Day 76 – Terra Nova National Park to Chapel Arm, NL – 158km

Three years ago, I had a thought. I tried to imagine myself cycling across Canada. “There’s no way,” I told myself. I went out for road rides and couldn’t get the idea out of my head…If I can do 180km today, there’s no reason why I can’t do 100km on the day after today… “There’s still no way,” I told myself.

Through the years that I was in middle school and a junior in high school, my brother had an ongoing battle to get the education he deserved. One of his teachers took his communication device away because she thought the voice was annoying.

Sometimes new vocabulary would be programmed onto Kerr’s Dynavox. He would go to school with a note for his teachers which explained the new programming and asked them to work with Kerr on using it. We later found out that the school considered these notes harassment. Whenever our family pushed for an improvement in Kerr’s education, Kerr seemed to suffer reprisals—forced to eat his lunch in a different room than other students, less time with his attendant who had worked with Kerr for years, and coldness from some of his teachers. Sometimes Kerr came home with a full lunch box. They weren’t even feeding him his lunch sometimes.

Kerr withdrew. He was bored and depressed. Kerr’s assistant would come home in tears some days after witnessing what was happening. I was younger at the time. I knew my brother had every right to communicate and that people who I did not know were taking this right away from him by underestimating and refusing. I was filled with anger. I think this was the only time in my life where I’ve had pent-up hate for particular people. I hadn’t even met these people, but I wondered what had happened to them to make them so naïve and wretched. Biking and running have always been my main outlets for stress and anger (not that I’m angry if you see me running).

I’ve learned a lot since then. I still have many of the same thoughts. However, I now know that it’s not as simple as certain people being cruel and narrow-minded; although there was a lot of cruelty and narrow-mindedness. The politics of a segregating system and disabling attitudes that people learn from others around them are the frameworks that discrimination is constructed from.

Sometimes I like to talk about my problems. I think it’s the healthy thing to do. The unfairness that my brother was experiencing became a battle with the Toronto District School Board that lasted many years. This battle consumed our family life. Ironically, although we were talking about the situation all the time, I never talked about my anger or frustrations. I was sick of the situation. I wanted to tune it out. We were all stressed out and tense, Kerr was depressed, and arguments were arising between us. My mom didn’t need any more stress at this point—she was on a strict macrobiotic diet to eliminate cancerous growths. I hated these teachers, the principal and everyone who made my brother’s twice a day, one hour trek to and from Scarborough for school meaningless; not just meaningless–torturous. I hated these people for ruining our family life.

Biking and running were my emotional releases.

At the end of high school I was thinking much more positively. Kerr had left school. Our battle with the school board had transformed into a legal fight. Kerr was no longer in jeopardy of being discriminated against and not having his needs met on a daily basis. Our family still had our stresses, but we were doing better. Kerr was doing better too. He was volunteering at the Royal Ontario Museum and doing research at the Toronto Archives, giving presentations on human rights (at least some positive things came out of this experience), and learning lots more with his assistants than he learned in the toxic condescending environment at his former school.

This “cycling across Canada” thought wouldn’t leave my head. In grade 12, I made it final that I was taking a year off before university. As you can tell from reading the last couple paragraphs, this experience my brother endured for too long triggers spite in me that most people who know me can’t believe I possess. I’m very passionate in my belief that every person has a right to be included and to have a voice. In Kerr’s experience, he was stripped of his voice, stripped of his humanity, and treated as an object. I knew that my brother wasn’t the only Canadian alternative communicator with such experiences.

I wasn’t sure how, but I was sure of who, why, what, and when. I was going to cycle across Canada to raise awareness about people who speak with augmentative and alternative communication and to try to get values of inclusion and the presumption of ability in mainstream media. I wanted to improve the lives of all Canadians who have disabilities, my focus being on those who are in situations similar to my brother’s. I hadn’t thought much about fundraising at this point, nor had I thought much about advocating for new policy. I knew that I needed my brother’s help. I knew that my mom would be a powerful force in the campaign. I knew my dad would be behind us, and willing to make any sacrifice to make it happen. I talked to my friends, family, and network. Slowly, Kilometres for Communication took shape.

That was three years ago. Tomorrow I finish my pedal across Canada—all the rain, wind, hills, mountains, blisters, sores, thirst, flat tires, fatigue behind me. By no means is this journey to empower voices or prevent what happened to Kerr from happening to others over. However, it does feel that years of emotion, planning, months of giving everything I have, the stories from all the people we’ve met, are manifesting. I haven’t finished yet, but I know that when I do, I will know a new feeling.

