Celebrating 70 Years of Community Living Part Six: A Place at the Table — Self-Advocacy

CLO 70th Anniversary banner

by Gord Kyle

“We are the Association for the M——- R——-,” a board member exclaimed angrily, referring to the name of Community Living Ontario at the time. “We are not the Association of the M——- R——-.” Some others in the room nodded in confused agreement. It was a bewildering time for Community Living. Not everyone understood or agreed with the changes that were taking place. What had people so animated were the decisions made by organizers of the 1981 annual conference held in Windsor – decisions that threatened to change the association in fundamental ways.

Today it is not unusual to see people who have an intellectual disability playing a role in conference sessions. People with disabilities contribute significantly to the planning of the events and commonly host and deliver many of the sessions. In the early years of the association, this had not been the case. Conferences were planned by and for parents and staff of the local associations – they were about people with disabilities, but that did not imply that people with disabilities had any role in the events. In fact, the association in its entirety was created to do things for people who had an intellectual disability – it was not created, or even imagined, as a vehicle for people with disabilities to do things on their own behalf. Organizers of the 1981 conference decided that it was time for a change. They insisted that people with disabilities be involved in the planning of the conference, and – the most controversial decision of all – that people with disabilities were to play a role in the presentation of every session offered. This was too much change for some people.

The 1981 conference organizers were not trend-setters – as much as it would be nice in a historical document like this to congratulate ourselves with such a claim. Rather, they were responding to emerging trends in the broader world. 1981 was declared the International Year of Disabled Persons by the United Nations. It was a year aimed at promoting the rights of people with disabilities as equal citizens. Specifically, the UN wanted to draw world attention to the right of persons with disabilities to take part fully in the life and development of their societies, enjoy living conditions equal to those of other citizens, and have an equal share in improved conditions resulting from socio-economic development.

The association recognized and celebrated the year of disabled persons. Had it been the only external disability event occurring that year, we would have proudly congratulated ourselves on all the work we were doing to further the aims of the United Nations. After all, look at all the services we had created over three decades to advance the citizenship and autonomy of people with disabilities. But here at home, other things were occurring that rattled our comfortable assumptions and caused us to reflect on where we were going as a movement.

Canada was in the midst of negotiating the Charter of Rights and Freedoms which would be signed into law in April of the following year. Throughout 1981, advocates were fighting to ensure that the individual rights of people who had an intellectual disability were enshrined in the Charter; an effort that was ultimately successful. The fight for Charter rights was a fight to be heard and respected – not only in society, but in our own movement as well. Until that time, the voices that were listened to within the association were those of parents and association staff. Increasingly, people with disabilities were demanding to be part of the conversation.

This demand for change had been simmering for almost a decade by that time, driven by a small but growing group calling itself People First. According to People First of Canada, “the movement began in 1973 when self-advocates came from all over North America to talk about their rights. For people with intellectual disabilities, their first issue was their right to live in the community – to get out of institutions. By 1974, the first People First chapter was up and running in British Columbia. This first group was made up of men and women who lived in an institution and wanted to get out. They wanted to live in the community and have their voice, their choice, and their rights. For the next several years, People First groups began to form in provinces, territories, and communities across the country.”

In 1981, as our association planned its conference in Windsor, People First Ontario held its inaugural conference at the old Holiday Inn in downtown Toronto. The matters on the agenda were broad and deeply consequential. High on the agenda was a demand for the closure of institutions which many of the founding members of People First had survived. Working conditions and wages in sheltered workshops were discussed, as was the strike a year earlier by workers at the ARC Industry in Carleton Place described in an earlier article. Forced sterilization was another key subject as the Eve case was heading to the Supreme Court of Canada that year. Eve (Mrs.) vs Eve was the landmark case brought by a mother seeking court approval to have her daughter with a disability sterilized against her wishes. People First spoke out and Community Living’s National Consumer Advocacy Committee (self-advocates) was granted standing at the hearing. The court ruled for the daughter stating that “barring emergency situations, a surgical procedure without consent ordinarily constitutes battery.”

