The Kilometres Story

A little over a year ago, I dipped my bike into the Pacific before embarking on a cross country journey to meet Canadians who speak in different ways due to disability, hear their stories, and share them. On May 19th (the 1 year anniversary), I posted this video on the Kilometres for Communication Facebook page.

I was in a rush that day, and didn’t get around to posting it on the blog. Alas, I’ve gotten around to posting the link on the blog.

This is the same video we presented at the Breaking the ICE Conference at the Holland Bloorview Kids Rehabilitation Hospital on April 29, 2012.

The narration of the video is composed of blog excerpts during our journey. Enjoy 🙂

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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

Kilometres Fall Update

I know. It’s been too long since I last posted a blog. I even had several failed attempts logging into my WordPress account because I couldn’t remember my password. I assure you, I haven’t been living a couch-potato lifestyle. It’s actually been quite the contrary. Despite the blank blog, there’s been interesting stuff going on for Kilometres for Communication this fall.

In September, I got this nagging idea that wouldn’t leave my head. It was the same type of idea that wouldn’t leave my head three years ago when I decided to cycle across Canada for AAC. What was this idea? Some of you may have seen pictures of me dressed up in a pink tutu, pink women’s shirt, bunny years, and a wand in hand. A couple of you even saw me running down Queen Street in Toronto dressed in this magnificent, flamboyant costume. For those of you who have no idea what I’m talking about, this appears quite obscure. You may think that I have changed. I promise you that I have not.

So why the bunny costume? It’s all in the name of fundraising.

Thanks to Jeff Cheah for the marathon photos.

My idea was to run my first marathon in support of Kilometres for Communication. Two close friends, Jason LaPorta and Harrison Willis, joined me as well. We registered for the race a mere three weeks before the date of the race. This was quite last minute to decide to start training for a 42.2km race. Nonetheless, we trained together and set up a donation page for our run. In a little over a week, we raised over a $1000. Thank you to everyone who supported the cause and helped to empower Canadians who communicate in alternative ways.

Still loving life after 30km. Trust me, a lot more tired than I look.

A week ago Saturday Kerr and I participated in Rick Hansen’s 25^th Anniversary Man in Motion Relay when it came through Toronto. It’s quite phenomenal how well Rick’s campaign has managed the logistics of coordinating a medal bearer every 250m. Kerr and I each wore the medal for a stretch along Eglinton Avenue as the relay travelled through Leaside, making its way towards downtown.

Kerr's turn to bear the medal

Me passing the medal onto James, a war veteran

Kerr and I gave our relay co-ordinator, Kyle, a heart-attack scare. We nearly missed our spot in the relay. I literally had to sprint down an Eglinton sidewalk with Kerr holding tight in his Wike jogging trailer, just to get to our medal exchange spot on time. It truly was a unique experience. There was a traffic jam on Eglinton. As Kerr and I ran in front of a police cruiser, we passed traffic in the left lane to top-40 pop songs played from the campaign RV in front of us. It was a surreal experience having hundreds of drivers–many stuck and perhaps frustrated–staring at us as we jogged past.

And the relay goes on. Kerr and I just after we finished our portion

On the 25^th of November, we’ll be presenting our journey across Canada to the Mabin School in Toronto. We’ll be sharing stories that we heard from Canadians who speak in alternative ways, and we’ll be facilitating interactive activities which will allow the students to enhance their understanding of the barriers people who are differently abled face. There are also tentative plans to present to students at a high school near Barrie, Ontario.

During my bike trip, I always tried to incorporate a discussion about AAC,  equality, human rights, or inclusion into the events that occurred on a particular day; often using the challenges of the journey as metaphors. For me, one of the primary purposes of this blog is to create understanding. So here’s one thing that’s been going through my mind—actually covered in one of my courses. It was really just a side note in one of my psychology lectures, but it stood out to me.

When asked to fill out a self-esteem scale and a scale of happiness, people who have quadriplegia reported the same levels of positive self-esteem characteristics and happiness as anyone else (same idea as people who win the lottery are only happier than the average population for the first 3 weeks after the win). I think many people assume that people faced with physical challenges live a lower quality of life (which is often incorrect). Pity is not the right attitude. Empathy and open-mindedness to opportunity is. It is precisely this attitude which enables people to feel positive about their lives. I do wonder whether people who are capable of more than they’re given opportunities for, would express lower values on such scales. An example would be someone who has the intellectual ability and the physical control to spell sentences with their eyes, but has not been given the support or means to do so. How do you find these people whose potential has not been discovered? How would you define them to give the survey validity? If you could find them, their hidden potential would no longer be hidden. It’s relatively easy to survey people who have quadriplegia compared to surveying such an undefined group. Hypothetically, even if there were a way to find these people, test them, and then conclude that ‘people whose potential is not fostered due to an unrealized need for AAC, are more likely to report lower levels of happiness and self-esteem’, what needs to be done is enable, not pity. Apologies, that last sentence was a mouthful. Still with me?

