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14,000 Islands: Navigating the Boundary with Community

by David and Faye Wetherow


We hear again the voices out of our cultural tradition telling us that to have community people don't need a 'community center' or 'recreational facilities' or any of the rest of the paraphernalia of 'community improvement' that is always for sale. Instead, they need to love each other, trust each other, and help each other. That is hard. All of us know that no community is going to do these things easily or perfectly, and yet we know there is more hope in that difficulty and imperfection than in all the neat instructions for getting big and getting rich that have come out of the universities and agribusiness corporations in the past fifty years.


-- Wendell Berry, Home Economics

About 15 years ago we attended a gathering of more than a dozen self-advocacy projects scattered throughout a large eastern state. As we listened to the presentations, we noticed that every project, regardless of locality, size or mission, seemed to be entirely focused on what we ended up calling 'the boundary with the service system' – the realm of formal services, bureaucracies and governments – rather than the boundary with the community.

As we thought about it, we realized that the vast majority of organized groups of parents, self-advocates, and citizen advocates have focused on developing skills and connections for dealing with the ‘system’ boundary.  How had we all become so powerfully conditioned?

As important as ‘systems’ work is, it harbors some big limitations. Imagine a map of the service system looking something like the engineering diagram for a set of linked public swimming pools, with people, agencies, and good ideas standing in line to get in.  It’s a simple map, but it’s not a great place to live.  Tax caps, revenue losses, economic competition, and a pervasive sense of scarcity is draining water out of most of the pools, closing others, shutting down the filters, and creating a general sense of 'competitive misery'.  If we stay with this map, the solutions all seem to lie in the direction of building more pools, adding more powerful pumps and filters, and pushing ahead in line. 

What is the alternative?

If we imagine a map of the community, we see that it is a different kind of map.  It’s a lot more complex – a bit more like a map of the Lake of the Woods on the Minnesota-Ontario border.  From a distance, the Lake of the Woods looks like a medium sized body of water, maybe 145 square miles. But when you actually start navigating the waters, you discover that 'the Lake' is actually a very complex system of islands and waterways. 

The announcer on the Lake of the Woods tour boat tells travelers that there are 14.582 islands and sixty-five thousand miles of shoreline on the Lake.  There also seem to be about 10,000 rocks just under the surface of the water, so when you sail the Lake, you navigate with your thumb on the chart.  It's very challenging navigation, but it’s also incredibly beautiful, and far more enjoyable than fighting for position in a draining pool.

Here are three stories that are helping us think about what it might be like to be navigating on this new map…

Open the Door, and See All the People

When young John Jennings, who happens to have Down syndrome, was celebrating his ninth birthday, his parents began talking with friends and family members about the fact that he would need to be welcomed into the world of work when he left school at age nineteen. His mother, Sarah, began asking: "Who will need to know him, and what kind of experience will they need to have with each other so that someone in our circle will offer him employment when he leaves school?  What do we need to be doing together over the next ten years for this to happen?” 

Our friend Judith Snow defines a 'great question' as a question that refuses to be answered, so it keeps leading us into deeper thinking and deeper connections with each other.  Sarah was asking a great question, and she was asking it of the right people.

Sarah said, "Think about the old nursery rhyme, 'Here is the church, here is the steeple, open the door and see all the people'. Well, all of the people in our church – in fact every one of the people in John's life – are connected to something during the daytime.  They all go somewhere during the day. I figure if the people in our church start talking about John's future, and keep asking the question for the next ten years, we can probably figure out how people can welcome him into the places where they work, or volunteer, or do their art, or their music, or add to the community in other ways”.

Somehow John’s parents knew that it was important to do a good job with their personal community – not with 'the community' at large, but with the people who knew John, who loved him, and who knew that he would be part of their futures, forever.  They knew that if they did the right kind of work, he might have a chance at being independent of the system.  A small amount of  formal support – money, technology, or job adaptation – could support a much larger commitment from their friends, but John’s future wouldn’t be dependent on the operation of the system.

