perspective: Independent
Living Considerations. Graduate Dissertation. University of Manitoba.
Rioux M.H. «Disability : The place of judgement in a world of fact.» Journal of Intellectual Disability Research.,.
vol.41, Part 2 : 102-111, 1997.
Rioux, M. «Ethical and socio-political considerations on the use and revision of the ICIDH».ICIDH and
Environmental Factors International Network, vol.8, no 3 : 35-36, Québec, 1996.
Rioux, M., Back M.(eds). Disability is not Measles : New Research Paradigms in Disability
, Ontario, Roher
Institute, 1994.
Rioux, M.H. et,Crawford, C. « Poverty and Disability: Toward a New Framework for Community Mental
Health. » Canadian Journal of Community Mental Health, vol.9, n? 2: 97-109, 1990.
Rivers-Moore, Bridget Family Violence Against Women With Disabilities. DAWN Canada.
Robine, J.-M., Ravaud, J.-F. et Cambois , E. « General concepts of disablement. » In D. Hamerman (Ed).
Osteoarthristis. Public Health Implications for an Aging Population. : 63-83. Baltimore : The Johns
Hopkins University Press, 1997.
Robinson, R. « Canadian association of independent living centres: growing pains and empowerment. »
Abilities, été : 16-19, 1991.
Rocque, S., Langevin, J., Belley, C., Trépanier, N., Forget, N., Sercia, P.et al. « Éléments environnementaux
facteurs d'obstacle à l'activité de la personne présentant des incapacités intellectuelles.» Revue
CNRIS, vol.1, n? 1 : 28-35, 1996.
54
Rocque, S., Trépanier, N., Langevin, J., Dionne, C., «De meilleures définitions pour une action plus efficace»,
Réseau international CIDIH et facteurs environnementaux, vol. 8, no 2 : 7-9, Québec, 1996.
Rosenbloom, S. The transportation needs of the elderly and handicapped: The Historical basis and the current
state of the art of services for special users. Austin, TX: Graduate Program in Community & Regional
Planning, School of Architecture, The University of Texas at Austin, 1990.
Rousseau, J., Potvin, L., Dutil,É., Falta, P. «Évaluation de l’interaction personne-environnement: la mesure
de la situation de handicap à domicile », Réseau international CIDIH et facteurs environnementaux,
vol. 7, no 3 et vol. 8, no 1 : 69-74, Québec, 1995.
Roy, K. Recension d'écrits sur les rôles sociaux, évolution historique et conceptuelle de la notion
. Laboratoire
de recherche sociale sur les déterminants des situations de handicap et de la participation sociale des
personnes ayant des déficiences. Équipe de recherche sociale, réadaptation et participation sociale
(CQRS) Centre François-Charon, Québec, 1995.
Russell, S. Social implications of multiple sclerosis. Final report of a formulation apart from the National Health
Research and Development Program, Department of Health and Welfare Canada, 1985.
S. York, A. « The importance of the community and its resources ». Disability and Rehabilitation, vol.19, n?
4 : 147-149, 1997.
Safilios-Rothschild, C. The Sociology and Social Psychology of Disability and Rehabilitation
. Random House,
New York, 1970.
Segal, S.P., Silverman, C.,Baumohl, J. « Seeking person-environment fit in community care placement. »
Journal of Social Issues, vol. 45 : 49-64, 1989.
Shah, C.P. Public Health and Preventive Medicine in Canada. Toronto: University of Toronto Press, 1994
Shakespeare, T. « Cultural Representation of Disabled People: dustbins for disavowal?» Disability & Society,
vol.9, n? 3 : 283-299, 1994.
Shakespeare, T. « Disabled People's Self-organisation: a new social movement? ». Disability Handicap and
Society, vol.8, n? 3 : 249-364, 1993.
Shakespeare, T., Watson, N. «Defending the Social Model». Disability and Society, vol. 12, no 2 : 293-300,
1997.
