Not again! The news from St Jude Quebec is distressing. Two middle aged brothers found dead in their family home. The older brother, Jean-Guy died first. He took care of his younger brother Richard after their mother died a few years ago. Richard had the disability and first reports suggest he starved to death several days after his brother died.
Dear reader you likely don't pay as close attention to such news as Vickie and I do. Twenty-one years ago we, along with other parents who have sons and daughters with disabilities, created PLAN to prevent such catastrophes. Yet they continue to happen. This time in Quebec. Similar circumstance drew media attention recently in England. And there have been tragedies like this in the rest of Canada too.
These are entirely preventable. PLAN's approach has been proven in British Columbia and in at least 40 locations around the world that we know of. Unfortunately, it is not yet part of the funded structure of care for people with disabilities and their ageing parents.
Here is what we would do to prevent such tragedies.
First, don't cast blame. Don't scapegoat government, social services, disability organizations, the community, the neighbours, the mother, the extended family, the press. Don't, for example, leap to the conclusion that government simply has to spend more money on programs. Blame invites retrenchment. It reinforces conservative decisions. It inhibits innovative thinking and creative action. And the latter is exactly what is needed to prevent future catastrophes.
Second, I invite you to rethink everything you know about disability. These deaths reinforce our belief that loneliness and isolation is the biggest handicap faced by people with disabilities. And their families. A good life for people with disabilities, in fact for all of us, starts with friends and family. Relationships also keep us safe and provide the security to make our contributions and experience meaning. We also get sick less often, heal more quickly, use services more efficiently and less frequently. Programs and services cannot substitute for friendship and natural
caring. Most professionals admit their limitations in this regard. This is PLAN's specialty – we can develop a social network for anyone.
Third, change our institutional response. For the first time in history we are witnessing a generation of people with disabilities outlive their parents. Our institutions, systems and service providers have not caught up with this demographic tsunami. Here are two things our governments, institutions and non profits could do:
- Support not supplant the care provided by family. Apparently the older brother was afraid to ask for
help for fear the authorities would judge him unfit to care for his brother. In other circumstances elderly parents are too proud to ask for
help or had previous experiences of social service interference. Family friendly policy and practice strengthens the natural resilience, the problem solving capacity of families. Its goal is the healthy functioning of the family.
- Ensure social networks are nurtured or created for every person with a disability. Reduce and eliminate the isolation and loneliness of all persons with disabilities. The average yearly costs of programs are in the tens of thousands and sometimes hundreds of thousands of dollars. The average yearly costs of a social network is in the neighbourhood of $5,000. Tyze networks are considerably less expensive. For example, Tyze networks could be offered to all people with disabilities and their families in your organization, community, province, country. Several organizations across Canada already are.
Fourth, continue to reach out to the strangers in our neighbourhoods. The yearning to belong unites us all. Don't let our communities disintegrate any further. Don't assume our institutions are taking care of things. They can't and shouldn't. Read John McKnight and Peter Block's new book: Abundant Communities. Have a look at our new website devoted exclusively to the nature of belonging. We have created it with Jean Vanier's L'Arche and our Quebec friends at L'Agora to understand more deeply the living ties that bind us together.
From the recesses of my Catholic background I recall St. Jude being the patron saint of hopeless causes. Perhaps it is not a coincidence this latest tragedy happened in St. Jude. May the community of St Jude make a stand. May they start a movement to end the isolation and loneliness of everyone in our communities. May St. Jude, Quebec become the first municipality to erect a sign: Welcome to St. Jude. Never again, will strangers live here.
NOTE: PLAN/PLAN Institute offer a range of resources for creating 'circles of friends' and social networks. These include our most popular on-line course, Weaving The Ties That Bind, which has trained people from all over the world.
Another excellent and most timely piece, Al. This article deserves much wider circulation
This is terrible. Recently in the UK, a mother who was caring for her adult daughter with cerebral had a fatal heart attack. The daughter subsequently starved in her wheelchair. Both bodies were found only months later. At one point last year, the mother had draped a sheet on her roof with the word “HELP” written on it. The despair and hopeless loneliness is palpable and sickening in these tragic cases. We MUST reinvent ways of supporting each other. Al, you are exactly right.
Not too long ago a similar occurrence in Thunder Bay. Thank you Al, and thank you to anyone who reaches out to community. I am so fortunate as to live on a street where we all know each other. We share tools and pot lucks. Had these brothers lived on Parkside Lane the story I am sure would have been different. My son used to cut the grass and visit with an elderly woman on our street until she moved to a home. He still talks about Verna with fond memories.
However just a few streets over in a neighbourhood of million dollar homes, a senior couple lived and died in complete squalor. Where was the family, where were the neighbours, where was the church? This has to be a priority. A first on the to do list. In “No Time”, Heather Menzies, writes about our fast paced modern living, our sound bites of connection. She describes research where nursing went beyond the charting and monitoring and reporting to an intentional relationship with the patient. The recovery rate was exceptional for those receiving the benefit of a caring relationship. The grid of input output, the bigger, faster, more is killing us.
Tyze, tyze.org is an amazing tool in helping people connect with each other, keeping each other safe. The online course Weaving the Ties planinstitute.ca will help people get started in developing an intentional network and everyone will experience the incredible reciprocity of relationship when we make sure we’ve introduced ourselves to our neighbours.
thanks Nancy – I appreciate the reference to No Time. You are correct – there is a link between declining neighbourliness and our too fast paced lives. At least that is how I experience it.