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

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Day 50 – Ottawa, ON to Oka, PQ – 180km

My day began at 2am. I woke up with a sore throat. If you
want the details, I’ll tell you. If you don’t, you’re welcome to skip ahead to
the next paragraph. My throat was foaming with mucus and I could hardly
breathe. I was unzipping my tent every 2 minutes to spit. After getting fed-up
with that, I left the tent, and went into the RV to get some honey lemon tea.
That helped a bit, but I never really got back to sleep after that. I half
slept from 3 to 6am. We had to wake up a little after 6am anyways for an event
in Ottawa at the Ottawa Children’s Treatment Centre which began at 8:30am. We
had to pack up and beat the morning rush hour into the city so everyone was
waking up as I was still struggling to get some sleep. I got up, deciding that
I would try to tough the day out.

After doing a few laps around the side streets and
parking lots of the Ottawa Hospital General Campus, we parked. At this moment,
my mind was turning off, I could hardly speak, and I decided that I couldn’t
rationally walk into that building and engage myself in conversation for the
next hour or 2. I slept in the RV, while the rest of the Kilometres crew went
inside. I heard a little bit about the event—it sounded great—but it’s just not
the same not being present. My apologies Ottawa, I really wanted to attend, and
I tried, but my body wouldn’t let me.

The good folks in Ottawa at the fundraising breakfast who I never got to meet

 

Friends of ours who drove from Toronto to Ottawa for the fundraising breakfast

 

The 2 hours of sleep in the hospital parking lot was my
saviour. When the crew returned from the event, they had a platter of fruit,
croissants, and waffles. The good people inside who I never had the pleasure of
meeting were sweet enough to send the sick stranger sleeping in their parking
lot a bundle of tastiness.

After making a quick meal of the platter, I dressed up
and got on my bike. I took a bike trail from the centre which is a bit outside
of the downtown area, down to the river front a bit east of Rideau Hall, on the
Rockcliffe Parkway. The sun was shining, the trail was great, but I just didn’t
feel like biking today. We were going to meet Will and his brother Zachary, and
their mother, Genia, at a scenic pullover just off the Parkway, near the Ottawa
River. As I was cruising through Ottawa, keeping an eye on time so as not to be
late, yet trying to pace myself to not wear my body out, my bike started making
a noise (the most common line that bike mechanics hear). About a minute later,
the noise escalated to a loud clinking, “something is broken, stop now!” noise.
So I did. The bolts for my smallest chain ring in the front had all come out. I
had a chain ring bouncing around against the frame of my bike, trapped by the
outer chain rings which were still bolted into place. Of the 5 bolts holding
that piece of metal in place, only 1 need not be cranked down, and the rest of
the bolts can loosen off over time. I suppose that after several hundred
kilometres since Toronto, that’s exactly what happened. I was in no mood for
this. Luckily I only had a couple kilometres to go. I made quite the racket and
other cyclists looked at me in horror, disgust, and confusion as I went by them
clinking and clanking. Ottawa is a fine, royal place of smooth bike paths,
peacefulness, serious cyclists, and properly tuned bikes to whiz next to the
manicured lawns and watered flower beds. I didn’t fit the scene.

My day would get better. I met Will and his brother
Zachary. Their mother, Genia contacted us because she was frustrated with lack
of service and support that she could get for her young son, Will, who doesn’t
have speech due to a disability. Our family can relate to that feeling of
helplessness—especially Kerr and my mom. Many families don’t necessarily have

an issue obtaining the actual technology, they need the expertise and experience
of someone who can assess, recommend, and foster progression of their family
member’s communication. There are many things that we find change from region
to region as we travel across the country. One thing that doesn’t seem to
change is that there’s a lack of accessible professionals to help parents such
as Genia move to the next step. Every parent wants their child to reach their
full potential, but there’s a sense of helplessness when time passes and day
after day, week after week, month after month, the same question persists—what’s
the next step? What’s the next step? What can my child do that we’re not
enabling him/her to do? What is his or her potential? Zach, Will’s brother (who
I think is 10? Correct me if I’m wrong), raised a considerable amount for
Kilometres for Communication. After meeting Zach, I’m not surprised. He’s has a
warm charismatic character, and he’s full of energy and friendliness. Gail,
Genia, Zach, Will, Kerr, and I went for a bike ride near the Ottawa River. The
path we wanted to follow disappeared and we ended up cycling though the Ottawa
neighbourhood which is home to many of the ambassadors from other countries.
There were lots of flags, extensive properties, striking architecture, and
life-saving valued cars. We cycled 10km, but the real purpose of the ride was
to talk and for our families to meet.