Our association was also a much-discussed subject at the initial People First conference. In particular, the group agreed that the current name of the association (national, provincial, and local) should be changed to remove the offensive “R” word. A concentrated advocacy strategy was launched by People First which eventually forced the association to change its name to community living. The Canadian Association adopted the change in 1986 and Ontario followed suit a year later. Eventually all local associations changed their names, most adopting community living.

In the early years of People First Ontario, Community Living Ontario’s Board and staff looked to the organization for advice and partnership. As People first struggled for resources in its early years, we provided them office space and clerical support and the relationship between the two organizations was strong. The relationship was not, however, always comfortable. People First challenged the association time and again on many issues including its name, the positions taken on some issues, and the kinds of support that it and its local members provided to people. Eventually, People First decided that it was in its best interest to create distance between the organizations so that they could continue to act autonomously. It moved its offices and broke away from the financial support that Community Living Ontario had offered.

While the two organizations no longer shared an office space, they continued to collaborate on many advocacy issues and have supported each other’s work throughout the years. They partnered on education projects for many years, collaborated on interventions in court cases and supported one another’s advocacy positions at various government consultations.

Community Living Ontario also pushed the government to engage with People First on many occasions. For example, in 2004, the Ministry of Community and Social Services was looking to set up an advisory group to help it with its operational and policy reform during the final closure period of the institutions and the development of new legislation. The Ministry was aware of the Provincial Network on Developmental Services, an already established group representing regional and provincial organizations that provide supports and services in the developmental services sector. The Ministry proposed using the Network as its advisory group. Community Living Ontario supported the inclusion of the Network in such a body, but pushed the government to ensure that People First and groups representing the voice of families were also included. The Ministry listened, striking the Partnership Table, a group that continued to meet until 2018. It was disbanded when a newly elected government discontinued nearly all the advisory processes in the province including the Partnership Table.

As People First began to draw away from Community Living Ontario in the late 80s to stand more independently, a vacuum was created within the association with respect to direction and advice from people who had an intellectual disability. In 1987, the Board of Community Living Ontario appointed a Consumer Advisory Committee to provide such advice. As the name suggests, the advisory committee played a valuable but passive role in the association, responding largely to the agenda of the provincial board and having little authority to set its own agenda. In 1995, as self-advocates demanded greater freedom to identify their own issues of concern, the advisory was disbanded and a Self-Advocates Council took its place. Membership comprised of ten people with disabilities, representing 10 regions of the province. The inaugural meeting of the Self-Advocate’s Council occurred on May 31 of the following year.

The Self-Advocates Council, which later changed its name to The Council of Community Living Ontario, continues today to provide advice to the Board. But, unlike the earlier advisory group, the Council maintains its own voice within the work of the association and sets its own agenda with respect to the issues it thinks important. It participates regularly in meetings and other advocacy events with the association and carries out many advocacy initiatives in concert with Community Living Ontario.

The decision in 1981 to ensure that people who had an intellectual disability were involved in all aspects of the annual conference and had their voices heard was monumental. It was not the primary catalyst for the sea change that was occurring in the association – that credit goes to self-advocates who demanded that their voices be heard and respected. But the decision that the conference should not be about but rather for people with disabilities had a profound impact on the future of community living. The idea soon spread to all aspects of the movement. While we are far from perfect in our inclusion of self-advocates, we have made tremendous progress in recent decades. People with disabilities now play significant roles in, not only the conference and such events, but in planning and governance of the association in all aspects.

Thinking back on those who in 1981 declared that we were the association for and not of people with disabilities, one cannot help but wonder what they would make of it all. While one is inclined to reflect on such moments in our history with disappointment, that is probably not fair. Throughout human history, it was agreed that people who have an intellectual disability were incapable of playing a meaningful role in society and must be taken care of for their own good. I think we can forgive those who took time to learn that this social norm was flawed and that all people not only have a right to speak for themselves but are able to do so with support and accommodation. I would imagine that the gentleman who made the comment about the nature of the association in 1981, would have applauded as loud as any other member on seeing, forty years later, Michael Jacques, a man who self identifies as having an intellectual disability, taking for the first time his seat at the provincial board of directors as our president.