Tony’s account of his experiences with assistive technology reveals a lot about who he is as a person. By his own self-description, he’s inner-directed and confident in all his decision-making - he “dissects information” to figure out what he wants and then goes after it. He looks at all of his assistive devices as tools to help him stay in control of his life and “achieve for what I perceive to be the best.”
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“A computer is definitely a tool that is instrumental in a person with spinal cord injury’s life, at any level.”
“The second time around, you know much better. Once you’ve been through the system or the process once, you know the ins and outs. You know the short cuts; you know how to do certain things.”
“You really have to know yourself as an individual and you just have to be strong in what you want.”
Tony was comfortable with computers because of experience prior to his injury. Now, Tony uses his computer “every minute of the day.” Professionals at a rehab centre selected his computer for him with his input on features and options; he opted for them to take care of the detailed specifications as it saved him from having to do the research. Most of the cost was covered by government funding, and Tony was able to cover his share of the cost with his extended health and insurance coverage, so in his experience, there was really “no deciding” to get a computer. He knew it would be an essential part of his life and work—it was going “to make me money.”
Tony saw the computer as an essential tool for starting his own business in events planning. He bought a scanner so that he could create his own publicity materials. He also uses his computer for correspondence, for taking care of his accounts and as an information resource and research tool via the Internet.
There were some things he chose not to buy, despite recommendations. Tony tried speech input but he found it tedious and he felt he could type faster than the computer could respond. Also, Tony didn’t like the idea of having to speak precisely or dealing with incorrect words. He found other options more useful, including a reduced-size keyboard and a trackball that responds to a touch of the fingers, instead of requiring movement of the whole wrist and hand.
The computer counts for much more than all these practical uses in Tony’s estimation. “It empowers me … it makes me feel better about myself.” It gives him a chance to meet people via the Internet who are in the same situation. The computer is a source of entertainment, independence, security, companionship and an information resource. Tony sums it up: “a computer is definitely a tool that is instrumental in a person with spinal cord injury’s life, at any level.”
In keeping with the important role the computer plays in Tony’s life, he’s organized his desk top for maximum efficiency. His computer is in a tower case on the floor so it doesn’t take up space in front of him. He wears a telephone headset on his right side where it is comfortable and has the phone placed to his left, so that he can see the numbers on the dial pad. Tony says, “With my headset I’m able to be on the phone, have my hands free to still type at the same time, turn around watch TV, … do my scanning, … create this on the printer.… Everything is set up to help.” This arrangement also gives him more room to write using his right hand. Tony is able to pick up the receiver with his left hand using a specially designed splint mounted on the phone cradle.
How things look matters as much to Tony as how well they function. He had splints made to fit him, based on molds of his own fingers and hands, in part because he disliked the institutional look of the standard type. “When you have something on your hands, it draws more unnecessary attention to you where people look at you as being disabled. And I don’t want that type of attention. So I figured, I need something a little smaller, easy to pack and put away.”
Tony has several splints of varying sizes for holding pens—each of them holds a pen with ink of a different color, so he doesn’t have to spend any time taking the pens in and out if he wants to switch.
He has a custom-made typing splint rather than the typical ‘slip-on’ finger stabilizer. This is more secure and it allows him to work faster and more efficiently. Tony also commissioned a brush handle to fit the form of his hand so that he could brush his daughter’s hair as well as his own. He has two pieces of Velcro that can be wrapped around the handle and his wrist so that the brush is secure. The same thing can be used to form a splint for eating, combing your hair and brushing your teeth.
Tony is less concerned about people seeing him wear splints at home, because he can show them how it all adds up to greater independence. If they have questions after watching him “in operation” with his splints on, he doesn’t mind explaining things. At that point it becomes obvious that these are things that everybody could use and it’s not about disability anymore.
Tony first got a manual wheelchair while he was still at the rehab centre. He doesn’t use or own an electric chair. In his view, “If you have the capabilities of pushing yourself around, it’s good for you. The manual chair will provide you with an independence that you need to have.” Tony’s perspective is that an electric wheelchair can make you lazy. He will only get one as he gets older or it becomes medically necessary, but it is a lot of money to consider right now.
For him, the process of getting his first chair was “tedious and restricting” because at that point, “you don’t know what you’re dealing with.” He feels he spent way too much money on a chair that did not actually fit his 6’ 3” frame, despite the best efforts of the therapists. He also feels that the standard tryout of three or four days in each chair isn’t enough to go by, yet all subsequent fittings are based on this first impression.
Tony feels that people shouldn’t buy wheelchairs until they have been out of rehab for at least six months to a year. In Tony’s experience, that’s the time it takes for the body to truly adjust. By then a person has been out and about doing things and living in his or her own environment. Everybody tends to gain some weight and strength—in Tony’s case, his shoulders and back filled out with exercise and the chair no longer fit him. He also discovered that he didn’t need many of the costly extra features, such as armrests and “hill huggers” that had been added to his chair. It also cramped Tony’s style in other ways—he felt it was “unattractive” and “institutional” looking. It also had a rigid frame and could not be folded into the trunk of a car, which was very limiting.
After two years in this first chair, Tony bought a second manual chair. Making decisions and getting information about what he wanted and needed was much easier the second time around because the therapists “couldn’t tell me anything I didn’t already know.… The second time around, you know much better. Once you’ve been through the system or the process once, you know the ins and outs. You know the short cuts; you know how to do certain things.”
His advice to anyone who is buying a chair for the first time is to get a model that can be adjusted for changes in width, cushion and back later on. Don’t spend your money on all the “bells and whistles” unless you know you need them—in the long run you will have to manage on the settlement or income that you’ve got. “You really have to know yourself as an individual and you just have to be strong in what you want.” Talk to everybody about their experiences—patients at the rehab centre, people who have been using chairs for a while, people who are buying their second or third chair and anybody who has a good lawyer, so that you can maximize your resources.
Tony recently bought a minivan. It has been modified with a ramp, which will soon be replaced by a lift, because he finds the ramp too steep. The middle seats have been removed so that Tony can turn around in his chair to transfer into the driver’s seat, which also swivels. From there, he can transfer across to the passenger seat as he is still in the process of getting his driver’s license and he relies on his friends to get him around. Hand controls have been added. A tri-pin driving arm keeps his arm in place for steering because he has no handgrip. His uses his left hand to brake and accelerate.
Tony visited the company that offers such controls and saw different types of options and tried them out on his own van. He had a rehab consultant work as a go-between with his insurance company and the various companies involved with his van. He found this person helpful because she had experience in negotiating with the insurance and other companies.
However, Tony is not entirely happy with the make of the vehicle—he dislikes the style and would have preferred another model from a different company. He didn’t have much control over that aspect of the purchase because his insurance company paid for it. Looking back on it, Tony wishes he had investigated what was available from other carmakers. He believes it’s worth getting something you like for such a lot of money and there’s almost no limit to what you can buy if you have the financing for it.
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