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.

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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:

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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/

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 25th 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 25th 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