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Welcome to the July e-newsletter

June 30, 2011

Barb Goode, Aaron, Norman (front), Jim, Zev, Emma Van der Klift - at the Spectrum Press 2011 Book Launch

It’s been an incredible, wonderful month of conversations and interactions.   We traveled to Syracuse, NY, to visit with folks at Onondaga Community Living, and came home to attend the CLBC Self-Advocates’ Summit and in both places found people being supported by networks of family, friends, co-workers, employers, educators and various kinds of paid or bartered-for supporters.   It constantly occurs to me that if we decide to change one thing about our perception – in our case, we started to take John Lord’s advice to look at everything through a lens of relationship – how much comes into question.   Everything.  At one time, I thought that person-centred planning might be the lens that would allow folks with disabilities to assume citizenship, but that was before I attended the “behavioural PATH” – a wonderful co-facilitated graphic planning process that was invented to foster dream-teams of allies but had, in that case, been subverted by behaviour therapists to address ten behavioural support needs.   Yikes.  Or before someone said they were exhausted from doing a dozen person centred plans in a week, by themselves.   Without the folks they planned for.  Without their families.  With no friends present.  And that was before a government worker told me that the difference between the “old” kind of planning and the new person centred planning was the inclusion of photographs: “It makes it look more creative.”   In any case, I am often horrified for what systems have done to the inspired work of John and Connie Lyle O’Brien, Judith Snow, Marsha Forrest and Jack Pierpoint, among others.   This doesn’t mean person centered planning is impossible but it certainly gets more likely when there are friends and family present, and when a behaviour therapist isn’t doing the facilitating according to a pre-set agenda.

When we bring others into our meetings for the folks we care about, we cannot but help to see things through their eyes – through that lens of authentic caring – we can ignore what we see, or look away, but it colours our conversations and changes the possibility of walking the walk with people.   It increases the chances that our response will be normative: “what would I want in a similar situation?”  If our answer is “a one to one worker” or “a segregated group of people with similar issues” then we could look at that, but, at least for me, those are not answers that come up.   Ever.   I am reminded of this passage from A.J. Jacob’s The Year of Living Biblically:

“I know that everything is connected like a worldwide version of the six-degrees-of-separation game. I know that history is simultaneously a bloody mess and a collection of feats so inspiring and amazing they make you proud to share the same DNA structure with the rest of humanity. I know you’d better focus on the good stuff or you’re screwed. I know that the race does not go to the swift, nor the bread to the wise, so you should soak up what enjoyment you can. I know not to take cinnamon for granted. I know that morality lies in even the smallest decisions, like whether to pick up and throw away a napkin… I know firsthand the oceanic volume of information in the world. I know that I know very little of that ocean… I know I’ve contradicted myself hundreds of times over the last year, and that history has contradicted itself thousands of times… I know that you should always say yes to adventures or you’ll lead a very dull life. I know that knowledge and intelligence are not the same thing—but they do live in the same neighborhood. I know once again, firsthand, the joy of learning.”

As we begin our summers, I have to say that the high points of this month and also last month have been spending time with Norman Kunc and Emma Van der Klift.   The last of the photos from our Barb Goode book launch are coming in and I particularly like this one of us all.   If you haven’t heard Norman and Emma speak, or been to their workshops, make it a priority for the next year.   email me and I’ll organize their return for a more public audience.   With every interaction I find myself experiencing, as Jacobs says, “the joy of learning” in whole new ways.   You can find out more about their work and contact them here:

Do go check out our new online storefront at – we’ve been getting orders from as far away as New Zealand and Australia, from both coasts of the U.S. and places in between, and from several places in Canada.   This month we started getting orders from local libraries, who are excited to have access to books by, for and about the people with disabilities that they care about – how cool is that.   Let your library know if you’d like them to make an order for our books.   On the tag cloud click on “submissions” to see what we’re currently working on and if you’d like to be part of our work.   Our publication plans for 2012 so far include two new books for children, two anthologies, a tentative introduction to our work for community supporters, and a set of inspiring posters, cards and t-shirts.   At the end of September we’ll be conducting several workshops around the province, and hosting David Pitonyak on Supporting A Person With Post Traumatic Stress Disorder.    This often unacknowledged syndrome affects many of the folks we support, but also their families and staff – it’s a great workshop for those in the field, managers and professionals engaged in this work.

One Comment leave one →
  1. June 30, 2011 3:27 pm

    Very cool!

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