As a starting point for developing an evaluative framework for the law as it affects persons with disabilities, it is important to develop a broad understanding of the current relationship of persons with disabilities with the law.
What Do We Mean By “Law”?
The term “law” as it is used for this project includes both statutes and regulations. It also includes the policies through which statutes and regulations are applied, and the strategies through which statutory provisions, regulations and policies are implemented. As such, the implementation of laws is as important as their substance. Laws may be beneficial in intention and on paper, but in practice fall short of their goals or even have negative effects.
Ontario has a very wide array of laws that may affect persons with disabilities. In understanding the law as it affects persons with disabilities, it is helpful to think of the law in four major categories:
Laws of general application: In addition to the myriad of laws that explicitly reference “disability”, “handicap” or terms related to mental “capacity”, all of the laws of general application that affect the populace at large will also affect persons with disabilities. This includes a very wide range of laws, such as those related to family creation and dissolution, consumer protection, residential tenancies and zoning, and protection of privacy. Because the experiences of persons with disabilities may differ from those of their non-disabled peers, whether because of their impairments or because of socially-constructed barriers, laws of general application may have a different or greater impact on persons with disabilities than on others.
Laws promoting the removal of barriers for persons with disabilities: Laws such as the Accessibility for Ontarians with Disabilities Act, the Ontarians with Disabilities Act, and the Ontario Human Rights Code are unique in that they have as central roles the recognition of persons with disabilities as a group that has experienced disadvantage, and the removal of barriers in order to achieve full equality and participation for persons with disabilities.
Laws that provide access to benefits, supports and accommodations for persons with disabilities: This is the largest category of laws directly targeted to persons with disabilities. These laws aim to recognize the particular circumstances of persons with disabilities and to provide access to programs or protections aimed at ameliorating disadvantage, providing supports or enhancing opportunities. Some of these have disability-related needs as their core focus, while others are directed to the population at large but provide specific accommodations or supports for persons with disabilities.
Laws that restrict the roles, activities or decisions of persons with disabilities: Laws not infrequently identify specific capacities or abilities – most often, legal decision-making capacity – as a requirement for participation in various roles or decisions. Frequently this restricts roles or opportunities for persons with psychiatric, cognitive or intellectual disabilities.
These laws differ considerably in their subject matters, approaches and forms, but the LCO’s research and public consultations identified a number of concerns with the law as it affects persons with disabilities that apply across these categories and types. These are explored below.
B. Taking Persons with Disabilities Into Account
Well, the laws are written by able-bodied people. You know, they don’t sort of vet them. I guess they have some sort of experts, but you know, I worked for the Ontario government for a long time and I saw the policy. I tried to point out where the barriers were, actually in the Cabinet Submissions process in the first place, it’s like the tail wagging the dog. We’re too small of a group to really take that seriously. You know, I think that it’s just peppered throughout all the legislation, it’s really coming from that perspective.
LCO Focus Group, Toronto, May 12, 2010
During the LCO’s Spring 2010 Public Consultations, individuals with disabilities consistently raised concerns regarding the lack of a consistent formal mechanism to provide a voice for persons with disabilities in the development of laws, policies and programs that affect them.
[I]t’s so important that we have organizations run by people with disabilities or who advocate, or that you have anything that you are doing about people with disabilities to have people with disabilities at the table – because, otherwise, it’s just going to be, you know, the lens that people use will be the one that they are most familiar with. And people are familiar with an able-bodied or, you know, able lens, they are going to assume that you can’t do something as opposed to what your abilities are, and how inventive people are.
LCO Focus Group, Toronto, May 12, 2010
The concerns, experiences and perspectives of persons with disabilities are not adequately reflected in laws, policies and practices, whether laws of general application or those specifically focused on persons with disabilities. As a result, laws may not adequately or appropriately address the circumstances of persons with disabilities.
What Do We Mean By “Disability”?
