9 Commentary One

Marc Workman

Throughout this volume, contributors have described shocking violations of the rights of people with disabilities: compulsory sterilization, scientific experimentation, institutionalization, and euthanasia. The most deplorable of these actions primarily took place prior to the emergence of the disability rights movement in Canada in the 1970s.¹ It is no coincidence that such atrocities occurred during a time when disabled people were largely voiceless.

For decades now, people with disabilities have fought to influence both government policy and public attitudes toward disability. As a result, important legislative protections have been adopted, such as the Charter of Rights and Freedoms, the Canadian Human Rights Act, and, more recently, the United Nations Convention on the Rights of Persons with Disabilities. Although significant progress has been achieved, disabled Canadians are still worse off when it comes to educational achievements, participation in the labour force, and income relative to those without disabilities.² Moreover, harmful attitudes about disability continue to be demonstrated through discriminatory immigration policy and negative perceptions of parents with disabilities. By providing a disability rights perspective in this commentary, I hope to illuminate some of the attitudes about disability that were behind past eugenic initiatives and that continue to persist today. Additionally, this consideration of disability advocacy will highlight the importance of collective action for those living with disabilities.

DISABILITY RIGHTS IN CANADA

The concept of human rights has been a powerful force in the disability rights movement in Canada. In fact, as Henderikus J. Stam and Ashley Barlow observe in chapter 1, the primary justification for repealing Alberta’s Sexual Sterilization Act was that it violated fundamental human rights. Since its own inception, the disability rights movement has fought to expand human rights protections for Canadians with disabilities. The disability rights movement in Canada goes back to the 1970s and the founding of the Coalition of Provincial Organizations of the Handicapped (COPOH), later known as the Council of Canadians with Disabilities.³ Certainly, there were organizations established earlier that advocated to improve the lives of people with disabilities—including the Canadian Federation of the Blind, the War Amps, and the Canadian Paraplegic Association, today known as Spinal Cord Injury Canada—but these predecessor organizations tended to focus on a specific impairment (e.g., blindness) or a particular subset of disabled people (e.g., war wounded).⁴ It was not until COPOH that a national organization, comprising primarily disabled people themselves, fighting on behalf of all Canadians with disabilities, was established.

HUMAN RIGHTS LEGISLATION IN CANADA

One of the most important victories in the early years of the Canadian disability rights movement was in successfully persuading the Liberal government in the early 1980s to include mental and physical disability as a protected status in the Canadian Charter of Rights and Freedoms.⁵ Those familiar with the Charter may not realize that the initial draft of section 15 (the equality clause) made no mention of disability. An arguably more significant deficiency was that the first draft offered an exhaustive—rather than illustrative—list of protected groups, which, if adopted as initially written, would have meant that only those groups that were listed would have been guaranteed equality under the Charter. Thanks to significant pressure from the disability community, along with lobbying by other equality-seeking groups, the version of the Charter that was adopted included disability as a protected group and made the list of protected groups illustrative.⁶

The importance of making the list illustrative rather than exhaustive has been demonstrated in numerous legal cases, including Vriend v. Alberta in 1998.⁷ In its decision in this case, the Supreme Court of Canada read sexual orientation into the Charter as a characteristic analogous to those that were enumerated in section 15. In other words, even though the Charter does not explicitly mention sexual orientation in section 15, this characteristic is similar enough to the characteristics that are listed so as to receive the same sorts of protections and guarantees as the groups mentioned. Additional grounds that the court has determined to be analogous are marital status and citizenship. The result has been that millions of Canadians have been guaranteed constitutional protection from discrimination who otherwise would not have.⁸

Notably, disability was the only class to be added to the Charter between the initial draft and the version that was ultimately adopted, which indicates the extraordinary work on the part of disability advocates.⁹ Because disability was included as a protected ground, Canadians with disabilities have been able to challenge government policies across Canada that discriminate on the basis of disability. One such case was Eldridge v. British Columbia, which ultimately made it to the Supreme Court.¹⁰ In its decision, the court found that the policy of the British Columbia government, which failed to provide sign language interpretation to deaf citizens who were attempting to access the health-care system, was a violation of section 15 of the Charter. What makes the Eldridge case so significant is the court’s recognition that respecting a citizen’s right to equality will sometimes require that governments—and those operating on behalf of governments—take extra steps to ensure that benefits of the law are equally available to all. The court found:

