A. The LCO’s Project on the Law as It Affects Persons with Disabilities
This is the Final Report for the Law Commission of Ontario’s (LCO) project on the law as it affects persons with disabilities, concluding this multi-stage, multi-year project.
The experience of disability has a far reaching impact on the lives of Ontarians. According to 2006 Statistics Canada figures, over 15 per cent of Ontarians report living with an activity limitation, and the rate of disability is increasing. This means that almost everyone will be personally affected by disability at some point during their life, whether because they have or will develop a disability, or through the experiences of a loved one. This is a reality which profoundly shapes the ways in which individuals encounter the law, and to which law and policy-makers have, over the past forty years, increasingly attempted to respond. There have been considerable advances as law and policy have more frequently aimed to reflect and address the needs, circumstances and aspirations of persons with disabilities. Still, there is much to be done. The myriad of laws that affect persons with disabilities and aim to address disadvantage may be difficult to access and implement, and so may not have the intended effect. Persons with disabilities continue to disproportionately live in low-income, and to experience barriers to education, employment, housing, and personal safety and security. The combined effect of these barriers is, for many persons with disabilities, social and economic marginalization.
This project aims to contribute to the ongoing development and evolution of the law as it affects persons with disabilities. It received its original inspiration in part from a proposal from the then Executive Director of ARCH Disability Law Centre for the LCO to address issues relating to persons with intellectual and mental health disabilities, particularly personal autonomy and supportive decision-making, and dignity and citizenship in one’s own home. The LCO also received proposals related to other areas of disability law. Considering these proposals and the broader landscape surrounding the law and the experience of disability, in late 2007, the LCO’s Board of Governors approved a project to develop a holistic, coherent framework for the law as it affects persons with disabilities.
While many laudable legislative initiatives related to disability have been developed in recent years, there was a sense that the law in this area was complex, contradictory, fragmented and not necessarily achieving the goals set for it. Because laws tend to be developed in response to immediate or particular needs, the impact and interrelationship of a particular law with other laws and policies may not have been assessed against clear standards. The project was therefore not intended to focus on reform of any one specific issue; rather, its purpose was to develop a principled analytical framework that could be used as a tool for shaping new legislative and other initiatives that affect persons with disabilities or reforming current law and policies.
The project identifies a set of principles for the law as it affects persons with disabilities, sets out an evaluative framework for the law that is based on those principles, and applies that framework to the legislative regime governing attendant care for persons with disabilities.
Work on the project commenced in early 2009. This multi-stage project included the distribution of two consultation papers and an interim report, four stages of public consultation, and the funding of six external research papers, as well as considerable internal research, including research on a number of transition points in the lives of persons with disabilities.
The framework developed through this project will be of assistance to those who develop laws and policies, such as legislators and policy-makers, and private actors who develop policies and programs that affect persons with disabilities; to those who interpret laws, such as courts and tribunals; and to those who identify needs and advocate for reforms.
As is discussed at more length later in the next chapter, this project is closely related to the LCO’s similar project on the law as it affects older adults, the Final Report for which was released in July 2012. There is an under-examined relationship between aging, impairment and disability, so that the projects intersected in important ways. As well, given the similarities in the nature of the projects, there were many opportunities for the projects to inform and support each other. Therefore, while there are many areas where the two projects diverged, they were developed in tandem, and have strengthened each other.
B. The Primary Goal of the Project: Advancing Substantive Equality through Law for Persons with Disabilities
While the experiences of persons with disabilities vary widely, the experience of marginalization and discrimination based on disability is common. Negative attitudes and stereotypes, as well as the tendency to overlook the very existence of persons with disabilities, create barriers for persons with disabilities across a broad spectrum of environments. These attitudes may manifest at the individual level. Importantly, they may also significantly shape structures, systems and institutions – including laws and legal institutions. These attitudes and stereotypes are often referred to as “ableism”.
Over the past several decades, significant efforts have been made to identify, understand and address ableism and its effects on the opportunities and experiences of persons with disabilities, with the goal of achieving a more just and equal status for persons with disabilities at all levels of society.
This goal of achieving substantive equality for persons with disabilities has been articulated in many important legal and policy documents, including the United Nations Convention on the Rights of Persons with Disabilities, the Canadian Charter of Rights and Freedoms, the Ontario Human Rights Code and In Unison.
The achievement of substantive equality for persons with disabilities requires efforts from all sectors of society, and a multi-faceted approach. However, the LCO believes that this evaluative framework for law, policy and practice, based on the overarching value of substantive equality, makes a significant contribution to its realisation in the development of law, and is in harmony with the LCO’s mandate to address the relevance, effectiveness and accessibility of the law. Therefore, considerations related to ableism and substantive equality are central to the LCO’s development of a framework for the law as it affects persons with disabilities, and to this Final Report.
C. Developing the Project: The Process
1. Identifying and Shaping the Project
By its nature, this Project is very broad in scope. Given the wide range of Ontario laws and policies that affect persons with disabilities in areas as diverse as the legal system, employment, income support, transportation, the built environment, health law, caregiving supports, education and mental health, it was a significant task to comprehensively identify the current legal framework for persons with disabilities, the principles and assumptions that underlie it, and the way in which it has been operationalized, let alone develop a principled basis for reforming and developing this area of law.
