Based on the approaches identified in Chapter I and the contexts and themes outlined in Chapter II, this Chapter will identify and define principles which can form the basis for an evaluative framework for the law as it affects persons with disabilities, as well as some considerations for applying these principles. As was highlighted in the previous chapter, “law” includes not only statutes and regulations, but the policies and practices that are employed to implement them, and so should be understood broadly.
A. Adopting a Principles-Based Approach
As was noted in Chapter I, the LCO determined at an early stage in this project to base its Framework on a set of principles.
Principles are normative, and can act as a catalyst to change attitudes and awareness about persons with disabilities. They are also by their nature aspirational, and can help us to identify the goals which law and policy should seek to achieve with respect to persons with disabilities. A principles-based approach can assist in ensuring that the goals of the law are in harmony with the aspirations of persons with disabilities, while recognizing that those aspirations (and the law itself) are constantly evolving.
As discussed in the previous Chapter, the law as it affects persons with disabilities is vast, diverse and sometimes contradictory. There are dozens of laws that directly target some or all persons with disabilities. Many of them, like special education and the Ontario Disabilities Support Program (ODSP), involve extensive and complicated webs of policies and processes and significant bureaucracies. And of course, by definition, all laws of general application affect persons with disabilities, sometimes differently or disproportionately compared with those who do not identify as having a disability. Not surprisingly, the law as it affects persons with disabilities is often fragmented and difficult to grasp, let alone navigate. A principles-based approach potentially provides a clear and consistent yet flexible means of assessing this wide range of laws.
As well, a principles-based approach builds on the extensive work that has been completed over the past few decades. Persons with disabilities, together with organizations that represent, serve or advocate for them, have worked to articulate principles that address their experiences and their aspirations, and to see them reflected in laws and public policy. The Canadian Charter of Rights and Freedoms (Charter) and the Ontario Human Rights Code (Code) (together with the caselaw developed under them), statutes such as the Accessibility for Ontarians with Disabilities Act (AODA), public policy documents such as In Unison and international documents such as the Convention on the Rights of Persons with Disabilities (CRPD) all reflect, to varying extents and according to their particular contexts, these fundamental principles. A principles-based approach therefore ensures that the work of the LCO builds on and complements all that has gone before, and can make a contribution to the ongoing evolution of this area. A brief outline of the key sources for the LCO’s principles can be found in Appendix B to this Final Report.
Because principles are abstract, a principles-based framework must meet the significant challenge of grounding these abstract principles in lived experience, and ensuring that their implications and interpretations are sufficiently concrete to permit practical application, a challenge that is discussed at greater length later in this Chapter, and explored in the context of particular laws in the Case Examples throughout this Final Report and the extended Case Example applying the Framework in Chapter V.
B. Substantive Equality As An Overarching Value
Equality is identified as a value or a principle in some of the documents discussed above. In particular, equality and non-discrimination are central to the Charter and to the Human Rights Code.
Rather than identifying equality as a discrete principle, the LCO has concluded that substantive equality is more appropriately described as “an underlying value” or a goal that observance of the principles will advance and that should influence the interpretation of the principles.
The interpretation of the concept of equality is subject to on-going debate and discussion and the case law relating to equality continues to evolve. Similarly, its meaning as a value underlying the principles will also evolve.
“Equality” is often linked with “non-discrimination” and in certain respects they are intended to achieve similar results. Anti-discrimination theory has become intertwined with the notion of equality, and as a result even the broader “equality” tends to carry with it the notion that particular groups (and not necessarily others) have been treated unequally and deserve to be treated equally. There is a major difference between the two, however. “Non-discrimination” requires a comparison with others who do not share distinctive characteristics with a person denied a benefit or opportunity, for example. There is an implicit assumption that the way the comparator group is treated or the opportunities available to the comparator group is the standard to meet. Both the claimant and the comparator group might be treated “badly”, but nonetheless equally and without discrimination, even though the way they are treated is at a low standard. Accordingly, governments required to extend benefits to a group previously excluded because the exclusion constitutes discrimination can decide not to provide the benefit rather than extend it.
The LCO’s approach to the concept of equality is substantive, rather than formal. The Supreme Court of Canada, in a recent case dealing with age-based criteria, stated,
Substantive equality, unlike formal equality, rejects the mere presence or absence of difference as an answer to differential treatment. It insists on going behind the facade of similarities and differences. It asks not only what characteristics the different treatment is predicated upon, but also whether those characteristics are relevant considerations under the circumstances. The focus of the inquiry is on the actual impact of the impugned law, taking full account of social, political, economic and historical factors concerning the group. The result may be to reveal differential treatment as discriminatory because of prejudicial impact or negative stereotyping. Or it may reveal that differential treatment is required in order to ameliorate the actual situation of the claimant group.
Substantive equality requires government and private actors to take the steps necessary to advance access by all citizens to benefits, supports, programs, goods and services in a way that is responsive to their particular needs. Its goal might also be thought of as full “citizenship” in society. It incorporates but is not limited to non-discrimination, meaning that no distinctions are imposed upon disadvantaged persons that, in purpose or effect, withhold or restrict access to opportunities, benefits or protection from the law, or impose burdens, obligations, or disadvantages that are not imposed on others. It also means, however, that persons with disabilities are not defined by the barriers they face, but are recognized as members of society who are able to make contributions and have obligations, as do other members. Substantive equality is about intangible concepts such as dignity and worth, but also about concrete opportunities to participate, have needs taken into account and have society and its structures and organizations develop in a way that does not treat persons with disabilities as outside mainstream society.
C. Principles For The Law As It Affects Persons With Disabilities
The LCO has identified six principles for the law as it affects persons with disabilities:
Respecting the dignity and worth of persons with disabilities;
Responding to diversity in human abilities and in other characteristics;
Fostering autonomy and independence;
Promoting social inclusion and participation;
Facilitating the right to live in safety; and
Recognizing that we all live in society.
The six principles are closely linked. They cannot be understood or successfully implemented in isolation. To a certain degree, the underlying concepts overlap. For clarity, they are outlined here separately, but the Framework applies them holistically, reflecting their connectedness.
As described in Chapter I, the LCO’s consultations assisted us in understanding what the principles might mean in practical terms. As well, the LCO funded six Commissioned Papers and carried out extensive internal research on the theme of transitions in the lives of persons with disabilities and the law as a means of identifying implications and possible interpretations of the principles.
1. Respecting the Dignity and Worth of Persons with Disabilities
Definition: This principle recognizes the inherent, equal and inalienable worth of every individual, including every person with a disability. All members of the human family are full persons, with the right to be valued, respected and considered and to have both one’s contributions and needs recognized.
The Principle and the Experiences of Persons with Disabilities
As briefly discussed in Chapter II of this Final Report, there is a long history in Canada of negative attitudes towards persons with disabilities. As an example, until the relevant provisions were overturned through a court challenge, the Ontario Disability Support Program Act explicitly excluded from its supports and benefits those persons whose impairments and primary restrictions resulted solely from addictions to drugs or alcohol. The Social Benefits Tribunal determined that this provision disadvantaged individuals with this particular type of disability based on assumed or unjustly attributed characteristics, denying them their essential human worth. The Ontario Divisional Court found that this exclusion was not in accordance with the purpose of the law; rather, it was based on “assumed or unjustly attributed characteristics” regarding individuals with substance abuse disabilities, and that it resulted in the denial of the “essential human worth” of persons with these disabilities. This decision was upheld on appeal to the Ontario Court of Appeal.
A lack of respect for the worth and abilities of persons with disabilities 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. Similarly, during the LCO’s spring 2010 public consultations, many persons with disabilities expressed concern about demeaning treatment or processes for obtaining benefits and supports under ODSP. For example, one participant commented,
To get funding, you have to strip yourself of any itty-bitty inkling of dignity that you have…you need to sort-of strip yourself of all the dignity that you have and open your private spaces up absolutely, completely, risking legal ramifications even – I wonder, I wonder if that information could be used when there are issues of aggression and violence and abuse and all that kind of stuff, if that kind of information you end up documenting to get the support you need to save yourself from yourself, to gain your dignity and independence, may actually be used against you at some point.
LCO Focus Group, Organizations, Toronto, May 11, 2010
Interpreting the Principle
The principle of respect for the dignity and worth of persons with disabilities is a direct challenge to stereotypes and negative attitudes towards persons with disabilities. It emphasizes that dignity is something that belongs to us because we exist: it is not something that we earn or receive, and it cannot be rightfully ignored or diminished. It does not depend upon our health status or our abilities. Every person is worth caring about and entitled to respectful treatment.
