Striding for Inclusion

It’s been a busy week, but alas, as promised, here’s a blog post on running a marathon in a French Maid costume.

15km in. Still loving each stride.

Some of you know about marathon running. However, a vast majority of you think I’m a strange, strange person. (To gain greater context to this post, you can read Kerr’s (my brother) and my story: http://kilometresforcommunication.com/stories/ )

What possesses me to run marathons? Running is mostly mental. If you’re running to the limits of your ability, there will always be a point in the run when you ask yourself: “why am I doing this?” If you aren’t able to answer this question, your run ends there. For the first 30km I project how lucky I am to be able to move one foot in front of the other, smell, see and feel the world as I do. I would be taking the safety, security and luck of my life for granted by not focusing on the beauty of striding in the moment. The minor discomfort only exists if I perceive and focus on it. I’m running because I can.

The final 10-12km is different. The pain becomes loud and rude. More powerful motivation is needed. I project the people I’ve met who communicate in different ways and their stories, my brother’s story, and all the emotions, frustrations, and memories associated with the misunderstandings and disconnect I’ve witnessed my brother endure. If these Canadians who speak with AAC and my brother can be so resilient, strong, and triumphant; so can I. This is a numbing reminder to my perception that my discomfort is temporary and escapable. I’m running to show my commitment. I’m running to create awareness. My knee doesn’t want to lift. I’m running because I can. My calves are seizing. I’m running because this is the least I can do. I’m running to inspire. Why am I doing this? Can’t I stop? I’m running because I can do something simple that makes a difference. My stomach is going to let loose. I’m running because I love someone. I’m running because I want everyone to know how to include people of all abilities.

Cya

What possessed me to run in a French Maid costume? I would say it comes down to having a powerful motivator in my life (my brother) and a few really good friends with a sense of humour. If I’m going to run for 42km, I’m going to do it for a cause. I better kill two birds with one stone; otherwise, it just wouldn’t seem worth it. Running is a mental battle. It’s easier to run 42km through woods distracted by scenery and the challenge of rocks and roots than it is to stay concentrated and calm kilometres after kilometre on pavement running next to the same people. Wearing a costume helps with that mental battle. People start laughing and cheering. 42km becomes less lonely.

I ran the race in 3 hours, 22 minutes, 30 seconds. I had a bizarre day before the race. My eating was not on schedule, and I didn’t eat my dinner until after 10pm on Saturday night—although I had been carb grazing all day. Shortly after eating, I went to bed. Needless to say, I didn’t digest my meal as I should have. I woke up at 4:30am on Sunday to eat a good breakfast, digest it properly, and have ample unstressed time to change into my French Maid costume. Around the 23km mark, there was no bargaining with my stomach. Sweaty, and in full race gear, I abandoned the sub-3hr pack I was running with and dashed into a Tim Horton’s. I ran through the restaurant, efficiently found the washroom. A couple minutes later I ran back through the restaurant again, back onto the race course, and tried to find my rhythm again with a different pack of runners. Those employees and customers in that Tim Horton’s saw a sight they probably won’t forget for a long time.

How do you work up to running a marathon and prepare for it?

It’s getting late and that’s a whole other blog post. If people are interested, I’ll write a post on preparation.

I’ve saved the most important for last! The clear cut reason I ran a marathon in costume was to create awareness for the different ways people communicate. If you haven’t already, please read and share the following excerpt from my last blog post:

“

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.

“

A marathon is unbearable if it’s lonely. So is life. We all run our own races, but we all need some help and companionship to get to the finish line.

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:

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/

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

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

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

Day 75 – Grand Falls-Windsor to Terra Nova National Park, NL – 175km

Last night, the local campgrounds were all full from the summer tourist traffic. We ended up in the free Walmart RV Park. It’s quite funny. Here you have a large empty Walmart parking lot. There’s ample space to park so that you are secluded from any other vehicle and you don’t have to contend with customer traffic. Despite this, all the other RV drivers choose to park their vehicles side by side, a couple metres apart, literally creating an RV park in a Walmart parking lot. We didn’t join the cramped crowd. We parked in a more secluded area of the lot.