No single definition of “disability” can capture the complexity of the experiences of persons with disabilities. 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”. [Quebec (Commission des droits de la personne et des droits de la jeunesse) v. Montréal (City), 2000 SCC 27,  1 S.C.R. 665, para. 77]
That is, definitions of disability must recognize the complexity 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 to date, the LCO has taken a broad approach to the definition of disability, including both the experience of socially constructed barriers and the embodied aspects of the experience of disability. In developing its Framework, the LCO will consider 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, development or learning impairments and perceived disabilities, as well as the experience of multiple disabilities. We will be guided by what we hear from persons with disabilities themselves regarding their experiences with the law.
Considering the needs and experiences of persons with disabilities: As an example, persons with disabilities may face extra difficulties beyond those faced by the general population in finding information about their legal rights and responsibilities, because public information and education strategies may not take the needs and circumstances of persons with disabilities into account. At the simplest level, information may not be provided in disability-accessible formats. Common examples of this are the use of pdf files, which are inaccessible to many screenreaders, and the failure to provide American Sign Language interpretation for those who are culturally Deaf.
I had to take a landlord through the tenants’ rights acts and through their independent tribunal, which is a quasi-legal action which didn’t make a lot of sense, but the starting point was access to the forms-access to the forms that every sighted person can pick up. I can’t pick them up and read them, I need assistance. If those forms are available online, again, is it online, the screen reading program the blind and the seeing-impaired people use to access that information. Access can take many forms, but for me as the visually impaired person, the print is a problem again. For those of us that have literacy problems, again, they can see the print, it doesn’t make sense, are the words jumbled up when they read it, is there an easier way, or is there an aid or assistant that can perhaps assist with the paper work involved in taking an action. These sorts of facts are things that I think are important for everybody.
LCO Focus Group, Owen Sound, May 31, 2010
Individuals with Disabilities
Communication strategies may also fail to take into account that lower income levels among persons with disabilities may reduce access to technology and thereby to information provided only via the internet, and that barriers in education may leave persons with disabilities with lower literacy levels and therefore greater difficulties dealing with complex print-only information. During the consultations, many persons with disabilities emphasized that the people who most need information are likely to be those who are in crisis, and therefore less able to jump through hoops to find information. For example, persons who have mental health disabilities may be unable to advocate for themselves within the employment, housing, mental health or criminal justice systems just when they most need assistance.
There are people who have the ability to go after these things and research them; then, there’s the issue of understanding it and how to implement it. I don’t understand why there isn’t advocacy available in the community […] to help people in these processes and how to bring their rights challenges forward. That’s a huge issue.
LCO Focus Group, Toronto, May 13, 2010
Taking institutional and systemic barriers into account: As well, even where the needs of persons with disabilities are taken into account the focus is often mainly on the impairment, rather than on the full experience of persons with disabilities in their social context. Persons with disabilities face a multitude of institutional or systemic barriers. For example, a shortage of supportive housing options, paired with sometimes Kafka-esque application protocols, means that finding an acceptable place to live can be difficult and sometimes impossible. Endemic shortages of adequately skilled sign-language interpreters create barriers for Deaf individuals in every area of life, from accessing education, to pursuing their legal rights in court, to obtaining health care or basic services, so that even the simplest activity becomes a monumental endeavour. Cumbersome processes for accessing accommodations and supports in public education, together with complex power dynamics create challenges for parents attempting to navigate these systems.
Taking the accumulation of barriers over the life course into account: Persons with disabilities, whether as a result of their environments, their impairments or in most cases a combination of the two, tend to have lower socio-economic status than their non-disabled peers. On average, persons with disabilities live with lower incomes, have lower levels of education, and have a greater exposure to violence and victimization than the average. This is particularly true for certain groups of persons with disabilities, such as women and Aboriginal individuals. Disadvantages may accumulate throughout life. For example, a person who experiences barriers in education due to a disability will have lower levels of literacy and of educational attainment throughout life, resulting in greater difficulty in entering and remaining in the workforce, and therefore in maintaining stable income levels and adequate housing. Lower socio-economic status may itself create barriers to accessing and benefiting the law for persons with disabilities, which may not be taken into account.