This means that those who make law and policy, or who implement it, must be sure that laws and policies, in their substance or implementation, are not tainted by negative or dismissive attitudes towards persons with disabilities, for example through demeaning processes or insulting treatment. Because barriers for persons with disabilities tend to push them towards the margins, socially and economically, there is a disproportionate incidence of low-income among persons with disabilities, and the particular set of negative attitudes towards low income individuals with disabilities deserve special scrutiny.
It also means that persons with disabilities should be understood as whole individuals – as employers as well as employees, parents and caregivers as well as recipients of care, volunteers and fully engaged citizens, and as sexual human beings, among other roles – rather than being reduced to the sum of their impairments, and as passive objects of charity. This requires us to see persons with disabilities in their full social context, and as individuals with multiple identities and evolving life courses.
The following Case Example provides an illustration of how attitudes that do not recognize persons with disabilities as full persons, with all of the characteristics and needs of persons who do not have disabilities, may affect and be reflected in laws, policies and practices.
CASE EXAMPLE: RESPECTING DIGNITY AND WORTH
Sexuality, Persons with Disabilities, Attendant Services and the Law
The World Health Organization has recognized the importance of sexuality to human health and well-being, and framed sexuality as both a basic need and a fundamental right:
Sexuality is an integral part of the personality of everyone: man, woman and child. It is a basic need and aspect of being human that cannot be separated from other aspects of life…Since health is a fundamental right, so must sexual health also be a basic human right.
It has been pointed out that in general, “The vast majority of people are born with emotional and sexual needs and no one thinks, in principle, to question the exercise of these rights per se, as long as lawful sexual activity is occurring and public decency is safeguarded.”
However, historically Western culture has viewed persons with disabilities as asexual, or even viewed their sexuality as deviant. While these attitudes have evolved somewhat, they continue to affect the lives of persons with disabilities. These attitudes may have particularly significant effects on the lives of women with disabilities, given that women in general are identified with their nurturing roles, sexual attractiveness and reproductive capacity. Negative or dismissive attitudes towards the sexuality of persons with disabilities may be understood as a form of ableism:
In the context of sexuality, ableism includes beliefs that people living with disabilities are not sexy or sexual and are not capable of having a healthy sexuality or healthy relationships, specifically because of their disabilities. Ableism fails to acknowledge that people with disabilities are systemically marginalized and discriminated against in ways that make it more difficult for them to express and explore their sexuality, find sexual partners, and experience healthy relationships.
This effect of this negative mindset may be exacerbated by the broader tendency towards paternalistic attitudes to persons with disabilities. That is, even where attitudes towards the sexuality of persons with disabilities are not negative per se, paternalism may inhibit support for sexual expression based on the assumption that persons with certain kinds of disabilities should not engage in sexual behaviour or that the risks always outweigh the benefits or exercise of choice. As is further considered in the discussion of the principle of fostering autonomy and independence later in this Chapter, paternalism can be a significant barrier to the substantive equality and independence of persons with disabilities; respect for the dignity and autonomy of persons with disabilities requires respect for their right to take risks.
Some persons with disabilities require assistance in order to engage in sexual expression, as with other activities of daily living. Persons with disabilities may receive assistance with activities of daily living in institutional settings, or through attendant services in the community. The LCO’s Final Report: A Framework for the Law as It Affects Older Adults, Advancing Substantive Equality through Law, Policy and Practice considers some issues related to the sexuality of older adults with disabilities in long-term care settings. This Case Example will focus on persons with disabilities living in the community and receiving services through attendant services.
The law surrounding the provision of attendant services in Ontario is described more generally in Chapter V of this Final Report. Essentially, attendant services providers may be provided through agency services or may be employed by persons with disabilities through direct funding programs. Their role is to provide assistance with activities of daily living such as dressing, eating, bathing and grooming, toileting and similar activities. Key to the role of the attendant is that the person with the disability retains control and decision-making authority over their own care: attendants assist persons with disabilities to lead more independent and autonomous lives. The relationship between users and providers of attendant services is of necessity a very intimate one, given the nature of the services provided and the fact that services are provided in the home of the persons with a disability. The dynamics may be complicated, as while the person receiving services directs the service provider, that person is also very dependent on attendant services in order to remain in the community.
The issues (especially legal issues) raised by the provision of sexual supports by attendant services providers are very rarely discussed, in part because of the negative attitudes highlighted above. Generally speaking, there is a dearth of resources, training and infrastructure to guide service providers and persons with disabilities in addressing sexual needs. Although sexual support through attendant services does occur, many organizations providing attendant care do not have policies on these issues and assistance occurs “below the radar”. It is rare for sexual support to be identified as an issue in job descriptions, contracts and service agreements. A survey on barriers to sexual expression by persons who use Augmentative and Alternative Communication reported that in some agencies there is no clear consensus on what attendant services do and do not do in relation to assisting people in sexual activities. Not surprisingly then, both persons using attendant services and those providing them have indicated that they lacked knowledge and factual information about legal rights and obligations related to sexual support services by attendants.
Because of this silence in organizational policies and documents, it is left to attendants and attendant services users to address the issues individually. Although the WHO recognizes the importance of sexuality, many still experience sex and sexuality as something that is not often openly spoken about and may feel some discomfort when discussing sexuality. Both attendants and persons using attendant services may be uncomfortable raising issues regarding sexuality.
As well, without training or policies to set standards, attendant services users are dependent on the individual attitudes of attendants. Not surprisingly given the broader societal attitudes towards sexuality and disability, some studies have indicated that attendants may be unsupportive towards sexual activity on the part of persons with disabilities; some may be uncomfortable with assisting with sexual activity that falls outside their own norms. Persons with disabilities may be reasonably concerned that they will be judged negatively for their sexual interests and that this will undermine what is for them a crucial support. 
Where policies and formal support mechanisms regarding sexuality and persons with disabilities exist, they tend to focus more on sexual abuse and victimization. While guidelines on these issues are crucial, they do not address the full range of needs and issues related to sexuality. Given the overall silence on issues related to disability and sexuality, a sole focus on sexual abuse and victimization in dealing with sexuality may encourage a tendency towards a protective, rather than facilitative mindset towards the sexuality and autonomy of persons with disabilities. Silverberg and Odette note,
Many attendants consider it part of their job to protect the people they work with from harm. In stories from both attendants and people using attendant services, we saw how an attitude of paternalism prevails in many working relationships and how this idea of protection can easily lead to over-protection.
As well, there are concerns about legal liability. One article notes, “even if perfectly legal in theory, PAS [personal assistance services] for sexual activity would be a hot potato for policy-makers”, particularly given potential liability issues if sexual harassment concerns are raised.
Discussions about sexual support are particularly difficult because they occur in a work context, an arena where discussion of sexuality is usually considered off-limits. There are concerns that raising issues regarding sexual expression might be perceived as sexual harassment or abuse, or lead the other person to feel unsafe in the working relationship. Without clear guidelines, both persons using attendant services and attendants may be unsure as to whether or when raising questions about sex or asking for sexual support might be considered harassing.
As a result of these factors, there is a silencing effect around issues of sexuality for attendant services users, which may reinforce the perception that persons with disabilities are not or should not be interested in sexual expression. A survey of attendants and attendant service users found that both attendant service users and attendants tend to be reluctant to be the first to raise the topic, so that even those who agree that sexual support is part of attendant services may be wary of bringing up the topic.
The principle of dignity highlights the importance of recognizing persons with disabilities as individuals with the full range of human characteristics and needs, including sexuality, and of addressing stereotypes that see persons with disabilities as asexual and any expressions of sexuality as inappropriate. A failure in law and policy related to attendant services to recognize and address persons with disabilities as sexual may undermine the principle of dignity and worth by limiting the ability of persons with disabilities to express and enjoy all aspects of their humanity.
2. Responding to Diversity in Human Abilities and Other Characteristics
Definition: This principle requires recognition of and responsiveness to two dimensions of diversity: the reality that all people exist along a continuum of abilities in many areas, that abilities will vary along the life course, and that each person with a disability is unique in needs, circumstances and identities; and the multiple and intersecting identities of persons with disabilities that may act to increase or diminish discrimination and disadvantage.
The Principle and the Experiences of Persons with Disabilities
All humans vary in their abilities. “Disability” may be thought of as part of this normal variance. Social and environmental barriers may, at some points along this continuum of abilities, create disabling experiences for some individuals. Certain impairments may not constitute a disability in the sense that they affect a person’s daily life. The most obvious example is eyesight: many people who have poor eyesight are able to wear glasses that sufficiently compensate to enable them to function in most aspects of their life as if their eyesight were not impaired. Without corrective lenses, however, their eyesight might, in fact, constitute a disability. In this way, advances in technology and changes in the physical and social environment may shift the lines around what is considered a “disability”.
