Ongoing changes in William’s physical functioning over the years have meant changes in the technology he uses. About 12 years after his initial injury, William was diagnosed with syringomyelia, a condition sometimes associated with spinal cord injury. As a result, he has experienced a gradual, steady loss in his strength and overall motor skills. William says that while assistive devices such as crutches and manual and power chairs have enhanced his mobility and sense of independence, they are also a reminder of the decline in his functioning.
William’s ability to address his changing physical and technological needs has been greatly affected by funding. He relies on government support and receives limited financial assistance for assistive technology from the Veterans Administration (VA). However, in spite of William’s financial challenges and his ambivalence about technology, he continues to seek out and use resources that enable him to enhance or maintain his quality of life. In making informed decisions about assistive devices, William researches the possibilities through various means, including his personal network, magazines and the Internet. Once he has a clear understanding of his needs and options, William turns to rehab specialists for recommendations about specific products. He believes that it would be difficult to become “well versed” in technology and says it is important to “find a professional you can trust.”
Go directly to:
“Keep an open mind.”
“Find somebody you can trust … and try to educate yourself.”
“Learn from your mistakes.”
William’s “first exposure” to assistive technology came shortly after his injury when he was introduced to the Canadian crutch (forearm crutch). There was no alternative at the time and he says that although “not very technological, it allowed me to be ambulatory.”
During the next 12 years, William began to notice a gradual loss in his motor functioning and everything became “harder to do.” He was diagnosed with syringomyelia in 1982, and after his first surgery, he required the use of a manual chair. This was a difficult transition for William who was unfamiliar with his needs and knew nothing about wheelchairs and other assistive devices. He relied on the recommendations made by OTs, and “because of their limited working knowledge of what was available,” William did not have the opportunity to try out different chairs. He learned to use his first and future chairs through “trial and error” and says that he sometimes felt “angry being in a situation I couldn’t control. And, I felt very self-conscious.”
The first of his manual chairs was equipped with a push rim on his more functional right side and “quad” pegs on the left. Because of continued weakness in his right arm, William was unable to manage this chair for long. Eventually, OTs suggested a “one-arm” chair, which had both push rims on one side. He propelled the chair by pushing the rim corresponding to the desired direction. For William, using this chair required a lot of concentration and he had difficulty controlling it. However, after a few “spills” he learned to use it fairly well. Over time, William’s upper body strength decreased further, and eventually he was unable to push himself on anything other than a hard, flat surface.
In order to deal with his declining physical situation, William went to a spinal cord injury centre for the first time in 1984. He had two surgeries within a two-month period and the second left him very weak. After the surgery, William realized that he could no longer manage a manual wheelchair and had to move on to a power chair. This was a “traumatic” experience for him even though the power chair increased his mobility and “allowed me to go places I couldn’t with a manual chair.” William was no longer able to transfer in and out of his chair or bed, and he became more dependent on attendant care. In this sense, the power chair represented “a step backward” and implied that he was “lazy.”
Initially, William was given a used power chair. Due to his height and overall size, this ill-fitting chair was eventually replaced with one he refers to as a “monster.” It sat him up too high and he was unable to use his van, even with the four-inch drop in the floor, unless he tilted his head to one side. William told his OTs that this chair did not meet his needs. They were reluctant to replace this costly chair, but William insisted that he couldn’t use it, and he was given a standard adult wheelchair that sat him lower to the ground and had a reclining back.
William’s current chair is the most comfortable he has ever had. His seating and overall posture are much better than they were in any of his previous chairs. The therapist who worked with him on getting it suggested a longer seat to support his legs. At first, William thought that meant a longer chair, which would make it difficult for him to transfer in and out. However, the therapist found a way to make sure that the seating and recline system met William’s dimensions and was properly positioned on a new power base that was no bigger than the one on his old chair. The result is that William’s new chair is actually narrower and shorter and a better fit than his old one.
Because of further weakness in his right arm, it has become difficult and even unsafe for William to use a joystick to drive his chair. As a result, he explored and chose a new drive system. This technology replaces the joystick with “a brand new type of guard system that is actually built into the armrest.” Before deciding on this option, William looked into a couple of alternatives. Chin control was not a viable solution because he has to lean forward to get in and out of his van, a potential danger when using his van lift, and sip-and-puff control, in William’s words, “is a little bit overkill at this time” because he can still move his right arm. He is optimistic that the new control system will be easier for him to use than the joystick.
On the subject of wheelchairs, William says, “[They] are my legs and so I want the best.” Throughout the years, he has become very aware of his needs in terms of size and overall dimensions of his chairs. When making decisions about wheelchairs, William combines his personal experiences and suggestions from peers and other consumers with professional expertise. He believes that it is difficult for any one individual to become “well versed” enough to know what he or she needs without relying on rehab specialists. Of the therapist who helped him with his present chair, William says, “I put my trust in him … he knows more about this than I do and I saw what was available and the choices I had.”
