Navigating the Boundary with Community
David and Faye Wetherow
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
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.
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?
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.
is the alternative?
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
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.
are three stories that are helping us think about what it might be like to be
navigating on this new map…
the Door, and See All the People
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
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.
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”.
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.
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.
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.
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?
/ Grandmothers / Everybody”
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.
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
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.
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.
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
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.
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.
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".
how can we remind ourselves to bring the great questions to the right places
– the ‘sweet places’ – in the community?
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.
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
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
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.
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