As well, some conditions commonly considered as impairments may have positive aspects that are often ignored: for example, some recent studies associate the learning disability of dyslexia, which results in challenges in learning to read and write, with stronger than average skills in other areas, such as spatial perception. That is, the differences associated with disability may be positive as well as negative. Persons with disabilities are not “the other”, but are part of the range of human experience.
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. For example, persons with episodic disabilities such as chronic fatigue or mental health disabilities will have distinctive experiences as they transition in and out of social and legal categories of “disability”. Since eligibility for programs and services may depend on meeting the criteria for “disability”, persons with episodic disabilities may face additional administrative burdens, as they may need to repeatedly re-apply for services as their condition changes. Programs or services may require applicants to demonstrate “permanent” disabilities, or may simply not have designed their systems to deal well with individuals whose status is subject to repeated change. As well, employers may be reluctant to deal with the uncertainty surrounding accommodation requirements for individuals whose needs may fluctuate unpredictably; for invisible disabilities (such as mental health disabilities), this may be compounded by a tendency to doubt the validity of disabilities that cannot be seen.
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, although the law may have difficulty in effectively recognizing and addressing this diversity.
As is noted above, one of the circumstances of persons with disabilities that should be taken into account is the disproportionate experience of low income. Whether as a result of their environments, their impairments or in most cases a combination of the two, individuals with disabilities tend to have lower socio-economic status than their peers without disabilities. 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. The level and type of disadvantage also may differ depending on the type of disability. For example, persons with intellectual disabilities report the lowest labour force participation rate of any group of persons with disabilities, with those with hearing or mobility disabilities faring relatively better in this respect. Disadvantages may accumulate throughout life. For example, a person who experiences barriers in education because of 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.
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. All of these forms of identity will help to shape the life courses of persons with disabilities.
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, Organizations, Toronto, May 11, 2010
Interpreting the Principle
One of the implications of an acknowledgement of the near universality of impairment is the need to widen the range of what is considered “normal” in the context of human abilities, and to design social, political and physical structures more flexibly and inclusively. To put this principle into action, universal or 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. The Convention on the Rights of Persons with Disabilities (CRPD) imposes as a general obligation the promotion of universal design in standards and guidelines as a “default” approach that “shall not exclude assistive devices for particular groups of persons with disabilities where this is needed”.
Inclusive design has been considered as part of the legal duty to accommodate under the Code. As the Ontario Human Rights Commission (OHRC) has emphasized, “[a]ccommodation with dignity is part of a broader principle, namely, that our society should be structured and designed for inclusiveness”. Inclusive design, with appropriate individual accommodations where necessary, is required to ensure full recognition of the spectrum of variance in human abilities.
[A]chieving integration and full participation for persons with disabilities requires barrier-free and inclusive design and removal of existing barriers. Preventing and removing barriers means persons with disabilities should be able to access their environment and face the same duties and requirements as everyone else with dignity and without impediment. Where barriers continue to exist because it is impossible to remove those barriers at a given point in time, then accommodation should be provided to the extent possible, short of undue hardship.
In Unison 2000 highlights the intersectional aspect of diversity:
The framework [developed In Unison] also acknowledges the importance of developing flexible policy solutions in order to meet individual needs. Each person with a disability is unique and their specific needs, aspirations and challenges are influenced by their type of disability, stage of life, family, community and cultural context, and other characteristics. Aboriginal persons with disabilities, for example, view disability issues within frameworks that reflect their own cultural principles.
Inclusive design and accommodation must take into account the multiple aspects of identity for persons with disabilities.
The principle of diversity in human abilities and other characteristics also reinforces the recognition that persons with disabilities are individuals first and foremost. For many individuals and in many circumstances, their disability is not the most important aspect of their identities. This recognition helps us to move beyond stereotypes and to combat ableism and paternalism.
The Case Example below examines how racialized persons may encounter the mental health system differently from others, and thereby illustrates the principles of diversity.
CASE EXAMPLE: RESPONDING TO DIVERSITY
Racialized Individuals and the Mental Health System
Ontario is home to considerable ethnic, racial and linguistic diversity. More than half of Canada’s “visible minorities” live in the province. According to the 2006 Census, 2.7 million individuals in Ontario were members of “visible minority” groups. This represented 23 per cent of Ontario’s population. Approximately 80 per cent (2.2 million) of these individuals lived in metropolitan Toronto, representing 43 per cent of Toronto’s population. Within the Toronto Central Local Health Integration Network (LHIN), immigrants make up 41 per cent of the population and, among this group, 20 per cent are recent immigrants, having arrived between 2001 and 2006. More than 160 languages are spoken in Toronto and 4.5 per cent of residents speak neither English nor French.
Individuals from ethno-racial communities are at particular risk of experiencing mental health disabilities. There are several factors that contribute to this heightened risk. For ethno-racial individuals who are newcomers to Canada, arrival may bring with it economic hardship, isolation and the loss of career and social standing. They may be dislocated from established family and social networks. Some may have experienced trauma in their countries of origin.
Other issues that we have to deal with is a lot of clients that may have come from poor countries experiencing post-traumatic stress. Who knows what the encounters were of those individuals in their home country with say, the police system? They get arrested, they come into the Court, you know, they’re being re-traumatized and they’re reacting to old traumas and that is seen as aggression or lack of compliance or a question in terms of fitness, rather than understanding of the impact of mental illness, how it can manifest itself, what it is you will deal with when these individuals come to courts, all these things are missing. And it becomes more difficult because to deal, to work with those individuals, because they’re being dealt with in a very punitive manner.
LCO Focus Group, Toronto, Organizations, May 11, 2010
Systemic racial discrimination may also lead to mental health issues or may result in a misdiagnosis of mental health disability.
Ethno-racial minorities are also particularly vulnerable to poverty with its associated impact on mental health. These circumstances are exacerbated in rural settings where long distances and lack of transportation may hinder access to health care. For example, Ontario is host to approximately 18,000 migrant agricultural workers from Mexico and the Caribbean. These vulnerable workers cite depression and access to health services as two of their top health concerns.
Ethno-racial minorities may experience mental health disabilities differently from the general population. The differences may be physical, cultural, and/or attitudinal. Certain ethno-racial groups have physical attributes that must be taken into account in their treatment. For example, members of Asian ethnic groups tend to be more sensitive to neuroleptic medications.
It is important for those providing services related to mental health disabilities to have strong skills related to cultural competency in order to provide effective services to individuals from ethno-racial communities. The cultural beliefs of certain communities may prevent some members of the community from accepting a diagnosis of mental illness. For others, the nature of mental health may be understood in different terms. Furthermore, different cultures may use terminology referring to mental health issues that are not easily recognized by mainstream health care providers. Some research indicates that members of ethno-racial minorities with mental health disabilities may avoid the mental health system due to the stigma attached to mental illness in their community. According to the Executive Director of the Hong Fook Mental Health Association, some may be uncomfortable turning to an unfamiliar system for support and are more likely to rely on their own community:
In the Asian culture, family is still the most important support, but the stigma attached to mental illness crosses cultures. Is it higher in Asian culture? I am not sure. They are not well informed. I can guarantee that there are patients who are not getting any form of assessment and treatment because the family does not feel comfortable exposing the fact that the family member is sick.
As a result, racialized persons tend to enter the mental health system later than the general population and they are misdiagnosed more often. They are also less likely to participate in public health promotion/prevention programs.
Even after persons belonging to ethno-racial minorities enter into the mental health system, several factors may prevent them from receiving optimal care. These include a lack of cultural awareness on the part of some mental health professionals, language barriers, and the client’s fear or mistrust of a mental health system created and operated by the dominant culture.
Language barriers are particularly acute for ethno-racial newcomers with mental health disabilities. A lack of access to interpreters pervades the health care and legal systems as it does other Ontario government services. Even a doctoral study specifically examining the experience of ethno-racial minorities with community treatment orders in Toronto was conducted solely in English because of a lack of funds. In spite of Ontario’s commitment to two official languages, minority French-speaking communities also face significant difficulties in accessing mental health services in their own language. This problem is complicated by the private nature of mental health issues. In small communities, for example, an individual with mental health disabilities may be less likely to rely on an interpreter living in that same community.
Ethno-racial persons with mental health disabilities are doubly affected by stigma – both in their capacity as members of racialized communities and in relation to their mental health disabilities. Both racist and ableist attitudes may impede their access to health care, even within the mental health system itself. For example, individuals with mental health disabilities commonly have difficulty finding a primary care physician willing to take them as patients.
