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101 Ways to do Research

April 30, 2012

A while ago, I was having a late night intercontinental twitter conversation with Pete Le Grys, of, and he shared a project he was part of nearly 20 years ago – a magazine shoot in which people with and without disabilities were photographed like catalogue models and they explained what they were wearing and why.  It was fascinating for a number of reasons, not least as a kind of community based research.  Pete told me about another project in which people with and without disabilities took everything out of their pockets and compared what kinds of things we all walk around with…  he says the differences were “heart-breaking” (pretty sure that was his word) – staff and allies had credit cards, cash, keys, photos of family, good luck charms…  and on the other side, not very much.

In Al Etmanski’s blog posting of April 22nd, he briefly examines First Nations youth in government care – there are more of them now than were in residential schools, only 40% graduate and funding for reserve schools is 25% less.  “Something should be done about this.  Somebody should do something,” he writes, and then discusses advocate leaders who have significantly changed public policy.  It’s a fascinating post, but what I liked about it was this passage:

I find it really tragic that after ten years, over thirty audits of first nations issues on reserves, a fair bit of money and hard work by public servants, conditions are worse today than ten years ago… We can’t keep doing things the same way. Obviously it’s just not working. (bold, his)

He says that “two pre-conditions” are required for “tough problems” and the first of these is to realize that our possible innovations “must be implemented within an eco-system of players comprising friends, allies, opponents and strangers” and that without such working together “the best and worst solutions will be undermined.”  The second pre-condition is that the players must,

admit they are flummoxed, baffled and desperate – that they don’t know the solutions or indeed how to arrive at them . . ..  This move from hubris to humility opens up the possibility for rethinking the problem, for re framing the solutions, for exploring ideas you might otherwise reject, for taking risks, for entertaining new approaches.  Businesses . . . have to constantly rethink their business model. They call it R&D. Otherwise they will go out of business – think Kodak, or video stores.  Before innovative solutions (business or social) can be introduced it is essential to put aside your claims of omnipotence and at least admit you don’t have all the answers.  . . .

Part of the discussion about research and development in our field is, where is the research we can use in our daily practices?  Partly, it is in the universities, partly people like Dr. Michael Kendrick hold it (and share it) and partly it is right in front of us if we just create a time and space to reflect on our own practices.   Researcher Robert A. Stebbins, in his excellent little book, Exploratory Research in the Social Sciences, writes about the idea of the researcher’s life of exploration and attentiveness, and of how the systems around us and our very language will discount what seems open-ended and impractical and yet only through the examination of what’s found can we move forward.   There is a difference, he says, between consciously exploring what matters to us, and serendipity.   Serendipity may well lead to some great ideas, quite accidently, even while engaged in the same old methods, but a conscious exploration, based on theory, put into practice, examined attentively and subject to reflection, can lead to real change, or at least possibility.   Stebbins goes on to discuss exploration and confirmation and that the opposite of examining what we do is a kind of stasis of unexamined self-satisfaction.

We often forget that the ways in which we are supporting people with disabilities in our culture are still experimental – there really are no definitive rules.   What seemed good twenty years ago, or fifty, seems wrong now.  And, currently the continuum of possibilities is huge and dramatic – people supported by their families at home, without any interaction with paid services, in ways that work for them, might well end up next year in supports where everything they do is prescribed, monitored, documented and “improved” on through a kind of professionalized expertise that many find inarguable (check out Chester Finn’s story of his health crisis, which landed him in a day program, after years of independence and national advocacy).

We recently used our office for a public event and at least a few families invited didn’t realize until they got there that we were an agency…  and were obviously uncomfortable and it was hard for them to stay.   Their experiences of agencies like our own, with our sole purpose being the support of their children and siblings, has not been positive at all.  To quote Etmanski, “Something should be done about this.  Somebody should do something.”  It’s not okay that the agencies and organizations created to support people with disabilities and their families intimidate those we intended to support.  To approach such questions requires reflection, and mindfulness, time and of course the will to change.

