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Deinstitutionalization, Community Commentary - John Lord

This weeks commentary: "Deinstitutionalization, Community Commentary", comes from  John Lord, titled: "Time For a New Story!".

John Lord is a researcher, author, and facilitator from Kitchener-Waterloo, Ontario. He is the author of several books on alternative community living, including Return to the Community: The Process of Closing an Institution, Pathways to Inclusion: Building a New Story with People and Communities, Friends and Inclusion: Five Approaches to Building Relationships, and Facilitating an Everyday Life.

We want to encourage you to comment on this and all posts in this long form blog series. Comment and share with others lets create a national dialogue on this subject and get people talking.

John Lord

In 1983, the British Columbia government announced they were closing Tranquille, a huge facility in Kamloops. Over the next three years, I researched the closure process and initial outcomes for people leaving the institution. Although our research clearly showed that people were far better off living in the community, years after the closure we found that most people had few relationships and many continued to be isolated from community life.

In many ways, what happened in British Columbia in the 1980’s and elsewhere during the last 30 years, shows the limits of deinstitutionalization when it is not accompanied by a paradigm shift in the way we provide support to people. As a result, many people with disabilities living in the community continue to be poor, have few friends, and are often segregated from community life. Albert Einstein put it best when he said, “The significant problems we face cannot be solved at the same level of thinking we were at when we created them”.

Governments and most service providers did not change their thinking very much during deinstitutionalization. In fact, the myths that kept people from changing their thinking during deinstitutionalization are the same myths that are making it so hard to change the community institutionalization that now exists across the country. These myths include:

  • Myth #1: People with complex disabilities require institutional care (or segregated support). 
  • Reality: Citizens with complex disabilities have been able to live full, rich lives in the community (in every province)
  • Myth #2: A continuum of services is still the best way to provide support to people with disabilities.
  • Reality: A continuum approach always leaves some people with disabilities segregated and less equal.

Breaking these myths requires a New Story. In research for two recent books I have co-authored, we have learned that a new narrative is in fact emerging across the country. In every province, we can find innovative approaches, often reflecting this idea of a New Story, where people’s dreams are heard and genuine relationships are being developed. In every province, we find fearless families, who have figured out how to support their vulnerable family member to be part of a neighbourhood, employed in meaningful work, or included in a faith community.

The problem is that the elements of a New Story are typically local, small in scale, and somewhat fragile. Large scale change has eluded this movement, so that even in the most progressive communities, we witness old story approaches (segregated day programs, large group homes, isolation, loneliness, etc.) side by side with the New Story (individualized funding, independent facilitation, dedicated people building relationships and support networks, strong family networks, etc.).

Some would say this is the way social change always happens. A small group of social innovators show us a New Story with their ideas and their practice. The innovators inspire us to be committed to self-determination and community, because they know that these values are the foundation of significant change. The assumption is that early adopters then move toward the New Story and over time, a ground swell of support for the new ideas will take hold.

Yet, this scenario has been played before. The innovators do find some early adopters of their ideas, but little else changes for the better. Governments are moving at such a slow and incremental pace that the lessons and research of the social innovators are seldom being embraced. Sadly, the lack of impetus toward a New Story means that service providers who resist paradigm change have time to organize against the change. Even some families are now seeking old story solutions, since the promise of a New Story does not have strong policy and funding support. To make matters worse, governments have typically refused to re-allocate resources from the old story to New Story infrastructures.

I hope that closing all institutions in Canada can be an impetus for more concerted action. We need strong national and provincial voices speaking for a New Story. While it is difficult to be optimistic in the light of the current reality, we can be inspired by Gandhi, who reminded us to remain hopeful and work with others to “be the change we require in the world”.