Individuals from ethno-racial minorities are also more likely to fail to comply with mental health treatment. This is often the result of their adverse experiences with the mental health system and a lack of cultural competence among some service providers.
Among the general shortage of resources for persons with mental health disabilities, there is a particular shortage of mental health resources and services that meet the needs of ethno-racial communities. For example, in spite of the large percentage of people from ethno-racial minorities within the Greater Toronto Area and their unique experience with mental health disabilities, a disproportionately low amount of mental health funding is allocated to mental health services that are culturally competent or are specific to this population.
The Ministry of Health and Long-Term Care (MOHLTC) has taken a number of steps to enhance the ability of the mental health system to provide linguistically and culturally appropriate information and services. For example, MOHLTC funds services designed specifically for immigrant, racialized and ethno-cultural groups. The Health Equity Impact Assessment tool developed by MOHLTC foregrounds equity issues in the development and implementation of policies and programs.
The experience of individuals from ethno-racial communities in the mental health system illustrates the importance of the principle of diversity.
Attention to the principle of diversity assists us in identifying the ways in which persons from ethno-racial minorities will tend to encounter the mental health system from a different position and perspective than others. For a variety of reasons, including the systemic impact of racism and racial discrimination, individuals from this group may find themselves more likely than others to enter the mental health system, so that it may have a disproportionate impact on them. For those who are immigrants to Canada, their life courses will have affected their socio-economic status, their community connections, and their ability to understand and navigate the mental health system, so that processes and policies that may work well for others may not work so well for them. Language and culture may affect how individuals interact with the system.
The principle of diversity highlights the importance of ensuring that laws and policies have the capacity to respond flexibility to diversity among those potentially affected. In this case, it means ensuring that the system has the ability to provide linguistically and culturally appropriate information and services, reach out to ethno-racial communities and new immigrants, and take into account the effects of racism and racial discrimination on mental health.
3. Fostering Autonomy and Independence
Definition: This principle requires the creation of conditions to ensure that persons with disabilities are able to make choices that affect their lives and to do as much for themselves as possible or as they desire, with appropriate and adequate supports as required.
The Principle and the Experiences of Persons with Disabilities
As was highlighted in Chapter II.D.2, 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 mental health disabilities who may be deprived of the ability to make decisions for themselves because of the assumption that because they need supports, they are unable to make decisions, or because of needs for efficiency in large bureaucratic systems. The response to paternalism has been an emphasis on the importance for persons with disabilities of the ability to make choices for themselves – including the right to make what others may consider to be bad or risky choices. Making choices allows us to express, in a fundamental way, our values and goals, and it is by seeing the outcomes of our choices – good, bad or indifferent – that we learn and grow.
Related to the opportunity to choose for oneself is the opportunity to do for oneself – to support oneself financially, to live independently, and to have, to the degree possible, the life options available to persons without disabilities. In Via Rail, the Supreme Court of Canada considered the principle of independence central to the finding that Via Rail’s failure to accommodate users of personal wheelchairs infringed the rights of persons with mobility disabilities to exercise their independence. In some cases, independence is difficult to achieve because of physical, social or institutional barriers. For example, discrimination on the part of landlords and a dearth of accessible housing may make it difficult for persons with disabilities to live independently, and limited accessible transportation services may reduce opportunities for employment or education. In some cases, persons with disabilities may require supports in order to achieve independence. For example, supporting persons with disabilities with self-advocacy tools can reduce the dependence of persons with disabilities on family members or service providers, and enhance skills and confidence.
Interpreting the Principle
The principle of fostering autonomy and independence includes both the right to choose for oneself, and to do for oneself, and is a response to the various forms of paternalism that may affect persons with disabilities.
“Autonomy” has been defined by the World Health Organization (WHO) as “[t]he perceived ability to control, cope with and make personal decisions about how one lives on a daily basis, according to one’s own rules and preferences.” In the context of section 7 of the Charter, the Supreme Court of Canada has articulated the principle of autonomy as including “decisions of fundamental personal importance” particularly with respect to bodily integrity. Disability Rights Promotion International (DRPI) defines autonomy as
the right of an individual to make his or her own choices. Autonomy, or self-determination, means that the person is placed at the centre of all decisions affecting him or her and may choose forms of supported decision-making.
In some circumstances, the autonomy of persons with disabilities may be perceived to be in tension with other principles. For example, in some cases limiting the choices of or enabling others to make choices on behalf of persons with disabilities has been seen as justified in order to achieve other ends, including the safety and security of persons with disabilities or of others in society. Also, some laws are put in place in recognition of the particular risks or vulnerabilities that persons with disabilities might experience because they lack appropriate supports. Although some limitation may be justified consistent with other principles, it is crucial that the focus remain on respecting the autonomy of persons with disabilities as much as possible and that limitations not be motivated by paternalism.
It is helpful to remember that autonomy is realized in the context of our relationships. This is not only true for persons with disabilities, but for all of us. Jennifer Nedelsky argues that it is relatedness which enables people to gain autonomy; the relationships between “parents, teachers, friends, loved ones” are what “provide the support and guidance necessary for the development and experience of autonomy”. This approach focuses on “structuring relationships so that they foster autonomy.” Relational autonomy recognizes that none of us makes decisions on our own but we do so in consultation with others, and that the provision of support to persons with disabilities in the context of decision-making does not undermine autonomy.
The WHO defines independence as “[t]he ability to perform an activity with no or little help from others, including having control over any assistance required rather than the physical capacity to do everything oneself.” In Unison 2000 stresses that the promotion of independence or “citizenship” and other principles, including those defined by the LCO, is linked to the goal of improving disability-related supports:
Disability supports are tools for inclusion. They are critical if people with disabilities are going to lead fulfilling lives and participate fully in their communities. Without them, many people with disabilities are not able to fulfill their social and economic potential.”
The principle of independence therefore requires that persons with disabilities are provided with appropriate levels of supports to do things for themselves to the greatest degree possible.
The principle of autonomy and independence applies to all areas of life for persons with disabilities. It includes within its scope fundamentally personal decisions and provides strong support for enhanced disability-related and income supports for persons with disabilities. Further, both autonomy and independence inform the duty to accommodate as requiring accommodations that maximize the ability of persons with disabilities to choose and do for themselves.
The concept of universal design, which requires those who develop or provide laws, policies, programs or services to take into account diversity from the outset, is connected to the principle of autonomy and independence in that, when properly implemented, universal design removes from persons with disabilities the burden of navigating onerous accommodation processes and negotiating the accommodations and supports that they need in order to live autonomously and independently. In this way, the principle of autonomy and independence is closely linked to that of participation and inclusion.
The following Case Example illustrates some key aspects of the principle of autonomy and independence through an examination of some of the issues surrounding community treatment orders for persons with mental health disabilities.
CASE EXAMPLE: FOSTERING AUTONOMY AND INDEPENDENCE
Community Treatment Orders for Persons with Mental Health Disabilities
As with the western world in general, Ontario’s mental health system has followed a policy of deinstitutionalization over the last fifty years. Where once persons with significant mental health disabilities were detained in psychiatric hospitals as a matter of course, most of these persons are now treated in the community. The goal of deinstitutionalization is to provide persons with mental health disabilities with services, resources, community rehabilitation programs and early intervention services in the least restrictive setting feasible, a goal in harmony with several of the LCO’s principles for the law as it affects persons with disabilities, including the principles of inclusion and participation, and of fostering autonomy and independence.
This commitment to care in the community has been hampered, however, by a shortage of community-based resources for persons with mental health disabilities. The Auditor General concluded in 2008 that “adequate community-based supports may not be available for people being discharged from psychiatric hospitals as a result of bed closures”. A lack of community-based supports leads persons with mental health disabilities to rely instead on higher-cost services such as emergency rooms and hospitals. The Auditor General also cited a 2004 report by CAMH to the effect that more than half of persons with serious mental illness living in the community were not receiving an appropriate level of care. Hospital readmission and repeat patient rates (the “revolving door syndrome”) also indicated a gap between the institutionalized and community-based system. As the Auditor General explained it,
Too many individuals were returning to hospitals for care because there were poor integration of services, poor community follow-up, inefficient or inappropriate use of resources, poor planning or preparation for discharge, and insufficient help to people attempting to maintain themselves in the community rather than in an institutional setting.
The Legislative Assembly of Ontario Standing Committee on Public Accounts review of the Auditor General’s Report emphasized that the goal was to build a “patient-centered” system to ensure a smooth transition of clients from one provider to the next and to divert clients away from emergency scenarios and towards community-based services and supports.
