Bob’s Wheelchair Blog

Wet & Wild Wheeling

In all the time I've spent in and around wheelchairs, by far the most hardcore wheelchair user I've ever come across was a teen from Alaska with a mid-level spinal cord injury suffered in a hunting accident that left him in a manual wheelchair. He lived on a reservation in a remote location that got tons of snow every year yet managed to get around, pushing himself in a manual chair with studded tires that could have been ripped off a monster truck.

Whenever it's cold or rainy and I'm debating going out or staying in, I try to remember that guy. If he can do it, so can I. With fall now in full force and winter just around the corner, bad weather is on the minds of wheelchair users across the country. Every wheelchair user who braves the elements has likely had a few of those moments where inclemental weather or one of it's byproducts has left you aksing yourself, "What am I doing out here?" I can't remember how many times I've pondered what would happen if my chair short-circuited when trying to decide whether to ford a flooded curb cut.  Somehow, the image of electricity running through my body like those cartoons where you can see the skeleton usually dissuades me from braving anything too deep. Kidding aside, dealing with rain, snow and cold temperatures is often no joke for people with disabilities.  All to often, the threat of bad weather makes it seem too difficult or dangerous for disabled people to go about their normal about-town routines and keeps them homebound.

Obviously, there is no reason for anyone to ever risk their health in dangerous weather conditions, but after 13 years living in rainy Portland, Oregon, I feel pretty confident saying that a little rain, wind and snow shouldn't be enough to keep you from getting out and living your life.  If you've ever watched a TV show or a movie or seen any pop culture depiction of Portland, you probably think of it as the closest thing to an urban rainforest in the United States.  Nearly every depiction of the city shows Portland as a perpetually gray, midsized town where the question isn't is it raining, but how hard. Having lived here for 13 years years (12 in a chair), I have to admit there is some truth to the Hollywood portrayals. It is gray here for 7-9 months out of the year and I can recall numerous stretches where the sun seemingly didn't show it's face for weeks on end. On the other hand, it doesn't rain nearly as much as people think. You probably wouldn't guess that New York and Miami are both significantly wetter than Portland but they are.

Still by virtue of having lived in a city people identify with inclemental weather, I consider myself somewhat of an expert on dealing with chairs and bad weather. In the time I've lived in Portland I've gone from being the guy who wouldn't go out if it wasn't sunny to the guy who put on three layers of pants and four shirts and sweaters just to go to a football game on a night where the temperature hovered around 28 degrees last fall (Note: After 3+ hours in sub-freezing temperatures the screen on my chair's control temporarily stopped working, instead showing an awesome pixilated landscape).

The main thing I've learned is that for the most part, wheelchairs are pretty tough. Knowing that has given me the confidence to put myself in situations I would have shied away from before. In essence, I've learned not to use the chair as an excuse. The right preparation and precautions can open up a whole world of possibilities and get you out of the house and back into the hustle and bustle. From wheelchair canopies to ponchos to homemade devices, there are a ton of easy options to stay warm and dry in your chair. I've yet to come across any ways to waterproof a chair, so it's still probably not the best idea to go sit in a downpour considering the damage the water could do, but you can minimize the potential for damage and extend your ability to be out.

Here are a few of the tips I've learned over time. Feel free to share any ideas or suggestions you have. You can comment below or reach me at .(JavaScript must be enabled to view this email address).

You won't melt in the rain. As dumb as that obvious statment sounds, accepting it was key to me getting out more. I always try not to get caught in downpours that could hurt my cushion or chair, but normal rain doesn't faze me and shouldn't faze you.

Plan your routes. There is nothing worse than making a long trip by chair in the rain only to find out your destination has no curb cuts or flooded ones. I always try to plan trips where I know I can catch buses, streetcars and trains or at least stay under awnings or in buildings to avoid getting fully soaked. Portland has great public transportation and pretty good curb cuts in most heavily trafficked areas. Because of this I know I can get around certain parts of town with ease.

Anticipate the worst. If a cold front is coming, have extra clothes that are easy to get on. If rain is looming, have an umbrella or a poncho. It's pretty simple logic but you'd be surpised by how many people ignore it and pay a high cost.

Check your chair. If you have a manual chair you don't have as much to worry about, but if you have a power chair (like I do) it's imperative you make sure your wiring is tied up nicely and that the things that should be covered are covered.

Have fun! Splashing someone by speeding through a puddle can be just as much (if not more) fun than puddle-stomping.

 

**Photo included is of Ian Ruder with four layers on top, leg warmers, knee high socks, pants and snow boots plus a blanket. Brrr!

