Al is definitely a minimalist when it comes to assistive technology. Although he manages a hotel and a bar, he finds he needs very little besides his wheelchair and the hand controls he uses for driving. In the 27 years since his injury, Al has come to prefer to “not be so dependent on an assistive aid that maybe you don’t really need.” And he feels that his injury was not so “severe.” He had to wear a back brace for a couple of years “to heal and heal well,” but he has sensation now, “pretty much” to his knees. As a result, Al finds that he simply doesn’t need a lot of equipment to lead the kind of active life he wants to lead.
A do-it-yourself kind of guy, Al has always maintained his own chairs and does much of the maintenance work in his five-storey hotel. He also works on cars in his spare time, “everything from rebuilding the motors to putting the final coat of paint on them.” Currently, he is working on a three-wheel Harley Davidson motorcycle. Wheels, in general, are very important to Al. Not only was driving important in getting his independence back, but his skill with fixing cars is one of the many talents he has to barter with friends who help him with his assistive technology and his hotel business.
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At first, Al thought he would be able to walk again. He remembers, “I just figured I’d get through this. I always thought I’d be able to walk again. You know, I kept that drive in my mind and soul just to keep fighting and fighting and fighting….” So during his lengthy stay in the rehab hospital, he tried to return to walking by using parallel bars. He remembers, “I could walk down the parallel bars by just brute strength and gumption…. I’d lock my knees and walk like that. Lock knee and walk, lock knee and walk. It wasn’t practical, but it was healthy to at least get up and try.”
Al feels that he went through a “negative” period after he left the hospital. Then he bought a car. The car was a “big factor” in gaining back his independence and self-esteem. He says, “I think you need your wheels…. The automobile was probably very important, because it gave you back your independence, and to a certain point you weren’t depending on anyone else, like to, well, I want to go and get some groceries or I want to go for a ride…. I want to go look at that thing….”
When Al got his car, he looked into options for walking again. He was fitted with full-leg braces and he remembers he could “get around real good with those,” and a pair of crutches. But in the end, they just weren’t practical. Al explains that when you walk with braces and crutches, “That’s all you can do. You can’t, you know, go carry a cup of coffee across the room, because you’re walking.” He also found it difficult to manage stairs with the leg braces. When Al’s injury and improvement stabilized after a year or so, he decided it was time to “move on.” He told himself to “deal with the chair and get your act together.”
Al has a long history with chairs. He found his first chair was too “big and bulky,” so he eventually traded it in for something more “sporty.” He recognizes that his active lifestyle is hard on chairs. “I break chairs all the time. This thing I’ve welded I don’t know how many times…. I wheelie downstairs and you know, just banging around and whatever, but I mean, they break.” Knowing this, when he saw a chair he liked that had a lifetime warranty on the frame, he thought, “I’m going to be around for a while, … so I bought the one with the lifetime warranty.” That way the manufacturer had to replace the frame when it broke, which they did a couple of times. When the manufacturer stopped making that particular chair, they didn’t want to replace his anymore. But Al insisted that he had a lifetime warranty and the manufacturer eventually agreed to replace the chair—one last time and with no warranty.
That was ten years ago and he is still using the same chair, although he has to do some welding on it from time to time to keep it working. Al doesn’t feel the need to make major changes because what he has does the job for him. It has a low back that allows him to stretch back and dress himself. He has no camber on the wheels because he wants to keep the chair as narrow as possible so that he can get into tight places. For a cushion he uses “just a regular goofy foam cushion. I go to an upholstery shop here in town and they make them up for like thirty bucks or whatever, so they wear out after a while.” He has never had a pressure sore. He realizes that this kind of cushion wouldn’t work for everyone, but it’s fine for him because he has enough mobility and sensation. He attributes his good skin to “moving around lots and showering every day, no matter what. I can feel my butt so I can, you know, when you’re hurting or whatever. Whereas if you have no feeling, well then it’s an issue for sure.” Al brings a toolkit with a pump and tire patches for his chair when he travels. “If you get a flat or something, at least you can pop it off and change it, in your hotel room or the side of the road if you have to.” He also keeps a compressor in the garage for filling the tires.
Al is considering getting a new chair, but he wants something similar to what he has now. He just hasn’t seen anything new that would offer him a clear benefit over his existing chair. “Like, I’ll go in and look around and go, ‘Oh well, you know, it doesn’t really turn my crank,’ not ‘Oh, look at that…’ Nothing really jumps out and bites you.” Besides, he says, “I’ve got another couple of these chairs too that they gave me and I picked up and scrounged. So actually I’ve got enough parts to build another one, so I might just do that and then have a spare.” He recalls one instance when he salvaged a chair from the garbage of a local medical charity.