Shalock, R. L.(Ed.). Quality of life: Perspectives and Issues. Washington, DC: American Association on Mental
Retardation, 1990.
Scheer, J. and Groce, N. Impariment as a Human Constant: Cross-cultural and historical perspectives on
variation. Journal of Social Issues. 44(1): 23-37, 1988.
Scheer, J., and Luborsky, M. Post-polio sequel: The cultural context of polio biographies. Orthopedics. 14:
1173-1181, 1991.
Sheehan, P., Boisvert, J.M., Pépin, M., Fougeyrollas, P. «Les attitudes envers les personnes ayant une
incapacité physique ». Revue Internationale de Psychologie sociale, n? 2 : 23-28, 1995.
Shriner, J. et al. « "All" means "All" --- Including Students with Disabilities». Educational Leadership, vol.6,
n? 51 : 38-42, 1994.
Schuntermann, M.F. « The International Classification of Imapairments, Disabilities and Handicaps (ICIDH)
- Results and Problems » International Journal of Rehabilitation Research : 1-11, 1996.
Siller, J. « The measurement of attitudes toward physically disabled persons.» In: Peter Herman, C., Zanna,
M.P., Tory Higgins. E. (Eds.),Physical Appearance, Stigma and Social Behavio, Lawrence Erlbaum,
Hillsdale , NJ: 245-260, 1986.
Silvers, A. « 'Defective' agents: equality, difference and the tyranny of the normal. » Journal of Social
Philosophy, vol. 25 : 154, 1994.
Simard, C., Berthouze, S., Calmels, P. «Vieillissement et morbidité: situation de handicap et chronicité»,
Réseau international CIDIH et facteurs environnementaux, vol. 8, no 2 : 10-19, Québec, 1996.
Simonson, Lynell J. and Bushaw, Virginia A. Participatory Action Research: Easier Said Than Done. American
Sociologist. 24(1), 1993.
Simpson, A. « Individual advocacy through theindependent living centre. » In A. Neufeldt (Ed.), Independent
Living : An agenda for the ‘90’s : 5-14. Ottawa, Canadian association for independent living centres,
1993.
55
Sinson, J. C. « Micro-institutionalisation? Environmental.and manegerial influences in ten living units for people
with mental handicap. » British Journal of Mental Subnormality, vol.26 : 77-86, 1990.
Siosteen, A., et al. « The Quality of Life of Three Functional Spinal Cord Injury Subgroups in a Swedish
Community. » Paraplegia, vol.28 : 476-488, 1990.
Sjögren, O. « Closing address: analysis of the environmental approach social participation with regard to other
issues. General reflection on the key considerations raised by this approach». ICIDH and
Environmental Factors International Network, vol. 8, no 3 : 63-71, Quebec, 1996.
Sjögren, O. « Commentaires sur le handicap » - The Nordic Neuropediatric Society's Classification Group.
Réseau International CIDIH, vol.3, n? 2 : 17-19, 1990.
Sjögren, O. Individualized services programs. A best support and service model for children, youths and adults
with disabilities and their familie 1. The model, ISP Norden, Sweden 1995.
Sjögren, O. Individualized services programs. A best support and service model for children, youths and adults
with disabilities and their familie 2. The form, ISP Norden, Sweden, 1996.
Société Canadienne de la Classification internationale des déficiences, incapacités et handicaps.Critique de
la proposition hollandaise pour la révision de la classification des incapacités de la CIDIH.Société
canadienne de la Classification internationale des déficiences, incapacités et handicaps, 1995.
Söder, M. « Disability as a social construct: the labelling approach revisited ». European Journal of Special
Needs Education, vol.4, n? 2 :117-129, 1989.
Söder, M. «Relative definition of handicap : Implication for research.» Upsala Journal Medical Science, 44 :
24-29, 1987.
Solmundson, Carrie K. The Supported Retirement Program: the social validity of later life planning for older
adults with mental disabilities. Graduate Dissertation: University of Manitoba, 1997
.