Travel Woes and Foes

I could see the straps from my luggage digging into my attendant’s shoulder blade from my spot in our overheated rent-a-van. With my shower chair, chair charger, personal care equipment and normal luggage all weighing him down, he looked like a cross between the Hunchback of Notre Dame and Atlas – the weight of the world on his shoulders.

The Long Beach Airport didn’t have any luggage carts, much less any available parking for my side access van so we had parked on the end of an aisle, all the way at the back of the airport’s antiquated garage. We had 15 minutes to lug all of my equipment and our luggage through the parking garage, get checked in and get to our gate. Suddenly our decision to grab In-N-Out burgers at the last minute wasn’t looking too bright.

It’s a situation that anyone who travels has likely faced at some point, but one that confronts disabled travelers even more regularly. The equation is simple: the more equipment and accommodations you depend on, the more likely you are to run into problems.

From the simple lost bag, to the catastrophic totaled wheelchair, I’ve had my share of travel problems in my 12 years of traveling in my power wheelchair. Like many of you, I’ve learned to deal.

By far the most valuable thing I’ve learned is that the best source for tips, tricks and advice on how to make traveling easier is by talking with and listening to other disabled travelers.

Whether it’s traveling with a set of wrenches, making sure I have the numbers of local wheelchair repair companies or simply learning when not to back down, I’ve learned a ton from simply talking with other people with disabilities I’ve met while traveling.

If you’re not so much the social type, a quick Google search on “travel” and “disability” should provide more than enough ideas to overwhelm you for a good few days.

My hope is that over time this site/blog will become another reliable source for those kinds of tips and tricks and a place you’ll want to come to discuss things. Every month or so I’ll open up a new topic, share some of my thoughts and throw it out to you, the readers for more ideas and insight.

This month, obviously, the topic is travel and ways to make it easier. Here are a few ideas to start things off, then feel free to chime in …
1) Get the right equipment
a. There are two types of travelers as far as I’m concerned: the toothbrush and a change of shorts type and the kitchen sink people. The first group are minimalists, the type of people who can spend 6 months in Asia living out of a backpack. The second group are the people you instantly hate in the check-in line because you know that it will take an hour to check their mountain of bags. With all the extra equipment I need to travel for any period of time I recognize that I am perilously close to falling in the kitchen sink group. With that awareness I do everything I can to make sure I have the best bags and equipment to make myself as close to the toothbrush group as possible. Finding a rolling shower chair that fit into a bag the size of an oversized pizza box and a smaller chair charger lopped at least 50 pounds off my travel necessities and has made all my trips that much more pleasant.
2) Fight for your rights
a. It may not be fighting for your right to party, but fighting for your right to an accessible room may very well determine how much partying you do. When you make your reservation always speak to someone in the hotel and get their name. Get them to guarantee the accommodations you need. I’ve done this multiple times only to show up to an “accessible” room that is in no ways accessible. If they accepted your reservation they are responsible for accommodating you. More importantly, they are required to accommodate you at the price you reserved. If that means they eat it upgrading you to suite that normally goes for three times the price … so be it.
3) Know your local resources
a. Two years ago I flew to a friend’s wedding, only to arrive and find the control for my chair had been sheared off in transit and was unsalvageable. It was noon on a Saturday and the wedding was at 5 p.m., about two hours away. I called every rehab provider in the yellow pages without any luck and was resigned to flying home with my busted chair when a small series of miracles occurred that ended up finding me the exact 10-year-old piece I needed and someone to install it. Now when I travel I make sure I know someone where I‘m going who will be available in case of emergency. It never hurts to be over-prepared.

What tips and tricks have you learned? How do you make traveling easier? Let me know at .(JavaScript must be enabled to view this email address).

About me: I’m a freelance writer based in Portland, Ore. I enjoy writing about people and sports. My dream job would be to be a professional lawn mower, riding a giant tricked-out lawn mower. I’d settle for having a lawn mower built into my wheelchair.
Guest blog by Ian Ruder.

Nerves Pave the Path to Greatness

Guest blog by Ian Ruder, Consumer Advocate, Portland, OR.  CELA (Continuing Education and Legislative Advocacy Conference)

Standing in the 100-year-old marble halls of Russell Senate Office Building at 8:45 a.m. waiting for Sen. Jeff Merkley's staff to open the giant wooden doors and let me in for my first meeting of the day, I thought I had everything under control.