Initiatives to improve community based treatments include Assertive Community Treatment Teams, Intensive Case Management and Crisis Response Services. Assertive Community Treatment Teams are mobile multi-disciplinary teams engaged in intensive case management and crisis response services, providing intensive 24/7 support to persons with serious mental illness as an alternative to hospitalization. Intensive Case Management involves a single case manager who coordinates appropriate community services and supports for clients, linking them with a range of treatment and rehabilitation services including social recreation, employment programs and supportive housing. Crisis Response Services are available in a variety of different formats (telephone, walk-in, residential, emergency and others) to persons with serious mental illness experiencing a psychiatric crisis in the community. These services are intended to provide immediate relief from symptoms, prevent the condition from worsening and resolve the crisis, as well as mobilize community resources to assist the individual and thereby prevent unnecessary hospitalization. Services are to be co-ordinated with community supports.
Community Treatment Orders (CTOs) were introduced in 2000 to permit physicians to mandate patients discharged from hospital to pursue community treatment in order to prevent the need for further hospitalization and to address the “revolving door syndrome” by which someone released from a psychiatric facility discontinues treatment in the community and is eventually admitted to hospital again. The orders, which last for a maximum of six months and are subject to renewal, involve the development of a community treatment plan that is agreed to by the physician issuing the CTO, the patient or her or his substitute decision-maker, and the community agencies that will be providing services under the plan, consented to by the patient or substitute decision-maker. Consent to a CTO is sometimes a condition to discharge from hospital and this is a powerful incentive for many patients to consent. Failure to abide by the plan can result in the individual’s return to hospital. There is provision for challenging the issuance of the CTO and a process for review.
An examination of CTOs can reveal the challenges that may be associated with interpreting and fulfilling the principle of fostering autonomy and independence. CTOs can be a valuable tool for helping individuals with mental health disabilities to return to the community, a much less restrictive environment than the hospital, and to maintain a level of health necessary for successfully remaining there. In this way, CTOs align with the principle of autonomy and independence. Moreover, the treatment plan is developed in consultation with the individual in question (or his or her substitute decision-maker), thereby recognizing the importance of involving individuals in decisions that affect them.
However, CTOs may also be perceived as coercive. CTOs will impose conditions which the individual must meet if he or she is not to be re-hospitalized. While these conditions must meet the requirements of the Mental Health Act and be consented to by the individual or his or her substitute decision-maker, some have raised concerns that at times these conditions may be intrusive and may place significant restrictions on an individual’s activities. They may also affect the privacy of the individual affected. As a result, CTOs have been controversial.
A study of 24 individuals who participated in CTOs highlighted this ambiguous status. Overall, the study presented a relatively positive picture of CTOs, as on the whole study participants reported benefitting from their experience with CTOs. Most of them had had little or no community support or services before going into hospital. In fact, in previous hospitalizations or incarcerations, several had been released without any arrangement for community support. It was only as a result of their placement under a CTO that they began to receive regular support from case managers, social workers, and/or psychiatrists. In most instances, they liked and trusted their case workers and believed that the regularity of the support they offered and the supervision of their medication was in their best interests. The CTO was thought to assist them in stabilizing their condition, keeping a routine, caring for their children, and, in one case, finding a job. Some ambivalence that they felt on first being placed under a CTO dissipated as they came to trust and respect these service providers.
However, several participants did indicate that they felt restricted and disempowered by the CTO. Many had consented to the CTO only to avoid further hospitalization. They still felt like a patient and did not like being monitored. They feared the threat of being forced to return to hospital if they failed to comply with their treatment plan.
The Ministry of Health and Long-Term Care has undertaken two reviews of CTOs under section 33.9 of the MHA. The first was completed by Dreezer and Dreezer in 2005, and the second, conducted by R.A. Malatest & Associates, was very recently completed in late May 2012. The reviews canvassed many of the tensions and challenges outlined here. MOHLTC is currently reviewing the report completed by R.A. Malatest, including recommendations regarding safeguards for consumers, and will be developing a responsive action plan.
The tensions surrounding the application of the principle of autonomy and independence to CTOs highlight some important aspects of this principle.
First the principle is closely linked to other principles. The principle of inclusion and participation is important, both in that the ability to transition to or remain in the broader community (as opposed to the hospital) is seen as an aspect of fostering autonomy and independence, and in the emphasis on involving the person with a disability, as much as possible, in the decisions about treatment orders. The principle is also linked to that of respecting the right to live in safety, as one focus of CTOs is on ensuring that persons with mental health disabilities are able to remain well enough to remain safely in the community.
Further, the example highlights the importance of supports to enable autonomy and independence. A key context for CTOs is the difficulty of accessing community supports for some persons with mental health disabilities, and the role of CTOs in promoting access to those supports.
As well, the concerns expressed about the potentially coercive nature of CTOs highlight the importance placed on ensuring meaningful choices for persons with disabilities, and the risks of paternalism, particularly for persons with mental health disabilities.
4. Promoting Social Inclusion and Participation
Definition: This principle refers to designing society in a way that promotes the ability of all persons with disabilities to be actively involved with their community by removing physical, social, attitudinal and systemic barriers to exercising the incidents of such citizenship and by facilitating the involvement of persons with disabilities.
The Principle and the Experiences of Persons with Disabilities
As was discussed in Chapter II.D.1, persons with disabilities have often tended to be marginalized in the public sphere, so that their values, priorities, concerns and even their existence are not visible to those who are developing, implementing or reviewing laws, policies and practices. This highlights the importance for persons with disabilities of inclusion and active involvement in advocacy organizations and government decision-making processes, to have processes and structures that value and take into account their expertise and perspectives.
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, Organizations, Toronto, May 12, 2010
Participation is important at the individual level as well as at the broader societal one. For example, Mona Paré examined the ability of students with disabilities and their parents to have input in decisions that affect their ability to participate equally in the educational context, and found that, as a result a range of barriers including lack of information, complex systems and power imbalances, such participation is minimal, despite laws and policies intended to facilitate it.
Participation is closely affiliated with the concept of inclusion. Persons with disabilities have often experienced physical or social exclusion or marginalization, whether arising from attitudinal, physical, social or institutional barriers. The long history of institutionalization of persons with disabilities is a particularly clear example of exclusion, but people with disabilities continue to be pushed to the margins in a variety of social areas, including employment, education and community life. The principle of inclusion aims to redress this exclusion, and make persons with disabilities full members of their communities and of society at large.
Interpreting the Principle
The principle of promoting social inclusion and participation has a variety of aspects. It includes ensuring the ability of persons with disabilities to participate in the community, and to be heard as equal citizens on issues that affect them. In Unison 2000, for example, equates this principle with the concept of citizenship, which involves “the ability of a person to be actively involved with their community. Full citizenship depends on equality, inclusion, rights and responsibilities, and empowerment and participation.”
As well, as Frédéric Mégret describes, participation as it is used in the CRPD constitutes “a broader demand, made not only to the state but also to society, to allow persons with disabilities to fully become members of society and the various communities of which they are a part.” The principle of inclusion and participation therefore promotes respect for the integration of persons with disabilities in society as desired, and attempts to recognize, prevent and remove various barriers to that integration. Such barriers include stereotypes, false assumptions, stigmas and ableist attitudes about the abilities of persons with disabilities. This principle may also manifest in a way that demands particular respect for the cultures that have evolved within a disability community. Education and various methods of awareness-raising are often identified as means to apply this principle effectively.
he Supreme Court has made the principle of inclusion by design a central aspect of its approach to human rights laws. One element of this inclusion is attention to the accessibility of structures, programs and services, highlighted by the Accessibility for Ontarians with Disabilities Act (AODA). The purpose of the AODA is to develop, implement and enforce accessibility standards in order to remove barriers and achieve accessibility for Ontarians with disabilities across a range of contexts by 2025. The AODA defines a barrier as “anything that prevents a person with a disability from fully participating in all aspects of society because of his or her disability, including a physical barrier, an architectural barrier, an information or communications barrier, an attitudinal barrier, a technological barrier, a policy or a practice”.
Barriers to participation may affect different subgroups differently. For example, persons with intellectual, cognitive or mental health disabilities may be restricted from participation in decisions affecting their daily living if found to lack legal capacity. Persons with mobility disabilities may find it difficult to access social and recreational programs or to vote if buildings are not physically accessible. Participation, therefore, can require different considerations for different people depending on their particular experience of disability.
