Helena seems to be constantly on the move. In addition to her full-time schoolwork, Helena is involved in a number of leisure pursuits, including basketball, tennis and travel. She also has a very active social life. All of this activity depends on key pieces of equipment that Helena has found over the years. As an assistive technology consumer, Helena is always on the lookout for new ways of doing things. When problems come up with her equipment, she does not hesitate to seek advice from friends who use wheelchairs. She also visits a local assistive technology tradeshow every year to find out what’s new on the market. Helena puts a lot of thought into her choices and describes some important lessons she has learned in the ten years since her injury.
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It might be a stretch to call a person’s living space “assistive technology,” but the way a space is laid out can have a big impact on how well a person is able to use their technology. Helena initially had trouble finding a good place to live because of a lack of accessible apartments. “I went through like 50 applications, 50 different co-op buildings. They always have waiting lists.” For Helena, all this work paid off in the end, and today she lives in an apartment that is “quite built for wheelchair users.” There is room for her knees under all the furniture and appliances in the kitchen and bathroom. Also “all the light switches are low. All the plugs in the wall are low. The counters for the sinks are lower by three or four inches.” Even with a place that has been designed with the needs of a wheelchair user in mind, Helena has had to use her problem-solving skills from time to time to fit the apartment to her needs.
An accessible kitchen is very important to Helena. She jokes, “I cook a lot. I don’t cook very well, but I cook a lot.” For this reason, Helena really values her accessible kitchen equipment. The oven has a side-opening door mounted up at waist height, which is easier to deal with than an oven on the floor. The oven also has a sliding transfer board underneath it to help get things in and out. “I just open the oven door and put the hot stuff on the sliding table. It’s easy and safe.”
Working with hot food in the kitchen does present the risk of bad burns. An early experience showed Helena that she would have to find a way to keep her skin safe while wheeling around the apartment with hot liquids. “I had a microwave oven. I used it to heat up a cup of noodles. The water was boiling, so I put it on a tray and then put it on my lap. And then I remember, I forgot to grab the chopsticks. So by the time I reach the chopsticks I have a spasm in my leg, it shakes a bit and boiling water spills on the tray and on me …. I didn’t feel it, but I was so hurt. It’s even more hurt when you don’t feel it.”
After this burn, Helena started talking to others to find out how they manage hot stuff in the kitchen. “I talked to a fellow in a chair. I told him what happened. And then he told me, ‘You know what? You shouldn’t carry in a tray. You should use those Rubbermaid boxes. Those plastic boxes. Everything’s in the box and then when it spills, it spills in the box; it doesn’t spill on you. You can even put a towel at the bottom. Then it absorbs some of the liquid when it spills.’” Helena points to this advice as an example of why it’s good to talk to peers about problems you might be having. “So that experience, I never learned from the [rehab centre] …. And I’d never imagine how to solve it. It’s only the people with the daily experience in the chair.”
Besides the accessible oven, another useful appliance in Helena’s kitchen is a side-by-side refrigerator-freezer. Instead of having the freezer in the top part of the fridge, it occupies the entire left side, from bottom to top. With this arrangement, it is easier and safer for Helena to get heavy frozen food out of the freezer.
Finally, Helena finds that a reacher makes it possible for her to use space in her kitchen cupboards that she wouldn’t be able to get to otherwise. The reacher does the job as long as she chooses the items for the high cupboards with the reacher in mind. “I can’t put breakable stuff in the cabinet, but I can put lightweight things like cereal or food savers or plastic cups, so I can be able to still use those cabinets.”
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See Helena transfer from her wheelchair to her bathtub, and back. Choose a format: |
Helena’s bathroom is large with a lowered sink and with grab bars strategically located around the toilet and bathtub. Using a standard bathtub means that Helena has to transfer from her wheelchair. In her first apartment, she used a shower bench positioned with two legs inside the tub and two legs outside. This arrangement worked well. After moving to her current apartment, she found the tub was too high to set the bench up this way. “The first time I transferred into it, I fell. The second time when I fell, I grabbed the shower bench and it broke.” Besides safety, Helena saw another problem with shower benches in general. “If I travel around, how can I bring a shower bench with me?”
