Phillip is an engineering professor who recently returned to work following his spinal cord injury. In the two years since his injury, he and his wife have completed major renovations to their home and adapted the family car with hand controls. Phillip takes a pragmatic view of assistive technology, favouring simplicity wherever possible. He gathers information from many sources before making decisions, and he pays special attention to what others in wheelchairs have to say about their experiences. Phillip finds he can often get around the high cost of assistive devices by buying second-hand.
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Like most, Phillip got his first real exposure to wheelchairs during rehab. He describes trying to gather information from many different sources to make a good selection. In the rehab centre, Phillip says he “looked at every wheelchair that went by.” He was not shy about asking his peers about what worked for them and why. He said he was always in the hallways saying things like, “Oh, that looks good. Tell me about that.” He feels he was able to get a fuller picture of wheelchair vendors’ products and services by asking peers, as well as professionals, for their opinions. That’s not to say that professionals don’t give good advice, but Phillip knows that there is a professional etiquette involved in these discussions. Peers, on the other hand, will give you “the dirt” on a vendor from their point of view. “If you're talking to somebody in the hall, they can say, ‘Well, their service was horrible. They had my chair for three months,’ and so on.” At the same time, Phillip takes a common sense view of peers’ opinions. “If you talk to six people and they tell you the same story, you begin to get ideas. If five of them tell you one thing and the other person is the opposite, then you say, ‘Well he had one bad experience.’”
One important decision for Phillip was the frame type. He remembers that the therapists suggested that he get a folding frame because of his age. He evaluated both rigid frames and folding frames, and found that chairs with folding frames were more difficult for him to push. “I can’t understand why, but I felt like I was dragging a sack of potatoes in the folding chair, compared to the rigid chair.” So, he went with the rigid frame. He says that packing his chair into the trunk of his car is only slightly more difficult than it would be with a folding-frame chair. The back folds down onto the seat and the “removable casters give me another few inches so we can close the trunk lid.” Also, the rigid chairs are slightly lighter and he knew that his wife would be the one putting it in the trunk of the car.
Seating was another issue that Phillip dealt with during rehab. He found the experience in the seating clinic a little bit strange. He remembers, “The first time I was going to be fitted for a wheelchair … they stretched me out on a pad and measured me. And I thought, ‘this is quite scientific.’” But then they discovered that his buttock was lower on one side than the other and Phillip felt they wanted to build up the wrong side of the chair. “This I have never been able to understand. They were going to put more padding on the low side.” When he mentioned the incident to his physiotherapist, she said, “I think I can straighten that out" and by a little pelvic manipulation, she did. She checked over the next few days and the straightening seemed permanent. However after this first experience with a fitting, he questioned the exactness of the scientific process.
As it is, Phillip finds he sometimes gets a sore back. He has occasionally tried to address it by putting extra padding between himself and the chair at different places, but he hasn’t hit on a permanent solution so far. Phillip says the pain isn’t that bad. “The back isn’t what I’d call a serious problem. It’s only if I’ve been sitting a long time.” He finds he can deal with it when it crops up. “I can put my hand or a piece of something there and just change positions and it goes away….”
With the major decisions made, Phillip needed to settle on the chair’s details and accessories. He chose inflatable tires and casters because of rougher outdoor terrain. “I figured I would be going through parks or something, over grass, and these tires would be a little better.” Phillip is not certain that he made the right decision. “I’m not sure I was right there. It’s pretty hard to go over grass anyway,” regardless of the type of tires on the chair.
Phillip chose large casters with inflatable tires for the same reason, and he has the same doubts about his decision. He noticed that the head of his medical supply company, who uses a chair, had inflatable tires and casters, so he thought that was a pretty good recommendation. But he finds that the larger casters aren’t the best for steering because they tend to get caught on other parts of the chair when he is turning. “Sometimes they will catch a little sideways…. It’s a noticeable annoyance. You’ve got to move just a little bit to set something down and you can’t go. You need both hands on the wheels to force the chair around.”
Because of the inflatable tires, Phillip also finds that he must keep an eye out for sharp objects. He says, “I know that I’m scanning the road ahead continuously for broken glass.” He had one bad experience in a poster session at a conference. Someone had put up a poster with thumbtacks and when he was done, he put the rest of his thumbtacks in an ashtray on the floor near the poster stand. While Phillip was talking to this person about his poster, someone came up to him and said, “I think you’re in trouble.” Phillip looked down to see that his wheel had rolled over the ashtray full of thumbtacks, and he now had a row of thumbtacks neatly aligned around his tire. That was his first experience with a flat tire. He found rolling on a flat tire is more work but not dangerous or very damaging to the tire. However, the tube needed so many overlapping patches that he had to buy a new one.
In general, Phillip finds the need to pump up the tires “a bit of a nuisance,” but he doesn’t have any plans to change to solid tires. “I have an air compressor … and it’s certainly very handy for pumping up the tires. You have to check them every month or so. So far, I’ve done all the maintenance myself and probably will continue to….” Phillip doesn’t mind the tire patching either. “I must have changed hundreds of bicycle tires in my life, so these tires don’t offer any problem. However, I was not used to changing them while sitting on the bed.”