It was my first time lobbying on Capitol Hill as a consumer advocate and considering the majestic setting and importance of what we were doing, I was somewhat surpised I wasn't nervous. But I'd memorized all my talking points about complex rehab, I knew what the hoped for "takeaways" were and if anything went wrong, my friend, Kevin, a whip-smart rep from United Seating and Mobility, had my back. I was ready.

Minutes later, inside the office with other constituents, the senator walked in and walked over to me. My mind went blank. I'm fairly sure that in between stuttering and awkwardly pausing I said something about complex rehab, durable medical equipment and what a pleasure it was to meet him.  Honestly, I'm just glad there's no audio recording and that I look good in the photo the staff photographer took.

If you fast fowarded the tape of my day on Capitol Hill seven and half hours to our last of nine meetings with different representatives, staffers and senators you would see a different scene. No more stumbling. No more stuttering. All those talking points? Kevin and I had them down cold.

He'd talk about the need for a separate benefit then I'd tag in with details on how such a benefit resembled what had already been done with orthotics and prosthetics. He'd talk about how reimbursement cuts hurt complex rehab providers, then I'd tag in with an anecdote about the impact of reduced access.  Back and forth we went, answering questions, hitting our points, and feeding off each other like two politicians making the Sunday morning TV rounds.

Despite the hectic schedule of running back and forth across the Capitol and navigating the maze-like buildings, we were both energized. There was something about seeing the looks of emerging recognition on the faces of the people we met with that was invigorating. In many cases the staffers had admittedly no knowledge of what complex rehab was before we met with them. Mere minutes later, most were asking questions enthusiastically and many expressing a desire to follow up or learn more.

Even the most cynical of the cynics couldn't have helped but come away optimistic about the future.

It wasn't until about 5 p.m. when Kevin and I sat down on a shady bench in front of the Capitol and looked down the shimmering water along the National Mall that it struck us; we were dead tired.  We laughed, exchanged fist bumps and sat back thinking about all we had accomplished.

"So what do we do next?" I asked.

Chicago Abilities Expo

The Chicago Abilities Expo is set to kick off this upcoming weekend July 9th through the 11th at the Schaumburg Convention Center.  The event is filled with exciting new products, free workshops and fun events.   We attended the Los Angeles Abilities Expo and had a wonderful time taking in all the sites, sounds and activities of the Expo.  If you attend (admission is free) be sure to stop by and see Ms. Wheelchair America Erika Bogan.  The activites and events are many including: Assistance Dogs Demonstrations, Competitive Billiards, Table Tennis, Wheelchair Super X Fun Course, Creative Movement and Dance, Power Soccer, Quad Rugby plus so much more. 

The Abilities Expo site is at http://www.abilitiesexpo.com/chicago/index.html.   Thank you for stopping by.

Let the Games Continue!

I doubt that I will be forgetting the 2010 winter Olympics anytime soon. Not with such an epic hockey game between team Canada and the US, Apolo Ohno becoming the most decorated US winter athlete in history in winning his eighth medal, Sean White defending half pipe gold with his gravity defying Double McTwist 1260 (I had to look that up), or watching Canadian figure skater Joannie Rochette put tragedy aside and post her career best to win bronze.  However, I’m pretty excited to see what the Paralympics have in store.  Let the Games continue!
The 2010 Winter Paralympic games will be host to 1000 athletes from 40 countries on March 12th when they hit the ice and snow to compete in 5 sports; alpine and cross country skiing, ice sledge hockey, wheelchair curling, and biathlon. Here are some stories to pay attention to. Chris Daw, a Canadian veteran of the summer Paralympics, will be competing to defend gold in Wheelchair Curling after winning it all in Torino 4 years ago. He has been competing in Paralympics games for over 25 years. Colette Bourgonje of Saskatoon, Saskatchewan has competed in over 8 Paralympics Games since 1992 and she will compete in cross country skiing and trying to add to her stack of 8 medals. She has already been named to the Saskatchewan Sports Hall of Fame. Verena Bentele from Tettnang, Germany, is a biathlete competing in the visually impaired class. She is competing for her 3rd gold in as many games. She won her first gold at as a rookie in the Nagano Paralympics in 1998 at the age of 16 and her second at the Salt lake Games two days after injuring her foot and being told by her doctor she would not be able to compete. Finally, if you haven’t seen Sledge Hockey before you have to check it out.  Can Team Canada 3-pete and take the gold in Sledge and prove that when it comes to pucks and sticks Canada is simply the best? If they win, Canada will have swept the world with both the men’s and women’s hockey teams winning gold over the Americans in the Olympics just a week ago.

For this and more check out the official website of the Vancouver 2010 Paralympic Games at: http://www.vancouver2010.com/paralympic-games/

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