Celebrating Seventy Years of Community Living Part Twelve: What Have We Achieved?

by Gord Kyle

Merely surviving 70 years as an association of likeminded people is an accomplishment and one that we should collectively celebrate. But, of course, if all we had to say about the history of our association was that we are still on our feet, what would be the point? After all, the parents that gathered in the basement of Carleton Street United Church at the invitation of Kathleen Stitt way back in 1948 did not gather to socialize. They came together, instead, to try to change the world. No one that gathered that night had a clear idea of what they might be able to achieve, let alone how to go about doing it. All they knew was that their daughters and sons who had an intellectual disability deserved a chance at a normal life. They hoped that, collectively, they could carve out some room for their children in a society that was seldom welcoming and did not even understand that accommodations should be made to include people who had an intellectual disability — after all, didn’t the government provide these people with all the help they needed at the institution in Orillia? Those parents who came together that first time knew that the institution was not the answer, at least not as it was being funded and operated at the time. Some who gathered wanted the government to fix the institution or build new ones so that their sons and daughters were safe and could live a fulfilling life. Others wanted something different. Some asked the same question that Victoria Glover asked in her letter posted in the Toronto Star five weeks earlier — why, if the government was willing to fund Orillia, could some money not be made available to support their children in the community where they lived, where they could remain connected to their friends and families.

So, what came from that gathering of parents all those years ago? What have we achieved through this immense collective action? One way to answer this question might simply be to look at the places where our work and advocacy have resulted in specific changes. Let’s start with Victoria Glover’s original question and plea to the Toronto Star in 1948. Mrs. Glover wanted to ensure that her grandson was not sent away to an institution, but instead had support to live in the community close to his family.

The institutions have now been closed for fourteen years, representing one of the crowning achievements in the advocacy and community development work of the association, something we must consider a significant achievement. Still, it took 61 years after Mrs. Glover posed her question for the institutions to finally close. In that time, many people entered the institutions, and many lived out their lives there, dying before plans were put in place to find them a home in the community. Additionally, it is clear to everyone that closing the government-run institutions did not end the threat of institutions. Many people today are trapped in hospitals, live inappropriately in long-term care facilities, are incarcerated in prisons, and are otherwise caught in inappropriate and often unsafe living arrangements. In fact, the 2016 report of the Ontario Ombudsman on the developmental services sector titled Nowhere to Turn deals largely with the issue of people that are still trapped in inappropriate institutional setting. More than half the recommendations of that report deal with people who have an intellectual disability who are incarcerated in criminal justice facilities and other institutions. Consider that one of the key motivating factors for building the institutions in the middle of the 19th century was in response to the fact that large numbers of people who had an intellectual disability were housed in jails, given the complete lack of other options. One would have hoped we would have made more progress on that front in the past 175 years.

It must be acknowledged that, as is the case with the closure of institutions, every one of our achievements is tempered by serious caveats. We have focused for most of our 70-year history on strategies for promoting employment, yet today most people who have an intellectual disability are unemployed, underemployed, or working in low wage positions. We recognized in 1985 that the sheltered workshop system we had created was not going to be a useful instrument for promoting community employment in the future. We began to advocate for the creation of supported employment services that would provide meaningful alternatives. It took 30 years, but we finally succeeded in wrestling from the government a commitment to close the last of the workshops and establish plans for each person involved to find a community-based alternative. This was a long-awaited victory, yet it was one that created new challenges, since the government made it clear that there was no new funding for the closure and transition. Given the modest funding levels of workshops, it made the establishment of good alternative supports difficult.

We have advocated from day one for the right of children who have an intellectual disability to receive an education, yet today some schoolboards in the province still operate fully segregated schools, and according to research carried out by Community Living Ontario and partners, 67 percent of parents reported that their child had been excluded from appropriate curriculum.

We have had specific disability income support nationally since 1954 and provincially since 1974; yet those who rely on income support today are trapped in a cycle of poverty living with incomes well below the poverty line. Our call for implementation of a guaranteed income system was finally acted on when the government implemented pilots of such a system in 2016. Following an election, however, the incoming government canceled the pilots.