Anyhow, in the morning I lugged my bike stand out from our RV’s storage compartment. I put my bike in the stand and tilted it upside down. A rush of water came out from all the bearings, creating a big wet spot on the dry ground. I probably shed a couple pounds from the bike right there. I started working away at fixing up my bike, in the Walmart parking lot a bit before 9am. Customers were staring at me as they drove by. I’m sure it’s a strange sight to see someone fixing a bike in a department store parking lot. I definitely wasn’t fixing my bike in my natural shop habitat.

The weather was fantastic today. Perhaps Mother Nature felt guilty about yesterday. The sun was shining, and the wind was in my favour for 60% of the day. I need all the help I can get to assist me through these last couple days. My mindset earlier in the trip was about pacing, calmness, and enjoying seeing Canada slowly. That was my coping mechanism. Without that way of thinking, I wouldn’t have made it as far as I have. Now, my mindset is about survival and making time.

I got a really bad rash from my ride yesterday. A combination of constant wetness, sand and dirt from the road, and the rubbing from my pedal strokes led to breaking skin on both sides of my inner thighs. I also aggravated some older riding sores on my butt. I lathered my sores/rashes in calendula, then taped them with kinisio tape, and then slabbed on a thick layer of Vaseline. That helped a bit, but not enough. I don’t know what I would’ve done if it was raining again today. Thankfully the good weather made it possible for me to make it to where I did.

Here are some things I’ve noticed in Newfoundland.

One: there are a ton of brand new Chevrolet Impalas and Dodge Caravans, often sparkling clean. They dominate the road. Actually local pick-up trucks dominate the road. After the pick-ups, these sparkling clean rental vehicles are the most common on Trans Canada Newfoundland pavement. That probably gives you a bit of perspective on the scale of Newfoundland’s summer tourism.

Two: Every 200km or so, there’s a “Watch for moose” sign that is covered in ‘Navy’ stickers. I find it a little odd. Did someone on a road trip across Newfoundland make it their goal to put stickers on moose warning signs every couple hours?

Three: Newfoundland has to be the ATV capital of Canada. There are log bridges everywhere across the Trans Canada’s ditches from the shoulder into the forest. I question whether some of these bridges could hold my weight. Some of these bridges are built with care, precision and pride. One bridge over a ditch which led to an overgrown seemingly unused trail was built using brand new 4×4’s. That’s a lot of money spent to get over a ditch.

Four: Newfoundland RV drivers like to park close to each other in Walmart parking lots. I haven’t seen anything like this in any of the Walmart parking lots we’ve parked at in other parts of the country.

Five: In other provinces I have to dodge car debris and sometimes glass on the road’s shoulder. In Newfoundland, I have to swerve around moose pooh. Not kidding.

Six: I think people had fun naming places in this province: Dildo, Come by Chance, Random Place, Jumper’s Brook, Heart’s Desire, Old Pelican, South Dildo…weird, but entertaining.

Most of today wasn’t spectacular scenery like the western part of the province. It was much flatter, and there were lots of rocks and  trees. Near the end of today, when I entered Terra Nova National Park, the rugged hills emerged again, and so did glimpses of the ocean.

I’ve planned out my distances so that each day I’ll have to pedal a slightly shorter distance. Yesterday was 185km, today 175km, tomorrow 140km, and at last, on Wednesday, I should only have to pedal 120km.

It doesn’t seem real that I am so close to the end. On one hand, I’m excited and proud. On the other hand, I feel like there’s so much more that needs to be done to improve the lives of Canadians who communicate with AAC and all Canadians who are differently abled. I have a towering mental to-do list that gives me ambition, yet can also be a burden. There have been many profound moments, many people have learned from this campaign, and there have been many fantastic events thanks to many fantastic people. Kilometres for  Communication has been a catalyst for a lot. Despite these positives, I am hesitant to call what we’ve done a complete success. There’s so much that needs to be done. We’ve given it our all, but that never seems to feel satisfactory when we hear stories first hand of systemic discrimination, segregation, and other barriers that need not exist. We’ve been giving it our all, but it always seems like we could be doing more.

This trip may be over in 2 days, but this journey towards accessibility, inclusion, equality, empowered voices will continue.

-Skye

August 1/11

Day 69 – Ferry to Newfoundland

As my mom says, rest days on this trip are a bit of a misnomer. They truly are catch-up on blogs and email days. That’s what I did yesterday. Today, I didn’t have to bike; I didn’t have to write. I didn’t have any events. This was the first true rest day of the trip. Last night, as I went to bed, I realized this. It was wonderful feeling my adrenalin subside.