Through his continued involvement with the spinal cord injury centre, William meets others who have disabilities and learns from them. He is able to “see how other individuals do different things and possibly it would be better than the way you’re doing it…. It does give you an idea of well, look at that guy’s chair … I wonder, could they do something like that for me?”
Following his second surgery, William became more dependent on attendant services. He was unable to transfer between his chair and his bed without assistance. Finding good attendants is always difficult, and because of his size, William’s search was restricted to males who were “at least six feet tall and had a good strong back.”
Initially, William used a mechanical lift that required two attendants to operate—one to stand behind him and pull him back in the sling while the other cranked the handle. It was hard enough to find one attendant tall and strong enough to meet his needs, let alone two. So, when William saw a hydraulic lift in operation at the spinal cord injury centre, he decided to try it. He now has this one-person lift at home. It is easy to use and gives William greater flexibility in selecting attendants.
In 1984, William decided to stop driving. He had just acquired his first power wheelchair and had problems with spasticity. He did not want to run the risk of having an accident and hurting himself or someone else. William’s wife does the driving now, although William sometimes goes out with an attendant.
William has always used a full-size van because of the upfront cost involved in converting a minivan. Before buying a van, he researched his options by looking into various models. In his case, the floor of a minivan would need to drop ten inches, which would require major structural changes to the vehicle. Unable to afford the high conversion cost, he decided on a specific full-size model. In William’s van, the floor has been dropped four inches without changing the suspension of the vehicle, and he uses a power wheelchair lift to get in and out. In the van, he sits in a forward-facing position just behind the two front seats and his chair is restrained with four tie-downs. He wears a lap belt and uses a chest strap for added upper body support.
William was introduced to computers in 1990 while doing volunteer work. After two or three years of hands-on experience, he bought his first computer. He recalls feeling intimidated at first, but now he knows enough about computers to troubleshoot problems. He says he can “almost build a computer at this point.” He learned a lot about computers through networking and by watching television programs. Some of his current volunteer work involves teaching others how to access and use the Internet.
When he first decided to buy a computer, William was unclear about his needs and purchased what he calls “a package deal.” By the time he was ready for his second (and current) computer, William was much more knowledgeable and knew what he wanted. A friend suggested a company with a “good reputation” that would allow him to have “input” into custom building a computer.
To operate his computer, William uses a compact keyboard and a programmable trackball. Because his keyboard is half the length of a standard one, he can keep the trackball nearby, minimizing his need to reach. William prefers to elevate his keyboard and this, along with its curved design, gives him easy access to the function keys and the number pad. Because he has difficulty typing, William also uses a lateral typing aid. This device straps around the palm of his hand and he types with the peg that extends from the side of the typing aid.
William considers himself a recreational computer user. He writes short stories, reads books, plays computer golf, and uses the Internet for research and communication purposes. For writing, he uses two different speech recognition systems, alternating between them according to his needs. He would like to upgrade, but because funding is a problem, he uses both speech recognition systems to accomplish different tasks.
The first speech input system is an inexpensive product that operates with a variety of programs; the second was included in a word processing program he recently purchased. Although the second system can only be used within the one specific word processing application, he finds that the recognition is better and it doesn’t require as much use of the keyboard and mouse. Speech recognition makes a big difference in William’s ability to communicate. He says, “If I’m going to email someone say four paragraphs … I can knock that out in probably three or four minutes. Whereas if I was typing, it might take me 20 or 30 minutes to do it … it’s easier for me. I’m not quite as frustrated.”
The computer is important to William. Without it, he says, “Life would not be as pleasant.” It is the one piece of assistive technology that does not remind him of his physical limitations. It gives him a sense of freedom that he does not experience in any other situation. Internet access allows him to play golf—a game he loves and has become expert at. In his words, “The computer doesn’t know if you’re disabled. When I’m playing golf on there I’m doing it one-handed with a trackball and I can beat most of the people I play.”
Over the years, William has learned a great deal about himself and some ways in which technology can make his life easier. In making informed decisions about purchases, he finds it useful to talk to peers and professionals, and to ask a lot of questions. He has become proficient at identifying his changing needs and investigating possible solutions through various means including networking, reading, television programs and the Internet. After he has a clear understanding of his needs and the available options, William turns to professionals such as OTs for recommendations about the specific devices that meet his requirements. He combines his own experiences and those of his peers with professional advice, and makes the final decision.
William’s advice to prospective consumers of assistive technology is simple: learn as much as you can, and try things out before you buy. He also believes that it’s important to keep an open mind and to realize that you will probably make mistakes. Because of their significance to his quality of life, William feels especially strongly about wheelchairs and seating systems. He says, “The thing is to learn from your mistakes. Your first chair may not work out, but you’re going to learn a lot from it, you know.”
 |
 |
 |
 |
|
- - - - - - - - - - - - - - - - - - - - |
Home © 1999 - 2009 All Rights Reserved |