I hope the marathon pictures have amused some of you. I’m glad to have finally posted a blog for the first time in months. There will be more to come from Kilometres for Communication in the near future. I already have another nagging idea.

-Skye

When I stand back and look

I stood in the chilly remnants of waves at 6am on May 19, at Port Renfrew. I filled my glass jar with water—water that may have flowed thousands of kilometres, water that may have been churned from the deepest depths of ocean, water that may have sunk the Titanic in a different ocean, water that may have flowed into the ocean washing away the blood of a fallen soldier or a victim of genocide, water that has given life to creatures and been recycled back into the ocean, water that carved out the mountains and valleys I have to bike through. 8382 kilometres later, I’m looking out from Cape Spear, Newfoundland, into the thick fog hiding the ocean and wondering what the water’s story is.

It’s been a little over a week since I finished pedaling. The whole ride home, I felt like an impatient seven-year-old watching the clock, waiting for the recess bell. I just wanted to get home. I was counting the kilometres. Now I am home. The RV has been cleaned out and returned to the rental company. I’ve slept well. I’m slowly catching up on everything. I’ve been slowly putting pieces of this blog together from the road and the last 2 days at home.

The day after I finished cycling in Cape Spear, my dad sent me an email with some links. I’ve been tuned out of the news world for the most part on this trip. The only news I heard was what the locals were talking about, wherever I was. A shocking incident happened on August 1, 2011 on a Toronto sidewalk. The incident involved the police accidentally killing a man during the struggle of an arrest. The man killed had challenges due to a brain injury suffered as a child. A lot of you reading have probably already heard lots about this.

Here’s one of the more recent articles on the incident. There are lots of articles. Most of them don’t answer any of the questions I have. This one goes into a little bit more detail, although there are still so many questions that aren’t answered.

http://www.thestar.com/news/crime/article/1036477–hundreds-gather-to-remember-charlie

Clear as a sky scraper in the prairies on a sunny day, the police involved had no understanding of disability. The man who was killed wasn’t able to hear. If he walked through a crime scene the police were investigating, and they shouted to him, he wouldn’t have had a clue. Charles McGillivary, the man killed, had very little speech. If the police asked him a question, he couldn’t have answered properly. He also had an intellectual disability as a result of his brain injury. He wouldn’t think in the same way that the typical person does. Sometimes, people with disabilities appear to have erratic behaviour. People with spastic quadriplegia can randomly fling their limbs out and hit someone. They can’t help it. Someone who has a severe form of autism may not talk to anyone in a busy room. It may seem scary and overwhelming. They tune it out.

One question that hasn’t been answered is: why did the police need to talk to Charles in the first place? What exactly happened that escalated to the police tackling him? No matter what Charles did that alarmed the police, there was no consideration of the possibility that Charles may not be harmful, but rather have a disability.

Part of what is terrifying about this is that the people who are supposed to protect our loved ones—no matter what their race, sex, ability, age—cannot be trusted. If the police force doesn’t educate their officers about disability, incidents like this can happen again. It wasn’t long ago (2007) that a Polish immigrant with mental challenges, Robert Dziekański, was killed by RCMP Tasers.

All emergency response workers should be educated. Paramedics and firefighters need to know how to best work with the challenges a person with a disability may have in an emergency. An example: if a paramedic doesn’t understand how someone who speaks with AAC communicates, how can they find out if that person has any severe allergies to the painkiller the paramedic is about to administer? Furthermore, what if a paramedic doesn’t bother to ask a person without speech anything because they assume they have a severe intellectual disability based on their physical state? Police need to be trained, and emergency preparedness for people with disabilities needs to be considered important by all emergency task forces.

When I hear stories about incidents like this, I’m reminded how small I am; how small we all are. What’s amazing is that we are miniscule, yet the effect we have on the others around us can be as harmless as a fluffy cloud passing through the sky or as devastating as a colossal earthquake.

Here’s a little montage I’ve put together of footage from our 77-day journey—the West Coast of Vancouver Island to the eastern-most tip of North America. 77 days, 12 hours of footage, crammed into 9 minutes. It hardly does justice, and I’m not the best filmmaker, but I try. Check it out if you have the time.

-Skye

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