We packed up our campsite and were at the ferry terminal a little after noon. The ship was scheduled to set sail at 3pm, and we were supposed to be registered and on standby to board by 1pm. We didn’t board the ship until quarter after 3, and the ship didn’t set sail until a half-hour later. The lateness didn’t matter to me, because whether I was snoozing in a reclining seat on the ship, or snoozing in our RV, I was snoozing, and that’s what I wanted to do today.

I did wake up for the ship’s safety and feature video—how to get to the lifeboats, how to put on the lifejackets, and all that. I’m totally comfortable with being in the air. Speed doesn’t scare me at all. Water has always churned my sense of comfort. I do take the Atlantic Ocean seriously. I watched the instructional video.

The safety video transitioned into a “check out how cool our boat is” video. There was all that stuff about the restaurant, reclining seat features, kids’ play area, the TVs. I was secretly laughing at the teen zone part of the video. There was a clip of an elevator door opening. Out walked a skater-style dressed teen. He scanned the room, flicked his long hair to the side, smiled, and looked somewhat in awe. A bunch of other teens were sitting around in this area listening to their headphones, and reading magazines.

I decided to forego checking in at the teen zone.

It amazes me how about 10 tractor trailers, 15-20 RVs, and a countless number of cars can fit on this boat. What amazes me more is that it floats. The boat itself is steel, and filled with hundreds of thousands of pounds of things that would plummet into the depths of any water. Really it’s amazing how far our race has come. Dump 500 steel beams into the ocean: they make a huge splash and sink. Now, take that same amount of steel and put it together in a different form; in the form of a boat: not only does it float; it holds hundreds of thousands of pounds and floats. How you get a colossal hunk of metal to move at 30km/hr across choppy water, and then navigate through a narrow rocky channel to dock is a whole other matter.

The boat that amazes me

Humanity has these complex triumphs of engineering, almost always as a result of a collaboration of ideas facilitated by communication. I think that it’s safe to say that there’s an inspiration behind every invention. Perhaps a floating log inspired someone to make one of the first boats. Perhaps a monkey sucking ants out of a hole using a rolled up leaf inspired the human use of the straw. We now pump billions of gallons of oil out of the earth with ‘straws’. The typewriter wasn’t originally intended for commercial use or business. A man invented it to help his deaf friend communicate more efficiently.

Open mindedness. Some of the best inventions were disbelieved, thought to be impossible, stupid, a waste of time. What would a world without airplanes be like? When our environments disable people, when our schools segregate, our policies act as barriers, and narrow-mindedness is the foundation of many attitudes, the sphere in which we all live is hindered from expanding.

-Skye

July 26/11

Day 67 – Linwood to North Sydney, NS – 152km

Something happens when a goal is in sight. The weather
doesn’t seem as relevant. Rain will dry. Winds; I don’t have to let them slow
me down. Time seems to pass by. Hills aren’t feared or resented. They are
merely another thing between where I am and where I want to be.

I pedaled on the narrow bumpy Highway 4 towards the Canso
Causeway—the entrance to Cape Breton. It was cloudy. I would enter a patch of
rain, get wet. Then it would clear up. The wind would dry me. When I wanted to
dry my gloves, I would take them off and strap the Velcro around my handlebar.
Hanging from the handlebar, they would dangle in the wind and dry quickly. The
wind was coming from the North, meaning that I had either a headwind or
crosswind depending on which way the road curved.

I knew Cape Breton was a special place from my first
glimpse of it. I came over a hill, and in the fog, I saw the behemoth mass of
rock and trees rise out of the sea. Big freight boats waited patiently near the
cliffs of Cape Breton. There are a number of mines on these shores. These large
boats wait nearby to take the mined rock to faraway places.

At the campground we stayed at last night, we met 2
cyclists travelling from St. John’s, Newfoundland to Halifax where they
live—Ron and Joe. Joe recommended a route for me to take. I was originally
going to take the Trans Canada (Highway 105) all the way to North Sydney. Joe
and Ron had taken Highway 223 which they recommended that I take. The only
tricky part is finding which side roads to take in order to get to 223. I took
Exit 4 off of 105, and then took a left onto Portage Road, which goes over to
223. It was actually quite simple.

