On April 15, Patty Baird was the first disabled adult living at Participation House, a residential institution for disabled adults in Markham, to die from COVID-19. She was 52 years-old. Her death was followed by the passing of Martin Frogley, another resident of Participation House, and the infection of 36 other residents.
While official “deinstitutionalization” was widely celebrated after the closure of the Huronia Regional Centre in 2009, a facility with a terrible history of violence against disabled people, institutionalization continues in the systematic treatment of persons with disabilities. These recent cases during the coronavirus pandemic demonstrate the need for comprehensive reform, if not total abolition, of group homes, prisons, psychiatric institutions and long-term care facilities.
In 2009, Ontario was slated to end institutionalization after nearly 50 years of research and advocacy for the closure of long-term institutions. The province’s first set of recommendations for the transition from institutionalization to community living for disabled people was the 1971 Williston Report. Lawyer Walter Williston urged the government to move forward on deinstitutionalization after public inquiries into a death at a provincially-run institution, and reports of abuse outside of the system. A year later, the 1972 Welch Report urged “Wherever feasible, services should be provided in a community setting as an alternative to institutionalization.”
Surely, the 42 beds that persons with disabilities are confined to at Participation House do not constitute a “community setting” as a viable alternative to institutionalization. People First of Canada and the Canadian Association of Community Living define institutionalization as:
Any place in which people who have been labelled as having an intellectual disability are isolated, segregated and/or congregated. An institution is any place in which people do not have, or are not allowed to exercise, control over their lives and their day-to-day decisions.
The scenes at long-term care institutions like Participation House today are reminiscent of the plight of those in custodial institutions for disabled persons throughout the late nineteenth and early twentieth century in Canada. Decades of documentation by provincial inspectors—going as far back as the 1849 Narrative of the Recent Difficulties in the Provincial Lunatic Asylum—note decrepit conditions at institutions where residents were left sitting in their own feces and urine for days, crying out for help. The scenes described in institutions over 100 years ago would in some cases be no different than the ones we see today in neglected long-term care homes, such as Residence Herron and Lynn Valley. Though government-run institutionalization formally ended in Ontario in 2009, group homes, psychiatric facilities and prisons have transformed into present-day versions of the moribund institutions from a century ago.
Throughout the 1970s and 1980s government reports combined with unrelenting activism from People First and the wider independent living movement to push for the closure of formal institutions in Ontario. However, municipalities increasingly protested the transition to group homes over NIMBY-like fears of disabled people “wandering the streets,” warning of decreased property values to mask their blatant ableism. Studies showed that there was no association between property values and the presence of group homes; in some cases, the existence of a group home actually increased property values. These sorts of reactions typify the irrational fear municipalities had of allowing disabled people in their midst.
While the Independent Living Movement should be given credit for their fight for deinstitutionalization, the rise of neoliberalism was also responsible for the increasing failures of the institutional system. The 1985 Ontario Research Report on Group Homes found that large scale group homes recreated the carceral settings they were trying to shift away from. Despite this, the report urged the development of large-scale group homes as they were the most cost-efficient form of community housing.
Private property and municipal ableism
During the move towards deinstitutionalization in the 1990s and 2000s, Toronto’s boroughs and neighbouring cities developed intensive bylaws for group homes, following encouragement from the province, to limit their proliferation. The City of Markham, where Participation House is located, introduced measures including minimum distancing, rigorous approval processes and zoning restrictions limiting group home-type buildings.
The Toronto boroughs of Etobicoke and Scarborough, and the City of Niagara Falls passed bylaws that required amendments to their municipal codes each time a new group home was going to be built. Minimum separation distances, put up in most Ontario cities, maintain that group homes cannot be within 600 to 1,000 metres of another group home. Only as recently as 2011 did municipalities start removing their minimum separation distance rules, following several unsuccessful cases brought to the Ontario Human Rights Tribunal. Many municipalities still maintain these discriminatory bylaws, including the City of Ottawa.
Many of Markham’s group home bylaws were repealed by the Ontario Ministry of Municipal Affairs and Housing, due to their violation of the Ontario Human Rights Code. While many of these bylaws have since fallen, a 2015 report stated that a, “significant barrier to the creation of shared housing is the need to fit the form of housing to the existing zoning permissions, as opposed to the actual needs of residents and groups.” Historically, municipal bylaws primarily function to serve the needs of private property owners and, as a result, seek to maintain segregated municipal schemes that keep disabled people out of sight.
Where we are now
As the deinstitutionalization of disabled people in Ontario unfolded in the 2000s, the province looked to the market to create the group home stock necessary to transition some 6,000 adults into “community living.” This scheme has failed. More than 9,000 adults live in group homes in the province today, while more than 10,000 adults are on the waitlist to receive access to care. While on the waitlist, increasingly disabled adults are forced into other forms of custodial care such as long-term placements in psychiatric institutions, inappropriate placements in long-term care facilities, emergency shelters, and prisons. Upon incarceration, prisons are often unwilling to release disabled inmates, even after they have served their sentence or have not been criminally charged, because they have no place to go while they remain waitlisted for a community home.
What’s more, the present state is being exacerbated by critical data gaps. While the government has increasingly shifted to data indicators to inform policies, their methods are ineffective, and key indices are often missing from interdepartmental databases. The Government of Ontario has stated it will not collect disaggregated data on COVID-19, while simultaneously claiming that data will inform their policies moving forward.
Each of these institutions—group homes, prisons, long-term care facilities, shelters and psychiatric facilities—are custodial in nature. As a result, it is difficult for them to abide by strict physical distancing protocols during the COVID-19 crisis. Institutions, after all, are not designed for space; they are designed for confinement.
Moving beyond the pandemic, a united and invigorated call for abolition and deinstitutionalization is more urgent than ever.
Megan Linton is a disabled, occasional writer and graduate student based in Winnipeg and Ottawa. Her research interests focus on sexual citizenship, institutions and disability, with a commitment to disability justice. Find her tweeting about sex and disability @PinkCaneRedLip.