Taking the diversity of persons with disabilities into account: Persons with disabilities are commonly viewed as a homogenous group, mainly defined by their impairments. This obscures the enormous diversity of the disability community. The experience of disability will differ considerably depending on the nature of the impairment: while the experience of exclusion and marginalization may be common, needs and experiences may be unique. The impact of a disability may also differ depending on whether an individual is living in an urban area where access to supports and services may be greater, or in a remote or rural area; whether the individual has a supportive family and community surrounding him or her; his or her socio-economic status; and other factors. That is, individual lives, needs and experiences will differ widely even among persons with the same impairments. As well, there has been considerable scholarship about how the experiences of disability may differ based on gender, racialization, sexual orientation or other aspects of a person’s identity. Women with disabilities, for example, have special concerns regarding reproduction and parenting. Aboriginal persons with disabilities may have difficulty finding accessible support services that are sensitive to their culture and history.
Unfortunately, there is a tendency to carve off different pieces of our identities. So, you know, my experience has been that there’s a lot disability organizations that don’t speak to issues around social location or multiple identities. So, they don’t look at issues for racialized communities, they don’t look at issues for queer communities within the disability community. And then those organizations that really do have a level of expertise around the complexities within the LGBT community, within racialized communities, don’t often think about people with disabilities coming into their services.
LCO Focus Group, Toronto, May 11, 2010
Making persons with disabilities visible: It has been suggested that, given the persistent marginalization and exclusion of persons with disabilities from the public sphere, the disability rights movement might be conceived of as a “visibility project”:
To sum up, the relative or absolute invisibility of persons with disabilities has meant that the legal structures created to advance private freedom (protection against the abuse of power) and public freedom (participation in the mainstream) have either not been applied or have been applied with less rigour in the case of persons with disabilities.
This has produced a category of person who, while being dependent on the public sphere for survival, lacks access to or influence over public policy. Such persons are denied full admission to public power and full control over their individual destiny. They remain outside the mainstream of society. This lack of presence – or invisibility – serves to reinforce stereotypical assumption about persons with disabilities. It encourages a lack of respect for people with disabilities as rights holders on an equal footing with others.
That is, it is important for persons with disabilities, in all of their individuality and diversity, to be recognized as individuals whose experiences are important and whose perspectives are valued, and for them to be able to actively participate in the development of the law. Without that recognition and participation, laws that appear neutral or that are intended to benefit persons with disabilities may actually have a negative effect on their equality.
TOWARDS A FRAMEWORK: YOUR FEEDBACK
How might the voice of persons with disabilities be better incorporated into the development and application of laws and policies?
What should law and policy makers know about the needs and circumstances of persons with disabilities in developing and reviewing laws, policies and practices?
How can the law meaningfully incorporate the diversity of experience and circumstance among persons with disabilities?
C. Ableism and the Law
This sort of underlying suspicion about people who are poor with disabilities – I have not met one person with disability who does not want to work, and they will attend Tribunals and will exaggerate what they can do because they have pride, because they have dignity, because they don’t want, you know, to be looked down on with pity and charity, which is what the medical model engages you with. They don’t get ODSP because they are people who do not want to do what L sort of suggested: exaggerate their symptoms, they will undermine themselves because of their pride and dignity.
LCO Focus Group, Toronto, May 11, 2010
There is a long history in Canada of negative attitudes towards persons with disabilities. Manifestations of ableism include involuntary institutionalization, forced birth control and sterilization, segregation away from the mainstream of the population and denial of basic rights. While attitudes towards disability have evolved, a recent Environics Research Group Report on Canadian attitudes towards disability-related issues found that while most people 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”.
What Do We Mean By “Ableism”?
Ableism may be defined as a belief system, analogous to racism, sexism or ageism, that sees persons with disabilities as being less worth 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.