Adverse effects discrimination is especially relevant in the case of disability. In the present case, the adverse effects suffered by deaf persons stem not from the imposition of a burden not faced by the mainstream population, but rather from a failure to ensure that deaf persons benefit equally from a service offered to everyone. Once it is accepted that effective communication is an indispensable component of the delivery of a medical service, it is much more difficult to assert that the failure to ensure that deaf persons communicate effectively with their health care providers is not discriminatory.¹¹

This decision makes clear that a provincial government cannot avoid violating the Charter by claiming that it is treating citizens with and without disabilities the same. If a benefit of the law is not equally available to someone as a result of her disability, then the government will have to take certain steps—what is often called “reasonable accommodation”—to enable that person to access the benefit.

Despite the importance of securing protection from discrimination in the Charter and in human rights statutes across the country, there are limitations to how much progress can be achieved under these laws. First off, they are in essence reactive. Human rights legislation does not require governments or businesses to proactively identify accessibility barriers and systematically remove them. Instead, once a person experiences discrimination, they can file a complaint or launch a lawsuit—assuming, that is, they have the resources, financial and otherwise, to embark on a process that often takes several years and can be very expensive.¹² Moreover, if they are successful in a complaint against Company A, there is no guarantee that Company B, which offers a similar service, will offer the accommodation without also having to be taken through the human rights process. In other words, barriers must often be removed one at a time. For these reasons, beginning in the mid-1990s, many in the Canadian disability rights movement began to turn their attention to comprehensive accessibility legislation to supplement the human rights protections that had already been won.¹³

ACCESSIBILITY LEGISLATION IN CANADA

Although the United States had enacted the Americans with Disabilities Act of 1990 (ADA), it was not until 2005 that Canada adopted the first example of this type of legislation, the Ontarians with Disabilities Act (ODA).¹⁴ Disability advocates denounced the ODA, however, primarily because compliance was voluntary. Without proper enforcement, the advocates argued, the legislation would be meaningless. Following adoption of the ODA, disability rights advocates in the province—led by David Lepofsky, chair of the Ontarians with Disabilities Act Committee—continued to press the government to enact strong and effective disability legislation. In 2005, their work was rewarded when the Ontario government passed the Accessibility for Ontarians with Disabilities Act (AODA).¹⁵

What distinguishes accessibility legislation like the AODA from human rights legislation like the Charter is that while the latter is reactive, the former is decidedly proactive. Like the ADA before it, the AODA relies on accessibility standards. It requires the Ontario government to work with the disability and business communities to develop standards across a range of areas—transportation, customer service, public spaces, and others—that outline exactly what is needed to make the province fully accessible to Ontarians with disabilities. Ideally, under this approach, a disabled Ontarian no longer has to wait until they experience discrimination and then end up in an arduous human rights complaint process; instead, the standards are agreed to by all from the outset, and the government simply needs to enforce them. Unfortunately, due to a lack of enforcement, the AODA also has not fully lived up to its promise.¹⁶

Since Ontario’s enactment of the AODA, similar legislation has been adopted in Manitoba and Nova Scotia, and the Government of Canada had introduced federal accessibility legislation with The Accessible Canada Act (Bill C-81), which garnered unanimous support in the House of Commons in May of 2019.¹⁷ It is important to note that all of the legislative victories highlighted above were the result of concerted and sustained efforts from the disability rights movement in Canada. These types of changes do not happen without significant efforts to bring the government and the public on side.

DISABILITY TODAY

It has been nearly forty years since the Charter was adopted in 1982 and more than thirty years since section 15 (the equality clause) came into effect.¹⁸ More than twenty years have passed since the Eldridge decision, and the AODA has been in place since 2005. It is worth considering how Canadians with disabilities are currently faring from a socioeconomic perspective.