That same summer, fifty-four families marched on our Provincial Legislature, stridently complaining that the 'vocational rehabilitation system' had not made preparations for their children's graduation from high school.  Some of their sons and daughters had been sitting at home for over a year. Their question to government sort of boiled down to ''Where are the dollars?". Government's answer was simple: "Other people with even more critical needs are standing in line for the dollars".  The underlying message? Get more skilled at the game of competitive misery.  Sarah’s question helped us understand that the march on the Legislature had three meanings:

·       First, it was true that the ‘system’ had not done a very good job of planning far these young men and women as they approached high school graduation – somehow they had not been 'planned for' or 'budgeted for' on their way into the adult system.

·       Second, it meant that for eight, ten, or even twenty years, fifty-four families had been systematically convinced that their children's futures would somehow emerge from the service system.  They were told that the most important work that they could do as families was to pay attention to the interface with that system – educating, challenging, advocating, and hoping against hope that the system would do its job when their sons and daughters emerged from school.

·       Third, and perhaps most importantly, it meant that fifty-four sets of friends, extended family members, members of church congregations, colleagues at work, schoolmates and neighbors – literally hundreds of people – had never been asked to think about what they might do to welcome these young men and women who they already knew, into the world of work.  A great opportunity had been missed.

When I was 19, our neighbour, Tom Baker, knew that I was ‘at loose ends’ and looking for work.  Tom’s family and our family had all moved into a new neighbourhood together.  We moved mountains of dirt and seeded new lawns together, went to the same church, and Tom taught me to play chess, beating me soundly every Wednesday night for years.   Tom worked as an estimator at a printing company in the city, and when he saw me struggling to find employment, he actually created a little job in his section.  Over the next year or so he taught me his job, and when he announced that he was moving to run a small-town newspaper, I became the estimator. That first job led to the next, which led to a whole series of experiences that shaped my future.

Sarah Jenning’s simple question is one that can uncover the Tom Bakers of the world.  It allows community members to discover that they, too, can be ‘Tom Bakers’.  It can reveal and engage an enormous amount of community capacity, hospitality, and creativity. Now, how do we get Sarah’s question, and other great questions, on the agenda?


“Wheelchairs / Grandmothers / Everybody”

A few months after Jesse moved out of the institution and into his own home, he began telling his support staff that he wanted to "work / food”.  Jesse has cerebral palsy, and uses a combination of Bliss symbols and gestures to communicate.  For several months, we tried every way we could think of to help Jesse get into the field of food preparation and restaurant work – commercial cooking courses at the nearby community college, helping out as a vegetable cutter in local restaurants, and so on. What we discovered was that the requirement for speed and mobility in commercial kitchen environments kept getting in the way, and so Jesse 'failed' (we failed) at one arrangement after another.

One evening, as Jesse was watching a television program about Winnipeg Harvest, a local food bank, his assistant saw him watching closely, and getting an ‘intense’ look on his face. She asked him what was going on, and Jesse literally pounded out on his Bliss board, "Why are there people in Winnipeg who don't have enough to eat?" Jesse's helper had the presence of mind to say, "Why don't we go down to Winnipeg Harvest and ask them that question?".

A few days later, after being hoisted up a flight of six steps, Jesse rolled through the front door of Winnipeg Harvest and asked David Northcott, Harvest's coordinator, "Why are there people in Winnipeg who don't have enough to eat?".  Their ensuing conversation was the beginning of a long working friendship.

The people at Harvest quickly figured out a way to get Jesse into the building, and Jesse started working as a full-time volunteer (the same role played by almost everyone else who worked there).  He packed boxes, ran the Xerox machine, and did a variety of other jobs. He got to know the other people who worked there – people who shared his passion about the question, "Why are there people in Winnipeg who don't have enough to eat?"  Jesse started spending time with his colleagues after work, and one of our neighbors (another volunteer) started talking about meeting Jesse at Harvest. She talked about how her life had changed as a result of meeting him.

For a long time, we thought about what made this 'work'…

·       First, Jesse approached Harvest with the question that was at the heart of the work that Northcott and the other volunteers had undertaken. He didn't show up as a person-with-a-disability looking for something to fill up his time card. He showed up as a citizen, with a passion for a topic that they were already passionate about. They shared a great question and a passion for making a difference.