Myself, as a brother of someone who lives with complex
challenges (Kerr is cortically visually impaired, has absent seizures, and has cerebral
palsy which prevents him from voluntarily controlling most of the muscles in
his body), I find it comforting to meet others siblings who are in a similar
situation. It’s the comfort in knowing that they know too, what the struggles
are. Genia and Will, I know that you will reach the next step—whether you
receive the support that you’ve been searching for, or if you stumble across it
yourselves. Zach, in the last couple years I’ve realized that Kerr’s been the
most influential teacher in my life. I hope that learning the world next to
Will gives you a profound and sensitive perspective that most people won’t ever
get to experience. I’m glad I met your family, stay in touch.

Will, Zach, Skye, Kerr--Brothers in arms

After saying good bye, I cycled out of Ottawa on bike
paths, along the old Highway 17, which was quite busy and bumpy, and then on
country roads. The country roads were smooth and beautiful, but they added some
distance—especially the construction detour. The sun was shining, the wind was
a light cross wind, and it was a perfect day to cycle. Nonetheless, I didn’t
feel like cycling at all. But I suppose I’m lucky the weather was what it was
because I would have probably called it a day before my final destination if it
rained or gusted wind against me on my couple hours of sleep day.

At Hawkesbury, I left Ontario, crossing the Ottawa River
on a bridge, entering Quebec. For 60km, I followed a beautiful road with a
paved shoulder that followed the shores of the river. Just a little north of
Montreal, near a town called Oka (there a stand-off here many years ago that
made national and international news), there was a 15km strip where every 2nd
or 3rd property was a cigarette stand. These stands had flashing
lights, signs that were almost on the road, huge banners, and sculptures of
cigarettes. It was quite sad to see that the culture and economy of an area was
so heavily centered on something that’s bad for our health. What amazed me was
that all these places co-existed, and by the looks of it, seem to be turning a
profit in order to afford cigarette sculptures and elaborate flashing lights. This
would indicate that despite the 100 shacks in the 15km stretch, the market wasn’t
saturated. That’s a lot of people taking a lot for granted.

At the end of this long day, I arrived in Oka National
Park where we had reserved a spot to camp. We found out that dogs weren’t
allowed in the park. This messed up all of our arrangements. My dad had to
sleep outside the park in the nearby town of Oka with the dog, in the van. Oh
my! What a day.

-Skye

Day 35 – Cavers to Hemlo, Ontario – 157km

Over a month ago, as we were driving out west, I was feeling quite scared seeing the roads that I’ve been on today and yesterday. I saw the speeds that the trucks were driving, narrow shoulders, and countless steep climbs and descents. I had some long distances planned—I really wondered if my itinerary was realistic. As we drove into Thunder Bay, a lane was blocked on one of the arterials. A dog had been hit by a car. A line of cars had stopped behind the car that had hit it; there was a crowd of people around this poor creature struggling for its life. There was a noticeable pool of blood around the dog people were trying to wrap in blankets. It was quite a disturbing scene. We drove by, but didn’t stop.

Shortly after, we stopped for the night in a Walmart parking lot. I couldn’t sleep. The image of that dog, the blood on the road, and the unexpectedness of the situation for whomever was involved—they triggered something in me. There was a bit of homesickness. I wanted to see my dog and my loved ones. However, there was another fear. After driving over 800km on roads that scared me, seeing all the truck traffic, and seeing how impatient and fast the truckers were—I felt terrified that I would be riding this stretch a month later.

