James is a proficient driver of his own modified van. He lives independently in his apartment that he was fortunate to get while in rehab. He stayed there on weekends and was able to successfully direct the installation of home control modifications. James’ early experience with getting a chair, however, was not positive and he felt pressured to get something that didn’t meet his needs. He has since learned to assert his wishes. James has also learned, through some experience in using voice input to control a computer, that writing by hand and by typing better meets his needs.
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“You have got to deal with the whole emotional thing and then you have to be like a sponge and absorb everything - every little bit of information, like you should always listen to people who have been in a chair for four or five years.”
Advice recounted by peer while in initial rehabilitation: “You have to start to try. This is the place to do it. Try it here. Fall out of your chair here. Wipe out here, make a mess. Make your mistakes here. It is a lot easier doing it here, than believe me, doing it in the real world. Because you are not going to have somebody run over and help you.”
On decision-making now versus when in rehab: “It is different because I can see more now, a bigger picture. I know more of what it is that I want to exactly meet my needs. … When I was in rehab, I was really confused as to what needs I really needed to be met… it is like you are a school kid and you say why do I have to learn this?”
In response to comments received that he is lazy using an electric chair rather than a manual chair: “I do not really care what people think anymore. And you know, it is me who is left at the end of the day with enough energy to do as I please.”
Advice from a friend in rehab: “You have to sit in it. They are your legs for the rest of your life. Base your decisions on that, not on whether somebody can get it in a car or can pack it in with this or that.”
James got his first computer through the rehab centre. He first learned about his options from occupational therapists who exposed him to many different products. Both the word processing software, which he still uses, and the original computer system were funded through a government program. Since then he has upgraded his system himself, but he feels it is now too slow in comparison to current systems.
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Hear James using his voice input software. Choose a format: |
James uses a regular keyboard and a pen woven through his fingers to type. He uses a trackball instead of a mouse. He also writes with pen and paper. He bought his first speech recognition system at a computer product symposium that he attended with his father, who had found out about it through the Internet. A free version of the speech recognition software was mailed to him after the conference.
At first, James wasn’t all that interested in using speech recognition, but his father thought it would help him with his typing for school. However, James finds that it doesn’t match his writing style and needs. Dictation is not a skill that he is good at. The software takes down every word James says and there is no time for him to think. He is afraid to say the wrong word. Typing on the keyboard is easier and less frustrating. While James finds that speech recognition allows him to get his ideas down, by the time he goes back and manually fixes the errors, he feels it would be less painstaking to write it down the first time.
Speech recognition hasn’t yet met James’ expectations, but he has learned from the experience. “I wanted it for school because the only way I learn was to write something out. And I thought well if I get this … I will just be able to say what I think and whatever. But I had no retention that way. It was just in my head and out.… So I am just back to writing. I have to. It is the only way I can learn.” James would be interested, however, in trying speech recognition again if he had a more powerful computer.
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The process of acquiring devices to control his environment and learning to use them was simplified for James because he was fortunate to get his own apartment just weeks after arriving at the rehab centre. He used to spend weekends at the apartment, “so I was well aware of what the world was like. I knew how to direct my care.”
An occupational therapist suggested various devices that he might need, and together they wrote a list of requirements. A technician came to his apartment while he was there to discuss how he wanted to have things done. Based on his requirements, everything was installed during the following week while James was at the rehab centre. He says, “You know, it worked and it was great.”
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See James using his slightly modified regular telephone. Choose a format: |
James has an environmental control unit installed beside his bed. It enables him to make an emergency call, to turn on and off a fan, a light and the TV, and to open the apartment door. This unit uses a radio signal rather than infrared so that he doesn’t have to point a controller at a device.
In his living room, James has a modified wall switch that he can easily tap to turn the light on and off or dim it. He uses standard infrared remote controllers to control his TV and VCR. He also has a programmable infrared remote that can control any device including X-10 light and appliance modules that he got. He uses this for his air conditioner and heater. Originally, James got an expensive adapted telephone. However, he never used it because he found it unnecessary. Instead, James uses a standard speakerphone. James was careful not to get carried away with things and he advises people “not to overload—not to overdo it. I mean, if I wanted to I could have got motorized blinds, but I do not need it.”