Today wasn’t a tough physical challenge. The wind wasn’t a huge factor. There were hills, but what goes up must come down. The sun was out. Nonetheless, today was one of the toughest days mentally of the trip. I was feeling some pain from some rashes. Moreover, I felt so close to finishing, yet I knew that I wasn’t finishing today; that I’d have to wake up again tomorrow and do it one more time. I went through each day of the trip. I tried to go through each road I took, the weather, and the people I met. I had shudders thinking about my days in the prairies and the days of rain in Northern Ontario. That, in combination with thinking of the memories from the last decade, the last three years of planning, and the training 3 hours a day, 6 days a week, got me through today.

At one point today, I was quite high up on a section of the Trans Canada going from the mainland along a channel of land to the Avalon Peninsula. The sky was blue. I could see thick cloud in the valley below me, which I was about to descend into. It really was an epic view, being above the dense clouds and seeing the ocean outlined by misty mountains fading into blue on my right and left. Someone down in that valley probably is wondering where the beautiful day went. They might even think it’s going to rain. I descended into the valley. I lost my view of the ocean. The clouds weren’t dark or threatening from below. They were even more spectacular. The light reflected off the afternoon fog in a magical way that I have never seen before. Life has a way of hiding beauty from those who are afraid to venture.

I cycled by an exit to a place called Mosquito Cove. My first thought was: “Why build a road to such a wretched place?”. On second thought, maybe some people have discovered a gem which they want to keep polished. Perhaps Mosquito Cove is simply a deterring name to keep the tourist traffic away. There’s always another perspective to be taken.

-Skye

August 2/11

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Camped by the rapids of the Kicking Horse River

May 30, 2011

We’re camped in Golden, B.C. , by the rapids of the Kicking Horse River surrounded by mountains, many of which are snow-capped.  Each night we are in awe of our surroundings.  Skye had vigorous climbs today, and again we played leapfrog.  He started off cycling.  I finished tasks in the campground, and then drove until I passed him and pulled over so he could get water and food before cycling again.  I tried to catch up with emails and other tasks as I waited for Skye, parked in one scenic spot after another, surrounded by mountains,  across the road from waterfalls, beside rushing streams and rivers in the presence of towering coniferous trees.

Right now the question is if we are going to be within range of cell phone and internet.  This is our connection to Kerr and Burns, to our cross-country network, as well as my connection to my clients in Toronto.  For those who don’t know me, I’m a psychotherapist, and it has been quite difficult for some of the people I usually see that I have left Toronto for three months.  I have agreed to do sessions as possible over the phone, but it has been more challenging than I had anticipated with the three-hour time difference, with Skye’s schedule and needs, with events and media.  The unpredictability of cell phone and internet complicates matters, and all appointments are conditional on the availability of cell phone reception.  It’s by no means ideal.

The uncertainty I feel about whether I am going to be able to reach the people I need to communicate with makes me very aware of the uncertainty Kerr and others who communicate with AAC must feel on a regular basis as they go out into the world.  Will there be communication and connection?  Will there be acceptance and understanding?  Will there be patience?  Will there be attunement?  Will there be success or disappointment?

I had an experience when I was a child which I’ve been remembering  lately.  In my childhood excitement over a school party, I was doing some over-zealous ballet leaps in my bedroom one morning.  I crash-landed with a bad bump of my head, which resulted in an acute headache.  I was determined to go to the school party, so I didn’t let my parents know, but when I tried to put on my coat and boots, my hand-eye coordination was totally askew—I couldn’t get my arms into my jacket sleeves or my feet into my boots.  Soon afterwards, my speech became completely garbled.  I have a vivid recollection of lying on my parents’ bed, being very clear-headed, knowing exactly what I wanted to say, but hearing my own gibberish every time I tried to speak.  The people around me were panicking, and I had no way to tell them  I could think and understand in the same way as usual.  My experience only lasted for a number of hours, but it was profound and isolating.

Years ago I met a middle-aged woman who had had a stroke when she was in her early 20s.  She talked about lying in bed for about a year, having no way to speak at the time, but understanding everything, including the conversations among the people who came into her room and talked about what a shame it was that she was ”a vegetable”.  No one thought to offer her an alternative way to communicate.