Sotello Viernes Turner, C. et Seashore Louis, K. «Society's Response to Differences, A Sociological
Perspective ». Remedial and Special Education, vol.17, n? 3 : 134-141, 1996.
Spittle, B. « Paternalistic Interventions with the Gravely Disabled». Australian and New Zealand Journal of
Psychyatry, vol.26 : 107-110, 1992.
St Michel, G. Applications de la proposition québécoise: processus de production du handicap. Québec,
SCCIDIH-CQCIDIH, 1995.
St Michel, G. Synthèse des réponses au questionnaire, révision de la proposition québécoise de classification
«processus de production des handicaps». Québec, SCCIDIH-CQCIDIH, 1995.
Stainton, T. Autonomy and social policy. Avebury: Brookfield, 1994.
Statistics Canada. Canadian Health and Activity Limitations Survey. Ottawa, Canada, 1992.
Stephen, I. « Sexual equality: how enlightened have we become? » Disability and Rehabilitation,vol.18, n?
12 : 627-628, 1996.
Stienstra, Deborah and Patrick Kellerman Taking Action on the United Nations Standard Rules on Disability.
Stiker, H.J. Corps infirmes et Sociétés. Paris, Aubier Montaigne, 1982.
Stokols, D. et Altman, I. Handbook of environmental psychology. N.Y., John Wileg and sons, 1987.
Stone, D., The Disabled State. London, Macmillan, 1984.
Stone, E. et Priestley, M. « Parasites, pawns and partners : disability research and the role of non-disabled
researchers . » Brit.Jnl. of Sociology, vol.47, n? 4 : 699-715, 1996.
Strauss, A.L. Chronic illness and the Quality of Life. St. Louis, MO: Mosby, 1975.
Stubbins, J. et Albee, G.W. « Ideologies of clinical and ecological models . » Rehabilitation Literature, vol.45,
n? 11-12 : 349-353, 1984.
Stumer, J.,Hickson, L. et Worrall, L. « Hearing impairment, disability and handicap in elderly people living in
residential care and in the community ». Disability and Rehabilitation, Queensland, Australia, vol. 18,
n? 2 : 76-82, 1996.
Sullivan, M. Marital dysfunction as a predictor of depression in patients newly diagnosed with multiple sclerosis:
A longitudinal study. Research proposal, in prep.
Swain, J., Finkelstein, V., French, S., and Oliver, M. (eds).Disabling Barriers — Enabling Environments.London
: Sage, 1993.
Szymanski, E.M. et Parker, R.M. (eds) Work and disability : issues and strategies in career, development and
job placement . Austin, Pro-Ed, 1996.
56
Table de concertation des regroupements régionaux d'organismes de promotion du Québec. La classe
ordinaire pour elles et eux aussi... Table de concertation des regroupements régionaux d'organismes
de promotion du Québec. Mémoire sur les services éducatifs aux élèves handicapées, 1995.
Tennant, A. « Model of disability: a critical perspective ». Disability and Rehabilitation, vol.19, n? 11 : 478-479,
1997.
The Canadian council on Rehabilitation and Work (CCRW).Perspectives on the Journey: The Qualifications
and Experiences of Canadian Job Seekers with Disabilities. Winnipeg: The Canadian Council on
Rehabilitation and work, 1993.
Thuriaux, M. «Les conséquences de la maladie et leur mesure : introduction.» World Health Statistics Quaterly.
Vol.42, n? 3 : 110-114, 1989.
Tighe, R. The impact of using computer technology on people wilh disabilities. Unpublished doctoral
dissertation, University of Toronto, Toronto, Ontario, 1994.
Topliss, E. Social Responses to Handicap. Longman, Harlow, 1982.
Torjman, Sherri The Disability Income System in Canada: Otions for Reform. Report prepared for the Task
Force on Disability Issues. Ottawa: The Caledon Institute of Social Policy, 1996.