She asked others how they deal with tub transfers and someone suggested a portable grip bar that could attach to the top of the tub rim to help with transfers. This way, she could lower herself onto a cushioned mat on the bottom of the tub instead of having to use a bench. “I just transfer. I sit on the side of the tub first and then I slide down into the tub. All I need is that grip bar and it’s easy to carry.” Helena takes the grip bar with her when she travels. “It just grips on and you tighten it.”
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See Helena transfer from her wheelchair to her couch, and back. Choose a format: |
The bathroom isn’t the only place where Helena has had to problem-solve about transfers. In the early days after her initial discharge from rehab, she avoided unnecessary transfers, because she didn’t feel she was good enough at it. “I have a couch at home. I have chairs at home. I never sit in there. I will avoid any transfers as much as I can. That was the very beginning stage. First couple of years.” Helena’s transfers have improved with practice and some advice from peers. “I’ve got lots of friends in the wheelchair that encourage me a lot, teaching me different techniques and tricks. I remember a friend of mine telling me when he saw me transfer, he said I’m pushing away the chair at the same time that I transfer. That’s why my transfer is not stable. I’m scared also. I end up sitting on the floor. So he just gave me a hint to try to push the chair toward you, the opposite side of where you’re transferring, then you’re safe. You won’t go anywhere.”
Like many, Helena has difficulty transferring from the floor into her chair. “If I fell on the ground, I wouldn’t be able to get back up to my chair.” In some early experiences with falls, Helena needed ingenuity to get back in her chair independently. One time stands out in her mind. “I was supposed to meet some friends around the area in a restaurant. By the time I put on my jacket, I think I leaned back too much, so I fell. I don’t want to miss seeing my friends and eating with them. I call my friends and tell them I’ll be a bit late, to wait for me.” Helena looked around and figured out a solution involving four or five large cushions she had in her apartment at the time. “I crawl over, grab those cushions. I put one on top of another like stairs. I make stairs out of those cushions. Then I crawl from the ground to one cushion, second cushion, third cushion until I’m high enough to get back to my bed. Then I can transfer from my bed to my wheelchair. I was sweating all over. It took me about half an hour, but I was so glad. And by the time I see my friends, I told them the whole story. I was so happy. Like, if I have friends around, they will pick me up, and I will never discover this skill.”
Helena plays basketball regularly and tennis every so often. She has three wheelchairs: one for everyday use and one each for these two sports. Helena explains that there are important differences between these three wheelchairs. “The height of the basketball chair is the same [as the everyday chair], but the [camber] angle of the wheels is much wider.” The camber angle on Helena’s everyday chair is three degrees, but on the basketball chair it’s nine degrees, which means that the overall width of the basketball chair is quite high where the wheels meet the floor. “I only use it to play basketball. The angle of the wheels makes you turn easily and faster. That helps my basketball game, but if I stay in my basketball chair and wheel around my apartment I will probably bump into everything because it’s so much wider. It doesn’t fit through my bedroom door.”
The tennis chair is much lower to the ground and very light, “my lightest chair ever.” There is also a higher “dump” angle on the seat so that there is more of a bucket for Helena to sit in. “I have to strap myself into the backrest of the chair. When I play tennis, when I swing the racket, the chair kind of turns with me. It’s like part of my body. I love that chair. And again, the camber angle is very wide, so it turns easily.”
The qualities of the tennis chair that make it good for tennis are actually disadvantages for everyday use or for basketball. “I can’t use it as a daily chair because it’s so wide and low. If I’m much lower then I will have a hard time doing my dishes or cooking. And I can’t use a lower one for basketball, because I’m already so much apart from the group…. I have a basketball teammate who uses a really low sports chair, but not me.” Because of these differences, Helena needs to keep all three chairs to stay active in these sports.
