Mobilize March -- Travel Blog

Day 33 — Oh right, the sun!

Reluctantly, we left Brighton this morning after a wonderful stay in this small water-front community. After grabbing one last amazing breakfast at the Cafe, we set out for Belleville around noon. The sun was shining brightly and the humidex was already climbing–it was going to be a hot one! I came prepared for the warm weather today though…sort of…I started off right away with my t-shirt and put on my thinnest black pants. Of course, I quickly learned this was a horrible decision, but because I hate how shorts feel, I didn’t have anything lighter to change into. Oh well, it just meant Pete and Sam would have to deal with a very sweaty Jeff by the end of the run. Despite slapping on a bunch of sun tan lotion, I still managed to burn a little today…ugh…I’m going to be soooooo tanned when this is all said and done! Oh well, the burn doesn’t hurt too bad, hopefully it doesn’t get all peely and gross by the end of the trip!

Today was also the first day of an ongoing study into how to reduce the strain on my shoulder for longer drives. We recently made an executive decision and decided to cut Gananoque off our itinerary and will be driving directly from Kingston to Brockville on Wednesday. I was a little worried about making back-to-back +50km drives, followed by a shorter drive right before arriving in Ottawa. So we will be arriving in Brockville a day early, spacing out the drives and reducing the strain on my shoulder. Unfortunately, this means my Wednesday drive will be over 70km, the longest drive of the trip, almost 30km more than the previous record.

This epic drive, as we have dubbed it, poses two major problems–battery endurance and physical endurance. On our last run we decided to see how far the batteries could go on a full charge before crashing. Astonishingly, we made it close to 43km before noticing a bit of a slowdown. This appears to be consistent with a previous drive where we went around 38km on one set of batteries. This means, contrary to my original estimates of a 60km range, my range is likely closer to 85km on two charged batteries. So, the battery problem is solved.

Unfortunately, this doesn’t account for the physical endurance. So far, the longest drive we’ve made was only about 50km and I was like putty afterwards and that was during a perfect drive day–no rain or outrageous heat. Ultimately, we need to find a solid way to allow me a good 8 or 9 hours of steady driving without absolutely obliterating my shoulder or draining me of so much energy that I get sick or nonfunctional. The first, and probably best, idea is to strap my shoulders down to the back of my chair, allowing me to rest back in the seat without being thrown around when hitting bumps. Now there are several ways to accomplish this goal, two of which we tested today with limited success.

The first option was to use the camel back as an improvised chest support, wrapping it behind my seat and pulling the arm straps around to the front, strapping me down to the back of the seat. While this definitely held me back, the design of the straps forced my arms out at a ridiculous angle, making me look like I’m attempting to take off with my boney little chicken arms. Aside from the obvious fashion issues, it was also really uncomfortable.

To rectify this, we decided to go smaller and tighter, turning to a bungie cord. Basically we just grabbed one of our cords, wrapped it around my chest and secured it behind the seat. This solution worked reasonably well, on the road, except that there was enough give in the system that I got really jossled around while driving on the shoulder. I would hit a bump hard enough that it would catapult me forward and then the elastic would snap me back into the seat, giving me a bit of whiplash and a bit of a headache. The other obvious issue here was the fact that it’s not really comfortable having an elastic wrapped around your chest–I know, who knew?! In the end, we had to give up on this experiment for the remainder of the ride, but we’re going to go back to the drawing board tomorrow to see if we can come up with something else that will work.

As a side note, yes I know they actually make shoulder straps for wheelchairs to hold people in, especially when driving, but we have no way of getting something like that at this point in the game and besides, what fun would it be to just buy one? It’s way more entertaining to reinvent the wheel!

So our drive today was reasonably short but surprisingly grueling. It was my first real taste of ’summer driving,’ with a beating sun and next to no wind or shade. It was only about 26 or 27 out today, but with the humidity and lack of wind it felt like a solid 30 or 32 degrees–I was sweating almost immediately…and those stupid black pants didn’t help matters! To make matters worst, Trenton had some of the worst sidewalks I’ve ever driven on so I had to exert a LOT of energy pivoting and leaning and holding myself up as I launched myself off huge curbs and rocketed up and down hills–it was like doing sidewalk moguls. As I mentioned earlier, I did get a little sun burnt, despite a LOT of suntan lotion, but I was able to keep hydrated and cool off ever now and then by tossing some water on my head and shoulders.