Community Living Ontario has advocated since the early 1970s for the provision of individualized funding that would allow those who choose it to better plan and control their own supports. The availability of such funding has increased significantly over the years and in 2008, the government finally established a legislative framework for such funding within the Services and Supports to Promote the Social Inclusion of Persons with Developmental Disabilities Act. That act was unfortunately introduced at the time of a deep economic recession and key elements have yet to be introduced.

I could go on looking at our key “achievements” but given the caveats, it can be a depressing exercise and the point of this document is to celebrate. So, let’s try another way of looking at whether we have achieved anything significant. Let’s try imagining what society might look like today had Community Living Ontario never existed.

When Victoria Glover posted her letter in the Toronto Star back in 1948, her hope was to force government to provide supports that would avoid her grandson ending up in an institution. Had Community Living Ontario and its local associations not undertaken the establishment of schools and housing, families would have continued to have no support options available other than the institutions. Institutions in Ontario grew to a total population of just over 10,000 people in 16 facilities by the time they began to be downsized in the 1970s. We don’t have a way of calculating how big the institution system may have grown had our association not created a network of community alternatives, but one can be confident that there would have been more facilities and many more people trapped in them. Of course, there would likely still have been pressure on the government to begin downsizing the institutions since, by the 1970s, the harm and abuse suffered by people in the institutions began to be publicly exposed through the release of various government reports. One might wonder, had Community Living Ontario not existed, if those reports would ever have been written. After all, had Community Living Ontario Institution Committee Chair Jerry Anglin not taken author Pierre Berton to see Huronia Regional Centre in 1959, the public would likely not have come to know for some time the terrible conditions that existed in that facility. Additionally, the government’s efforts to improve and monitor those conditions would likely not have occurred, at least not at the time it did in the 1960s. The government may well have still asked Walter Williston in 1971 to investigate the death and severe frostbite of two men discharged from Rideau Regional Centre to work on farms. And Williston might have, as he did, recommended the phasing down of large institutions. Other reports that followed Williston, even without the advocacy of Community Living Ontario, would likely have had no choice but to support the Williston conclusion that the province needed to reduce its reliance on institutions.

So, let’s assume that by the 1970s, the government decided, based on the recommendations of numerous experts, to begin downsizing the institutions. Without the work of Community Living, as has already been pointed out, the institution system would likely have been considerably larger than it was in the 1970s. Further, without the work of the association in developing alternatives and testing community support options as it did with the Hamilton-Niagara Project, which was described in an earlier chapter, the government would likely have had little to begin with in creating the alternatives that were needed. We can be sure that the government announcement in 1987 to close all the institutions in 25 years in favour of a network of community-based supports would not have occurred, at least not at that early date; there simply would not have been the foundation of supports on which to build.

It is most likely that without Community Living to rely on for the establishment of a community network of support, the government would have handed any reform initiative back to the institutions themselves. The result would likely have looked much like what the institutions were already trying to do at that time, which was to simply move people into smaller buildings on the institution grounds or build smaller institutions and congregated campuses in sites away from the main facility.

Would people still be living in the government-operated institutions today without the work of Community Living? I am certain that the answer is yes. One of the main barriers to government reform of the institutions here in Ontario and elsewhere has always been fears and objections by the families of residents. Right up until 2006, when families took the government to court to stop closure plans of the institutions, some strongly opposed the change. Had Community Living not existed as a family network for almost 60 years by that point, providing people and families real alternatives, the objection to the closure of the institutions would have been enormous and no government was likely to have stood up to such objections; nor would it have had the moral authority to do so if alternatives to institutions did not exist.

What if Community Living had never created a network of specialized segregated schools across the province for students who had an intellectual disability? Yes, we can and should today decry the continuing segregation that exists in our schools, but consider what our education system would likely look like today if not for the work of our association. In 1947, when Donald Frisby established the first specialized school in Kirkland Lake, it was actually illegal to fund education for students who had a severe intellectual disability. That first classroom and others that followed were acts of civil defiance, built with the sweat and determination of families. Step by step, we forced the government to provide increasing allotments of funds for students who had an intellectual disability. In time, we advocated successfully for the Ministry of Education to take responsibility for the funding of these schools and eventually to fully assume responsibility for the education of students who have an intellectual disability.

