Public policies, social programs and the laws that govern them often reflect the dominant approach of the era in which they are developed. The values underlying the Social Inclusion Act and its accompanying draft regulations express a particular perspective on disability issues or models of disability. The same is true for the legislation and policies that preceded the Act. In this section, we provide a brief history of the various approaches to providing services and supports to people with intellectual disabilities that have been employed in Ontario. This historical perspective provides important context for our argument that service rights and mechanisms to enforce those rights must be included in the Social Inclusion Act framework. In addition, an historical understanding of the relationship between governments, service providers and people with intellectual disabilities informs the kinds of enforcement mechanisms that we propose later in the report.
A. Brief History of Ontario’s Approach to Providing Services and Supports to People with Intellectual Disabilities
1. The Pre-Institution Era
Prior to the introduction of institutions, there were virtually no government policies, services or supports specifically for people with intellectual disabilities in Ontario. People with intellectual disabilities and their families were viewed as objects of pity or charity. Typically, families were required to care for their child or adult family member at home. If families were unable to provide for all the needs of their loved-ones, communal support networks represented by friends and neighbours offered assistance. Local government councils could also be petitioned for financial aid. People with intellectual disabilities who were left on their own often ended up in prisons, where conditions were crowded and unsanitary, and where some people with disabilities were treated worse than convicted criminals.
Society’s treatment of people with intellectual disabilities can be captured by the common terminologies that were used to describe them, including “imbeciles”, “idiots”, the “feeble-minded” and “morons”. The medical community restricted its examination of people with intellectual disabilities to the “degree of idiocy” suffered by the individual. This language illustrates that people with intellectual disabilities were considered different than “normal” people, consequently it was acceptable to treat them differently. Such treatment was almost always accompanied by stereotypes about abilities (or lack thereof), and in particular, the assumption that people with disabilities were unable to lead independent lives.
2. Institutionalized Care for People with Intellectual Disabilities
In 1839, Upper Canada passed legislation to formally permit the establishment of provincially funded institutions, entitled An Act to Authorize the Erection of an Asylum within this Province for the Reception of Insane or Lunatic Persons. In 1876, Ontario opened its first large institution, the Ontario Asylum for Idiots, in Orillia.
Initially, the concept of institutions was based on the notion that there was a better way to assist people with intellectual disabilities. Institutions were conceived as boarding houses, where people could go for short periods of time (typically no longer than five years), and be taught skills that would assist them to integrate back into the community and live independently. Alternatively, institutions, like large hospitals, were places where people could go to have their disability “fixed”, as promoted by the medical model of disability. The medical model viewed disability as an abnormality or flaw that was located in the individual and sometimes could be treated or cured. Doctors urged parents to place their children in institutions, where they would be with “people like themselves”, who would better understand them, and be happier not having to face the difficulties of living in society. Institutions were paternalistically seen as places that would protect people with intellectual disabilities from the unintended consequences of industrialization, such as poverty, crime, poor working conditions, lack of adequate housing, disease and poor hygienic conditions. It was felt that people with intellectual disabilities would be well cared for and protected. Given the paucity of services and supports available to people with disabilities and their families, publicly-funded institutions were often the only choice.
There were also less humanitarian reasons for the development of institutions. Eugenicists believed that people with intellectual disabilities, among others, contributed to social problems and unrest, and therefore should be isolated and eliminated from the general population. People with intellectual disabilities were blamed for social problems such as poverty, prostitution and the existence of slums. Tragically, many Canadians with intellectual disabilities were subject to forced birth control and sterilization. Ontario was not immune from the influence of the eugenics movement. It is likely that forced sterilizations occurred, and there is evidence that people with intellectual disabilities were often placed in institutions during their child-bearing years, where men and women were segregated from one another. Films produced by people with intellectual disabilities document the devastating effects of the eugenics movement. Not only were people with intellectual disabilities denied the basic human rights and freedoms of bearing children and having sexual relationships, they were also subjected to medical procedures without their knowledge or consent. Many people did not discover that they had been victims of the eugenics movement until decades after their release from institutions.