One final piece of exercise equipment is an attachment for Helena’s everyday chair that allows her to turn it into a hand cycle. “It’s one wheel and it attaches to my wheelchair and it lifts my daily chair a little bit, so my front wheels are not touching the ground. Then it’s like three wheels on the ground.” With this attachment, Helena can propel herself using a crank attached to the front wheel.
Finding storage space for all this equipment can be a challenge. She keeps her sports chairs on her balcony. She keeps her hand cycle attachment in her mother’s garage because it’s too big to keep in her apartment, and she doesn’t consider the locker in her apartment building safe for expensive equipment. “I don’t want to leave it downstairs in the lockers, so I leave it in my mother’s garage.”
Helena drives almost every day for school and her other pursuits. She has a compact two-door car that suits her needs. “I don’t want to drive a van. I’m alone. I don’t need a family car. I don’t need a huge car. It takes up so much gas and parking space. A two-door small car works perfectly for me.”
The adaptations for driving are very important to Helena. “We put a hand control on the left side of the steering wheel. And I have a ball installed at the four o’clock position of the steering wheel, so I’m able to turn the wheel with my right hand. My left hand is controlling the hand control, which controls the gas and the brake. Push down is the brake and twist toward yourself, then it’s giving gas.”
This push-and-twist hand-control system is actually the second kind that Helena has used. The decision to change was not easy. In her words, “I was using the push-and-pull [hand controls] for so long…. You push down for the brake, and pull up for the gas. The disadvantage is that you have to keep pulling. When you go long-distance driving, I have sore arms, when you keep pulling toward yourself and hold that position for a very long time, I got very sore arms. After a few years, I met some friends in a chair and they told me they’re using the push-and-twist system. The keep telling me how good that system is …. I’ll like it for sure. But I was hesitating …. I’m so used to driving like that. Then, just as I was about to make up my mind to change, a friend just bought a new car, put in a new hand-control system and he got into a bad accident. Just because he didn’t get used to the hand control. Maybe he didn’t practise enough …. It was bad. Right after that, I said, ‘Okay, I’ll keep that. I won’t change. I don’t want any accident, I don’t want to try.’ Until I trade my car and I got this new one a year-and-a-half ago. They don’t even use push-and-pull anymore. It’s like an antique. They can’t find it anymore, so I have no choice…. I go, ‘Okay, I’ll try, but I’ll need a lot of practice in parking lots.’” Helena tried another change to her driving controls when she got her new car. Until then, she had always mounted the ball that she uses for steering at the two o’clock position on the wheel. In retrospect, Helena says that it wasn’t the best position for driving long distances. “It was tiring, having to keep your hand up there at two o’clock. And sometimes when I go for long, straight roads, I’d have to rest my arms lower….” When she was getting the controls installed in her new car, Helena found that the vendor had installed the ball at the four o’clock position instead. Helena was not sure at first if this would be a good change. “When I see it, I was like, ‘Hmm, this is something different. Will this work? Okay, I really have to get used to it.’ But [the vendor] was very patient. He stayed in my car, going around the parking lot with me for a long time. He explained to me that this is much better …. I tried it out, and it is better because four o’clock my arm is kind of resting. I only need to turn and move when I need. So it is much better.”
Like many others, Helena’s early experiences with the process of buying a wheelchair did not leave her with positive feelings. “The first vendor I got for my first chair was so bad. They never explained anything to me. It’s my first chair. I never tried a good one, so I can’t tell how bad it is. The seating is bad. They sit me up high. I had a hard time to push…. They gave me things that I don’t need. They gave me a push handle. They gave me clothes guards. They gave me armrests.” The poor fit, extra equipment and lack of explanations left Helena feeling like the vendor didn’t have her interests at heart. “They just put everything in because my first wheelchair was paid by [a public funder]. It’s kind of like, ‘Oh, she won’t know anything. We’ll just give her something.’ And it’s true I don’t know anything at that time, but no one ever explained to me.” She had therapists working with her as well, but she felt that they left all of the details up to the vendor. “I didn’t even know it’s my choice to choose a vendor. I didn’t know what was available on the market.”