Well here I am. The roads aren’t as bad as I feared. My distances were long, but despite wind and rain, I’m actually 30km ahead of schedule. I should be a full day ahead of schedule by the end of tomorrow. The shoulders are great at times, but quite narrow for the most part. Usually the trucks and RVs will go into the other lane to pass me. I do have to be hyper-alert, but I wouldn’t call it nerve-racking.

Anyways, I probably shouldn’t even bother writing about the weather, because it seems to have been the same for the last number of weeks: headwinds, cloudy, and patches of rain. The scenery has been spectacular (I did get the helmet camera out for the first time today since the Rockies). Small mountains of Canadian Shield line Lake Superior, and the highway goes down to the shoreline, in-land into river valleys, and up several hundred metres to the top of these mini-mountains for stunning views. The road goes up 200 to 300 metres, then it goes down. Up, then down, up…then down. Today was mostly slow on the climbs, fast descents to compensate, and fairly slow on the flats with the fierce wind. The wind was a little ridiculous at times today. I climbed to the top of a mountain, and was met by a fierce gust at the top. Ok, I’ll be going downhill soon enough, not a problem. Nope. The road did go down. There was actually a long descent with about a 3-4% grade, but the wind was blowing fiercely against me. I descended this mountain in my lowest gear. I was going only slightly faster downhill than it took me to climb. I kept checking to see if I had a flat tire. Nope. I felt like a piece of paper. I needed more weight behind me. Gravity wasn’t a strong force compared to the wind.

I’m leaving the coast of Superior for the next day as I travel to Wawa. Today I passed through Schreiber, Terrace Bay, and Marathon. Hopefully I’ll be in Sault Ste. Marie a day early for a rest day! I’ve been making good tracks in Ontario; 860km in 5 days of cycling.

In my mind, challenges have 2 characteristics. One: they are daunting. Two: they can be overcome. Two years ago, at the beginning of my year off between high school and university, I knew what I wanted to see out of Kilometres, but had no idea how to go about it. Bit by bit, things came together. I was lost at times, excited, and sometimes had no clue. Bit by bit, I’m cycling the roads I feared, and exceeding the distances that I thought were ambitious. Many people were telling me before the ride had started that my distances were too long.

So, we’re faced with this challenge: in Canada, waiting lists for communication devices and services are long (lengths vary from region to region). Every day, there are adults in Canada who get talked to like kids, because people don’t understand that “speech disability” is not a synonym for “slow, immature, or stupid”—there are many other common attitudes and assumptions that need to be extinct. Policies aren’t what they should be in many places, AAC isn’t a high priority in most governments (but what is one of the most important things in life…communication?). There are people out there who can communicate, but don’t have a way to because they don’t have the access, or there isn’t the recognition in their community. All of this is a challenge. Bit by bit, it can be overcome. Is there a clear linear path? No. We don’t really know where the road will wind, how many hills and valleys it will climb, or what the weather will be like. We do know where the road ends. We keep going until we get there. We don’t know how long it will take, but we do what we can, and one day we’ll get there.

-Skye

Day 26 – Elkhorn to Portage la Prairie, Manitoba – 222km

I woke up to the sound of rain pouring on the metal roof of our camper. I sighed, got myself out of bed, ate, and geared up for the rain. The first hour of cycling wasn’t pleasant in the rain, but I was travelling along quite efficiently compared to all the other days in the Prairies when I’ve been fighting headwinds. I was rolling along at 25-28km/hr and I felt like I was flying. It was pouring rain, but I had all my waterproof gear and rain goggles, and I didn’t have the wind in my face. Things were good.

Sometime after the first hour of cycling the winds changed from southerly to westerly. The day cleared up. I found myself maintaining between 35 to 45km/hr. I maintained that for the rest of the ride. At one point, my bike was playing basketball with a rock. It flew up, hit the metal down-tube of my frame, then ricocheted off the metal, hit my tire, and then hit the metal again, and continued this process for about 5 or 6 seconds. I’ve never had anything like that happen before.