Towns, F. et Feldman, M.A. « Services for parents with a developmental handicap.» Entourage, vol.2 : 30-38,
1987.
Townsend, E. « Enabling Empowerment: Using simulations versus real occupations ». Canadian Journal of
Occupational Therapy, vol.63, n? 2 : 114-128, 1996.
Townsend, E. et Ryan, B. « Assessing independence in community living.» Canadian Journal of Public Health,
vol.29 : 23-37, 1991.
Turner, R.J., Frankel, B.G. et Levin, D. « Social support: Conceptualization, measurement and implication for
mental health. » In. Greenley (Ed.) Research in Community and Mental Health (Vol,III). Greenwich,
CT, JAI Press, 1983.
Tutt, N. « The unintended consequences of integration. » Educational and Child Psychology, vol.2 : 30-38,
1985.
Ulf, J., Merényi, A.-C. « Social play between blind and sighted preschool children». CEVH Early Childhood
Conference, Bangkok, Thailand, 1992.
United Nations. The Standard Rules on the Equalization of Opportunities for Persons with Disabilities
, 1994.
United Nations. World programme of action concerning disabled persons. New York, 1983.
Üstün, S. van Duuren-Kristen, TB. et al. « The International Classification of Impairements, Disabilities, and
Handicaps (ICIDH): mental health aspects of its use in rehabilitation». Eur Psychiatry, Paris : 51-55,
1996.
Valentine, F. The Canadian Independent Living Movement : An Historical overview. Ottawa, Canadian
association for independent living centres, 1994.
Valentine, F., Vickers, J. «Released from the Yoke of Paternalism and «Charity» : Citizenship and the Right of
Canadians with Disabilities.» International Jourmal of Canadian Studies / Revue internationale
d’études canadiennes, 14 Fall / Automne 1996.
Van Hof, C., L.Looijestijn, P. « An interdisciplinary model for the rehabilitation of visually impaired and blind
people: application of the ICIDH concepts ». Disability and Rehabilitation, vol.17, n? 7 : 391-399, 1995.
Van Ravensberg, D. et al. Proposal for adaptation of the classification of (dis)abilities of the ICIDH
. WHO
collaborating centre for the ICIDH, 1995.
Van Ravensberg, D., Heerkens, Y. et Brandsma, W. Progress report on disabilities. Paris, WCC/WHO
Collaborating Centre for the ICIDH, 1995.
Vaux, A. « An ecological approach to understanding and facilitating social support.» Joumal of Social and
Personal Relationships, vol.7 : 507-518, 1990.
Verbrugge, Lois M. The Iceberg of Disability. «The Legacy of Longevity, Health and Health Care in Later Life»
Sidney M. Stahl (ed.) Newbury Park, CA: Sage Publications, 1990.
Verbrugge, L. M., Jette A. M. « The Disablement Process ». Soc. Sci. Med., vol. 38, no 1 : 1-14, 1994, Grande
Bretagne.
57
Ville, I. et al. « Social identity and the International Classification of Handicaps: An evaluation of the
consequences of facioscapulohumeral muscular dystrophy ». Disability and Rehabilitation, vol.14, n?
4 : 168-175, 1992.
Ville, I., Ravaud, J.-F. «Représentation de soi et traitement social du handicap.» Sciences Sociales et Santé,
vol.12, n? 1 : 7-30, 1994.
Ville, I., Ravaud, J.-F. « Work values: a comparison of non-disabled persons with persons with paraplegia.»
Disability and Rehabilitation, vol.20, n? 4 : 127-137, 1998.
Vondracek, F.W., Lerner, R.M. et Shulenberg, J.E. Career development : A life-span developmental approach,
Hillsdale, NJ, Lawrence Erlbaum, 1986.
Vujakovic, P. et Matthews, M.H. « Contorted, Folded, Torn: environmental values, cartographic representation
and the politics of disability». Disability & Society, Cambridge, vol.9, n? 3 : 359-374, 1994.
