Under Jule Hopkins Community Living B.C. (C.L.B.C.) took on a brave agenda of creating documents related to how people can plan for vulnerability and stay safer in community, which had many different parts. I continue to think this was really exemplary work that involved many self advocates and families, as well as brought together different groups.
Jule was an early believer in our work and we used methods from what is now called CBPR (Community Based Participatory Research) and, together, learned a great deal about how inclusive groups and inclusive research works, and got to work with colleagues and agencies all over our province and further afield, given her agenda of collecting local knowledge and then disseminating it back to others so that we can all learn from each other. I think over five years we met with about 100 different groups ranging from self advocates to parents to agency staff to organizational leaders and researchers at international conference.
Jule and her self advocate advisory group for the project wanted things they could “own” and carry around with them, and I think it was their idea that I use drawing to help those who felt they could not read* – so many people with disabilities have said how much they appreciated the drawings, graphics and plain language text (written for the most part by Susan Stanfield).
Some of the stories and data we collected in the original project became part of this excellent resource, Belonging to One Another: Building Personal Support Networks, though we didn’t write it. In workshops we did using it, a self advocate favourite for discussion was always #13, a poster for “Buddy Jones”:
Like all of the work we did together, this documents an actual event. A friend of mine was supposed to be at an update meeting of his team, which included service providers, behavioural therapists, and a number of other professionals. He didn’t want to go into the room. “They’re just going to talk about what’s wrong with me!” I told him I was sure they would want to talk about what he was good at and how to grow those parts of his life, and I asked him if he wanted me to come to the meeting with him. He said, No, you go in and be me. See what it’s like. And around and around the circle they went, talking about everything he did wrong and making sound hopeless and not at all like anyone you wanted to spend time with. I pointed it out to them, and he and I went for coffee and started talking about how to convey who he really was – a really interesting, loving helpful, charismatic person. Out of that came the idea of this poster, which we used as a way to begin the next meeting of his support team, and we had framed so that he could wake up and see it when he woke up in the morning.
Jule followed this by asking us to work on a book that people could use – spiral bound, pocket sized, graphic based, Support Networks: A Plain Language Guide for Self-Advocates and then later, Understanding Vulnerability: A Plain Language Guide for Self Advocates.
All of these are available to download at the CLBC Safeguards site.
At TASH in Nashville, at the premier of the book that came out of our conversations with self advocates, there was standing room only for our presentation and afterwards a woman came up to say “I’ve just phoned my assistant to order 500 address books for the people we support – of course people should own the information about who they connect with – why did we not think of it before?”
At the request of parents, staff and self advocates we continued on to create 101 Ways to Facilitate Making Friends. Both of these books are available (and much more!) at the Spectrum Press site. These books have been used by self advocate groups, college classes on inclusion, and parent groups. I’m amazed at how many people I meet who have read and used it – it’s a great introduction for me in expanding my own network!
David Pitonyak wrote:
“What I love most about 101 Ways . . . is that it is not just a book about finding friends. It is a book about being a friend. It is not just a book about finding friends in everyday community places. It is about learning ways to make a contribution to community. Being a good friend or neighbour, son or daughter, brother or sister, aunt or uncle, partner in life. Giving as well as getting. Our social brains love it when we are needed in real ways by other members of the ‘pack.'” From the foreword, by David Pitonyak, “Ours is a Social Brain.”
These projects – I should spend some time with Jule mapping them all out because it was a pretty amazing body of work around the province and she was so open to ideas that people had for what we could do next – got me excited about a new way to do research, with people. Jule’s first question for our first project, which was simply about wondering what kinds of networks people had (that should be a blog post on its own) was “How do you know who is in their network?” That led to us generating ideas about how we could tell who they knew and cared about and were cared about by – in effect, a kind of thesis statement that got us started. The implicit question, which became the next research project, was how do we grow those networks and why are they important?
* “felt” they could not read, because a lot of them were actually literate but so anxious about their literacy that they didn’t want to describe themselves as leaders. As we’ve worked with more folks over the years, particularly through the work of Dr. Susan Powell and the Next Chapter Book Club, hosted by Spectrum Society, we have found that they are actually voracious and excited readers.