It is important to note that this principle may mean different things for different subgroups within the disability community. Those who are culturally Deaf, for example, believe that inclusion means that respect and space is made for the continuity of that particular linguistic and cultural community. Other subgroups within the disability community, such as the intellectual disabilities community, may consider the principle of inclusion to encompass the integration of persons with disabilities into all aspects of mainstream society. These positions are not necessarily mutually exclusive; however, the means of achieving inclusion might differ for various subgroups of persons with disabilities based on their particular vision of inclusion.
5. Facilitating the Right to Live in Safety
Definition: This principle refers to the right of persons with disabilities to live without fear of abuse or exploitation and where appropriate to receive support in making decisions that could have an impact on safety.
The Principle and the Experiences of Persons with Disabilities
Persons with disabilities are at greater risk of violence and abuse, whether by strangers or in the context of a trust relationship. Those who are most at risk are persons with disabilities who are living in an institutional setting, have severe disabilities or have mental health disabilities. Low income among persons with disabilities exacerbates the risk of violent victimization.
People with mental health issues are forced to live in poverty. In social work, there’s something called Maslow’s hierarchy of needs. Maslow was a gentleman who determined that there’s a hierarchy of needs that we need in order to be happy and healthy and mentally well, and it’s a pyramid and if you don’t have the things at the bottom of the pyramid, all of the things at the top aren’t going to do any good. You won’t be well. You need the things at the bottom. And at the very bottom of the pyramid is safety and security. If you’re living in poverty, you cannot be safe and secure. Poverty makes us crazy, it doesn’t keep us crazy, it makes us crazy in the first place. Unless we deal with poverty, people dealing with mental health issues, the numbers are going to go up, and soon it won’t be one in five, it will be one in two.
LCO Focus Group, Individuals with Mental Health Disabilities, Toronto, June 11, 2010
Despite the increased risk of victimization, the 2006 Statistics Canada Victims Services Survey reported that only 24 per cent of victim services agencies in Canada were able to provide services to persons with disabilities. As DAWN Canada pointed out to the LCO,
It is important to note that women with disabilities (physical, mental, sensory, chronic illness) experience a much higher rate of abuse of all types, than their nondisabled counterparts and more abuse than men who have disabilities. This is important to keep in mind, as it is often very difficult for women with disabilities to even leave the abusive situation in which they find themselves, let alone take legal action against their abusers. Often, women’s shelters and transition houses are not accessible to women with disabilities. Therefore, it would appear that it would be even more difficult for women with disabilities to access any legal help, especially if they could not find a safe haven first.
As well, public institutions may not be sufficiently equipped to respect and protect the safety of the persons with disabilities they serve. For example, persons with disabilities are less satisfied with the police response to their complaints than others, and have a less favourable view of the criminal justice system.
I was at one time, about 10 years ago, put on a Form 1, which means that you can be danger to yourself or others. I wasn’t a danger to anybody else, so I was obviously a danger to myself. When the police came to arrest me, he ordered me to kneel down in front and put my hands behind my back, then he proceeded to cuff me, after he cuffed me, he went over to my eyes and sprayed me with pepper spray for about 3 seconds. With pepper spray, it’s like riding a bull, every second seems like an eternity. They want to play judge and jury and executioner in the field. I don’t know what stimulates them to abuse and take advantage of vulnerable disabled people, I don’t really understand where it comes from.
LCO Focus Group, Aboriginal Organizations, Thunder Bay, June 16, 2010
There have been a number of initiatives in recent years to improve the relationship between persons with disabilities and the criminal justice system. For example, the Ministry of the Attorney General has developed a Vulnerable Victims and Family Fund to provide financial and court-based supports for victims of crime and families of homicide victims, and this includes coverage for disability-related supports, such as sign-language interpretation or real-time captioning, to enable equal participation in the criminal justice system. Very recently, the Ontario Minister of Community Safety and Correctional Services announced that the Ministry would be undertaking a review of how police officers respond to individuals with mental illnesses and will be examining best practices to develop recommendations for improvements.
The LCO reviewed the results of the Coroner’s Inquests into the deaths of 121 persons with disabilities between 1989 and 2010. The review identified the magnified risks to safety faced by some of the most vulnerable individuals with disabilities, including inappropriate or excessive use of restraints, lack of appropriate supervision or safety procedures in institutional settings, and inadequate discharge planning for those individuals with mental health disabilities transitioning from institutional settings to the community.
Persons with disabilities may not feel empowered to address institutional abuse or exploitation. There is often a significant power imbalance between the individual with a disability and the person or organization administering the law or program. For example, ARCH Disability Law Centre 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,
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.
Not surprisingly, persons with disabilities revealed lower than average perceptions of their personal safety and security.
Interpreting the Principle
This principle has its roots in the provisions of the CRPD that affirm the rights to liberty and security of the person; to freedom from torture or cruel, inhuman or degrading treatment; to freedom from exploitation, violence and abuse; as well as protections related to adequate standards of living and social protection and the attainment of the highest achievable standard of health. The CRPD more specifically identifies one particular concern about the abuse and exploitation of women and girls with disabilities. The right under section 7 of the Charter to security of the person and the right not to be deprived thereof except in accordance with the principles of fundamental justice is also applicable. The principle affirming a right to live in safety requires consideration of the socio-economic barriers faced by persons with disabilities, as well as the higher than average rates of abuse and exploitation experienced by persons with disabilities, and the challenges faced by persons with disabilities who experience abuse and exploitation in seeking services and supports.
The history of the way in which the lives of persons with disabilities have often been curtailed as a result of both well-meaning and less well-meaning interventions by others make this principle contentious. There is a risk that a principle of entitlement to live in safety may be interpreted in a manner that would encourage paternalistic interventions in the lives of persons with disabilities. Nevertheless, it is crucial that law and policy be designed and private actions be conducted in a way that the security of persons with disabilities not be threatened. Protection against abuse of this principle can be found in the application of the other principles, such as the principle of fostering autonomy and independence. Where the principle of facilitating the right to live in safety exists in tension with other principles, Section D.3 of this Chapter suggests a means of addressing tensions between principles, including tensions between the principle of the right to live in safety and other principles such as that of fostering autonomy and independence, or respect for dignity and worth.
6. Recognizing That We All Live in Society
Definition: This principle acknowledges that persons with disabilities are members of society, with entitlements and responsibilities, and that other members of society also have entitlements and responsibilities.
The Principle and the Experiences of Persons with Disabilities
All of us have multiple identities, ties, and communities; for those with disabilities, their experiences as persons with disabilities are only one part of that. To extend this point, persons with disabilities are members of the broader community, with which they have a wide range of ties, as well as reciprocal rights and obligations. The well-being of persons with disabilities – as citizens, as parents and family members, as workers and volunteers, as taxpayers and recipients of services – is closely connected to the wellbeing of the broader society. The reverse is, of course, true as well. Persons with disabilities, and the law as it affects them, cannot be considered as separate from this larger context.
Interpreting the Principle
The CRPD includes in its Preamble the realization that “the individual, having duties to other individuals and to the community to which he or she belongs, is under a responsibility to strive for the promotion and observance of the rights recognized in the International Bill of Human Rights”. In Unison defined citizenship as including “rights and responsibilities. It implies participation in and contribution to the systems and the ‘core’ services in which all Canadians can participate and to which most Canadians have access”.
A principle that recognizes the various communities to which persons with disabilities belong may strengthen the recognition of difference and diversity and add further dimensions to the right to participation and inclusion. It may also provide a helpful means of articulating and analyzing tensions that may arise between the rights of persons with disabilities and those of other members of the community.
This principle also recognizes that many demands are made on governments and private actors and it is not always possible to satisfy them. Many of these demands also relate to goals of inclusion in society, for example. This principle is not intended to subordinate the claims of persons with disabilities to the claims of others; rather, it is to recognize that the claims and entitlements of persons with disabilities sometimes affect others in society, just as the claims and entitlements of others affect persons with disabilities. In assessing these various claims, it will be important to refer to the other principles to ensure that the needs of persons with disabilities are not treated as lesser in importance than other claims and to see when they are of greater importance.
The Case Example below provides an illustration of how laws, policies and programs that affect persons with disabilities must be understood in the broader context of the role of these individuals in their communities and how those policies may relate to and affect that broader community.
CASE EXAMPLE: RECOGNIZING THAT WE ALL LIVE IN SOCIETY
Aboriginal Older Adults with Disabilities, Access to Community Care and On-Reserve Communities
Aboriginal older adults make up a relatively small proportion of their communities, as the Aboriginal population tends to be younger, on average, than other Canadian populations. In 2006, there were 242,495 Aboriginal people in Ontario, of whom Aboriginal older adults make up approximately 5 per cent (a Canada-wide figure). The Aboriginal population is relatively young because of higher fertility and birth rates. However, the number of older adults is expected to double by 2017, in part because of increasing life expectancy. Aboriginal older adults will increasingly represent a larger segment of the Aboriginal population.
