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/

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Day 77 – Chapel Arm to Cape Spear, NL – 114km

I didn’t bother to set a wake up alarm on my phone for this morning. Adrenaline and excitement is better than any annoying chime. I was up at 6:30am—Newfoundland time. I put my headphones on and listened to my pump-up playlist as I cooked breakfast. Breakfast was  8 eggs and some fruit. I was on the road a little after 8am.

I decided that I didn’t want to meet with the support vehicle. I just wanted to get to the finish—no stopping to refill water bottles or any of that. I filled up four water bottles of water and put 3 energy bars in my jacket’s pouches to get me through the 110-115km ride.

There was a fine mist. At the top of the hills this turned into a drizzle. It was chilly. The wind was against me. It wasn’t a pleasant day for cycling. Strangely, I wouldn’t have had it any other way. It seems proper that a trip of this magnitude, with the bad weather I’ve had, should have one final challenge to overcome on the last ride. The weather wasn’t wretched as it was a couple days ago between Deer Lake and Grand Falls-Windsor (I had constant heavy rain that day). It was manageable, but unpleasant enough to make the final haul epic, and the fog added a scenic eerie touch.

The lingering mist at Cape Spear

With only 30km to go, just as I was entering the St. John’s area, I got a flat tire. I felt a heat of frustration at first. Then I laughed. I would get a flat tire in the final stretch. It was written. I set myself a challenge three years ago, and I was going to get it; every last morsel of it.

There’s a 12km stretch of road out to Cape Spear from the St. John’s suburb of Mount Pearl. This is Highway 11. Leaving Mount Pearl, Highway 11/Black Head Road has hairpin switchbacks up a steep hill. I was still thinking what goes up, must come down. Start at sea level, finish at sea level. I kept going up and down these really long steep hills. At one point, I looked at my odometer, and figured that I must be on the last hill before the finish. I wasn’t. On this last 12km stretch, I was pushing myself like I haven’t pushed myself before on this trip. I didn’t have to worry about being stiff or sore the next day. I didn’t have to worry about making it through the next 100km. This was it. I felt my heart hammering and my legs burning like never before on this journey. I was earning every kilometre of that last 12km stretch. When I came near, I could hear a foghorn every couple minutes. As I pedaled fiercely in anguish, the finish glaring in my mind, although not yet visible in the fog (and there were some hills in between), I had a smile that wouldn’t leave my face and tears escaping to drip down my cheeks.  Cape Spear, the most easterly point of North America, is actually about 50m above sea level. My mom, Linda, Martin, and Robert were parked in a parking lot near the sea about a half kilometre before Cape Spear. I pulled in, said a tired, distracted ‘hi’, and told them I wanted to go all the way. I pedaled up the final hill to Cape Spear.

Arriving!

Crashing on the grass, overwhelmed. About to call my bro and dad

I dismounted from my creaking bike on a patch of moss and grass next to the parking lot. I lay my bike down. It deserved a rest after two and a half months of strain. I collapsed next to it. I was overwhelmed. I felt confused as to what I should be doing first. My mom, Linda, Martin, and Robert pulled into the Cape Spear parking lot, got out, and we had a proper greeting and celebration. My mom came and sat on the grass beside me. We had a long hug. We both cried and laughed.

The sign says it

It was quite magical. Where I had stopped, there was a fog that limited visibility to about a half kilometre. Waves crashed ominously against the rugged rocks below us. The water looked cold and fierce. I wouldn’t be surprised if these waters had a fierce undertow. Whales were emerging from the water. Occasionally they would flip their tails elegantly out of the water. I’ll never forget that moment.

The furthest east point of North America

I remember my fear back in May, driving out west, seeing the poor roads without shoulders in Northern Ontario. I remember stopping at a picnic area in Saskatchewan off the Trans Canada. I stepped outside the vehicle and felt a fierce wind from the east. I was rattled. I hadn’t thought too much about getting headwinds in the prairies; not until that moment. I was scared of being clipped by a trailer. I was scared of not making my distances in the prairies, and getting so far behind that I would have to hop in the support vehicle to make events; and not truly cycling across the country. But we humans are adaptable creatures. When you’re feeling safe in a car, and you feel the wind from trucks whizzing by you in the opposite direction on the two lane highway, it’s easy to think: “a cyclist would be doomed on this road”. Once I was cycling on these roads, I realized that the shoulders were wider than they looked from driving, the truck drivers were usually quite considerate, and when they did pass close the gust could be harnessed to help me accelerate.

Kilometres for Communication is about promoting values of accessibility and inclusion. It’s about advocating for new policies that don’t act as barriers to people who are differently abled. It’s about hearing and sharing stories to create change. It’s about increasing services, supports and technology to help people communicate. It’s about making sure that everyone is heard. It’s about teaching people so that all of this can happen.

As I mentioned in yesterday’s blog, this journey is not over. I may be on the eastern coast of Newfoundland, but the journey towards empowering the voices of Canadians who have little or no speech is still back in the Prairies fighting headwinds. We want to expand our network further and create an inter-provincial coalition to advocate with strength. We want to develop our website further and keep it as a resource of stories and educational info on AAC. We want to continue teaching people.

We’ve received tremendous support on this trip. Some of what was behind those tears to the finish was the generosity and devotion that many have shown us. Everyone who arranged events, offered us your hospitality, shared your stories, taught myself and many others, wrote us comments of encouragement, donated, cycled, fundraised, sported a Km4C shirt, and contributed to this campaign in your own unique way, you all have touched me. Generosity, creativity, courage and charisma exist in all of you. If such a large number of people, across such a large country, can possess these traits, I have faith that the quality of life for Canadians who are differently abled will improve.

We brought the banner from the Cool Communicators at Camp Winfield (near Kelowna, BC). Each hand print on the banner has the child or youth's name written inside it and the communication device they use

I want to say a special thanks to Cyclepath in Toronto, our first official sponsor. I’ve worked there for several years and consider them my second family. Without hesitation, the Wilsons and the rest of the crew at the bike shop were behind me.

A huge thanks to Norco Performance Bikes. That bike persevered through so much abuse. Norco helped to ease the financial strain on our family by covering spare parts, the spare bike, and auction items and goodies for events.

ISAAC Canada has been a terrific partner. The support and networking that our partner has offered us is remarkable. We look forward to continuing on the road towards our mutual goals.

I won’t be blogging daily anymore, however I will continue to blog. There are lots of photos and video that will be posted when we have arrived back home and have access to high speed internet.

I have learned so much from this trip and I hope many have learned from what I’ve shared. This experience was profound, has changed my life, cannot be done justice by any sentence, and will likely remain the most memorable 77 days of my life. This was the toughest challenge I’ve ever had.

-Skye

August 3/11

P.S. If anyone has questions which I have not addressed, please ask them by commenting, and I’ll be happy to reply or address them in a future post!

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