The LCO therefore commenced this project with a two-part preliminary consultation. The aim of the preliminary consultation was to assist in defining the scope of the project, determining foundational approaches to the issues raised, and identifying preliminary or working principles.
The LCO conducted a series of in-person interviews with key organizational stakeholders, including advocacy and community organizations, legal professionals, and experts and academics. Concurrently, the LCO developed for public release a preliminary consultation paper. This Paper outlined some of the key conceptual approaches to disability, and how they have evolved over time. It examined definitions of and approaches to disability found in key international documents, influential Canadian policy frameworks and demographic research. It also provided a brief overview of Ontario legislation relating to disability and the types of approaches to disability used in these statutes and regulations. Lastly, it raised questions for consideration in adopting approaches to the law and disability.
In early 2010, the LCO formed an ad hoc Project Advisory Group, consisting of representatives of government, the legal profession, academics, and various advocacy and community organizations. The purpose of the Advisory Group was to provide the LCO with advice on public consultations and on the substance of the project. It met on a regular basis from early 2010 until the end of the project in mid-2012. The Advisory Group provided the LCO with advice and practical assistance with consultations, input on the structure and format of the Framework, and considerable substantive expertise towards the development of the Consultation Paper and the Interim and Final Reports. The LCO is very grateful for the work of the Project Advisory Group: this project could not have been successfully completed without it.
2. The Research Process
Given the size of this project, considerable research was required. Much of the foundational research was conducted internally, by LCO staff and by student researchers and pro bono students. In addition, three major research initiatives were undertaken as part of this project.
Osgoode Hall Law School Scholar in Residence: Professor Roxanne Mykitiuk of Osgoode Hall Law School, an expert in disability law, served as Scholar in Residence during winter 2009. Her research focused on identifying, analyzing and understanding sources for principles for the law as it affects persons with disabilities, including reviewing relevant caselaw, international documents and academic sources. This work significantly shaped the project and provided the groundwork for the identification for the principles. Following the completion of her time as Scholar in Residence, Professor Mykitiuk remained involved in the project as Special Advisor. She has generously given of her time and expertise by assisting the selection of Commissioned Research Papers, the development of the community consultation, and reviewing the LCO’s consultation paper and Framework.
Commissioned Research Papers: Based on the preliminary research and consultation, the LCO identified some principles and starting approaches to developing the Framework for the Law as It Affects Persons with Disabilities. In early 2010, the LCO issued a Call for Papers, the objective of which was to obtain expert input on the meaning and application of principles to such a framework, as well as to create critical debate about law reform and promote scholarly research in the area of the law as it affects persons with disabilities. The LCO funded two types of papers. Case Study Papers addressed a central issue related to the law as it affects persons with disabilities by considering how the preliminary principles might be applied in the context of the particular issues in the law as it affects persons with disabilities. Implementation Papers focussed on the practical challenges of implementing laws, policies and programs that both respect the principles and are effective. Six research papers were completed through this Call for Papers, which are listed in Appendix A to this Final Report. The Commissioned Research Papers contributed to the analysis throughout the Final Report, and in some cases form the basis for the extended examples in the Framework.
Transitions Research: A framework for the law as it affects persons with disabilities must be based on an understanding of patterns and issues in that law, something that may be difficult to achieve due to the extent and complexity of the law. There is a very extensive array of laws and policies, federal, provincial and municipal, specifically targeted to persons with disabilities. Further, all laws of general application by definition affect persons with disabilities as well, sometimes differently or disproportionately compared to their peers who are not living with a disability. Finally, the laws as they appear on paper may differ from laws as they are actually implemented, and the law may affect various groups of individuals with disabilities differently.
The LCO’s 2010 community consultations, as well as some key institutional stakeholders, identified transition points as a key issue for the relationship of persons with disabilities with the law. Persons with disabilities generally want to move through their lives in a way that is similar to that experienced by persons who do not identify themselves as having a disability. However, they often find themselves impeded in moving through the standard life course – in transitioning from education to work, from living with parents to independent living, to finding a life partner and starting a family. Some of the barriers to these transitions are legal barriers.
Persons with disabilities may also face barriers at other types of transition points – for example, in moving between various systems. The lives of persons with disabilities are heavily regulated, through elaborate systems of interlocking laws and government policies. However, there is frequently a lack of coordination between the various laws and programs. Two common examples are the movement between social assistance and employment, and between the criminal justice and mental health systems. The law may not treat the individual with a disability as a whole person, so that programs intended to assist persons with disabilities may actually work against each other in a particular case.
A third type of transition point is where individuals move in and out of the status or experience of disability. Some disabilities are episodic – mental health disabilities are a good example. Other disabilities are temporary, or occur later in life. Individuals may have difficulty moving in and out of systems that are intended to assist persons with disabilities, but are based on a model of permanent, stable impairment.
Studying transition points allowed the LCO to understand the operation of the law from the perspective of the lived experience of persons with disabilities, and to approach it in a holistic fashion, as well as offering the opportunity to identify a somewhat representative sampling of the numerous legal issues that shape the lives of persons with disabilities and thereby to identify broader themes that can inform the project more generally.
The LCO therefore examined several transition points reflecting a range of legal issues, types of law, kinds of transitions, social areas and stages in the life course for persons with disabilities. This research forms the foundation of most of the Case Examples that are interwoven throughout this Final Report.