There was a 10km stretch of loose gravel shoulder just before a town called Sidney. I was cycling on the highway, checking over my shoulder frequently and listening for traffic. Luckily the road wasn’t busy, I was going half the speed of traffic instead of a fifth the speed (so it was taking awhile for the cars to catch up), and most cars were changing lanes a long time before they caught up with me. Nonetheless, I hate those situations. Later on, just before Portage, my paved shoulder vanished again. This time, the shoulder was hard-packed dirt. This wasn’t too bad for speed. There was a constant line of trucks on the highway. There also had been a downpour which I had missed a little earlier. The shoulder was a mess, but at least it was safe and possible to ride. I finished in Portage la Prairie, covered in mud, looking like I had just finished a mountain bike race.

I stopped in Portage around 5:30pm. I could have easily harnessed the wind for another couple hours and made it to Winnipeg, but there was something more important to be done; to meet  Shelley and Ron Stewart, a couple who live in Portage la Prairie, Manitoba.   They just celebrated their thirteenth wedding anniversary. After a newspaper article about Kilometres for Communication made it into the Winnipeg Sun, Shelley and Ron began to email us. Since Shelley was a child, she had been using forms of AAC–a letter board of some sort with a head pointer or eye gazing to spell out what she wanted to say. When Shelley recently got her first speech generating device, she told her husband, Ron, that she loved him. Shelley had told Ron that she loved him before, but Ron always had to read the letters that spelled what Shelley wanted to say. It was profound for Ron to hear Shelley independently say that she loved him with her new voice for the first time. Gail and I read this story in the first email they sent us. We wanted to meet them.

Our timed pose; the one that worked. Myself, Ron, Shelley, Gail

…And meet Ron and Shelley we did! It turns out that Shelley doesn’t let her cerebral palsy hold her back from too much. I learned that Shelley and I are both adrenaline junkies. Shelley loves to ride motorcycles and snowmobiles, and she goes on the amusement park rides that make Ron sick. When I told her about the adapted bikes that people ride at Whistler over jumps and flying-down drops, her eyes got this spark. If anyone ever invents a bicycle trailer with suspension that’s reliable enough, can be manoeuvred in the air, and is safe, Shelley and I are going downhill biking. Maybe my brother Kerr would be interested in this too…. It may not sound realistic to invent such a thing, but hey, we’ve invented wilder things. You never know. As Shelley says, narrow-mindedness is a disability.

I have a lot of respect for Shelley and Ron. They’ve had to advocate for so much. In advocating for themselves, they’ve improved the lives of others along the way. We all deserve freedom and independence. We all need safety. Many people who are differently abled require assistants—whether that’s to assist with eating, help with house chores, assist with communication, to arrange transportation, or to do a bit of everything. Often policies don’t allow you to independently hire your own assistants. How would you feel if your assistant came, did their work, and left, without saying a single sentence to you? What would you do if your assistant was abusive? How frustrated would you be if you didn’t have complete control over who helped you? Often, even if you can select your own staff, the funding isn’t enough to finance the hours of assistance that you need.

Ron and Shelley were a delight to meet—warm, open, and real. Between coasting on the tailwinds, and meeting my two new friends, June the 13th, 2011, was a great day; a day that will be difficult to replicate.

Sometime in the near future, we’re hoping to have Shelley’s and Ron’s stories in the
story section of our website.

-Skye

Day 20 – Kindersley to Rosetown, SK – 84km

I woke up, ate some granola, and checked the winds in the
forecast while I waited for the two reporters to come. I couldn’t care less
whether it rained or not. Please wind, just one day in the Prairies, give me a
tail wind. No dice; it’s been easterlies so far, and the forecast had the wind
coming from the NE, SE, E every day of the week in every town I searched along
route. There’s this big lazy low pressure system that doesn’t want to move.
Unfortunately it’s in my way. But I’m a determined fellow.