Aboriginal older adults are more likely to live with a disability than non-Aboriginal older adults, and are likely to experience the onset of disability at a younger age. The majority of First Nations and Inuit older adults have experienced unhealthy living conditions and poor health for most of their lives. The rate of disability for on-reserve First Nations and Inuit adults is approximately 28 per cent. This is almost one and a half times the disability rate in the general population. First Nations older adults over 60 years of age with disabilities are more likely to report fair or poor health than those without disabilities. The lower health status of Aboriginal peoples results in Aboriginal older adults becoming dependent at an earlier age than their non-aboriginal counterparts.
An important element of many Aboriginal cultures is the emphasis placed on extended family and kinship groups for whom sharing and taking care of all members of the community are valued highly. For this reason, continuing care for Aboriginal older adults within the community is often preferred to institutional care in a long-term care home. The majority of Aboriginal older adults would prefer to receive care in their homes from paid caregivers or family members rather than moving into a long-term care home. Similarly, the majority of the children of these older adults would prefer that their parents receive home care from paid caregivers or family members. A Nova Scotia study found that among the factors influencing Aboriginal access to long-term care,
[t]here was a strong sentiment that it is culturally unacceptable to have a family member placed in a long term care facility even if they would be better off from a health care perspective. One respondent noted that community members would look down on the family. Several communities noted the importance of language and that potential residents, especially seniors suffering from dementia, would not be able to communicate with facility staff or other residents. In addition respondents indicated that families and potential residents do not want to be in a facility surrounded by non-Aboriginal individuals.
However, there are, in many reserve communities, significant challenges to providing care in the community. One of the issues is the severe shortage of adequate, accessible housing in many First Nations communities. A serious housing shortage on reserves contributes to the low socio-economic status experienced by First Nations older adults. The housing that does exist on reserve is often substandard and overcrowded. Many homes are in need of major repairs to structure, plumbing, heating and electrical systems. Over one third of First Nations adults live in homes requiring major repairs. Accessibility in homes and buildings on reserve is often lacking and may be a factor in forcing frail and disabled First Nations older adults to move to facilities, particularly long-term care homes, that can accommodate their disabilities.
As might be expected, community-based health services are also more difficult to access in Northern or remote communities. While the Ministry of Health and Long-Term Care funds community support and home-maker services in many First Nations communities, there are extra challenges in remote locations. In some remote communities, for example, nurses are available regularly but physicians fly in on a monthly basis. For 35 per cent of First Nations, primary care physicians are located more than 90 km away. In some cases, it is not economically feasible for smaller communities to support a health care facility and the recruitment and retention of qualified health care personnel can be difficult in remote communities. Many communities do not have adequate caregivers or community health representatives to provide community-based services to frail Aboriginal older adults. According to the Regional Longitudinal Health Survey, there is a significant discrepancy between needs for home care among First Nations seniors and services actually received, across a wide range of services. In 2011, the MOHLTC established a Trilateral First Nations Health Senior Officials Committee, consisting of senior-level representatives from Ontario, the federal government and First Nations, with the objective of identifying health service gaps for First Nations people living on-reserve and improving the integration and coordination of federally and provincially funded health services.
Jurisdictional issues may create barriers to the development of effective community supports for Aboriginal older adults who develop disabilities. Ontario has jurisdiction over the administration of health services in the province, except in relation to populations falling under federal jurisdiction which includes jurisdiction over “Indians” and reserves. The federal government takes the position that its responsibility for reserves does not extend to providing long-term care homes. The Ontario government has funded long-term care homes in four of Ontario’s 126 First Nations communities, in Akwesasne, Southwold, Ohsweken and Wikwemikong.
The federal government’s First Nations and Inuit Home and Community Care program (FNIHCC) in reserve communities offers community-based lower-level long-term care geared to providing minimal assistance with daily living activities and appropriate health care services, but does not provide the more intensive levels of care offered by institutional long-term care facilities. Ontario has developed a program specifically targeting Aboriginal health care, the Aboriginal Healing and Wellness Strategy (AHWS), which was launched in 1994 to promote the health and healing of Aboriginal peoples and to increase the cultural relevance of the health care services available to Aboriginal peoples within Ontario. The AHWS provides funding for many different programs including health centres, maternal and child centres, medical hostels, community workers, health outreach, shelters, healing lodges, treatment centres, translator and advocate services, but is not involved in the provision of long-term care. As a result, there is very little in the way of long-term care available to Aboriginal individuals within their home communities. As noted above, long-term care facilities located within First Nation communities are very rare and First Nations older adults on reserve may be required to move to a long-term care home outside their community, sometimes at great distances, or remain in the community but with inadequate care.
When individuals decide to apply for long-term care, there is no guarantee that they will be able to find a placement in a long-term care home that is in or near their home community. Currently there is a significant shortage of public long-term care homes in both urban and rural regions of Canada. The median wait time for a long-term care bed in Ontario in 2011 was 103 days, much longer than it was in 2005. Even a long wait does not ensure that Aboriginal older adults will be offered a place in their preferred long-term care home (such as one that is geographically closest to their community). In 2011, only 40 per cent of people being placed for the first time in an Ontario long-term care home were given their first choice of home. Long waits place considerable pressure on older adults to accept the first available placement even where it is not geographically or culturally appropriate.
As well, information about long-term care homes is often geared to non-aboriginal people and it is often unavailable in Aboriginal languages. This barrier to accessing information is complicated by the ambiguity over jurisdictional responsibility for health services to Aboriginal peoples. Aboriginal older adults may be confused about whether long-term care homes are available to them and, if so, which ones.
As a result of all of these factors, it may be necessary for Aboriginal individuals with disabilities to leave their home communities in order to obtain adequate care and supports. This may be a traumatic dislocation for Aboriginal older adults. Aboriginal older adults are more likely than their non-Aboriginal counterparts to have survived a traumatic event, such as child sexual abuse, residential school experiences, and/or relocation of their communities away from their ancestral territories. An important factor that may affect the transition of Aboriginal older adults into long-term care homes is their experience with residential schools, operated jointly by the federal government and churches from the 1920s to the mid-1990s. About 43 per cent of First Nations adults over the age of 60 and 47 per cent of those aged 50-59 attended these schools. The residential school experience has had an ongoing effect on the health and well-being of Aboriginal older adults generally. It has been suggested that the residential school experience might also partly account for the poorer health status of Aboriginal peoples as compared to their non-aboriginal counterparts. Survivors are at particular risk for low self-esteem and increased dependence resulting from the devaluation of their culture and loss of traditional ways of life. The move to a mainstream long-term care institution far from home may be particularly traumatic for residential school survivors, and even more so for those who develop dementia or other mental health or cognitive disabilities later in life.
Aboriginal older adults may also experience isolation on a spiritual level when they are denied the opportunity to practice their faith or become disconnected from their cultural roots. This may be exacerbated when they move into non-aboriginal long-term care homes lacking spiritual facilities such as healing lodges and access to spiritual leaders and ceremonies.
As well, the departure of older adults for long-term care outside the home community can also have a significant effect on the community. Aboriginal older adults may constitute the most important link in sharing knowledge of traditions and language with younger generations, as the highest proportion of Aboriginal peoples who know and speak their Aboriginal language within the Aboriginal population. Historically and in contemporary Aboriginal cultures, Elders play a central role in family life and are considered an integral resource in providing discipline, spiritual guidance, cultural knowledge and traditional teachings to younger members of the community. While not everyone who reaches a certain age may be considered to be an Elder, a status gained through years of training and the development of expertise, in most Aboriginal cultures older members are generally accorded great respect.  The necessity for Aboriginal older adults to leave their home communities to access needed care and supports thus has a significant effect, not only on the older adults themselves, but on their communities.
This Case Example highlights that, like all of us, persons with disabilities have responsibilities as well as rights. They have responsibilities to their families, to their particular communities and to the broader society, and laws, policies and practices should recognize these responsibilities and, where appropriate, support their fulfillment. This Case Example provides an example within the context of a particular history, culture and community, but it is also true in other contexts and at a broader societal level.
While the issues relating to shortage of community supports for Aboriginal older adults with disabilities can be understood in terms of the impact on the individuals with disabilities, it can also be helpfully considered in terms of the impact on their families and communities. To the degree that older adults with disabilities are not supported in their communities, they are not able to provide support to their families and to fulfil their community roles, a loss to their families and communities.