For us, even on a small scale it’s been great to work with small focus groups and to learn to engage in dialogue and hear what people are thinking – self advocates, staff, families, community members, and then to share that information with others and increase the momentum of the conversations that will, hopefully, lead us to better places.  Yet, is it really the work of an organization like ours?   I think if we look at critical thinkers like Dan Pallota who deconstructs the very idea of a charity or a charitable service provider, we end up with some really great questions.   In essence, Pallota’s concern is with efficacy – does the work of the charity lead to lasting and effective changes?   What are we getting (or giving) for our tax dollar? If we are only service providers, we can make a case that our daily supports create the conditions for inclusion for people with disabilities, but every group of people with disabilities that we meet gives little credit to the organizations supporting them and whole groups of parents and self advocates want little to do with organizations designed to support them.   Further, no agency or organization that I’ve met (as of this month we’ve done 99 workshops and some of them have been gatherings of several agencies together) wants to hear from families or self advocates that they aren’t trusted or doing what needs doing – people gather to create organizations with good intentions and want to be effective.   So there’s a gap to address.

Alternatively, we can leave research to others, but this buys into a kind of patriarchal ahistoricism – that the experts know best.  In the end we know the stories of those we support, where so much of their power and possibility is…  and we can implement theory into practice in moments, rather than years.  We should want to be part of the conversation and we should be figuring out how to be present.

So the question of how we can do things better requires us to create time and space and partnerships for other more exploratory conversations and new theories of support.   As Etmanski says, R & D.   People in our field often talk about working ourselves out of a job, and that’s a great thing to be thinking of – but what we imagine is doing our jobs so well that people are supported in their communities and no longer need us.   Without some new ideas and new practices, however, we may instead end up out of a job because we’ve simply been ineffectual, like the folks at Kodak (and the staff at Woodlands, many of whom were still in disbelief as community living succeeded, and some of whom are still objecting).  At transition fairs we’re constantly meeting young people who do not consider themselves “disabled” and who hope to live without any supports, because what they’ve experienced has been reductive.   In self advocate groups I end up in the same kinds of discussions, about how those folks we are commissioned to support have organized their lives to get away from us.

I don’t know what the answers are, but I think the questions and the idea of collecting evidence with which to move forward is exciting.  I am really looking forward to BCACL’s pre-conference day on Wednesday, May 30, entitled “Centre for Inclusion and Citizenship – Research With Relevance,” on research with Tim Stainton and Rachelle Hole.   It looks like a great day:

  • An overview of why research is relevant; why we do it, ways we share it, and how we use it;
  • Discussions on how research can increase organizational capacity; how you can collect and analyze information; and how to ensure the meaningful engagement of people with intellectual disabilities in research;
  • Presentations on our latest research findings on Individualized Funding, Home Sharing, and Health and Healthcare for Older Adults with Intellectual Disabilities;
  • Highlights of the Canadian Inclusive Lives Learning Initiative; and
  • Opportunities to contribute to the development of a provincial research strategy we can undertake in partnerships to move us forward, steadfast and strong.

The participation of self advocates, families, students, service providers, educators, policy makers, and others is welcomed and encouraged.

Tim and Rachele, through the influence of UBC and the Centre for Citizenship and Inclusion, have been singular players on a journey dedicated to bringing best practices to agencies and families.  Why not seize it and take a day to reflect on what we might learn together?

We believe in kindness, sharing and abundance.   If you’d like to share any of the articles or illustrations (not photographs of individuals, who have only given us permission to use their photos here) from the 101 Friends blog  you are welcome to do so for the uses of non-profits or social justice organizations, giving credit to – a note letting us know either in the comments or by email or twitter would be great!   Copies of our books, posters and media works for use by groups are available at  Donations to further our work can be made here – specify Research Training and Development if it matters to you, otherwise it’ll be used where it’s most needed.

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