Around 10am, Elise from the local Kindersley newspaper
came and interviewed myself and Gail. It was a good interview. Unfortunately,
the Kindersley newspaper is one of the few papers in Canada which doesn’t have
an online publication so I don’t have a link to the article. We’re learning
that there are some simple, old-fashioned aspects of Saskatchewan culture that
people are hesitant to change. After Elise left, Matt from a local radio
station arrived. He had some good questions prepared as well. I never did get
to hear the radio show; I was on the road pedaling. Elise wrote quite a good
article in light-speed to meet her deadline. In no more than an hour’s time
after she had driven off, Gail had received an emailed copy of the article she
wrote.

We also learned that morning that Saskatchewan doesn’t do
daylight savings. Half of the year, they’re on Central Time, the other half
(now), they’re on Mountain Time. Apparently, when everyone converted to
daylight-savings a half-century ago, the people of Saskatchewan decided it
would be too complicated.

I started pedaling around noon. I only had to go over a
little over 80km. This was supposed to be a partial rest day placed in between
a bunch of heavy days. The sun was shining, but the wind was blowing in my
face. I tucked as much as I could, until I was forced to change to a different
position because I got stiff. There was a constant 25-30km/hr headwind. Often
there were stronger gusts. Similar to many days before, I was appreciating it
when trucks travelling in the same direction roared by me so I could ride their
drafts. I loathed getting passed by oncoming traffic.

The highlight of my ride was when I came to a
construction site. The woman controlling the traffic through the stretch of
one-lane traffic on gravel asked me if I wanted to follow the pilot vehicle. It
seemed to be moving slowly. I said “yes”. It started at 20km/hr. I tucked in
right behind it, two feet off its bumper, coasting on the draft. I suppose the
driver took this as a sign of aggression or desire to go faster, instead of a
cyclist sheltering himself from the gusts. He sped up to 25km/hr, which was
fine. Then he went to 30km/hr, which was perfect, but about the limit of my
capability on gravel. I was still right on his bumper. He sped up, the wind hit
me, and I had to drop off to the side and let the whole line of traffic dust
me. I was only a couple hundred metres from where the construction ended when I
got ditched, but I had an efficient draft session for a couple kilometres which
saved me some energy and time. I struggled to keep my average speed above
20km/hr. On such a day, if you’re willing to compromise with the wind and lower
your cadence or shift to a lower gear without raising your cadence, your speed
will slowly dwindle as you cycle on. The wind will blow you down to whatever
speed you start getting stubborn at.

Just before I hit the construction, I passed a fellow
cyclist taking a break at the side of the road. He was playing a ukulele and
seemed in great spirits for someone with full gear travelling against such a
spiteful wind. His name was Nathaniel. He was travelling from Victoria to
Saskatoon, and eventually out to Halifax. He wasn’t sticking to a strict
itinerary, and the wind was fierce, so he was unsure if he was going to make it
to Rosetown that night. He had seen Kilometres for Communication support RV
with goofy pictures pass by. I told him to come and knock if he did manage to
make it to Rosetown.

You can tell that we travel in different ways. Nathaniel and I at the campground in Rosetown, Saskatchewan

I made it to Rosetown in the early evening. The wind
hadn’t settled at all by then. We camped in quite an interesting campground.
The Rosetown campground is a municipal campground which has all the revenues go
towards people with disabilities. Just as we were finishing up our chicken
stir-fry dinner with a spinach salad (and lots of extra brown rice for me) and
it was getting dark, Nathaniel pedaled into the campground. We invited him in
for a meal. Gail, Nathaniel and I chatted until midnight. It’s such an
experience meeting people on this trip. Everyone I’ve met is interesting. Nathaniel is
a chef, doesn’t camp with a tent, but has instead mastered setting up a
tarpaulin, cycles with a ranch hat, and has plenty of stories to go with his
seasoned traveller’s aura. If you ever go on a long cycling, running, hiking,
paddling, rail road bumming trip (!), or any trip that sets you in new
environments day after day and takes you out of your comfort zone, you will
have stories to tell.