Wan, T.T.H. « Correlates and consequences of severe disabilities». Journal of Occupational Medicine, vol.16,
n? 4 : 234-244, 1974.
Wasserman, D. « Impaimient, disadvantage and equality: a reply to Anita Silvers (1994).» Journal of Social
Philosophy, vol.25 : 181, 1994.
Wasserman, D. Disability, Discrimination, and Fairness. Report from the Instituts for. Philosophy and Public
Policy, vol.13, n? 7, 1993.
Wassertnan, G.A. « Affective expression in normal and physically handicapped infants : Situational and
developmental effects. » Journal of American Academy of Child Psychiatry, vol.25, n? 3 : 393-399,
1986.
Webb, R.D.G., Lamanna, P., Kovacs, G., Hall, P. et Dickson, S. «Ergonomics and job placement of workers
disabled through occupational injury. » In A. Mital & Karwowski (Eds.)Ergonomics in rehabilitation :
99-114, New York : Taylor and Francis, 1988.
Weisman, G.D. « Modeling environment-behaviour systems : A brief note.» Journal of man-environment
Relations, vol.1, n? 2 : 32-40, 1981.
White, W. J. « The postschool adjustments of persons with learning disabilities: Current status and future
projections. » Journal of learning disabilities, vol.25 : 448-456, 1992.
Whiteneck G., Fougeyrollas P. «Mémoire du groupe de travail sur les facteurs environnementaux.
Environmental Factors Task Force Position Paper. Environmental Factors and ICIDH.» ICIDH and
Environmental Factors International Network, vol.8, no 3 : 14-18, 1996.
Whiteneck, G.G. et al. « Quantifying handicap : a new measure of long-term rehabilitation outcomes. » Arch
Phys Med Rehabil, vol.73 : 519-525, 1992.
Whiteneck, G.G., Fougeyrollas, P. et Gerhart, K.A. «Elaborating the Model of Disablement. » In M.J. Fuhrer
(Ed). Assessing Medical Rehabilitation Practices. The Promise of Outcomes Research. Baltimore,
Paul H., Brookes Publishing Co, 1997.
WHO « International classification of impairments, disabilities and handicaps.» A manual of classification
relating to the consequences of desease, Geneva, 1980.
Whyte, William Foote (ed.) Participatory Action Research. London: Sage Publications, 1991.
Wieland, K. et al. « The integration of employees with disabilities in Germany and the importance of workplace
design ». Disability and Rehabilitation, vol.18, n? 8 : 429-438, 1996.
Willer, B., Button, J. et Corrigan, J.D. «The concept of handicap in rehabilitation and research.» In M.J. Fuhrer
(Ed). Assessing Medical Rehabilitation Practices. The Promise of Outcomes Research. Baltimore
: Paul H. Brookes Publishing Co, 1997.
Willer, B., Rosenthal, M., Kreutzer, J., Gordon, W., Rempel, R. «Assessment of community integration
following rehabilitation for traumatic brain injury.» Journal of Head Trauma, vol.8, n? 2 : 75-87, 1993.
Willer, B.S., Linn, R., Allen, K. « Community integration and barriers to integration for individuals with brain
injury. » In M. A. J. Finlayson et S. H. Garner (Eds),Brain Iniury Rehabilitation: ClinicalConsiderations.
Baltimore: Williams & Wilkins, 1993.
William, G. « The movement for independent living: An evaluation and critique.» Soc Sci Med, vol.17, n? 15,
1983.
Williams, G. « Disablement and the Ideological Crisis in Health Care.» Social Science and Medicine, vol.33,
n? 4, p. 517-524, 1991.
58
Williams, J.M. « Technology and the Disabled. » Personnel Administrator, vol.33, n? 7 : 81-83, 1988.
Williamson, C. « Social work practice with people with disabilities.» In Morales & Sheafor, Social Work : A
Profession of Many Faces, Boston, Allyn and Bacon : 375-397, 1998.
