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

Advertisements

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