And what about alternative ways to listen?  We’re hearing about the frustrations with AAC  technology from many of the people we’re meeting.  Some are able to speak,  but not in a way that can be easily understood by others, although they often  cannot understand why this is, because to them, their speech is completely understandable.  To them the AAC technology is slow and tedious in comparison to their speech.  Others use their own personal sign language and don’t understand why those who have known them for awhile haven’t learned that personal sign language. We certainly have a number of friends who communicate without language, and the challenge they pose to those of us around them is how to listen when what is said is without words.  The questions I am asking on this journey are not only about the many ways to communicate, but also about the many ways to listen.

Gail

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

Let the blogging begin!

This blog is about communication. It’s about a special kind of communication called AAC. (I personally struggle with this term; it stands for Augmentative and Alternative Communication, which is too much of a mouthful for me. AAC is simply an alternative way to communicate when someone has limited or no speech.) This blog is about disability, and navigation of disability in a society which orients itself towards people who are able-bodied. But this blog is also about ability, diversity, capability, possibility, hope. It is about our humanity, and about our connection–one person to another. It is about community and inclusion, and about how wrong it is for any of us to exclude and to make the decision that someone does not belong because he or she is different. So this blog is also about the importance of accessibility, because accessibility is a key to inclusion, belonging and community.

Kilometres for Communication was inspired by my son Kerr (pronounced “Care”), who is an artist, educator, social activist, writer, story teller, gardener, community facilitator. He happens to travel in a wheelchair and communicate with AAC. About two years ago Kerr and I had come back from the ICE conference (which stands for Independence, Community, and Empowerment), where he and I had given a presentation called: “Earth to Dark Clouds: Where are those Silver Linings?” The ICE Conference (which is now called “Breaking the ICE”) is a special experience because it is centred around people who speak in alternative ways. I was one of the few presenters who didn’t speak with AAC. Kerr and I arrived home after an inspirational weekend to meet Kerr’s younger brother, Skye, who was in a thoughtful mood.

Skye was 17 at the time, a senior at North Toronto Collegiate, who was planning on taking a year off before resuming his education at the University of Waterloo.

“I want my year off to be profound,” Skye said.

I was a little taken aback, but curious. “What do you mean?”

That’s when Skye first talked about his idea to cycle across Canada, and when our whole family—Kerr, Skye, Burns (Kerr’s and Skye’s dad) and I first discussed the idea of raising awareness about the many issues—yes, the many struggles—there are for people who communicate in diverse ways. Over time the idea evolved. Skye would cycle across the country. The rest of us would accompany him in a support vehicle. When safe and possible, Kerr would travel in a bike trailer. We would meet with people who speak in creative and diverse ways, and with the help of the media, introduce them to Canadians so that never again could they equate not being able to speak with not having anything to say. We would invite people to wheel, walk, run and cycle with us, and we would invite organizations, small groups of people and individuals to host events across Canada to raise public awareness and funds to empower voices and to make accessibility and inclusion a national priority for the more than 3 million Canadians with disabilities.

Kilometres for Communication was hatched, inspired by Kerr, conceptualized by Skye, and nurtured by Burns and myself. Later we found our charitable organizational partner, ISAAC Canada. It’s the Canadian Chapter of the International Society for Augmentative and Alternative Communication, an NGO in Special Consultative Status with the Economic and Social Council of the United Nations.

On May 19th, 2011, Skye will dip his bike into the Pacific Ocean at Port Renfrew, British Columbia, and Kilometres for Communication will be officially launched. It’s grassroots and an adventure. After more than 5000 hours of our planning and hard work, we’re not sure exactly what to expect, since it’s all volunteer. There are many people involved, many to thank (which we will try to do over the next little while), and it is our goal that by August 4th when our trip ends in St. John’s, Newfoundland, that voice, accessibility and inclusion will be on the minds of Canadians in a different way. We are raising money for AAC services, supports and technology, as well as for projects, opportunities and education that will enliven and empower the voices and lives of people who communicate in alternative ways. We will be advocating for changes in provincial policies so that AAC services, supports and technology are readily available to anyone who needs them. We are dedicated to the belief that everyone deserves a voice.

Gail Fisher-Taylor

Website: http://kilometresforcommunication.com
Facebook: Kilometres for Communication
Twitter: km4communicat