Would it still be illegal to provide funding for students who have an intellectual disability today had Community Living not existed? I am certain that would not be the case. Human rights advances in the past 50 years would have ensured an acknowledgment of the right to at least some form of education for all children. What would our schools look like, however, if not for the work of our association? Even with decades of advocacy by Community Living and other allies, we still have a handful of fully segregated schools. One can be certain that without the work of Community Living, segregated schools would be much more prevalent and might possibly be the predominant education option. One can also be certain that where students who have an intellectual disability attended regular schools, the reliance on segregated classes and programs in those schools would have been far greater.

A few years back I sat in on a presentation at the Legislature to a special legislative committee by a Ministry of Education official. The official reported that the current education system was 85 percent inclusive, with respect to students who had an intellectual disability — a statistic that I knew to be false. None of the committee members questioned the figure and it was recorded as a fact in the committee records. I spoke with the official following his presentation to ask for clarification on the figure and he explained that 85 percent of students, at some time in their education schedule, took part in regular mainstream education activities. This means that a student who spends even a few minutes in a regular teaching environment is considered to be receiving an “inclusive education.” This manipulation of information to mask the tremendous degree of segregation that still exists in our education system reminds us why we need strong advocacy. Given such willingness of school officials to distort the truth, how likely is it that we would have come even as far as we have, had education been left unchecked by the advocacy efforts of our movement?

What if Community Living had never created a network of sheltered workshops in the province? While we eventually became convinced that workshops would never be, as intended, an effective mechanism through which people would proceed to employment, I would argue that they were still a brilliant idea for their time and one we should be proud of. A well-operated workshop — and there were quite a few of them — evolved a degree of sophistication that absolutely served to prove the capacity of people who had an intellectual disability to work. While there were flaws in the model that created barriers for people breaking free and moving beyond the workshop, they created a starting point from which we built supported employment and other community employment support systems. We are rightfully concerned today about the high unemployment and underemployment rates of people who have an intellectual disability. Consider this, however — for a person to be unemployed or underemployed, there must first be an assumption that the person is part of the labour pool and is ready, willing, and able to work. Community Living has, through all its vocational and employment strategies and initiatives, ensured that that assumption exists.

While there are many more examples we might look at when considering what the world would be like if Community Living Ontario had not existed, let’s look at just one more. The idea of supported decision-making emerged here in Ontario as Community Living Ontario worked to identify an alternative to guardianship that would ensure that people with even severe disabilities would not have their personhood stripped away and the right to control his or her life removed. After calling on government to introduce supported decision-making into provincial law, and for the most part failing to get the change we wanted, our work was picked up by the Canadian Association for Community Living (now Inclusion Canada). Through the efforts of the Canadian association and Inclusion International, supported decision-making was embedded into the UN Convention on the Rights of Persons with Disabilities in 2006 and is now part of an international legal framework that 186 countries are now party to. This is a change that may well not have occurred if not for the work of Community Living Ontario.

Finally, I say this to those who might object that Community Living Ontario is not the only organization in Ontario fighting for the kind of changes just outlined and that therefore I cannot really be certain that our association deserves credit for many of these changes: It is true that today there are many organizations, networks and groups advocating for social reform and many of them deserve to be acknowledged as positive agents of change. It cannot be denied, however, that Community Living Ontario established the foundation for what exists today and worked for decades before other advocacy groups even existed. If Community Living had never been created, the landscape would be very different.

What has defined Community Living Ontario from the beginning has been its dogged adherence to its fundamental principles. From the very first words of the association, penned by Victoria Glover in her letter to the Toronto Star, we have worked to ensure that people who have an intellectual disability have every opportunity to, as Mrs. Glover described, “live a normal life.”