The View From Here

Skye and Kerr at Rick Hansen's 25th Anniversary Relay

It feels so good to be home, and to be reunited with Kerr and Burns. For a short time it was wonderful to have the whole family together before Skye went back to the University of Waterloo in early September. We’re looking forward to his return for the holidays.

I have committed to pacing myself. The three months on the road were wonderful, but demanding and exhausting, and they followed two years of preparation for Kilometres for Communication, in addition to a hectic work schedule, our human rights case, and the ongoing challenges that sleep deprivation, Kerr’s ongoing seizures, and the sudden unavailability of attendant care presented.

After months in an RV, home feels luxurious with interior space to move around in, with water we can drink out of the faucet, with phones and internet that are predictable, without worries about how full the gray water and black water tanks are, and how empty the propane tank is. Home, Sweet Home!

The three months on the road have given us plenty to reflect upon. Of all the experiences we had, I’m not exactly sure why I want to start with one in Nova Scotia when we were parked in a campsite with a beautiful view of distant ocean. I was looking out at the water as I worked at the computer when a big pick-up truck backed up from its spot a few campsites over and parked directly across the road from our RV, completely blocking our view. The pick-up truck owner then proceeded to build a fire in close proximity to the spot where his truck originally had been parked, and sprawled out his legs as he comfortably lounged in a lawn chair that was now parked where his truck had been. He obviously was enjoying the view which Skye and I could no longer see.

I meandered over to this sprawling, lounging camper, smiled, said a friendly hello, and asked him if he would mind moving his pick-up. He responded in an equally friendly way, and said with genuine surprise, “Oh, it never occurred to me that my truck might be blocking someone’s view. Sure, I’ll move it!” Hmmm…it had never occurred to me that it might not have occurred to him that his truck was blocking our view.

I’ve been thinking about how often I’ve been surprised by what has never occurred to people about Kerr: that he has feelings, and they can be hurt; that he wants to be accepted, understood, engaged and respected (like anyone else); that he needs to be addressed directly; that he is extremely sensitive to people’s feelings and when someone who meets him or is getting to know him feels uncomfortable, that Kerr responds with equal or greater discomfort; and when that happens, his most common coping strategy is to withdraw. I have come to the conclusion that sometimes—not always—people’s exclusion of Kerr arises purely out of a lack of awareness and experience.

I keep reminding myself of what I didn’t know before Kerr came into my life. What is obvious to me in 2011, once was frustrating and mysterious. Now that Kerr has AAC (augmentative and alternative communication), he is able to do a great job of informing and educating people who take the time to get to know him. There are many situations, though, where there is so much going on—conversation, ambient sound, other environmental factors—that Kerr becomes overwhelmed and withdrawn. It is helpful and wonderful when people are comfortable talking to Kerr, and they are sincerely engaged in conversation with him. I realize, though, that this can be challenging when people just don’t know how. Often, when I’ve tried to make suggestions, it creates social awkwardness. At other times, the conversation is flowing, Kerr is overwhelmed, withdrawn—and excluded. I always feel badly when this happens, and I feel even worse if I haven’t done anything to assist him and to assist others in understanding him when he’s not in a position to do so for himself. I’ve often caught myself absorbed in conversation with a group of friends, but aware that Kerr has slipped deep inside himself because we have not included him. If it’s a small group of people who know Kerr, we can work together to correct the situation, but if it’s a larger group of people who are not particularly sensitized to Kerr, I feel like I’m swimming upstream. After everyone has returned home, I’m left feeling conflicted—pleased about the flow of conversation, but sad and guilty that Kerr has once again been left out.

I love it when people really want to know Kerr and how he communicates, or when they feel unsure, they ask us, so we can help. It is especially wonderful when they realize that Kerr is truly like the rest of us in all of the most important ways. When others talk from the comfort and knowledge of that perspective, Kerr feels and knows it, and it makes a big difference.

Knowing Kerr keeps widening our perspective, and there is so much more to see and understand when the view is panoramic.

Gail

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Homeward Bound

August 6, 2011


There is something mesmerizing about looking out at the ocean, watching the waves undulate.  We are on the ferry from Argentia, Newfoundland, to North Sydney, Nova Scotia.  Skye and I have a cabin with a large window looking out at the sea, and we are on our way home after more than two and a half months on the road, and it feels good to be homeward bound.  It feels particularly good to know we’ll be seeing Kerr and Burns soon, and resuming life as we know it.

There is a very different feeling to this journey than to the one at the beginning of our trip westward.  There were so many unknowns at the beginning, and with them, accompanying anxieties.  My biggest fear was about Skye’s safety.  That fear was intensified when one of my contemporaries told me about setting out to cycle across the country many years ago, only to have his plans curtailed by a car with a trailer that fishtailed, and landed him in the hospital, fortunate to be alive.  Now, there is not only the relief that Skye is alive and well, but I feel such a sense of pride in Skye’s accomplishment, and I am moved by his passion, dedication and self-discipline.  Cycling across the country is a feat for anyone who does it.  Add to that, actively participating in approximately 25 events, sticking to a rigorous schedule because of those events, blogging mostly on a daily basis—often when he was dog tired—and  talking to the media countless times; this was an extraordinarily challenging journey.  The weather—particularly the wind and the rain—was often more of a fierce opponent than a friendly companion.  Skye did it all, day after day, and I could tell from the responses he got from one Cool Communicator after another, as we traveled across Canada, that Skye’s journey sent an implicit message to everyone who speaks in different ways, not only that , “You deserve to communicate,” but that, “You deserve to be treated in the same way anyone else is treated, you deserve to participate, you deserve to be respected and valued”, and “You are important.”

Now, on this journey home, there is a sense of having faced the challenges, having sent the messages over and over again, a sense of how important it is to keep sending those messages, and a sense of how much work there is to do to ensure everyone is able to communicate to the best of his or her ability and  to participate fully in every aspect of  Canadian life.

We also have a wonderful sense of community.  There are so many of you who inspire us, Cool Communicators across the country who, through the way you are living your lives and through your advocacy, are making a difference; dedicated professionals—many of you members of ISAAC Canada— who are passionate about AAC and who have worked hard to make the events across the country happen; and families who are trying desperately to find the services and supports to help your loved ones communicate and live meaningful lives. And then there are all of the volunteers who jumped on board, some of you who knew little or nothing about AAC before getting involved in Kilometres for Communication. There are those of you who joined us along the way, old friends and new friends who cycled or traveled with us. There are our sponsors, many of you unfamiliar with AAC before making your contributions to Kilometres for Communication. There are also all of the reporters who understand the importance of what we are trying to do, and who are doing a wonderful job of helping us to spread our message.  There are those who have donated and those who have continued to encourage us every step of the way. The hospitality we’ve been offered has been extraordinary.  Skye and I talk about Kilometres for Communication as a campaign of generosity; it has been personally restorative and rejuvenating. To all of you who have participated, contributed, encouraged, and supported, I add my heartfelt thanks to Skye’s.

I want to say a special thank you to everyone who has submitted stories to our website.  I apologize for the delay in posting them—not an easy task to accomplish while on the road with slow, unpredictable or nonexistent internet.  Posting stories will be a priority once we return home, so thanks for your patience and understanding.

Skye has completed his cycling journey, but Kilometres for Communication has just begun.  We look forward to continuing this journey together.

Gail