3. Lived Experience and the LCO’s Public Consultations
Public consultations are essential to the law reform process. In addition to providing valuable sources of information not otherwise available, public consultation promotes the LCO values of transparency, accountability, open-mindedness, diversity, inclusiveness and collaboration.
Purposes of Public Consultation: One of the key themes emerging from the very outset of this project was the “implementation gap”, where laws intended to be beneficial for persons with disabilities either fall significantly short of their intended objectives or have unintended negative effects. It was clear that, to understand how the law shapes the lives of persons with disabilities and how they might be better designed or implemented, it would be essential to have a thorough understanding, not only of the laws as designed, but of the laws as they are actually understood and experienced by persons with disabilities. Public consultation was therefore an essential mechanism, not only for ensuring that the principles and the Framework resonated with the values and aspirations of persons with disabilities, but also for understanding how this area of law works in practice. Public consultation was therefore central to the LCO’s research agenda.
Through the LCO’s public consultations, persons with disabilities and the organizations that serve, represent or advocate for them, shared with the LCO a massive amount of information about their lives and their experiences with the law, as well as their frustrations and hopes for the future, and their recommendations for meaningful change. LCO staff were profoundly moved by the stories of hardship and resilience that they heard from persons with disabilities, and the results shaped every aspect of the project. Service providers and government representatives assisted us in understanding the vast and intricate web of laws, programs and policies affecting persons with disabilities and the challenges in providing meaningful and effective services for this group, particularly in the current economic climate.
Principles for the Law as It Affects Persons with Disabilities and the Public Consultation Process: It was essential that, to the degree possible, the LCO’s own project conform to the principles that it has identified for the law as it affects persons with disabilities. This means, in part, that it was essential that the process for developing the Framework
Respect the value of the perspectives and experiences of persons with disabilities;
Understand and incorporate the diversity among persons with disabilities;
Ensure that persons with disabilities have a significant role in the process, and that their voices are heard throughout;
Ensure that the process is inclusively designed and meets the accessibility needs of persons with disabilities;
Protects the privacy and security of those who participate in the process; and
Recognize that persons with disabilities are members of the broader society.
This shaped the role of consultation in the project, as well as the ways in which consultations were carried out.
Stages of Public Consultation: As noted above, in early 2009 the LCO conducted preliminary consultations to assist in shaping the project. A second and much more extensive set of consultations took place in the spring and summer of 2010. At that time, the LCO conducted cross-Ontario public consultations with persons with disabilities, and with organizations that serve, represent or advocate for persons with disabilities. The LCO held seventeen focus groups in five locations across Ontario, including focus groups with Deaf Ontarians, Aboriginal and racialized Ontarians with disabilities, and persons living with mental health disabilities. The LCO also received responses to survey questionnaires from persons with disabilities, and conducted several one-on-one interviews.
In order to organize many of the focus group discussions, the LCO partnered with several organizations. Ethno Racial People with Disabilities Coalition Ontario (ERDCO) partnered with us and provided a co-facilitator to run the session with racialized persons with disabilities in Toronto. Similarly, the Canadian Hearing Society helped find participants for the two sessions with persons who identify as culturally Deaf and those who are deaf, deafened or hard of hearing. In addition, the Thunder Bay Indian Friendship Centre and the N’Amerind Friendship Centre in London found participants and provided support to enable us to speak with Aboriginal Elders for those two specialized focus groups. Without the support of these and other community partners, the LCO would not have been able to reach out as effectively to individuals with disabilities, or to provide appropriate and comfortable settings for discussions.
The LCO aimed to make the consultations as accessible as possible. It therefore ensured that consultations were conducted in accessible facilities and that accommodations such as personal support workers, ASL interpretation and real-time captioning were provided. Communications were made in accessible formats, including Braille and large-print. As well, the LCO reimbursed individual participants for expenses and provided honoraria. Some focus groups were specialized to create a more comfortable, accessible or culturally appropriate atmosphere for participants to share their thoughts and experiences.
While the 2010 consultations were a success overall, and received strong positive feedback from participants, there were some limitations. Because the disability community in Ontario is so diverse, there are many perspectives that we were not able to access during our focus group consultations, either because we were not able to hear from persons with disabilities from particular identity groups or from particular geographical locations. For example, despite significant efforts, the LCO was not able to successfully organize a focus group for francophones with disabilities. Limitations also arose as a result of the time limits for our consultations, stemming from the timeline constraints related to our project.
As well, the use of a focus group format for much of the consultations meant that the LCO heard disproportionately from those who were strong self-advocates and comfortable with speaking in a group setting. Further, it meant that some issues were not fully discussed. For example, concerns regarding stigma and negative attitudes towards parents with disabilities were raised mainly through individual interviews, and there was no discussion in the focus groups regarding sexuality and person with disabilities.
Based upon the results of the 2010 community consultations, the Commissioned Research Papers and the LCO’s internal research, the LCO developed a Consultation Paper which was released in the late summer of 2011. The purpose of the Consultation Paper was to synthesize the results of the research and consultations that had been completed to date, and to identify the key questions to be addressed to develop the proposed Framework.