Soon after getting her first chair, Helena moved to another city where she became friends with a wheelchair vendor who used a chair himself. “He saw my chair and he explained it all to me…. And then he referred me to another vendor. They did a big change the settings and everything. And then I knew how bad it was. Such a big difference.” After this change, Helena found immediate changes to her lifestyle. “It’s so smooth, so much easier. It definitely made me more active. Before the new settings, I was tired pushing around, so I don’t feel like going out often. And even if I’m out, I want to go home soon. But now I don’t even think about it. It’s like a part of me.” The whole experience taught Helena how important these small details are. “You know, we’re stuck with the chair all the time unless we’re in bed.”
Helena believes she could have avoided all this trouble if she had had much more experience before making her first purchase decision. Her advice to people in rehab is to make those early choices carefully if possible. “I suggest they send different vendors to the institute for new injured patients. Of course, they won’t know anything about what’s good, what’s not and what’s the difference between different models of chairs. I suggest the vendors give lots of sample chairs for them to try out. And more detailed explanations. Tell them not to rush into buying a new chair, but try out different models.”
These experiences have taught Helena a great deal about the qualities that make a wheelchair good or bad for her. Weight is one of the most important factors. Helena needs a light chair because she is on the go so much. Helena is especially aware of the chair’s weight when she is getting it in and out of her car. “When I transfer to my car, I have to lift the chair over me to put it in the back seat. I have wrist and shoulder problems because I’m doing that motion so often. This chair is 32 pounds.” The reason that number matters so much is obvious when Helena describes her process of transferring into the car. “First of all I lock the wheels. Then I transfer, sit in the driver’s seat. In my car, the back seat is folded down and covered with some fabric…. I pull down my backrest. Then I push down my driver’s seat, so I have a lot of room in front of me, on top of me. I take the wheels apart and put them in at the back, and then I just lift the whole frame over me and put it in the back seat.” As a result, Helena is always looking for a lighter chair. She sees some new chairs made from titanium as one possible solution to explore in the future, but they cost too much right now.
Wheel camber is another subtle factor that Helena pays attention to when choosing a wheelchair. Her first chair had a zero degree camber on the wheels, but she prefers the three degrees that she has on her current chair. She explains, “You would tell the difference when you’re on a bumpy street. Let’s say it’s not a flat surface. If the sidewalk is tilted to one side, then you have such a problem balancing yourself…. With a few degrees of camber, you’ll be much more stable. It doesn’t make much difference on smooth flat ground, but when it’s on a slope or some irregular, uneven surface, then you will tell it is a big difference.” But there is a trade-off: the stability that comes with camber is at the expense of a greater overall chair width. “When I first changed to this chair with three degrees, I had to take some time to get used to it. The places I used to get through, I don’t get through any more…. So I want some angle, but I don’t want a wide chair so I choose three.”
Helena’s try-before-you-buy advice applies to other equipment besides wheelchairs. When she was in rehab, Helena told her occupational therapist that she would need a reacher like barbeque tongs with her all the time, because she couldn’t reach things on the floor. The therapist thought that Helena might be able to do without, given some time and practice. Helena says, “And she was just smiling and she says, ‘Oh, you wait and see, you might be able to pick things up later.’ And I didn’t understand at that moment, but I do now. Now I can do it…. It does improve. So in the very beginning of injury, things that you can’t do, don’t decide to buy anything yet, but try out things. Try out a lot of things and then wait till you get your situation stable. Then you will know exactly what you really need and what you don’t.”
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