Wilson, N., P. et all. « Virtual reality, disability and rehabilitation». Disability and Rehabilitation, vol.19, n? 6 :
213-220, 1997.
Woelders, H.J. « Telework: New Opportunities for the Handicapped unemployed workers. » International
Journal- of Sociology and Social Policy, vol.10, n? 4-6 : 176-180, 1990.
Wolfensberger, W. « Human service policies: the rhetoric versus the reality. » In: Barton, L. (Ed.), Disability and
Dependence. Falmer, Lewes : 23, 1989.
Wolman, Clara; Resnick, Michael; Harris, Linda; Blum, Robert Emotional Well-Being Among Adolescents With
and Without Chronic Conditions. Society for Adolescent Medicine. 15: 199-204, 1994.
Wood, P.H.N. «Measuring the Consequences of Illness». World Health Statistics Quaterly, vol.42 : 115-121,
1989.
Wood, P.H.N. «Origins of the ICIDH», ICIDH International Network, Québec, vol. 2, no 2 : 35-36, 1988.
Woodend, A.K., R.C. Nair, A.S-L. Tang. «Definition of life quality from a patient versus health care professional
perspective ». International Journal of Rehabilitation Research, vol.20 : 71-80, 1997.
Woodhill, G. Independent living and Participation in Research a critical analysis
, Center for Independent Living
in Toronto, 1992.
Woodill, G. et al. Being, belonging, becoming : an approach to quality of life of persons with developmental
disabilities. Mimeograph, 1994.
Woodill, G., Baker, G. et Velche, D. Co-requisites of employment equity for person with disabilities in the
Ontario public service. Toronto, Offïce of disability Issues, 1987.
World Health Organization. International Classification of Impairments, Disabilities and Handicaps,Geneva,
1980-1993.
World Health Organization. ICIDH 2. International Classification of Impairments, Activities and Participation Beta-testing 1-Draft, Geneva 1997.
Wright, B.A. Physical disability - A psycho-social approach. 2nd Ed. New York, Harper & Row, 1983.
Yoshida, K. « Employment among person with spinal cord injury : work trajectories, resources and barriers. »
Research in the Sociology of Health Care, vol. 11 : 151-171, 1994.
Yoshida, K.K. « Life reconstruction among individuals withspinal cord injuries : a sociological analysis.» The
Humanities and Social Science, vol.53, n? 8, 1993
Yoshida, K.K. « Reshaping the self : a pendular reconstruction of the self and identity among adults with spinal
cord injury. » Sociology of health and illness, vol.15, n? 2 : 217-245, 1993.
Young, I. « Justice and the Politics of Difference Social. » Princeton University Press, New Haven, NJ, 1990.
Yuditsky, I. Effective empowerment. Strategies for mading education accessible for persons with disabilities.
Canadian Rehabilitation, Council for the Disabled, 1991.
Zarb, Gerry On the Road to Demascus: first steps towards changing the relations of disability research
production”. Disability, Handicap and Society. 7(2): 125-138, 1992.
Zarit, S.H., Reever, K.E. and Bach-Peterson, J. «Relatives of the impaired elderly : corelates of feelings of
burden ». The gerontologist, vol.20, n? 6 : 649-655, 1980.
Zola I. « Social and cultural disincentives to independent living.» Arch Phys Med Rehabil, vol.63, 1982.
Zola, I. « Depictions of Disability- Metaphor, Message and Medium in the Media:A research and Policy
Agenda. » Social Science Journal, vol.44 : 5-17, 1985.
Zola, I.K. « Toward the necessary universalizing of disability policy.» The Milbank Quarterly, vol.67 : 401-428,
1989.
Zola, I.K., 1993. « Disability statistics, what we count and what it tells us: a personal and political analysis.»
Journal of Disability Policy Studies, vol.4 : 9, 1993.
Zola, K. I. « Social and cultural disincentives to independent living». Arch Phys Med Rehabil, vol.63 : 394-397,
1982.
59
APPENDIX B: LETTERS OF SUPPORT
60