Jen Kang from the L’Arche community near Whycocomagh,
Nova Scotia, had contacted us several months ago after her coworker, David,
spotted an article about Kilometres for Communication in the Toronto Star. We
had planned to meet several days ago, but our correspondence was loose.

Just by chance, I told Gail that I wanted to meet her
about 60-70km down the road (I leap-frog with the support vehicle).
Sixty-and-a-bit kilometres down the road was just off of exit 4 on the route
that Joe and Ron had recommended that I take. Gail pulled over in a closed gift
shop’s gravel parking lot. Serendipity: it just so happened that the gift shop
was part of the Whycocomagh L’Arche community!

I took an hour break from cycling and walked around the
L’Arche community. I met several people who live in the community. I met a
fellow named Trevor who was extremely interested in shoes. He was curious about
my bike shoes. He wanted to know if I had flip flops and a pair of rubber rain
boots. I wonder if Trevor has ever been to the Bata Shoe Museum in Toronto. All
of us had a quick talk, but they were busy preparing for a birthday party later
in the day, and I had to get back on the road.

Not long after I got back on the road the clouds cleared.
Highway 223 was quite hilly, but it was beautiful. It followed the shores of
Bras d’Or Lake. Steep wooded hills fell into the deep blue of the lake. Along
some parts of the road, there were some extensive properties with impressive
lawns. As I passed these properties, I was pondering the amount of time that
someone spends cutting these lawns. I think some people’s pride grows
vicariously through their lawns. The ride was quite scenic and the time was
flying by. There are so many people who I wish could have seen the sights that
I saw today. Halifax was a special place, but it didn’t feel like a milestone
to me. I was expecting to feel a huge relief and sense of accomplishment when I
arrived in Halifax, but I didn’t; only mildly. Last night, 10km south of Cape
Breton, I knew that the ferry terminal at North Sydney was my goal; the place
where I would’ve cycled the mainland of Canada, the place where I would have
finished cycling my ninth of ten provinces. As I cycled today, I felt a strong drive
the whole day. I usually only get this drive for the final 20km of a day, when
I know I’m close.

I eventually arrived at North Sydney. A massive ferry sat
in the harbour. I had made it. I suddenly felt really tired. I knew that if I
had to cycle tomorrow, and the day after that, I wouldn’t feel as tired as I
did. However, I arrived a day ahead of schedule, our ferry to Newfoundland is
booked for the 26^th, so I have two days before I have to pedal. My
body sunk into a relieved tiredness. I know that the adrenaline will kick in no
matter what the weather is the moment I set foot—set tire—in the final
province.

-Skye

Day 66 – Truro to Linwood, NS – 161km

I woke up early to get on the road at a good time, but
there was some really thick fog, so I ended up waiting around until it cleared.
I pedaled on Highway 4, the old Trans Canada, for about 60km. It was hilly and
twisty. I was enjoying the scenery and making decent time. I was thinking: perhaps I can get to my destination early
and catch up on blogs.

I met up with the support vehicle about 70km into the
day, near New Glasgow, NS. Here, we called all the campgrounds in the
Antigonish area. It was a Saturday, and they all seemed to be booked. We found
a campground on the ocean, about 40km further along my route that had an
available spot. I agreed to pedal the additional distance in order to have a
nice place to camp. We had spent the night before in a little gravel lot in
between a road and a gravel multi-use trail.

I ended up pedaling the final 100km of the day on the
Trans Canada. It varied between wide paved shoulder, narrow paved shoulder, and
almost no paved shoulder. The highway was not a freeway for the stretch I was
cycling it. At one point there was a hill ahead. It looked like there was no
shoulder on my side. It’s one thing to have no shoulder going downhill, or on
flat ground with a tailwind. Cars take a while to catch up on an object going
40km/hr. Going uphill without a shoulder; that can be dangerous. There was a
wide paved shoulder on the other side. I crossed the highway and pedaled
against the traffic on the opposite shoulder. It felt strange, but I kept
telling myself that I was safer.

Twice on this portion of the Trans Canada, I saw cars that
had sped by me pulled over by police a kilometre or two later. I felt some
satisfaction as I cycled by them. There were lots of cops out on this stretch
of highway.