Following the completion of the Transitions Research and the fall 2011 consultations, the LCO developed an Interim Framework. Given the extent and multiple stages of consultation already undertaken for this project, this consultation stage was relatively short and relied heavily on written submissions and one-on-one interviews. The Interim Framework was revised and this Final Report released based on the feedback received through this final consultation.
D. The Sister Project: The Law as It Affects Older Adults
1. The Project on the Law as It Affects Older Adults
One of the other initial LCO projects approved by the Board of Governors was a project on the law as it affects older adults. The aim of that project was to develop a coherent framework for the law as it affects older persons by articulating a set of principles and questions, rooted in the lived experience of older adults, that could form the basis of a consistent analytical framework for this diverse and rapidly evolving area of the law.
Given the similarity in their aims, the project on the law and older persons and the project on the law and persons with disabilities were considered as “sister projects” and assigned to the same Project Head to ensure consistency in approach, the opportunity to learn from each project aspects that could inform the other, and appropriate consideration of overlapping issues.
Preliminary work on the Older Adults project began in the early spring of 2008 – that is, several months before work commenced on the project on law and persons with disabilities. The projects proceeded in tandem and were completed within a few months of each other. As a result, it has been possible for the two projects to build on each other. For example, because of the areas of intersection between the two projects, in a number of cases, research was applicable to both projects. The laws related to capacity and guardianship, which is of significant importance for both older adults and persons with disabilities, were the basis of a Commissioned Research Paper for both projects. The LCO’s research on transition points for persons with disabilities included research on the transition of Aboriginal older adults into long-term care; this research formed a case example for both projects. Similarly, a number of papers presented at the 2010 Canadian Conference on Elder Law co-hosted by the LCO were of direct relevance to the project on the law and persons with disabilities.
2. The Intersection of Impairment, Disability and Aging
There is an under-examined relationship between impairment, disability and aging. Old age is often conflated with impairment and disability, but the relationship is not so simple.
While it is true that the incidence of certain types of impairments and health and activity limitations increases with age, it is important not to overstate their extent. For most individuals, most of their life span will be spent in good health and without significant activity limitations. In 2003, almost 40 percent of those aged 65 and older considered themselves in good or excellent health. Older persons may also be affected, not by the experience of disability per se, but by the perception that they will inevitably become disabled, and therefore will become a burden, or will be requesting expensive or administratively onerous accommodations or services.
It is important to acknowledge the two ways in which age and disability may intersect. Some persons are born with disabilities, or acquire them during adulthood and age with their disabilities. Others live without disabilities throughout childhood, youth and much of their adulthood, and acquire disabilities only as they enter old age. Members of these two groups will often have profoundly different life experiences, and will therefore experience their impairments quite differently. A person who is born non-hearing and who becomes part of the cultural Deaf community will have his or her social, educational and employment experiences significantly shaped by that fact. A person who is born hearing and experiences a hearing loss in old age may have the same degree of hearing loss as a culturally Deaf person, but will have been shaped by a different life experience that has affected social networks, self conceptions and frequently access to education and employment. These two hypothetical individuals with similar impairments will require different types of services and supports in old age, and will have different views of their relationship to mainstream society. The differences are highlighted by the identifying terminology distinguishing between Deaf, deafened, or hard of hearing individuals.
There are similarities in the ways in which older persons and persons with disabilities are situated in society, particularly as both groups are largely excluded from the labour market, and therefore experience structural dependency; as a result, members of both communities may not be viewed as “adults”. Both groups, being associated with impaired bodies and incapacity, evoke fear of vulnerability and death, and therefore are subject to social distancing. Persons with disabilities and older persons frequently experience social and locational segregation, living in specialized residential institutions, an experience that some have characterized as a kind of “social death”.
However, there are some significant differences between the perceptions of younger persons with disabilities and those who acquire disabilities in older age. While impairment at birth or in youth is commonly characterized as aberrant, impairment and activity limitations in older age are commonly understood as “normal”, even a defining characteristic of this stage of life. As a result, older persons with impairments are often not viewed as “disabled” in the same way that younger persons with similar impairments are. The onset of impairment, along with withdrawal from the workforce, may be the most important social markers of transition to “old age”. Impairment in older age may therefore have a different impact on identity than it would have at earlier life stages.
Considerable advances have been made in both the disability and the older people’s movements in recent decades. Interestingly, however, older persons are under-represented in the disability movement, especially considering the broad experience and impact of disability on older persons, and persons with disabilities have also been marginalized in some new ways of thinking about old age. As one author notes,
There is, then, a sense in which the political strategy of the [disability] movement has sought to distance disability debates from negative associations with old age and dependency by emphasizing adult-centred values and issues. Similarly, older people’s movements and movements for the Third Age have advocated ‘active ageing’ as a way to distance their claims from the negative imagery of disability and dependency.
In this way, the strategy of both older people’s movements and disabled people’s movements has been to articulate claims for recognition of adult status and citizenship by distancing their struggles from negative associations with the other. These parallel claims may well be benefiting those at the margins of inclusion (i.e., younger disabled people and older adults in their fifties and sixties) by allowing them to liberate themselves from the imagery of frailty, dependence and burden so often attached to very old people with significant impairments.
These strategies, however, run the risk of further marginalizing a very disadvantaged group: persons of advanced older age with significant impairments.