According to Statistics Canada’s 2012 Canadian Survey on Disability, nearly twice as many people without disabilities have a bachelor-level diploma or degree compared to those with disabilities (27 percent compared to 14 percent).¹⁹ Not surprisingly, a similar imbalance also exists in employment outcomes. Just under half (47 percent) of working-age people with disabilities are employed, compared with 74 percent of the population without disabilities. This disparity in employment prospects results in a significant income gap. The results of the 2010 National Household Survey showed that the median income for working-age people with disabilities was $10,000 less than those without disabilities ($21,420 compared to $31,160).²⁰ These statistics demonstrate that the fight for equality and inclusion is not yet over. The disability community continues to push for social change with a view toward closing the persistent gaps between those with and without disabilities.

IMMIGRATION AND DISABILITY

One long-standing issue that the disability community has attempted to resolve is what is perceived to be a discriminatory immigration policy in Canada.²¹ Immigration policy played several key roles in the eugenics movement. Nearly every chapter in this volume refers to immigration policy and its relationship to eugenics. Both Diana Mansell and Mikkel Dack outline the evidence suggesting that a primary reason for passage of the Sexual Sterilization Act in Alberta was a belief that the province was being overrun by immigrants from central and eastern Europe. Although Dack goes on to argue that this fear of immigration cannot adequately explain why the act was expanded in 1937, it is clear from reading this volume that in many instances eugenicists and their supporters throughout Canada and the United States were motivated by prejudice against immigrants and that immigration policy was used as a tool to prevent the “unfit” from entering their respective countries and multiplying.

Today’s immigration policy no longer entails the racially motivated discrimination that it did during the height of the eugenics movement; however, many in the Canadian disability rights movement believe that the existing policy continues to discriminate against those with disabilities.²² Section 38(1)(c) of the Immigration and Refugee Protection Act states that a foreign national is inadmissible on health grounds if their health condition “might reasonably be expected to cause excessive demand on health or social services.”²³ According to Immigration, Refugees and Citizenship Canada, approximately one thousand applicants for permanent or temporary residence are ruled inadmissible for medical reasons each year.²⁴

For many years, disability advocates have argued that this clause enables blanket discrimination against people with disabilities wishing to immigrate to Canada.²⁵ Advocates have been calling for its repeal and, in December 2017, were joined by the House of Commons Standing Committee on Citizenship and Immigration, which recommended the full repeal of section 38(1)(c). Canada’s immigration minister, Ahmed Hussen, inaugurated a threefold increase of the cost threshold—that is considered excessive—which took effect on June 1, 2018, meaning that approximately 75 percent of those people with disabilities or chronic health conditions previously rejected on medical grounds will no longer be deemed inadmissible.²⁶ The government is expected to completely abolish section 38(1)(c) at a future date. Although disability advocates continue to call for a full repeal of the clause in question, the government’s action demonstrates steady progress in the disability rights movement in Canada.

PARENTING AND DISABILITY

As noted throughout this volume, one of the primary aims of eugenic practices such as sterilization was to prevent people with disabilities from passing on their “defects” to future generations. Less remarked upon, though, is the fact that these policies were often enacted to prevent people with disabilities from becoming parents at all—whether the children would inherit the disability or not. Section 6(1) of the Sexual Sterilization Act, for example, identifies two conditions according to which a compulsory sterilization could be ordered:

If . . . the Board is unanimously of the opinion that the exercise of the power of procreation by that person (a) would result in the transmission of any mental disability or deficiency to his progeny, or (b) involves the risk of mental injury either to such person or his progeny, the Board may in writing direct such surgical operation for the sexual sterilization of that person as may be specified in the written direction.²⁷

The first condition refers to transmission from one generation to another, but the second does not. Moreover, the second condition refers to mental injury to the person being considered for sterilization, which implies that the second condition is not related to transmission. Finally, the act allowed for compulsory sterilization of individuals labelled “mental defectives,” which was defined as “any person in whom there is a condition of arrested or incomplete development of mind existing before the age of eighteen years, whether arising from inherent causes or induced by disease or injury.”²⁸ Taken together, these parts of the act indicate that although a primary concern may have been transmission of what were considered undesirable conditions, sterilization could be ordered even in cases where transmission was not possible, as in the case of someone whose condition was the result of disease or injury.