Phillip has attached a few accessories to the chair. He bought a standard bicycle tail light for safety. He and his wife sometimes like to go out for a walk around the block at night, and he doesn’t want to take the chance that drivers won’t see him. He also has a small bag on his chair, mounted crossways under the front of his seat, in back of his knees. It fits perfectly there and it doesn’t get in the way in a rigid chair. “I can keep my wallet and sunglasses in there and never lose them.” One accessory that Phillip would like to add is a cup holder. Because he chose not to have arm rests on his chair, he needs to figure out where to mount it. He does not consider carrying a cup between his legs a good option.
Phillip used a combination of public and private sources to fund the chair. Where he lives, the government subsidizes the purchase of wheelchairs and needed accessories. Initially, he had been given the impression that this program would pay 75% of the cost. In reality, Phillip says that you get this amount only if you have an “absolutely stripped down chair…. It turns out that for practical purposes it’s probably between fifty and sixty [per cent] because they disallow quite a few of the things.” Although it’s not a personal concern for him because he has good benefits coverage through work, he could see that it was a real problem for others. “So that’s a myth that shouldn’t be propagated.”
Phillip describes a number of learning experiences when he left rehab and started navigating the community in his wheelchair. “It took me awhile to learn to use the wheelchair. I used to be terribly afraid of hills. I’d have the feeling I might tip over backwards. Before I used to stop the chair at the bottom of the hill and sort of adjust myself—I’d lean forward and then go up the hill. Now I’ve been in the chair for two years I just go whoop up the hill. It’s surprising how long it took me before I really felt comfortable that way.” Phillip feels that experience and practice are the reason that he is more confident with hills today. Before he gained that experience, leaning forward was an important precaution, which he learned from his physiotherapist in rehab. “He did something for me which I think every therapist should show [their clients]. He was about 180 pounds and he put his foot [on the footrests] and he said, ‘You’re not going to tip over frontwards.’ Then he boosted himself up so his full weight was on the footrest. It was rock stable. That was a pretty good lesson.” He also showed Phillip that when he felt he was at risk of tipping over backwards, he should shift his weight forward by leaning. Phillip found eventually that even backwards he could go up grades as steep as he could push without going unstable. He wishes he had practised these grades with a "catcher" much earlier.
Even though Phillip is comfortable with the wheelchair’s stability, he considers his anti-tip tubes an important feature. Some people warned him that they would get in the way going up curbs and in other uneven places, but Phillip says, “I would not like to be without them. They’ve saved me a couple of times.” He has set them relatively high off the ground, so he finds they do not stop him from negotiating curbs or steps. Sometimes they do get in the way if someone is helping him up stairs or when his wife puts his chair into the trunk of the car. He finds that they are easy enough to take off in these situations.
Phillip also finds that his skills navigating the real world in his wheelchair have improved. “Sidewalks used to bother me. Not smooth sidewalks, but sidewalks that have been around for awhile, especially asphalt ones, and the tree roots bulge up. I could get over them but they were a nuisance. And the sidewalk would be sloped, so I was always going off. You’ve got to brake with one hand and push with the other. I find now that I’m better at them. I can go over them. I don’t try to avoid them as much as I used to…. They have to be fairly bad before they bother me.”
One trick for getting around better is to push with the tires instead of the push rims. “I tend to push on the tires, or a combination of the tires and the push rim. I get a little better grip and another inch of leverage, which is another 10% to 15%.” Because he pushes on the tires instead of the push rims, Phillip usually wears special gloves when he is outside or going any distance. He doesn’t wear them inside, though he admits, “There is one ramp I go down fairly regularly on which your fingers get a little warm.”
In spite of all the success navigating the community, Phillip is disappointed with the difficulty pushing the chair off-road. “The chair likes pavement. It likes indoors. But if I want to go across the park, that’s quite a lot like going up a pretty steep hill. That’s a limitation I don’t like.” Phillip has plans to look at hand cycles to see if he can find a solution. He likes the idea of using a hand cycle in general, but he realizes that “you’re a little more restricted” in the places you can go once you arrive at your destination in a hand cycle. He doesn’t consider a power wheelchair a good solution for him—although a power chair would certainly get him over rough terrain, “I would prefer the manual chair for most cases.” He likes the exercise he gets from the manual chair and the ease of taking it apart to stow in the family car when he goes somewhere with his wife. He would lose these with a power chair, so Phillip has no plans to change.
Phillip and his wife live in a two-storey, split-level home with a basement. They did major renovations while Phillip was in rehab, including gutting the second floor and installing an elevator. The first step was to have an occupational therapist over to assess their home and recommend changes. They also bought a little $12 book from a government housing agency that they found quite helpful. It gave them an overall idea of the things to consider when renovating a home for accessibility. However, one must realize many things may not apply. For example, if your hands and arms are strong, then you do not need to replace the doorknobs with handles. The Internet was another important resource for Phillip. He and his wife were trying out designs on paper and Phillip was on the Internet looking at his options for bathtubs and things like that. He was glad that he was able to get access to the Internet while he was still in rehab so that he could get an early start on this big job.