This relationship between aging, impairment and disability has had a number of implications for the development of the LCO’s two projects.
There are significant parallels between the experiences of older adults with the law and those of persons with disabilities (considered as distinct groups). Both groups incorporate considerable diversity despite general assumptions of homogeneity. Both experience a range of negative attitudes and stigma, and have a disproportionate experience of disadvantage and marginalization. As well, both groups are subjects of extensive laws and bureaucracies intended to address their distinctive experiences, and so share the experience of dealing with the complexities, fragmentation and unintended barriers associated with such laws, programs and policies. There are also, of course, significant differences between the two groups. While both groups are subject to stigmas and stereotypes, there are significant differences in the particular attitudes and barriers experienced by each group. The effect of the life course on circumstances and identities cannot be ignored – particularly for those older adults who have not experienced discrimination or marginalization until the onset of older age. The Frameworks therefore must take careful account of both the similarities and the differences, and resist the common tendency to conflate the two.
At the same time, the Frameworks must be able to address those who fall within both groups – those who have aged with disabilities and those who have aged into disabilities – as well as recognizing the differences between these two experiences.
Finally, the Frameworks must reject both ableism and ageism, as well as looking for opportunities, where appropriate, to apply novel or successful concepts or approaches from one group to the other.
E. Key Approaches and Concepts for the Development of the Framework
1. Starting Points for Developing the Framework
In developing the Framework, the LCO has employed a number of starting points, as briefly described below.
The LCO’s Mandate and Access to Justice: The LCO’s mandate is, in part, to recommend law reform measures to enhance the relevance, effectiveness and accessibility of the law, and to improve the administration of justice through clarification and simplification of the law: in short, to increase access to justice. In developing a framework for the law as it affects persons with disabilities, the LCO therefore considered issues not only of consistency, clarity and efficiency, but also such questions as the following:
Does the law address the issues of importance to this group? Does it do so in ways that are meaningful?
Does the law effectively address the needs and circumstances of individuals with disabilities?
What principles and approaches can best ensure that the law is effective in addressing the needs and circumstances of these individuals?
Where the law is ineffective, do the shortfalls result from the design of the law, or from its implementation?
What do “access to the law” and “access to justice” mean for persons with disabilities? What barriers do persons with disabilities experience in accessing the law? What are best practices for promoting access to the law for persons with disabilities?
Building on What Has Been Done: There have been many important initiatives relevant to the law as it affects persons with disabilities, some applying to persons with disabilities as a whole and others targeted to particular groups. The LCO has aimed to incorporate and, where possible, synthesize the insights and frameworks employed by these initiatives as a foundation for this project. These include the Ontario Public Service’s Inclusion Lens, the Health Equity Impact Assessment Tool (HEIA tool) developed by the Ontario Ministry of Health and Long-Term Care, the Ontario Human Rights Commission’s Policy and Guidelines on Disability and the Duty to Accommodate, the work of the Mental Health Commission of Canada and in particular the recently developed equity lens, and Disability Rights Promotion International’s disability rights monitoring tools, among others.
A Holistic and Contextual Approach: As the LCO’s Strategic Plan outlines, the LCO undertakes both relatively narrow, focused and technical projects as well as large, socially oriented projects that require multi/interdisciplinary approaches and broad consultation and collaboration. This project falls into the second category.
In understanding the experiences of persons with disabilities with the law, the LCO has considered not only relevant legal research, but also findings from the disciplines of social science, critical disability studies and public policy. The LCO has sought to understand the social and economic contexts in which persons with disabilities encounter and experience the law, and to find approaches which will enable law-makers and policy-makers to take these circumstances into account in designing and implementing laws and policies that may affect this group. This includes consideration of a life course approach to the experiences of persons with disabilities, as described in section 2 below.
Principles-Based Approach: As identified in the preliminary consultation on this project and supported by the response that was received, the LCO has based the foundations of this project on a set of principles. Principles can provide a normative framework for the law and identify the goals which laws and policies ought to seek to achieve with respect to persons with disabilities. A framework that is based on principles can provide guidance while remaining flexible and applicable in changing circumstances. Identification of these principles, while important, is a starting point rather than an end point. The difficult task remaining is to develop a nuanced understanding of what these principles could and should mean in the context of the lives of individuals with disabilities, and provide a practical guide to their implementation in a legal setting.
2. Key Concepts in Developing the Framework
In developing this project, the LCO reviewed a wide range of work in the areas of social science and critical disability studies, in order to identify lenses or concepts that would support this project. Identified below are some of the key concepts which the LCO adopted and which have fundamentally shaped the way in which the project has developed. These concepts are further explored throughout this Final Report.
“Ableism”: A 2004 Environics Research Group Report on Canadian attitudes towards disability-related issues found that while most like to think of themselves as being open to the participation of persons with disabilities in their day-to-day activities, many expressed significant discomfort with some aspects of relating to persons with disabilities, particularly those whose disabilities affect their communications, or where the disability involved “disfigurement” or behaviour that was not considered “normal”. Such negative attitudes and stigma form part of the basis of what some have termed “ableism”.
“Ableism” is a belief system, analogous to racism, sexism, or ageism, that sees persons with disabilities as being less worthy of respect and consideration, less able to contribute and participate, and of less inherent value than others. Ableism may be conscious or unconscious, and may be embedded in institutions, systems or the broader culture of a society. Because attitudes and stereotypes may take different forms with different disabilities, ableism may manifest differently with respect to different types of disabilities, such as mental health, sensory or intellectual disabilities.