When we arrived at the campground, two other cyclists
coming from the opposite direction were just arriving. Ron and Joe were cycling
from St. John’s, Newfoundland, to Halifax, where they lived. They had actually
cycled across Canada last year. They too weren’t so lucky and had headwinds in
the prairies on their trip. I was glad to meet them—they recommended a great
route for my day tomorrow, which they had travelled today. When I was planning
my route over two years ago, I had considered taking the route they recommended
(Highway 223), however I wasn’t sure how to get to Highway 223. I didn’t want
to take a ferry, and I didn’t know if the side roads linking the Trans Canada
to 223 were paved or gravel. As well, my paper map, Google Maps, and Blackberry
Maps didn’t agree with each other. They all gave different road names and
showed different side roads in that area. It was good to have that all sorted
out and confirmed. Ron’s and Joe’s route also shed about 15-20km off my initial
Trans Canada all-the-way route. Thanks fellas!

Tomorrow I’m hoping to make it to North Sydney, the end
of my mainland cycle, weather providing. That’s another thing I’ve learned:
weather forecasts often don’t mean anything in certain parts of the Maritimes. In
some places they don’t have a clue what the weather will be like in an hour. Anyway,
I’m hoping I’ll reach my milestone tomorrow. My goal is in sight. As long as
the weather isn’t atrocious, I’ll have the motivation to get myself there.

-Skye

Day 65 – Halifax, NS – Rest/Event Day

I woke up and got myself ready. Each time I’ve spoken to
media on this trip, I’ve been suited up in my bike gear, sweaty, and perhaps
unshaven. Today was going to be a little different. I felt I needed to look the
part for Breakfast Television on CTV. I spent a half hour grooming—shaving,
manicure, hair, all that nonsense.

Laurie drove
my mom and I down to the CTV studio where we met Paul Doucet from the Speech
and Hearing Association of Nova Scotia. Paul had arranged the BTV interview for
us. We entered through the back door. It felt strange walking through the dimly
lit studio full of cameras and screens. Eventually, my mom and I moved from the
waiting area to our seats in the Breakfast Television Area, where we met our
host, Heidi Petracek. We chatted for a minute without the camera rolling; then
we watched the weather forecast finish up and waited for our cue. The interview
went quickly—it was about 5 minutes. I think it went well, but I’m not sure
because I never saw a recording of the show. Usually I don’t get to see the
media we’ve gotten because we move on to the next place.

CTV had asked me if I brought my bike. I hadn’t. I
probably could’ve shown up in my full bike gear with my Norco cross bike.

After the interview, my mom and I walked most of the way back
to Laurie’s and Dorothy’s house when
we heard a honk, and Laurie was there to pick us up. Back at their house I had
some cereal, toast, and fruit for breakfast. I was feeling full. Dorothy and Laurie’s
grandchildren, Jason and Joshua, were there that morning. Dorothy had made them
their favourite breakfast—pancakes with blueberry sauce. Jason and Josh decided
to save me a pancake. I was heading out the door to leave for our Halifax event,
feeling full, so I accepted their offering, but left it for later.

We arrived at the Maritime Museum of the Atlantic just
before 11:30am. We walked around to the boardwalk at the back of the building,
next to the water. This was the lovely location of our event. There was lots of
tourist traffic. There were benches and some large boats were docked nearby,
adding to the charm of the harbour. The Speech and Hearing Association of Nova
Scotia (SHANS) was hosting this event. One of the main organizers of the event,
Renena Joy, was away on her family vacation, so I never got to meet her and say
my ‘thank you’ in person. Thank you Renena!
And thank you to the committee
of volunteers who made this event happen.

Strawberry Shortcake!

Members of SHANS were serving strawberry shortcake with
the donations going towards Kilometres for Communication. The event committee
had managed to get a large quantity of fresh strawberries donated by two
farmers. They had also managed to get Sobey’s to donate a gift card to buy the
shortcake and whipping cream. There were examples of AAC symbol boards for
people to use to order their strawberry shortcake. Some people who stopped by  were curious about our cause, and asked
questions; others didn’t, they just wanted their strawberry shortcake. Next to
the strawberry shortcake table, my mom and I sold Kilometres for Communication
T-shirts and talked to people about our cause.