As well, the rights and responsibilities of persons with disabilities must be understood within the context of their communities – in this case, within the context of the history, culture and resources of Aboriginal communities.
As the principle of recognizing that we all live in society emphasizes, persons with disabilities, as members of society, have reciprocal responsibilities and obligations. There is a give and take between persons with disabilities and their families, their communities and broader society, which can be recognized and supported by laws, policies and practices.
D. From Aspiration to Application: Addressing Challenges In Applying The Principles
As noted in earlier in this Chapter, because the principles are, by their nature, abstract and aspirational, challenges arise in translating them into a framework that can provide specific, practical assistance to law and policy makers. This section outlines some of the approaches that the LCO has adopted to meet the various challenges of application.
1. Incorporating Lived Experience
As important as it is to identify principles for the law as it affects persons with disabilities, these principles, without more, are an insufficient basis for an evaluative framework for this area of the law. They must be grounded in a close attention to the lived experiences of persons with disabilities. Applications of the principles which do not incorporate and reflect the lives of persons with disabilities will lead to ineffective programs, policies and laws. The LCO’s Case Examples and the extended analysis in Chapter V of this Final Report provide some illustrations of how close attention to the experiences of persons with disabilities can inform and illuminate the application of the principles.
This attention must include an understanding of how the experiences of persons with disabilities are influenced by their life courses. For all of us, how we encounter each stage of life is profoundly influenced by the resources and perspectives we have developed to that point. Barriers or opportunities experienced at one stage will reverberate throughout the course of life. For example, disability-related barriers in accessing adequate education may have life-long effects on employment prospects, and therefore on the socio-economic status of persons with disabilities, which will in turn have wide-ranging consequences for health, access to housing, ability to access the law, and many other aspects of life.
Laws are generally developed on an issue-by-issue basis, as particular problems arise or are identified. People do not, of course, experience their lives as a set of separate issues, or segregate aspects of their identities. For example, an individual may be a mother and a person with a disability: she does not cease to be a mother when she seeks disability-related services, or to have a disability when she seeks childcare or recreation programs for her children. The person with a disability seeking education is not a separate person from the one later seeking employment; these are two stages in a single experience. The categories through which we understand law – family, employment, housing, income supports, human rights for example – do not necessarily reflect the ways in which persons with disabilities experience the law. It is therefore useful to take a person-centred approach in understanding the law and applying the principles, and to see the law holistically, rather than as a series of separate systems.
2. The “Implementation Gap” – Taking a Broad View of “the 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 persons 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 persons with disabilities may fall short of their goal or have unintended negative consequences. There are many reasons for this, as outlined in Chapter II, 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” when applying the principles. 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 the Framework, 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 with disabilities 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.
3. Relationships Between Principles
As the brief discussions of the principles above indicate, the principles cannot be neatly separated from each other, and are interrelated in multiple ways. The principles of dignity and independence, for example, cannot be achieved without respect for the principle of safety. The principle of safety has sources in the respect for the inherent worth and dignity of persons with disabilities.
However, there may also be tensions between the principles. For example, two principles may be in tension in relation to the same individual. A frequently raised issue is the involuntary treatment of persons with mental health disabilities. The ability to make choices about one’s own medical treatment is fundamental to autonomy and physical integrity. On the other hand, some have argued for a “right to be well”, and that allowing persons with mental health disabilities to refuse treatment may undermine their achievement of the other principles, such as living in safety and social inclusion. Such tensions are not necessarily amenable to simple solutions, but it is important to acknowledge and address them.
Tensions between principles may also arise in relation to two different persons or two different communities. For example, members of the Deaf community may prefer as an educational option schools specifically for the Deaf community, where instruction is provided in ASL, to ensure the continuation of their language and culture, whereas the intellectual disabilities community may prefer integration of students with intellectual disabilities into mainstream schools. Here the principles of respect for difference and diversity, as well as differing visions of inclusion and participation, come into tension.
In assessing tensions between principles, it is essential to be sensitive to the contexts in which those tensions arise. What specific rights or outcomes are at issue in that particular situation? Who might be affected? How might a reduced implementation of one principle affect the achievement of other principles? That is, the tensions must be examined in a nuanced and holistic manner.
As well, an examination of tensions, particularly between the principles of safety and of independence and autonomy, should be sensitive to the larger social context in which such tensions may exist. In the example cited above regarding involuntary treatment, one of the factors at play may be the policy and resourcing decisions that continue to result in a lack of other types of supports for persons with mental health disabilities. In such a case, the real issue may not be a tension between the principles of autonomy and security, but the impact on both principles of the limited available appropriate resources to maximize both. That is, we should not be too quick to reduce a challenge or difficulty to an instance of tensions between the principles.
One potential pathway to resolving tensions that arise between principles is to create a hierarchy among the principles in order to determine which principle should prevail in the event of a tension with another principle. One advantage of such an approach is that it is predictable, as well as simple, to apply. However, the mechanical nature of such an approach ignores the diversity of the issues where such tensions arise. It also ignores the interrelatedness of the principles. To elevate the principle of dignity, for example, above all other principles ignores the potential that restrictions in the fulfillment of other principles, such as autonomy or participation, might contribute to an overall lessening of respect for the dignity of older persons. Hierarchical approaches have generally been rejected in the area of rights for this reason: for example, the preamble of the CRPD reaffirms “the universality, indivisibility, interdependence and interrelatedness of all human rights and fundamental freedoms”. The Ontario Human Rights Commission (OHRC) has recently completed a comprehensive Policy on Competing Human Rights which emphasizes that no right is absolute, but is inherently limited by the rights and freedoms of others, and that “all rights are equally deserving and an approach that would place some rights over others must be avoided”.
The concepts of “reconciling” or “balancing”, which have been explored in the context of competing rights, are useful to consider in this context. Reconciliation is an approach that attempts to give proper recognition of both principles to the greatest degree possible. Balancing may involve the weighing of one principle against the other. Using a balancing approach may have the disadvantage of creating the impression that the principles are actually competing and need to be considered hierarchically. The OHRC’s Policy on Competing Human Rights states, “Where rights appear to be in conflict, Charter principles require an approach that respects the importance of both sets of rights, as much as possible…[P]otential compromises to both sets of rights, recently described as ‘constructive compromises’ by the Ontario Court of Appeal, are part of the reconciliation process.” However, there may be cases where reconciliation is impossible, and one right may be forced to give way.
An important element of addressing tensions that may arise between principles is to recollect that the principles themselves have been developed as a means of responding to the marginalization, exclusion and oppression of persons with disabilities. That is, in considering how to resolve tensions between principles, one might consider the particular types of barriers that the principles were intended to address, and how any specific approach to resolving the tensions might impact on the achievement of the broader goals of an anti-ableist approach to the law.
It is also important to realize that the principles in tension should not be viewed in isolation: in trying to resolve tensions, it is often helpful to ask how the other principles that might not be so obviously implicated help inform an appropriate resolution.
4. Addressing Evolving Realities and Recognizing Constraints
The application of the principles cannot be static. The circumstances of persons with disabilities will continue to change as laws, attitudes, demographics and other aspects of the broader environment change. As well, understandings of disability continue to evolve, and new perspectives are heard. What might be considered conducive to attainment of the principles at one time may appear unhelpful or inadequate at a later date.
As well, even where one aspires to implement these principles to the fullest extent possible, there may be constraints in doing so, such as resource limitations or competing needs or policy priorities.
Therefore, a progressive realization approach to the principles may be adopted, with the goal of continuous advancement. Efforts to improve the law should be continually undertaken as understandings about the experience of disability evolve, or as resources or circumstances make progress possible. Where constraints exist, principles should be realized to the greatest extent possible at the current time, and concrete steps for future improvements continually identified and planned.
In the realm of international human rights law, the framework of “protect, respect, fulfill” is used to analyze and promote the implementation of human rights obligations. In this analysis, states must address their human rights obligations in three ways:
The obligation to respect – States parties must refrain from interfering with the enjoyment of rights.
The obligation to protect – States parties must take immediate steps to prevent violations of these rights by third parties and provide access to legal remedies for when violations do occur.
The obligation to fulfill– States parties must take appropriate legislative, administrative, budgetary, judicial, promotional and other actions towards the full realization of these rights.
This approach can be useful in analyzing and promoting the realization of the principles in the law as it affects persons with disabilities, or indeed any group. At minimum, governments must not violate the principles (i.e., they must respect and protect them), but complete fulfillment of the principles may be progressively realized as understandings of the issues facing persons with disabilities become more sophisticated and resources, including financial resources and technology, increase.
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