They took estimates from three contractors, but in the end, they didn’t hire any of them because a good friend of Phillip’s was able to do the job. Phillip feels that because his friend did the job, he had more flexibility. He says his friend did things that contractors would never have agreed to. As Phillip puts it, “Changing things in midstream doesn’t go over well with contractors.” For example, the best place for Phillip to put the elevator meant that they would have to move the bathtub and plumbing stack. “The contractors shied away from moving the plumbing stack,” but Phillip’s friend said that it would just take a few extra hours. So he moved the plumbing stack about three feet, but the positive impact for the design of the house was huge. Phillip explains, “The other places that it was suggested that we put it would have been not nice for the living space…. It would knock out all your closet space in the front hall…. It would have gone over into the front of the garage so that you wouldn’t have been able to really get a car in anymore.”
Phillip is “extremely happy” with the elevator. It is a fully enclosed, chain-operated model, and they bought it second-hand. It gives Phillip access to the whole house except the basement. To have it go to the basement would have required expensive floor-cutting that didn’t seem worth it. Phillip is considering some kind of stair lift to get into the basement. In the process of doing the renovations, however, their friend/contractor recommended moving the laundry machines upstairs into a closet in the kitchen, so getting into the basement isn’t as important anyway. It is also easier for Phillip’s wife. Phillip’s friend had a couple of other helpful ideas where the elevator was concerned. He suggested that they add exterior, insulated doors because the elevator isn’t heated or cooled. He also recommended that they put a small window in the door of the elevator. That way, the interior of the elevator can get “a little light” and Phillip can look up and see if the kitchen light is off as he goes up to bed. He says he would never have thought of those kinds of things without the help of his friend/contractor.
Phillip has an interesting approach to opening and closing the elevator doors. “It’s very hard to reach around behind you, get a door knob that’s three feet behind you, and pull on it. Electric door closers are one to two thousand dollars each, so we put these pulleys up, with a rope which you pull on to close the doors. It cost me about two dollars for the pulleys.”
Phillip wanted a wheel-in shower and his wife wanted to keep the bathtub. So they decided to turn two small bedrooms into one bigger room and put the bathroom in there. But they still had trouble finding enough floor area in the bathroom to allow for turning in a wheelchair. So the “innovation that we did there was to use the roll-in shower as the turn-around space. And as soon as we did that, we were able to fit in everything we wanted.” Phillip reasons that when he is using the shower, he doesn’t need to turn around. And when he isn’t using the shower, he can use the space to turn around. The next challenge was to find a U-shaped shower curtain to fit the roll-in shower. In the end, they had to modify a shower curtain rod designed to fit over a tub. Phillip says, “We spent a fair amount of time drawing pictures in the bathroom—working things out—and I think it was well worth it.”
Phillip says, “I never considered not coming back to work.” And apparently no one else considered it either. His department’s chief technologist completely “re-did” Phillip’s office while he was in rehab. Before he did though, he sought the advice of a student who uses a wheelchair. There is a new desk that he can wheel under, as well as a small rolling filing cabinet and new bookcases.
The mechanics of giving lectures have changed a little for Phillip. He finds it slow and difficult to write on the blackboard now, so he uses overheads. He has a printer in his office that can print colour overheads. This printer works well, although he had to use a little bit of ingenuity to be able to see the control panel. It’s in an awkward place so Phillip installed a mirror on a rod over it.
As well, some industrial-design students designed and built a special overhead projector stand for him that has a space “to spread out overheads or other things, which the normal stands don’t.” It’s also a solid table with a handrail on it. Phillip explains the advantage of the handrail: “It makes it easier to change positions, but particularly, I can do it with one hand. Otherwise I have to set down what I have so I have two hands so I can turn. This way you can grab the handrail with one hand, and a ninety degree turn is pretty easy.”
One annoyance that Phillip has encountered since returning to the university is that he no longer has a lecture room with a sloping floor, and he needs one. He explains that without it, “the people in the back just see the top of my head.” He’s negotiating with university administration about that.
Video:
See how Phillip puts his wheelchair into his car and uses hand controls. Part 1
Part 2 |
Overall, Phillip is pretty happy with his assistive technology, but he thinks he should probably get a van. He says, “Right now, if I go out with my wife, we go to a store, I probably won’t go in because getting the chair out of the back, putting it together and getting in is a chore. So … my wife will say ‘I’ll go in and see if there’s anything in there and if there is I’ll come back and get you.’” So Phillip thinks that if he had a van “I might go in more often. You get out a little faster and a little easier.”
Phillip emphasizes the importance gathering information when buying assistive devices. He takes the opportunity to talk to others in wheelchairs when he runs into them on the paratransit service, for example. He will often learn new things by asking them questions about their equipment. He also considers the Internet an “indispensable” source of information. Phillip also recommends that people try to get things second-hand. He says, “There is a great second-hand market for medical technology, for wheelchairs and everything else in that line…. I bought a commode. We were looking for a commode that I could push myself, and they run around twelve to fifteen hundred dollars. We bought one from a little shop for five hundred.” People can find out about this second-hand market through community agencies serving individuals with spinal cord injuries, such as the Canadian Paraplegic Association.
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