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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4 thoughts on “Day 76 – Terra Nova National Park to Chapel Arm, NL – 158km

  1. I am so happy that tomorrow will bring you to a planned completion of your goal…we know that the fight for human rights and inclusion will go on, long past tomorrow. Thank you Skye for being the wonderful young determined man you are. Thank you Gail and Burns for being our friends. And thank you Kerr for being our teacher and our inspiration. My life and our family are richer for having known you!
    Much love,
    Nancy

  2. Skye…. what an honest account of the struggles of your family and the motivation behind this amazing journey!!! You and your family have done such an awesome job at raising awareness of the challenges people who use AAC so often face. Like you, I am often enfuriated when people think they can take away a person’s communication system/device. During presentations within our school board or to Spec Ed courses, I’ve taken to asking teachers, EA’s etc… if they would consider taping the mouth of a typically developing student who spoke out of turn or repeated the same question/comment too many times. Of course they are emphatic in their response of “no… that would be cruel”. So I remind them, then please don’t take away the voice of a student who uses alternative means to communicate… just work to teach them appropriate use of their voice as you would other students!!!

    You are almost there!!! St. John’s is an awesome place to complete your journey. Congratulations on realizing this amazing dream you’ve had for so long and for helping spread the word of the humanity of people who communicate differently… it is a far reaching message. Thank you Skye!

  3. We will all miss your blog each day, Skye. Your goal, with your family’s support, is soon to be achieved. What a glorious feeling you will have in showing what can be achieved each day by getting up, no matter what, and putting one foot ahead of the other. Small steps in succession can and do achieve great things. May we all learn from this and feel inspired to carry on the spirit of the Kilometres for Communication Project in our communities across this great land of ours. Small steps in every community can join to accomplish much for all whose right it is to communicate. Let’s not stop talking!
    Heather

  4. As I write this message to a family I know call the “Incredibles”, Skye is making the last leg of his journey. After reading Skye’s most recent blog the emotions I am sitting with cannot even be put into words. Gratitude, admiration and tremendous respect – are not even powerful enough words to begin to describe what I am feeling for all of you at this moment.

    Every one of you should feel so proud to have accomplished this “incredible” feat together – you are all super heros to me!!!

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