Ableism may manifest in negative attitudes towards persons with disabilities, discomfort in their presence and efforts to avoid them. These types of negative attitudes may have profound effects on the lives of persons with disabilities, not only in their social experiences, but in efforts to find and maintain paid employment, obtain and use services, and find adequate housing. Negative attitudes and stigma associated with persons with disabilities may create significant barriers to equality, dignity and participation, perhaps greater barriers than the actual impairment itself. These attitudes may affect the development and implementation of laws and policies. An example is the persistent use of zoning bylaws and definitions to exclude supportive housing for persons with psychiatric or intellectual disabilities from particular neighbourhoods, or to create additional barriers and requirements in the approval processes.
Ableism may also result in a failure to address the real needs and circumstances of persons with disabilities. The Ontario Bar Association (OBA) has stated that
The key change that must take place, therefore, is attitudinal or philosophical. Legislators have to act on the assumption that assistance, support and protection necessary to permit persons with disabilities to achieve equality and full participation in society are required as a right and are not offered as a privilege. The assumption has to be that society as a whole will benefit when persons with disabilities are encouraged and allowed to participate fully in society at all levels.
Manifestations of ableism in the law are discussed in Chapter II.D.2 of this Report.
“Disability”: There exists an extensive literature surrounding what we mean by the term “disability”. No single definition of “disability” can capture the full range of the experiences of persons with disabilities, and understandings continue to evolve and be debated. The Supreme Court of Canada has stated that in interpreting “disability”,
…[A] multi-dimensional approach that includes a socio-political dimension is particularly appropriate. By placing the emphasis on human dignity, respect, and the right to equality rather than a simple biomedical condition, this approach recognizes that the attitudes of society and its members often contribute to the idea or perception of a “handicap”.
That is, definitions of disability must recognize the diversity of experience that results from the interaction of an individual with his or her environment. For example, the particular context – such as employment or housing – will matter, as well as the way in which stereotyping affects the perception of an impairment. Definitions must relate to particular contexts and purposes, and a definition that is of assistance in considering one aspect of the experience of disability may not be illuminating in another.
In its work, the LCO has taken a broad approach to the definition of disability, including both the experience of socially constructed (or environmental) barriers and the embodied aspects of the experience of disability. In developing its Framework, the LCO has considered the experiences of persons with permanent disabilities, intermittent and temporary ones, disabilities that are present at birth and those that develop late in life, and disabilities that manifest in physical, sensory, mental, intellectual, communications or learning impairments and perceived disabilities, as well as the experience of multiple disabilities. We have been guided by what we hear from persons with disabilities themselves regarding their experiences with the law.
A note on terminology: There is ongoing development and debate in the language used to discuss persons with particular disabilities and their experiences. The LCO recognizes that there is a range of views about the most appropriate language. The LCO does not intend its use of particular terms to be construed as definitive, and defers to persons with disabilities themselves as to the most appropriate language.
“Barrier”: Persons with disabilities may encounter a wide range of barriers to the achievement of substantive equality, some of which are explored in Chapter II of this Final Report. As is touched on in the definition of “disability” above, while popular understandings of the experience of disability tend to focus on the impairment itself as the source of barriers, an approach to the experience of disability that takes into account its social and environmental dimensions can provide a deeper understanding of the types of barriers that persons with disabilities experience. These may include physical barriers resulting from the failure to design the built environment in a way that takes persons with disabilities into account, informational and communications barriers, or barriers that are embedded in laws or in written or unwritten policies and practices. Barriers may also be found in attitudes that dismiss, devalue or render invisible persons with disabilities and may be manifested directly in poor treatment in providing services or interpreting and applying laws and policies, or more subtly, for example in decisions about which services to provide or how those will be delivered. There may also be less obvious barriers resulting from the effects of life-long disadvantage for persons with disabilities, for example, in the effects of lower educational or literacy rates on the ability to access services, employment, or other opportunities.
“Diversity”: The concept of diversity was important to the development of the project, both in understanding the social aspects of the experience of disability, and in avoiding the tendency to homogenize that experience.
The implications of a focus on diversity for this project are explored at greater depth in Chapter III.C.2 of this Report. Briefly, humans are infinitely variable, along many measures of ability. Inevitably, there is an element of arbitrariness and social construction to the determination of what differences are considered to be impairments, and which impairments will amount to a “disability” and will be excluded from “normalcy”. An understanding of this dynamic can assist in changing the parameters of the law and policy on disability-related issues, and move towards a more inclusive approach, as described below.
Further, the identification of an individual as “disabled” often has the effect of obscuring all other aspects of an individual’s identity, whether in characteristics such as gender, sexual orientation, racialization or age, or their roles such as “employee”, “parent” or “citizen”.
As well, the experiences of individuals will differ widely depending on whether their disability is physical, sensory, psychiatric, learning, intellectual, or other. As was noted in the Government of Canada Report, Advancing the Inclusion of Persons with Disabilities, “All people with disabilities have common experiences of exclusion, but each type of disability may give rise to unique needs.” Needs are affected by the degree of disablement as well as the type. Experiences are also affected by social attitudes and barriers affecting the various types of disabilities. For example, persons with mental health or intellectual disabilities face particularly heavy stigma. Others may face barriers in transportation or educational systems, for example, that make participation in society very difficult, despite relatively mild levels of impairment.