Conditions in institutions were often appalling. ‘Inmates’ lived in dormitories with tens or hundreds of others, with no curtains on the windows and no privacy between beds. The doors were locked from the outside, and abuse among the inmates themselves was not uncommon. Typically there were no protections and no involvement from the staff at night. Bathrooms afforded no privacy either; rows of open stalls without walls or doors were common. People with intellectual disabilities were often forced to work without pay. Some ‘inmates’ even performed the same kinds of jobs that staff members were paid to do, such as work in the kitchen or hospital, or feeding other patients. Documentaries by people with intellectual disabilities have exposed the lack of stimulation, fear of punishment and degrading treatment that characterized institutional life.
Sexual, physical and emotional abuse of people with disabilities by staff were rampant in institutions. However, many who suffered abuse did not report it, as there was no way to do so. It is unlikely that abuse would have been reported even if there had been reporting mechanisms in place. ‘Inmates’ were extremely reluctant to speak out about the abuse they experienced for fear of punishment or negative repercussions.
Institutions were deliberately built away from cities. Living in rural areas was justified as a way to provide fresh air and open spaces that would contribute to the over-all health and well-being of people with disabilities. Today, it is recognized that building institutions far from cities served to segregate people with intellectual disabilities from society. Social isolation made it extremely difficult for ‘inmates’ to maintain relationships with family or friends, and meant that abuse and control of ‘inmates’ by institutional staff could not be threatened or exposed. At times parents were told that their son’s or daughter’s stay in an institution would be temporary, only to discover that their son or daughter could not be released without consent of a psychiatrist. Locating institutions in rural areas also made it difficult for ‘inmates’ to escape. Those who did attempt escape were often caught, returned to the institution, and punished by being stripped of their clothing, soaked in cold water, or placed in a cell without heat or blankets.
Unfortunately, the lack of developmental services and supports outside of institutions often meant that large institutions like the Ontario Asylum for Idiots continued to grow. Although its initial capacity was 150, demand exceeded this number and additional land was purchased to expand the facility. In 1961, Huronia Regional Centre, as the Ontario Asylum was renamed, housed 2,800 people with intellectual disabilities. Huronia Regional Centre was not the only large institution run by the province of Ontario. In the 1970s, at the height of the institutional era, there were approximately 30 large and small institutions for people with intellectual disabilities in Ontario.
There were several reasons for continued demand for space in institutions. There was a fear that people with disabilities were living longer lives. The greater the number of people with intellectual disabilities, the greater the threat to society would be, hence they needed to be removed from society and placed in institutions. Alternatively, some parents were convinced by the medical community that institutionalizing their son or daughter would be beneficial to the child and the rest of the family. Institutionalizing a child meant that the costs and responsibility of caring for him or her would be transferred to the state instead of being borne by the family. Because an intellectual disability was seen as a medical condition, it made sense to place a person in a specialized facility. Indeed, many of the institutions changed their names from asylums to hospitals to signify this approach, and many were staffed by health care practitioners. People with intellectual disabilities were no longer called ‘inmates’, but were now ‘patients’, further entrenching the medical model of disability. Typically, living in an institution meant trading control over one’s own life and decisions for lifelong “care”.
Institutions were eventually exposed as places of extreme cruelty, abuse and inhumane treatment, and consequently began being shut down, with the last large institution in Ontario closing on March 31, 2009. Several factors contributed to the closure of large institutions, including lack of funding, insufficient demonstration of rehabilitation, recognition that drugs were being overused to control behaviour, gradual social acceptance that people with disabilities were not dangerous or deviant, and the application of values of equality and human rights to disability issues. Public awareness of the extremely poor living conditions within institutions also played a role. Perhaps most significantly, the adoption of community living as a philosophy offered an alternative to institutionalized care. Supporters of community living tirelessly drew attention to the atrocious conditions in institutions, and demonstrated that people with intellectual disabilities could live and participate in the community with appropriate services and supports.
3. The Developmental Services Act
In 1974 Ontario passed the Developmental Services Act. The Act still governs services for people with intellectual disabilities today. Generally, the Mi