Sam’s independence is limited by a lack of many basic (but expensive) assistive devices. To complicate matters further, his health has been poor. He recently spent the better part of a year in the hospital recovering from a pneumonia and a pressure sore.
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Sam has experienced a number of different living situations since his injury. Immediately after rehab, he moved into a building with 24-hour attendant care. Because of the number of people available to assist, he didn’t need to find ways to do everything independently. However, Sam didn’t feel comfortable calling for help every time he needed something, and he began to look for ways to complete tasks independently. He acquired a four-channel environmental control unit, which he used for turning the TV and a fan on and off. He also found simple low-tech devices for solving common problems such as picking up things that had fallen on the floor (see below).
When he got married, Sam and his wife moved into an apartment that was not specifically designed for someone who uses a wheelchair. Instead of having attendants on call in the building, Sam needed to arrange for periodic visits from an outside attendant care service. The apartment also had accessibility problems. Through lobbying and research into available government grants, Sam was able to have important modifications made, such as the addition of a door opener and a wheel-in shower, both in his apartment and a number of others in the building. This early apartment turned out to have much more in the way of accessibility accommodations than anywhere he’s lived since.
Sam and his wife rented their current apartment while the building was still under construction. The landlord assured them that the unit would have both a door opener and a wheel-in shower. That promise was not kept, and the government program that allowed Sam to add these items to his old apartment has since disappeared. As a result, if he needs to go out, he has to leave the apartment when his attendant is ready to leave. If his ride on public transit is scheduled for one o’clock but his attendant leaves at eleven o’clock, he has to wait out the two-hour difference in the lobby. The exit to his balcony is also a problem because it has a four-inch lip that Sam can’t cross. Sam is extremely frustrated by this situation and says, “Everybody else is allowed to walk in and out of their own apartment … have a shower any time they want. They’re taking that simple right away from me … by not fulfilling their promises.”
Sam has speakerphones in both his living room and his bedroom. He relies on these phones to get help when he needs it. His wife is a nurse and works nights, which means that he is often on his own in the apartment at night. From bed, Sam can hit the speakerphone button and dial “0” to have the operator make a call. This setup works as long as Sam is positioned on his side. If he happens to roll on his back though, he cannot hit the button. This has obvious implications for emergency situations. “If something happens at night, which has happened, … 911 sometimes becomes a necessity.” During the day the telephone in the living room works well for Sam, but the speaker quality isn’t excellent and he’d like to be able to have private conversations without everyone else in the apartment being able to hear. He believes that he would be able to pick up the receiver if it could be adapted with a loop of hard plastic, which he could slip his hand through.
In the early days after Sam’s injury, he was constantly looking for ways to solve physical problems independently. “Once you’re in a chair, you know, you drop something on the floor, you have to think of another way of picking it up rather than calling somebody else.” A bent coat hanger is a useful tool for picking up many objects that can fall. He’s also devised a way to pick a soda can up off the floor: he throws a plastic bag down, puts the hanger through the bag’s loop handles, rolls the can into the bag, and lifts the hanger up.
Sam first learned to use a manual wheelchair at the rehab centre. Initially, he had difficulty with pushing. The first chair he used had 16 pegs on each push rim, so that he could move the wheels with less effort. As he gained strength, he would be given a chair with fewer pegs, until he could get around without any. He remembers that “it was frustrating, difficult, also a challenge.” It would take him more than three quarters of an hour to get from his room to the therapy area, but every time he made the trip he tried to shorten it so that, “instead of becoming a frustration, it became a challenge.”
Sam initially resisted the whole idea of using a power wheelchair. Using the manual wheelchair was hard work, but it gave him a feeling of empowerment because he was moving around under his own steam. Once he tried the electric wheelchair though, Sam found that there was no looking back—he discovered he could be more mobile and independent. Sam realizes now that in not wanting to try a power wheelchair, “what I was actually doing was taking a whole world away from me.” The power chair allows him to enjoy outings with his wife in less accessible places such as parks. “We could walk side by side and enjoy instead of her pushing me and working.”
Right now though, Sam is stuck with his manual chair because the power chair needs repairs and he doesn’t have the money to pay for them. Sam can’t access government funding for these repairs because his wife works, making him ineligible. The repairs are so expensive that personal income cannot cover them. In his words, “It makes it quite frustrating because it’s all so expensive.” However, he also says, “I can’t put a price tag on the freedom and enjoyment it has given me.”
Sam’s seating is a complicated issue because he is an amputee below the left knee, and has scoliosis (curvature of the spine) as a result. He’s also prone to pressure sores. He sits on an air-filled, high-profile cushion, which helps prevent skin breakdown, but he finds balancing on the cushion difficult.
Sam is now exploring the use of a computer and speech recognition software at the rehab centre. He has submitted an application for funding to a government agency—one that does not consider family income in its funding decisions. His experiences with speech recognition have been positive so far. He found it “fabulous” because you can write as fast as the words come out of your mouth and you don’t have to spell anything. “It goes directly with what you’re thinking.”
Sam has great hopes for the computer. As well as helping him keep in touch with his friends, he believes it will be a tool he can use to advocate for a better living situation, giving him the opportunity “to exercise his freedom of rights.” Sam also believes that the computer will be useful in getting back to work, “on a level playing field.” He is particularly interested in ways he can use the computer for artistic pursuits. Finally, he feels that a computer will give him a real boost on a personal level. “It’ll be not only stimulating but it’ll give me something to keep me active. It’ll give me a lot more self-esteem…”
One piece of advice is to always carry a cellular phone in case of wheelchair problems. Sam recalls one difficult experience where his chair stopped working while he was alone outside. “I was stuck from about quarter to eight in the evening and I was found about one o’clock in the morning…. I thought I was going to be out all night just because I veered off to a place…”
Sam also recommends that people make sure they’ve exhausted all possible resources before they buy anything with personal funds. When he first got injured, his friends raised a substantial sum of money for him. He spent it on what he needed without realizing that government funding might have been available to him.
Finally, Sam thinks it’s very important to talk to people who are in the same situation as you are. Even if you don’t like what they say, Sam advises people to listen, make a note of it, even investigate it a little further. Never close your mind to anyone, even if you think they’re wrong. This means “always trying to keep an open mind.”
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