Stigma and stereotypes: There are specific stereotypes and stigmas associated with particular disabilities. For example, during the LCO’s consultations, many persons with mental health disabilities, particularly those who have been homeless, shared experiences which demonstrated that they had been subject to heavy judgment and negative assumptions when dealing with legal systems. These attitudes may contribute to the criminalization of persons with mental health disabilities, an issue of great concern to many participants.
Paternalism: Responses to disability have often been marked by paternalism, the tendency to remove decision-making from persons with disabilities “for their own good”. This has been particularly marked for persons with intellectual or psycho-social disabilities.
[M]any people with more significant intellectual, cognitive and psychosocial disabilities face substantial or total restrictions in making their own decisions. They often encounter others who presume they are unable to guide their own lives, are people who need to be ‘fixed’, or protected, and who limit or completely restrict the scope of their decision making. Many people are physically isolated or socially and economically excluded and therefore without meaningful choices or the opportunity to develop a vision and direction for their own lives, and to make their own decisions. Service provision in the disability and older adult sectors is often based on charity and protection models, and an assumption that because people need supports and care, others should make decisions on their behalf. Often service providers also require that they are provided decision making authority on behalf of those they are supporting so they can more efficiently manage the range of individual decisions related to care, medications, activities, etc.
Disability and low-income: During the Consultations, many participants talked about the suspicion and often contempt with which persons with disabilities are treated when seeking services and supports. Services which are designed to assist persons with disabilities in meeting their basic needs or improving their autonomy, independence and participation may in practice be implemented through an adversarial mindset, which assumes that those seeking services are attempting to game the system, or obtain benefits to which they are not entitled. This is particularly the case for persons with disabilities who are also poor.
Ableism in the design and implementation of the law: Ableism may affect the design of laws and policies and may be incorporated into their substance. For example, capacity and guardianship laws have been subjected to persistent criticism on the basis that they are founded in ableist notions about the abilities and worth of persons with intellectual disabilities. Similarly, there is ongoing controversy regarding a number of aspects of mental health law. Ableism may also affect how laws are implemented by justice system workers, service providers and others. For example, parents with disabilities have expressed concerns that negative assumptions may lead to increased scrutiny and intervention by the child welfare system.
There was this fear of the health care profession calling CAS due to misperceptions and a lack of understanding of the independent living model… I planned the birth of my daughter around this fear. Initially, I had a fear of being in hospital with the baby and them calling CAS. .. CAS is a real threat – the fears of parents with disabilities are real. Two months before I gave birth, at the same hospital a newborn baby was taken away right at birth from a blind mother. The perception of what a parent is creates that fear in our society.
The impact of ableism on persons with disabilities is a reality that must be taken into account in the design of laws, programs and policies.
TOWARDS A FRAMEWORK: YOUR FEEDBACK
How can ableism in the substance of laws and policies be identified?
How do stereotypes and negative attitudes towards persons with disabilities influence the design of laws?
How can ableism in the implementation of laws and policies be prevented?
How can government and other service providers ensure that persons with disabilities are treated with respect when seeking services or assistance?
D. Complexity, Overlap and Silos
What we know is that the experience of individuals is that the system is made such that each little box has its own criteria to provide services to individuals with disabilities. You go from each little box to the next, and you repeat your history and then there’s another criteria that bounces you out of that particular service and then you’re off to the next one, and you repeat your history and then you . . . that is what they face, day after day, year after year. This year, I get support from whatever, oops, and it’s not there anymore. Off I go to something else and then I get thrown out again. There needs to be better coordination between all of these services, all of these programs, and the law needs to make it happen so that it’s easier to get access.
LCO Focus Groups, Ottawa, June 15, 2010
Organization serving Francophones
The law as it affects persons with disabilities is frequently fragmented and enormously complicated. This complexity can itself create a challenge, both for persons with disabilities and for service providers and advocates who attempt to assist individuals in navigating the system.