Mark Cameron and Brian Baker

Well-respected local musicians,
Mark Cameron and Brian Baker were strumming and singing. The kids loved it.
Some came and sat right in front of the musicians. One 5-year-old, Everett, who
speaks with a communication device and gets around with a walker which
surrounds him and has 2 large wheels, was dancing all over the boardwalk.

Everett talking with his mom using his communication device

Everett introducing himself to me

There
was a third table with a display on Kilometres for Communication and AAC. At
this table there were some more examples of AAC for people to try out.

The "try a form of AAC" table

To everyone who made the event possible, to everyone who
came out, thank you! I met several people with whom we had been in touch
online, but had not met. Partway through the event, Gail and I spoke about
Kilometres for Communication and why it needed to happen. A lot of our crowd
was tourist pedestrian through-traffic. People had stopped to get food or
listen to some good music. Then we began to talk, and if they were intrigued,
they hung around, listening curiously.

Just as we were finishing off the event, Global News
arrived. Nicole, the reporter, interviewed myself, Penny Kitchen, and Sarah, a speech
language pathologist experienced in AAC. I was excited. Normally the news
coverage is quite quick and to the point. Nicole, the reporter, got about 30
minutes of footage. Yes, tons will be cut out, but this footage was promising.
Often it’s tough to educate people through media because we only have 1 minute.
That’s just enough time to explain What,
How, and a brief Why. Penny used her eyes to spell in this interview. A microphone caught
the voice of her attendant, Tiffany, saying the letters, and the camera was
focused on Penny’s eyes as she indicated what letter she needed to spell her
thoughts. (I explained how Penny communicates in yesterday’s blog)

After the event, Penny took my mom and I for a walking
tour of downtown Halifax. Tiffany and I took turns pushing Penny up the steep
hill from the harbour towards the Halifax Citadel National Historic Site. Penny
would indicate with her head and eyes which way she wanted to take us each time
we came to an intersection. After walking through the Halifax Citadel National
Historic Site, Penny took us down a road where the sidewalk zigzagged around
bar patios, often becoming a boardwalk on the road. Then we walked through the
Public Gardens and eventually into the Camp Hill Cemetery. Earlier in the day, I
had gone by the Alexander Keith’s Brewery. I’ll return for a brewery tour on
another trip. We strolled through the cemetery. Penny and Tiffany pointed out
an impressive grave monument—the gravestone of Alexander Keith. There were two
rows of Keith’s beer caps sitting on an edge of the grave marker. Another gravestone
had the name of a man and both his wives on the same stone.

Keith's Gravestone

The tour ended at Penny’s home. She and her sister,
Patricia, had a decent sized house renovated into two separate units. Penny’s
unit has two stories, an elevator, and a bathroom with a hoist track from her
bedroom. It was a nice set-up. Penny has her own living space, and she can live
independently, yet she isn’t far from her sister if any emergency were to
arise. Sometime in the next decade, Kerr (my brother) and I will have to figure
out a free-feeling living situation (for my brother). I find it interesting to
see the solutions that various families have come up with to avoid the
institutional option.

Penny, her parents (Dorothy and Laurie, Patricia (Penny’s
sister), Tiffany and Jessica (Penny’s attendants), my mom, and I sat in Penny’s
living room talking over tea, water and cake. Eventually, after a tough goodbye
we left Penny’s house, and drove back to Dorothy and Laurie’s home for supper before leaving Halifax.
I had my pancake with blueberry sauce from earlier as a pre-dinner snack. It
was delicious—thank you Josh and Jason. We had the TV on Global for the 6 o’clock
news. We watched the entire news. There was nothing from earlier. We were disappointed.

My mom and I got ready to drive back to Truro. I would
leave from Truro to cycle up to Cape Breton the next day. Just as we were about
to leave, my mom received an email. The news story was going to air, just not
tonight. This was great news, but once again, we wouldn’t get to see the piece.

Halifax was a wonderful city. I definitely want to return
to experience some of the city’s culture. Penny, it was a delight to finally meet
you. Your tour was a memorable part of my trip that won’t be forgotten. Dorothy
and Laurie, your hospitality and generosity won’t be forgotten either. Most of
all, I want to thank you for sharing your experiences—I learned a lot. The
stories and perspectives you shared were profound, enlightening, frustrating, funny
and sad.

On to the last leg of the trip!

-Skye