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See James enter his van via its’ lift, restrain himself and his chair, and drive the van using various hand controls.
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When James decided to go back to school, travelling to the college of his choice would have required transferring from one accessible transit system to another, since he lived in a neighbouring city. A vocational rehab counsellor recommended that he buy a van and if he did, the vocational rehab agency would pay for most of the necessary modifications. James had a physical assessment and training at a rehabilitation centre that had a specialized driving clinic. He initially test drove a borrowed van and the driving instructor, who had a great deal of experience, then recommended the necessary modifications.
James says he ended up with a better set of modifications than he had initially been prescribed. The company making the van modifications convinced the vocational rehab agency to fund a superior system in which the existing drive shaft did not have to be replaced. The steering wheel and column were left intact and the adapted steering control was placed to the right. James’ chair was modified so that it would lock onto the floor of the van in the driver’s position with the push of a button. The original captain’s chair could also slide into this position. “It is excellent for me … you know, if I get tired and I have somebody with me, they can drive. Or my Dad can take the van and use it or whatever.”
James owns a manual chair and has just bought a new power chair to replace an old one. When he first came to rehab after his accident, he was given both a power chair and a manual chair, but he used the power chair initially due to his lack of strength. After a while his therapists encouraged him to use the manual chair to build his strength. Initially, it was an isolating experience because he was too weak to propel the chair on his own and he had to wait for others to push him. He still had the use of a power chair though, when he had to make long journeys.
As he progressed and got stronger, he relied less on his power chair. During the first two years after discharge, James “lived” in his manual and only used his power chair “every now and again.” In the last three years, however, he has not really used his manual chair except to get into someone’s house because it is lighter to get up stairs. He mostly uses his power chair and he says, “There are just so many barriers in the world for me to be in a manual chair and to drive. Like to be in an electric chair, there is no thinking twice about it, I just go.” However, his physical strength declined after he stopped using the manual chair and more recently he has started to work out in a fitness centre and use the manual chair again.
James describes some peer pressure from other people with quadriplegia to stick to using a manual chair. It’s seen as a sign of fitness and accomplishment, despite the extra effort involved. James has often been asked by his peers why he is isn’t in a manual when he has so much movement—a question that sometimes makes him feel guilty. For him, it’s a question of priorities. “You know, it is me who is left at the end of the day with enough energy to do as I please, to go out.”
James was not happy with his original experience getting a chair and seating system. Decisions were rushed and initially based on the opinions of the occupational therapist and vendors at the rehab centre because he did not really know what he needed. The chairs he tried out were never adjusted specifically for him, so he never knew what a “best fit” really felt like. He also found the experience very confusing and frustrating. “Sometimes it was hard because as I slowly progressed, I would sometimes compare my progress with others around me and it felt like everyone knew the secret [to choosing a wheelchair] but me.”
He finally chose a manual sports chair based on the advice from a vendor, however, it was not as adjustable as he was originally led to believe. In the time since he received the chair, his body has changed and the chair has not been able to change with it. James admits that at the time he could not help but rely on what others thought, because “it is hard to make decisions when you are trying to rebuild so much, not just your body but your mind, you know your whole outlook.”
James went back to the rehab centre to get fitted for his new power chair in December 1998. This time around he was not willing to allow anyone to make decisions for him. He said, “I am going to be honest with you. I want to take this home and I want to try it because I am not going to buy it unless…” When a certain type of chair was pushed on him, James vetoed it. He had to give up on a chair that had the correct seating for him to get one that fits in his van, which was a crucial factor. Although he has a problem with his cushion, he has discussed this with the vendor who promises to work it out. James is satisfied that his needs and wants were met.
James’ advice to anyone who is now getting his or her first chair: it’s the most important decision you will make, so you need to take your time. When you try any chair out, get it as closely fitted to your physical specifications as possible. Consider your needs first, as a friend in rehab told James, “You have to sit in it. They are your legs for the rest of your life. Base your decisions on that, not on whether somebody can get it in a car or can pack it in with this or that.” Also, “you should always listen to people who have been in a chair for four or five years.” James feels that while occupational therapists are very knowledgeable, they lack the insight that comes with real experience.
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