Regulation of the lives of persons with disabilities: One reason for the complexity is the sheer extent of the law that is specifically focused on persons with disabilities. For reasons both good and bad, the lives of persons with disabilities are heavily regulated, and persons with disabilities frequently find themselves dealing with a complex web of laws and policies in attempting to address day to day needs. For example, persons with physical disabilities who wish to live independently may need to understand a range of laws and programs, including the Building Code, tax credits for accessibility renovations, human rights laws regarding rental housing and the duty to accommodate, and home care support programs to address domestic or personal care needs, in addition to addressing the concerns that non-disabled persons deal with in securing or adapting appropriate housing.
Complexity of the laws: Particular laws addressing disability-related issues are themselves often exceedingly complex, lengthy and technical, creating substantial bureaucratic structures and extensive policy frameworks. The Ontario Disability Support Program and Ontario’s special education programs for primary and secondary students with disabilities are two examples of complex laws and bureaucracies. Understanding and effectively navigating these systems requires considerable effort and expertise.
Relationships between laws: As well, there may be complex relationships between laws. Laws may overlap or interact in complicated ways – a case in point being the interrelationship of the Ontario Building Code, the Ontario Human Rights Code, the Accessibility for Ontarians with Disabilities Act with its accompanying regulations and the Ontarians with Disabilities Act, all of which deal with accessibility for persons with disabilities, but with inconsistent standards and processes.
Fragmented laws, policies and programs: Finally, the laws targeting persons with disabilities have, by and large, evolved over a period of many years to deal with specific pressing issues as they arise. While there have been some attempts to harmonize the laws, there are frequently gaps or inconsistencies, and the lived experience of persons with disabilities is often not addressed holistically. Laws, policies and programs often fail to take into account that an individual may be at one and the same time, for example, a mother, a person with a mental illness, a person with a sensory disability and a job-seeker. Laws, programs and services will often deal with each of these attributes separately, so that although many supports may be available, the individual must cobble together a patchwork of services for themselves, none of which address the whole person or the complexities of the barriers she or he faces. As an example of the type of concerns raised by persons with disabilities, during the consultations one parent with a disability told the LCO although she received home care supports for domestic tasks due to her disability, the rules of the program only permitted the home care support worker to do the laundry for the person with a disability – and not for the remainder of the family.
Transitions: Related to the previous issue of fragmentation, is the issue of how the law supports or inhibits the ability of persons with disabilities to make transitions – a major theme during the spring 2010 consultations. Persons with disabilities generally aspire to move along the life-course in a way similar to their non-disabled peers – to transition from living with their parents to living independently or from education to employment, for example. However, current laws, policies and programs may not support these life-course transitions, or may even create roadblocks. Similarly, persons with disabilities may find it difficult to make transitions between program areas – from income support to employment, or between the mental health and criminal justice systems because of a lack of coordination between systems. For example, while the Ontario Disability Support Program includes a variety of programs and mechanisms to support transitions into the workforce, a number of barriers have been identified, such as the “benefits trap”, that discourage this transition. This lack of attention to transitions reinforces the fragmentation of the law referred to earlier.
TOWARDS A FRAMEWORK: YOUR FEEDBACK
What can be done to improve the ability of laws and policies to address persons with disabilities as whole persons?
What can be done to improve linkages and coordination between laws, policies and programs?
What can be done to improve navigation through systems intended to assist persons with disabilities?
E. Implementation Issues
I guess I’m not thinking so much in terms of ‘gaps’ [in the law]. The laws are all there. They just need to be enacted the way they’re supposed to be. You know, the spirit of that law, the spirit of those laws: that’s what we need to do. As long as you have a rationing approach as opposed to a rights based approach to things like housing, transportation, critical support services, access to justice, whatever you want to talk about, I think these problems are going to emerge.