In chapter 2, Douglas Wahlsten demonstrates that the scientific evidence available at the height of the Alberta eugenics program actually undermined the approach adopted by the Alberta Eugenics Board. The science of genetics—even as it was understood at the time—indicated that sterilizing people at the levels undertaken by the province would have had an insignificant influence on the average IQ of the general population. Even more disturbing, Wahlsten is able to point out that the evidence available at the time would have shown that a more significant influence on IQ could have been achieved by implementing initiatives to improve social conditions for precisely those sorts of individuals who ended up being sterilized.

As noted above, however, what motivated eugenicists was not just the fear that “defects” would be passed on; many also had concerns about the ability or inability of people with disabling traits to adequately parent their offspring. As Stam and Barlow note in chapter 1, even as late as the 1970s, advocates lobbied the Alberta government to reintroduce eugenics legislation, arguing that “people certified to be mentally unfit to become parents should have their reproductive capabilities curtailed.”²⁹ A key element of this argument is that it applies whether or not transmission of a condition will take place. From an additional disability studies perspective, one can state that disabled parents still face the default assumption that they will be unfit parents. It is only after disabled parents prove that they are capable that they are permitted to be parents in Western societies, as the mental hygiene and social medical counselling programs of the 1920s, in particular, have claimed.³⁰ It is important to keep this development in mind, as these sorts of attitudes are alive and well today. Parents with a variety of disabilities regularly face questions about their fitness to parent. All too often, parents with disabilities are presumed to be unfit and are expected to prove otherwise to friends and family, the general public, and government officials.³¹

In one heartbreaking case, negative presumptions about a disabled couple’s ability to care for their child had terrible consequences. Erika Johnson and Blake Sinnett are a blind couple in the United States whose baby was removed from their custody shortly after Johnson gave birth in 2010.³² A nurse observed Johnson experiencing some difficulty breastfeeding—not an unusual experience for a new mother—only this time, rather than offering additional support to the new parents, the nurse wrote on the chart: “The child is without proper custody, support, or care due to both of [the] parents being blind, and they do not have specialized training to assist them.”³³ Harkening back to Diana Mansell’s chapter, we observe here again the power a nurse can have in these situations. As a result of the nurse’s observation, the Missouri Department of Social Services removed the baby from the parents’ custody. It was not until fifty-seven days later—following a significant outcry from blind people, including blind parents—that a judge ordered that the baby be returned to the parents.³⁴ Unfortunately, cases similar to this one are not unusual, particularly for parents with developmental disabilities.

CONCLUSION

What I have tried to highlight in this commentary is the extent to which the disability rights movement has influenced government policy and public attitudes about disability in Canada. Major legislative and legal achievements have occurred since the 1970s and continue to take place. People with disabilities experienced deplorable treatment throughout the twentieth century—largely resulting from the eugenic beliefs and practices examined and detailed in this book. Unfortunately, even with the significant progress that has been made in legislatures and courts, socioeconomic indicators continue to show serious gaps between those with and those without disabilities. The types of attitudes that motivated eugenicists—that disability is an individual problem, that disabled people are an economic burden, that the world would be better off without disability—are very much alive and well today. These attitudes are reflected in contemporary discussions of immigration policy or parenting with a disability, as I have highlighted, but also in debates about prenatal genetic testing and assisted suicide. The contributions in this volume are important to the disability rights movement, as they provide a valuable historical context to the fight for equality taking place today. At the same time, consideration of the contemporary experience of people with disabilities can illuminate the study of the eugenics movement by uncovering some of the deeper motivations and attitudes about disability—beliefs that persist today and continue to shape the lives and experience of those living with disabilities.