42km to inclusion; if only it were that easy.

A disability is only a disability when a person is hindered by his or her surrounding environment. I want as many people as possible to know how to communicate with people who speak with Augmentative and Alternative Communication (AAC). A disability can be a gift just as much as it can be disabling. On Sunday, May 6, 2012, I’ll be running another marathon…perhaps in a costume. Likely in a costume. Almost certainly in a costume. My purpose: to raise awareness. I want to get as many people as possible reading the points below in this post, and learning about how to properly communicate with someone who has a communication disability.

I think that isolation and systemic discrimination can stem from uncertainty. Below are some key points about how to be an agent of inclusion, and how to properly interact with people who communicate differently.

  • Be curious. Ask how the person communicates. Give the individual time to respond. Observe what body parts he/she controls, if the person has a communication device, a letter board, or blinks. There are many forms of communication. Engage. Observe. Keep an open mind. Be patient. Be enriched.
  • “Ask one question at a time and wait for a reply.” (ACCPC, 2009)
  • “Talk directly to the individual, not to the person who may be accompanying him/her.” (ACCPC, 2009)
  • Watch for body movement—someone may operate a communication device using his or her head, knee, toes, etc. Don’t walk away if you notice the person using their computer. It may take him/her a minute to assemble their sentence.
  • “Speak naturally and clearly, using your normal tone, volume and rate.” (ACCPC, 2009)
  • Try to establish a yes and a no—“show me your ‘yes’”. Observe how the person responds.
  • “Do not speak about the person or refer to the person in the third person when in his/her presence.” (ACCPC, 2009)
  • Always assume ability.

I was planning to run this race with a friend named Tien (he communicates using AAC). One thing you need to know about Tien and I: we are divers, full of ambition, and quite determined to make the unrealistic and unexpected work. It didn’t work out this time. The logistics of planning our run together required more planning than the time we had…we came up with the idea and tried to run with it last Sunday. Tien won’t be running with me this Sunday, but expect our collaboration in the future.

Here’s what Tien would like people to hear:

“As being one of hundreds of thousands of AAC users, I would like to see the people in our communities, to provide us accessibility in communication, transportation and education, to try and take time to understand us when we ask for it, and to treat us like any other able bodied individuals. We may, perhaps, look different, act differently and communicate differently, but most of us can think, learn, and interact with the world like ordinary citizens. We need people to realize everyone has a voice of their own, and so do we!” (Hoang, 2012)

To hear more stories and voices of Canadians who speak with AAC, please visit: http://kilometresforcommunication.com/stories/

Here’s a picture of the last race’s costume:

Image

Photo credit: Jeff Cheah. Click on the photo to see a non-distorted full version. 

Curious about what this race’s costume will look like?

  • Have Facebook? Go on the Kilometres for Communication Facebook page and share the status posted on May 5, 2012 or share the link to this blog on your profile.
  • Have Twitter? Tweet this post.
  • Feel like sending some emails? Please do…with the link to this post. 🙂

Route of the race and timing will be posted later tomorrow on the KM4C Facebook page for anyone eager to witness in person.

I hope that more awareness will be raised, some of you will get a laugh, and that there will be more agents of inclusion making the world a better place. Thanks for reading, and please pass this on!

-Skye

Works Cited

ACCPC. (2009). Communication Access for People Who Have Communication Disabilities. In B. Collier. Queen’s Printer for Ontario.

Hoang, T. N. (2012, May 2). (S. Wattie, Interviewer)

Augmentative and Alternative Communication Community Partnerships-Canada: http://www.accpc.ca/

Advertisements

Catching up in Hope, B.C.

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.

Gail