LCO Focus Group, Toronto, May 10, 2010
As is noted above, there are a number of laws whose provisions are problematic in terms of their effect on persons with disabilities, whether because they incorporate ableist attitudes, or because they fail to take into account the realities of existence for persons with disabilities. In many cases, however, the law is sound on paper, but problematic in practice. Laws, policies and programs originally intended to benefit persons with disabilities may fall short of the goal or have unintended negative consequences.
Some reasons for this have been identified in the preceding discussion, such as 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, or adversarial approaches to program implementation. Other issues are outlined below.
Reliance on self-advocacy to navigate complex systems: As the previous section described, the law as it affects persons with disabilities is often fragmented and complex, so that persons with disabilities find it difficult to navigate through the necessary systems. The nature of certain types of impairments may make navigation particularly difficult – for example, a person in crisis due to a mental health disability is not likely, at that point, to be able to on their own locate and access supports. Persons who are living in poverty may be focused on day-to-day survival, and less able to concentrate personal resources to deal with complex bureaucracies. Yet, most systems now rely on persons with disabilities themselves to identify their rights and advocate for themselves, assuming that individuals have the information, support systems and personal resources to do so.
There is no case management approach anymore to provide assistance to people to access services that are available to them. Even within the context of services that are provided within one organization – let alone, […] where there are multiple presenting […] issues that a person may have. So, in terms of access, the bureaucracy is not responsive to peoples’ needs the legislation is not responsive to peoples’ needs and doesn’t provide the kinds of supports that people need to be able to actually access and enforce their rights.
LCO Focus Group, Thunder Bay, June 16, 2010
Organizations serving Aboriginal Persons
Power imbalances: As well, there is a often a significant power imbalance between the individual with a disability and the person or organization administering the law or program. For example, ARCH points out that persons with intellectual disabilities may rely on developmental services and supports for many activities of daily living, such as eating, dressing, bathing, toileting, managing finances, or navigating social assistance bureaucracies, and states that:
This dependence leaves people with disabilities vulnerable; they must work hard to maintain good relationships with support workers, family members and others on whom they rely in order to ensure that they continue to receive support and their basic needs are met. Making a complaint about a support worker or raising a concern about services may threaten or sever those relationships, and this can have disastrous impacts for the person with a disability.
Limited resources: In some cases, adequate human or financial resources are not provided to ensure the appropriate functioning of a law or program, so that access to rights and benefits is, in effect, rationed. As one consultee noted,
The biggest gap that I see is in funding, is in supporting the programs that are out there. I mean, we all, I suspect in this room, would all espouse community living as something that is integral to the inclusion of people with developmental or intellectual disabilities, or for that matter, any other disability, but when you don’t have supports in place, when people can’t access the supports that they need to be able to engage with the community, then it becomes nothing more than, you know, a saying. When, you know, there isn’t money to transition from being in high school to living in the community, when there isn’t money to I don’t know, to pay support workers so that you have control over your own life and you can make choices and decisions. When there isn’t any funding for the programs, the programs themselves are worthless.
Courts have been reluctant to impose positive obligations on governments to provide supports to persons with disabilities, so that supports are at the discretion of governments.
Lack of monitoring and transparency: In many cases, it is difficult to tell whether a particular law, policy or program is having its intended effect, because there is no adequate mechanism for monitoring and evaluating its effectiveness. Data on the effect of a particular program, benefit or law on the lives of persons with disabilities frequently do not exist. For example, although Individual Education Plans for students with disabilities are required to include transition plans for students approaching school-leaving stage, there is, as of yet, no requirement for monitoring and evaluating transition plans. In a 2008 Report on Special Education, the Auditor General of Ontario noted that, although transition plans were completed for special needs students as required by regulation, there was no documentation on whether intended actions were completed and with what degree of success.
TOWARDS A FRAMEWORK: YOUR FEEDBACK
What measures can be put in place to ensure that laws affecting persons with disabilities are implemented effectively?
How can the law be made more accessible for persons with disabilities?
What might effective monitoring and evaluation mechanisms for laws and programs affecting persons with disabilities look like?
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