“Inclusive Design”: Inclusive (or universal) design is the development of environments, products and policies to “be usable by all people, to the greatest extent possible, without the need for adaptation or specialized design. The intent of inclusive design is to simplify life for everyone by making products, communications, and the built environment more usable by as many people as possible at little or no extra cost.” Inclusive design is intended to benefit people of all ages and abilities.
The universalism model posits that all people exist along a continuum of abilities and that people’s abilities will vary along this continuum throughout their lives. This acknowledgement of the near universality of impairment highlights the way in which the line between disability and non-disability is socially and politically constructed. This approach demands a widening of the range of what is considered “normal” in the context of human abilities, with the result being that more flexibility and adaptation is required in social, political and physical structures. To put this principle into action, inclusive design with a concomitant commitment to accessibility, is a key strategy to ensure the maximum inclusion of all people with their infinitely varying abilities.
It is important to emphasize the differences between inclusive design and a formal equality which simply treats ”likes alike” and those who are not “alike”, differently (that is, it treats everyone in the same way). While formal equality is not concerned with addressing differences that may otherwise be irrelevant, inclusive design actively takes into account difference and incorporates it into a broader mainstream.
There are, of course, limits to the ability of universalism and inclusive design to remove or prevent barriers. In some cases, individual accommodation will be required in order to ensure equal access to a building, information or a program. That is, inclusive design will reduce the need for individualized accommodations, but will not end it. On a broader scale, there are situations where it makes sense to have targeted programs to meet particular needs of persons with disabilities, rather than including persons with disabilities in a broader, inclusively designed program. There are also situations where competing needs make it challenging to identify inclusive design solutions. As a simple example, curb cuts, which improve access for persons with mobility disabilities and families pushing strollers, increase difficulties for persons with low vision who require a demarcation of the end of the sidewalk. However, human rights law has articulated as a general principle the importance of beginning with an inclusive approach when designing policies, programs and services, and adopting specialized approaches only where inclusive design approaches are not effective for progressing towards substantive equality.
“Law”: There are laws whose provisions are problematic in terms of their effects on persons with disabilities, whether because they incorporate ableist attitudes into their substance or because they fail to take into account the realities of existence for those with disabilities. In many cases, however, the law is sound on paper, but problematic in practice. Laws, policies and practices that are in theory neutral or even intended to benefit individuals living with disabilities may fall short of their goal or have unintended negative consequences. There are many reasons for this, including negative attitudes on the part of those charged with implementing the law or policy, failure to provide disability-related accommodations for accessing programs or services, adversarial approaches to program implementation, resource limitations, or lack of accountability, monitoring and transparency.
This points us to the importance of adopting a broad understanding of “the law” for this project. A close analysis of the language of statutes and policies is important, but it is equally important to develop a strong understanding of the effects of the law as implemented. For this reason, the LCO has adopted a broad definition of “the law” for this project, as including not only statutes and regulations, but also the policies through which they are applied, and the strategies and practices through which they are implemented.
Of course, to understand the effects of the law, we must hear directly from those affected by it – both those charged with implementing it, and the persons whose lives are shaped by it. In this way, the necessity of addressing the “implementation gap” points us again to the importance of including and respecting persons with disabilities in the process of developing and reforming the law.
Life Course”: The project has adopted a life course approach to disability-related issues, as a means of better understanding the circumstances of persons with disabilities and the barriers that they face in a range of social areas. A life course approach is based on the understanding that the life experiences of each of us will profoundly shape the resources and perspectives we bring to each stage of life. Barriers or opportunities experienced at one stage of life will have consequences that will reverberate throughout the course of life. Situating this analysis in a legal context, the life course of an individual will shape the way in which that individual encounters a particular law; in return, laws will significantly shape the life course of individuals. That is, the impact of laws must be understood in the context of every stage of the life of persons with disabilities, from birth to death, and how these stages relate to each other.
A life course approach can help us to better understand the socio-economic barriers faced by persons with disabilities. Disability-related barriers to education, for example, will have a profound effect on the ability of individuals to obtain appropriate and remunerative employment and to access and employ information about rights and responsibilities, and will do so throughout life. It also provides a means of analyzing how differences based on gender, sexual orientation, racialization, or other aspects of identity may shape the experiences of persons with disabilities.
Thinking about the life course as a whole forces us to consider social issues as they affect people of all generations and throughout the life cycle (including birth and death). This is important when we consider disability issues, since it avoids oversimplification of the collective experience of people with disabilities and the marginalization of issues affecting underrepresented groups (e.g., children living with disabilities and older people). The life course can be considered as both an individual and a social construct. But the social approach is particularly useful in highlighting how societies and social institutions reproduce idealized notions of what it means to live a ‘normal’ life.
The adoption of a life course approach significantly influenced the decision to undertake research on transitions along the life course for persons with disabilities and how those are shaped or constrained by law.