·       Second, Harvest wasn't an a 'schedule'. It wasn't competing with other businesses, so it couldn't make or lose money based on how fast people moved. What counted was the shared commitment and making headway on the question. In the context of Harvest, the amount of time and attention that Jesse had to give to making his hands move – his physical 'slowness – wasn't a problem. We began thinking about Winnipeg Harvest and places like it as the 'sweet places’ in the community – the places where shared interest and commitment count more than speed and agility.

·       Finally, we recognized that the personal assistant who worked with Jesse had a great insight when she went beyond just answering Jesse' s question. She knew that hidden 'inside' his question was an opportunity to move towards connection, commitment and contribution. If Jesse could find a place where his question would have real significance, he would find himself in a place where his gift made sense. His identity could shift from that of a consumer to a citizen who was making a civic contribution. She was right.

Several months after beginning work at Harvest, Jesse dropped into our office while we were watching a film about the Nazi Holocaust. Jesse caught a glimpse of bodies being shoved into mass graves, and pounded out on his board, "Why? / WHY?". We started talking about the history of the Nazi exterminations, and about the fact that the killing started with people with disabilities and people who were chronically ill – people who were described by the Nazi propaganda machine as 'useless eaters '.  Jesse thought about this for a long time, and then slowly and emphatically pounded out on his board, "No! / God / everybody / made! / Grandmothers / wheelchairs / everybody!"  Pretty good theology, in my book.

Now, here's the irony, A few weeks ago, we were telling this story as part of a training event in Vancouver.  I suddenly realized that I had missed a wonderful opportunity on the day that Jesse asked the Holocaust question. If I had been half as attentive as his assistant, I would have said, "Jesse, that's a great question – let's go and talk to the people at the Jewish Community Centre, and see what they have to say about it".  As Michaelangelo observed centuries ago, "still I am learning".

So, how can we remind ourselves to bring the great questions to the right places – the ‘sweet places’ – in the community?


The Nisga’a Journey

The Nisga'a people, living In the Nass Valley in northern British Columbia, are asking the question about how to bring people with disabilities and elders living in lower mainland nursing homes back to their home community. We had been asked to help them think about how to organize and design the services that would be needed to support vulnerable people.

When we met with the elders, we asked them to tell us about the traditional values and structures that underlie the idea of caregiving in their community. Over the course of the next full day, the elders described elements of an ancient system of law known as the Ayuukhl Nisga'a – a set of what John O’Brien calls ‘enduring understandings’ – that provide direction to individual, family and community life, including politics, economic development, education, cultural life, spirituality, and caregiving. The Ayuukhl is a finite and beautiful pattern, and is perfectly suited to the valued inclusion of community members with disabilities.

Together, we started working on the design of a caregiving system that would be based on that tradition – a complex fabric of values, relationships and responsibilities.  We worked on patterns of practice that would allow that system to provide the reliable supports needed by people who have significant medical, mobility and communication needs.

The person who brought that great question to the community is a man named William, who had returned to the Nass Valley after spending decades in lower mainland hospitals. One of the tenets of the Ayuukhl is that literally everyone in the community has a purpose, and that purpose is clearly embedded in family, clan, house and traditional life. We discovered that William was the traditional caregiver for his niece, a woman who has great political responsibility.  He has serious responsibility for critical occasions in her life – childbirth, marriage, accession to leadership, her death. Other people have serious responsibility to teach him and to encourage him to conduct this caregiving role.

In addition to carrying the question of how people with disabilities can return home, William has become the catalyst for several young people starting to learn the traditional language.  The elders who carry the great question of how to keep the old language alive are delighted!  He has plans for the construction of a cooperative smoke-house in his back yard – a great place for people to work and talk together.  And he’s involved in a cultural dancing and singing group – one of the community’s most important structures for conveying history, language and values across the generations.

The work that the Nisga’a community is doing is not easy, and they face many obstacles, but the Ayuukhl provides a clear pattern and direction for the work – a pattern that the whole community understands and values. It was our first encounter with an entire community that is asking a great question and trying to move towards inclusion at every level.

© 2003 David and Faye Wetherow ! CommunityWorks

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