As usual, the honks were out in full force today, bleeping our entire way from Brighton to Belleville. I’ve been thinking a lot about horns recently (exciting, I know), specifically about how much they annoy me. When we were in Toronto people were constantly laying on their horns to admonish vehicular indiscretion and faux pas. Driving too slow? Give’um the horn! Make an illegal turn? Horn’um! Merge in front of me? Oh you better BELIEVE you’re getting horned. I find it so bizarre that we have NO problem blasting our horns at people on the road who do stupid or questionable things and yet that type of behaviour outside of a car is abhorrent. We would never yell at someone walking too slowly on the sidewalk and yet we find it perfectly acceptable to do it on the road in our car. While I won’t go into why I think this may be, I’d speculate it has something to do with the anonymity we feel inside our cars. What is more interesting, though, is how the meaning of a horn can be dramatically different without using a different type of horn. The sound we make to tell someone to get out of the way is the same sound we make to say hi to an old friend as we pass by–two very different meanings, one sound…and yet we seem to have no problem distinguishing between the meanings. I’ve always found that interesting, but this tangled web of semiotic construction gets even more interesting when put in the context of the March. The horn, often a sign of disgust or disapproval, is constantly being used as a means of supporting me as I make my way across this fine province.

Driving down the road, people quite regularly give me a little beep of their horn, often followed by a wave or thumbs up (or a fist pump…if I’m lucky) as a means of saying “Good job!” or “Keep going!” Ultimately, the horn is the motorist’s way of vocalizing their support for my cause and urging me to continue what I’m doing from the comfort of their driver seat. I find this fascinating, and dare I say poetic, when put in the context of the walk. So many Ontarians with disabilities have had their voice marginalized and minimized when asking for more access to transportation. In many cases our pleas for justice fall on uninterested or inattentive ears. To make matters worst, the insidious discrimination against the disabled population is so covert and unspoken, borderline wordless, that we are left with nothing–not even a spoken example of how we have been wronged. We are never told “No Cripples Allowed,” but rather a canned list of “politically correct” responses is rolled out, explaining it is just too expensive or that we should be a bit more patient (come on sport, what’s another 10 years?). The wording may be different but the result is the same–we are placated, left to languish in anguish, trapped alone, solitary, in a structured silencing.

To make matters worst, not everyone with a disability has the ability to speak out for a variety of different reasons, whether it be that they are nonverbal, uncommunicative or simply too shy. Others find it difficult to gather their thoughts and explain their problems in a comprehensive and concise manner, sometimes because they are simply so disgusted by how they are being treated that they cannot formulate a rational argument, other times because they simply haven’t had access to the proper education to assist them in formulating their thoughts. The disabled population is horrendously undereducated with astonishingly few people gaining post-secondary training.

By driving to Ottawa, I hoped to rectify this problem, urging those who can speak out to find their voice, to find our collective voices and rise up together and say “Enough!”, demanding fair and equal treatment. Although I love to gab, I thought perhaps this time around I would let my wheels do the talking–the rubber of my tires painting a portrait of oppression along the roads of Ontario. But something even better has begun to take form…

At the start of this trip, I decided to bring my iPod to offer some entertainment and provide a custom soundtrack for my trip, but as I’m driving along, a moving tableaux of a terrible transportation system, I am now being serenaded by a near constant choir of honking cars. These horns are growing into the true melody of the trip–the marching beat of the revolution–and by honking their horns, people are giving voice to the voiceless. For those who cannot speak for themselves, these motorist’s honks call for change, employing the horn to not just support my efforts but also to vocalize disappointment and disapprove of the deplorable treatment the disabled currently endure every day in this province. While I couldn’t stand the horns before, they have honestly become music to my ears–an audible commitment to the cause and a plea for justice across this province.

So the next time you are on the road, blast your horn for all to hear because there is no bigger indiscretion or faux pas than accessible transportation in this province.

– Jeff

By Jeffrey Preston

Born with a rare neuromuscular myopathy, Jeff has spent his life dedicated to advocating for himself and others with disabilities. With a PhD in Media Studies from Western University, Jeff's research focuses on the representation of disability in popular and digital culture. Jeff is currently an Assistant Professor of Disability Studies at King's University College @ Western University in London, ON.