“Substantive Equality”: This project has been centred around substantive equality as a key value and goal for the law as it affects persons with disabilities. This concept has profoundly shaped all aspects of this project. The LCO’s understanding of substantive equality is dealt with at greater length in Chapter III. For the purposes of this Chapter, it suffices to note that substantive equality, as contrasted with “formal equality”, goes beyond simple non-discrimination. It includes values of dignity and worth, the opportunity to participate, having one’s needs met, and the opportunity to live in a society whose structures and organizations include them. It recognizes and responds to societal patterns that result in different outcomes on the basis of irrelevant characteristics, as well as real differences that inappropriately disadvantage members of a particular group (such as women’s capacity for reproduction). Substantive equality may require differential treatment in order to fulfill these values.
3. Key Elements for a Framework
Based on the results of the multiple consultation stages for this project, as well as the experiences of the LCO in developing the Framework for the Law as It Affects Older Adults, the LCO identified a number of essential characteristics for the Framework for the Law as It Affects Persons with Disabilities.
First, given the multiple inter-relationships between the principles themselves, and between the principles and the lived experiences of persons with disabilities, it must be holistic. Rather than dealing separately with each of the principles, or segregating the principles from the circumstances of persons with disabilities, the framework must bring the elements together, so that the principles are meaningfully grounded in the circumstances of persons with disabilities and in the current legal landscape.
Secondly, given the breadth of the experiences of persons with disabilities and the many different ways in which they must interact with the law, it must be broad and flexible enough to apply across contexts. It must have the capacity to address the experiences of persons with disabilities with the law in their sexuality, education, employment, living environments, family relationships, financial affairs and other areas. It must be capable of meaningful application both to laws directly targeted to persons with disabilities, and to those of general application that affect persons with disabilities differently.
Thirdly, it must reflect the diversity of experience and identity among persons with disabilities. This means that the Framework must be able to encompass not only a wide range of disabilities, but also different ethnic and cultural identities, divergences in the experiences of men and women, and diversity in sexual orientation, citizenship status, family relationships and age. As with the population at large, persons with disabilities may identify with a number of different communities at the same time. This diversity means that the law may affect persons with disabilities in diverse and sometimes inconsistent ways.
Fourthly, it must be sufficiently specific and practical to provide meaningful guidelines for the development of law and government policy, and to help develop processes to be implemented by the private sector to make the law effective. It must assist users in concretely understanding the implications of the principles for the development and evaluation of laws, policies and practices.
Fifthly, given the importance of participation and inclusion for persons with disabilities, it must focus attention on both the process of development and evaluation and on the outcomes. It must apply equally to the development of new laws, policies and programs, and to the evaluation and reform of existing ones.
Finally, it must be useable. Its structure, layout and language must be sufficiently simple and clear to encourage its easy use as a practical tool. Reference to the other documents for further information and guidance must be made straightforward and simple.
F. This Report and Framework
The Framework for the Law as It Affects Persons with Disabilities, the culmination of this Project, is included as Chapter IV of this Final Report. It is also available as a stand-alone document, in hard copy and on the LCO’s website. The Framework is intended to guide the development and evaluation of laws, policies and practices to ensure that the circumstances and experiences of persons with disabilities are taken into account, and that laws, policies and practices promote positive outcomes for these members of society. It is composed of principles and factors to take into account in applying the principles, and uses a step-by-step approach. It has been developed for use by
policy-makers, courts and legislators;
advocacy organizations and community groups that work with persons with disabilities and deal with issues affecting them; and
public and private actors that develop or administer policies or programs that may affect persons with disabilities.
The Framework is intended to be applicable across all laws and policies, including both those that apply specifically to those with disabilities and those that will affect persons with disabilities as members of the general population. As it is general in this sense, some may find it helpful to adapt it to their own particular area of law or policy. It should be noted that, given the breadth and diversity of the law as it affects persons with disabilities, not all sections of the Framework will be relevant for every law, policy or practice.
It is not the purpose of the Framework to point to simple, definitive answers to all of the difficult issues that may arise in developing laws, policies and practices that may affect individuals with disabilities. The law and the circumstances of persons with disabilities are both broad and diverse. The nature of disability and our understanding of its personal and societal implications are constantly evolving. Rather, the Framework is intended to assist law and policy-makers to
consider and apply a consistent set of principles in developing laws, policies and practices that may affect those living with disabilities;
ensure that potential barriers and sources of ableism in laws and policies are identified and addressed; and
take into account key aspects of the relationships of persons with disabilities with the law.
This Final Report sets out the key research and analysis which forms the basis for the Framework, and is the product of extensive research and consultation, as outlined above.
The second Chapter of the Final Report gives a brief overview of what is meant by “the law as it affects persons with disabilities”; sets out the foundational documents for this area of the law; explores the context in which persons with disabilities encounter the law; and identifies key themes in the law as it affects persons with disabilities.
The third Chapter details the rationale for a principles-based approach to the Framework, identifies the key sources for the principles, outlines definitions and implications of the principles that are the basis for the Framework, and provides some analysis of the challenges in applying the principles to the law as it affects persons with disabilities.
The fourth Chapter sets out the Framework itself.
The fifth Chapter explores the application of the Framework through an analysis of the law related to community supports services, and particularly attendant services, for persons with disabilities.
Finally, the brief sixth and seventh Chapters of the Final Report set out recommendations for use of the Framework and some next steps for the LCO.
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