Al doesn’t feel the need to upgrade his equipment. When asked if he would like to use a standing chair, especially considering all the maintenance work he does in his hotel, he said that he finds them too heavy and cumbersome. He would also have to pay for it himself. “If they were free, well maybe, but I don’t feel like spending ten or fifteen thousand dollars on something that I don’t really need.” He doesn’t see himself in a power chair either. At least he hopes he won’t need one, “because I don’t see it being practical for myself. I’d just get fat and lazy. I can wheel it, so I wheel.”
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See Al transfer himself and his wheelchair into and out of his car. Choose a format: |
Al needs only hand controls to make a car accessible. Because he fixes cars, he has quite a few cars around, each with its own set of hand controls. He has tried just about every kind of hand control over the years. He even has a set that he takes travelling with him. He explains that they “fit in a suitcase so, you know, that gives you more independence when you’re on a trip or something. You fly somewhere; well I’m renting a car. You know, I’m gone.”
Al chose a car over a van because he finds, “The car is a little more practical for me. It’s more comfortable and then [with the van] you’ve got to use the van lift all the time, or it’s kind of a high jump to jump in and haul your chair in through the door without a lift.” He can transfer into the car and pull his chair over his lap and into the back seat, which is why he has a folding chair. His current car is a station wagon so he has some advantages of a larger vehicle, such as a van or truck, without the transfer difficulties. This is a big advantage, given the work he does. He says, “If you’ve got to go get a sheet of plywood or 2X4’s or whatever, you know, you can throw them in the back of the wagon and away you go. It’s like having a half-ton [truck], but [it’s] a car.”
With the insurance settlement from his accident, Al was able to put down a payment on a hotel. Running a hotel is a challenge for anyone. He remembers, “I bought this building in ’79, then running around, I had to do tons of work—and just do it—because you had to do it and carry on with life.” The tons of work he did included everything from tending the bar to fixing the plumbing. “I was doing a lot of the maintenance, like plumbing, servicing taps or your toilet’s not working, or I’d be caulking the bathtubs or putting in a new bathroom floor or repairing ceramic tile or you know, just general maintenance…. You do whatever you have to do, because it’s your business.”
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See Al manage the ledge as he enters his front door. Choose a format: |
The only real obstacle for Al is the five flights of stairs in his hotel. He has been known to “bum” up and down them to get where he needs to go. He describes his system: “Usually, if I’m by myself, what I’ll do is I’ll get all my tools together, get everything I need, put them in a box or whatever and bum down the stairs. Well, actually if I’m going down, I’ll take a rope and lower the chair down the stairs, and then I’ll bum down the stairs and take the stuff with me and hop in the chair, and go do whatever I’ve got to do. Or vice versa. Crawl up the stairs and pull the chair up the stairs on the rope. And hop in and go do your thing.” Fortunately, Al doesn’t have to do this too often. He finds he can barter with friends to help him out by fixing their cars or buying the beer. And he has recently hired a maintenance worker. In fact, Al’s business has grown to include three partners and “twenty-some staff.”
Al also removes snow in the winter and mows the lawn in the summer—all from his chair. He has the driveway ploughed, but he pushes the snow off the steps with a scraper. For mowing the lawn, he says he has developed a system: “Push her, wheel, push, wheel, push, wheel. You get pretty handy with it. It’s not bad, it takes a while.”
Al’s philosophy about assistive technology is simple: “Do it yourself instead of getting something to do it for you.” However, there is a place for assistive technology in his philosophy. He recalls, “It took awhile for me to get motivated up to a certain level where I was happy. And those assistive devices helped, you know, to get me there, and then realize that I didn’t need them, or I’m going to need them or what have you.” Al views assistive devices as stepping stones. He feels that doing without assistive technology as much as possible helps prevent people from “labelling” him and keeps him strong.
There’s very little that Al can’t do. Or as he puts it, “I do my best to do whatever I want to do. What are you doing? Whatever I want.” However, stairs sometimes pose a barrier. He describes his disappointment when he couldn’t get into the local high school to see his niece in a play. “That was kind of a, you know, kind of a letdown in a sense you know, that I wouldn’t mind, wouldn’t mind going to see the play.” His friends have hauled him up and down the stairs of his hotel a “gazillion times,” but he says, “I don’t like being hauled up and down stairs.” It takes away from his dignity and independence, and besides it can be dangerous. “I’ve ended up on my head a couple of times.”
Al admits that his minimalist, “whatever-I-want-to-do” philosophy may have a price. He finds that he has constant pain in his hands now, which he attributes to overuse. “Twenty-six years of wheeling and working and … banging them … all of that stuff and twisting wrenches and you know, the whole deal, eh?” And he recognizes that, “I’m sure it’s tough to know what an individual would want because, you know, everybody’s different. And even if they have the same injury, they could still be very different.” In light of the uniqueness of each spinal cord injury, Al suggests an approach that makes lots of technology available, but warns people to be ready to “take it all back” as they find what they need and what they can do without. The most important thing is to “just do as much as you can and just keep going and give her gas. There’s a lot of reality there to eat up.”
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