We walk by so many people every single day, not knowing a
thing about them. Odds are, we’ve walked by some pretty accomplished
people—maybe even famous people—geniuses, sports stars, people who have
overcome tremendous suffering, people who have saved lives, and maybe even a
murderer. We don’t know. We just walked by. We’ve probably walked by a city of
people, not knowing a thing about that city of people. Here’s the thing, each
of those people has people who know who they are, what their stories are, what
they’ve accomplished, what they’ve overcome, what experiences they’ve had that
influence the way they act.

There are an estimated 375,000 Canadians without speech.
That’s about the population of Kingston, Ontario or many suburban regions. Many
of these people have a way to communicate through using alternative methods.
These people who have a way to communicate fit in with the crowd that I
described in the paragraph above. They have stories, and people who know the
stories. However, there are many people of that 375,000 who don’t have a way to
communicate because they haven’t been enabled. Who they are, what they can
accomplish, their potential is unknown. Often services are unavailable to young
children and toddlers when they are in their key stage for learning language.
They are locked in. Imagine if services such as speech language pathologists,
funding for devices and communication assistants weren’t available. Imagine if
all the stories, talent, and brilliance of a city the size of Kingston,
Kelowna, or Moncton was undiscovered. There would be a colossal cultural loss.
So, what’s my point? In many places services aren’t available, period. Across
Canada, there is no province which doesn’t have huge waiting lists for funding
of supports and services which enable communication. There are people out there
whose brilliance is undiscovered. Our attitude should be to assume ability
instead of inability when we walk past these cities of people throughout our
lives, because we will meet many of the people we walk by, and by assuming
ability, you may meet someone who profoundly influences you, or perhaps you’ll
be the influence.

-Skye

Catching up in Hope, B.C.

May 23, 2011
It is hard to believe that it is only 17 days since we left Toronto, and 14 days since we began our drive across the country for Kilometres for Communication.  Having come down with a wicked cold which quickly turned to bronchitis, I’ve had to conserve my energy as much as possible, while at the same time driving about 700 kilometres a day on the journey out west, learning how to drive and operate a recreational vehicle (hmmm-black water, gray water, fresh water, propane—and how wide is that one-lane bridge, will my mirrors be clipping those pedestrians, and where can I park this monster?), dealing with the vagaries of unpredictable cell phone reception and internet, while taking care of many other daily tasks, all with my energy on low volume.

It has been wonderful, exhausting and exhilarating.  I feel honoured to be Skye’s and Kerr’s mother, and grateful and in awe of the generosity of the many people who have already made Kilometres for Communication a moving and successful campaign.  While this is a public education and fundraising campaign, it is also a campaign about human connection, synergy, and inspiration. There are people all over Canada putting their hearts into awareness, education and fundraising events.

We are also hearing from many families who have been inspired by Kilometres for Communication. It can get very lonely, not just for the individual who speaks in different ways, but it can also be isolating and painful for families who experience their family members being misunderstood, segregated and excluded in so many ways and in so many circumstances. There have been many times when we’ve spent an evening with friends, and I feel sad because in the hurry and flurry of socializing and entertaining, we haven’t been able to ensure Kerr’s full inclusion and participation if he’s without a communication assistant.  Conversation is moving rapidly, and Kerr gets left out if there are more than a few other people involved and we are the only ones paying attention to what Kerr thinks, feels and wants to say. It’s wonderful when everyone makes Kerr’s participation important. All of us slow down, and there’s a different feeling to the whole experience. So I imagine families are inspired by Kilometres for Communication because it brings hope—for more understanding, for more possibility for communication, for more inclusion, and for networking among “Cool Communicators”  (I think this is a wonderful way to describe people who communicate in different ways) and among families.

Before we left Toronto, Barbara Collier of Augmentative Communication Community Partnerships Canada (ACCPC), asked me to spread the word about their “Proposed Communication Bill of Rights for People who have Speech and/or Language Disabilities” (http://www.accpc.ca/BillofRights.htm).  Please take a look, and tell ACCPC what you think about it before July 8, 2011.

I’m not sure I’ll ever catch up with all there is to do, but as I am writing this, I am sitting in our rented RV, surrounded by snow-covered mountains, glad to be on this journey.

Gail