May 23, 2011
It is hard to believe that it is only 17 days since we left Toronto, and 14 days since we began our drive across the country for Kilometres for Communication. Having come down with a wicked cold which quickly turned to bronchitis, I’ve had to conserve my energy as much as possible, while at the same time driving about 700 kilometres a day on the journey out west, learning how to drive and operate a recreational vehicle (hmmm-black water, gray water, fresh water, propane—and how wide is that one-lane bridge, will my mirrors be clipping those pedestrians, and where can I park this monster?), dealing with the vagaries of unpredictable cell phone reception and internet, while taking care of many other daily tasks, all with my energy on low volume.
It has been wonderful, exhausting and exhilarating. I feel honoured to be Skye’s and Kerr’s mother, and grateful and in awe of the generosity of the many people who have already made Kilometres for Communication a moving and successful campaign. While this is a public education and fundraising campaign, it is also a campaign about human connection, synergy, and inspiration. There are people all over Canada putting their hearts into awareness, education and fundraising events.
We are also hearing from many families who have been inspired by Kilometres for Communication. It can get very lonely, not just for the individual who speaks in different ways, but it can also be isolating and painful for families who experience their family members being misunderstood, segregated and excluded in so many ways and in so many circumstances. There have been many times when we’ve spent an evening with friends, and I feel sad because in the hurry and flurry of socializing and entertaining, we haven’t been able to ensure Kerr’s full inclusion and participation if he’s without a communication assistant. Conversation is moving rapidly, and Kerr gets left out if there are more than a few other people involved and we are the only ones paying attention to what Kerr thinks, feels and wants to say. It’s wonderful when everyone makes Kerr’s participation important. All of us slow down, and there’s a different feeling to the whole experience. So I imagine families are inspired by Kilometres for Communication because it brings hope—for more understanding, for more possibility for communication, for more inclusion, and for networking among “Cool Communicators” (I think this is a wonderful way to describe people who communicate in different ways) and among families.
Before we left Toronto, Barbara Collier of Augmentative Communication Community Partnerships Canada (ACCPC), asked me to spread the word about their “Proposed Communication Bill of Rights for People who have Speech and/or Language Disabilities” (http://www.accpc.ca/BillofRights.htm). Please take a look, and tell ACCPC what you think about it before July 8, 2011.
I’m not sure I’ll ever catch up with all there is to do, but as I am writing this, I am sitting in our rented RV, surrounded by snow-covered mountains, glad to be on this journey.