An experience early in his recovery made John realize, “I had to take control of my care and rehabilitation.” He recalls that almost immediately, he became “very assertive.” Over the years, John has come to believe that, “The really nicest people don’t survive very well.”
Because he is older and his needs have changed, John finds that he is making different choices about assistive devices today. He values his independence, and his primarily low-tech choices in assistive technology have been greatly influenced by his need to “get around.” John continues to seek the advice of his peers and other consumers as well as rehab specialists, and considers their input along with his own experiences. But in the end, the decision is his.
With his mobility and self-sufficiency as his guiding principles, John has adopted a simple, pragmatic approach to choosing technology: “Minimize the gadgetry.”
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“The really nicest people don’t survive very well. Whoever survives the longest are a little like hugging a porcupine … we’re not necessarily bad-tempered but very assertive.”
“There’s always a trade-off of some kind … you just have to make the best trade you can.”
“It’s important to listen to [professionals] but make your own decisions.”
From the time he was first injured, John says, “I understood I was paralyzed … it really didn’t bother me. And rather than resisting the chair, I focused on a way to get around.”
Immediately following his accident and for several months afterwards, John was in a general hospital. The only wheelchair available to him there was one of those “old wheelchairs with the big wheels.” He used it to get around within the hospital. While it enabled him to be mobile and afforded him some measure of independence, he says, “It was clear then that this chair wasn’t going to do well for me.”
To better address his rehabilitation needs, John was eventually transferred to a spinal cord injury centre. There, he felt less isolated and was encouraged by seeing “other people moving around.” Eventually, John was measured and prescribed a manual chair. He says there were few options in those days, and he was not involved in the decision-making process. That responsibility fell to the rehabilitation specialists; John was merely a bystander. He recalls, “I was pretty much willing to let them [professionals] tell me what I needed…. I didn’t know anything.”
Over the years, John has had several chairs. Looking back, he says that his chairs have tended to last a long time. As was typical in those days, John’s first chair “weighed a ton…. It was indestructible.” In fact, he used it for more than 12 years. Overall, John has been satisfied with his chairs and “even with the heavier, clunkier type of chair,” he always did what he wanted to do. He observes that, “It might have taken more energy, but it didn’t prevent me from doing things.” Recently, he got a new chair. John likes today’s lighter weight models and says that because he “is a lot older now the weight does bother me. So the lighter weight is a great, great help.”
John believes that a power chair would be easier to manage and would likely enable him to function more efficiently. However, he has opted to use a manual chair because he is not willing to “give up being able to just throw the chair in a car or taxi cab and just drive off … there’s always a trade-off.”
For John, cushions have been an ongoing issue and have become “more so in the last seven or eight years.” Because he had sensation throughout his body and he was able to shift his weight to relieve pressure, John chose not to use a cushion for seven years after his initial rehabilitation.
Over the years, John’s needs have continued to change. He is getting older and he says, “It just hurts more so I have to get cushions [that are] more comfortable…. I started using a one-inch cushion. And then I started using a thicker cushion. And about that time, I started having to think a little about the actual configuration [of the cushion].” John’s present cushion is contoured and is made of high-density foam. He got it eight years ago and since “it still works,” he transferred it into his newest chair.
Discovering hand controls and learning to drive was a liberating experience for John. In his words, “I don’t think anybody realizes how limited you are if you have to depend on other people. No matter how much they love you, no matter how much they’re willing to sacrifice for you. How limited your life is without being able to get around.”
For several years after his accident, John did not drive because he “didn’t think it could be done safely.” Through a friend, he got the opportunity to try a car with hand controls. John discovered that he was able to drive and, once he was satisfied that he could do so safely, he got his driver’s license. He bought an “old station wagon and put hand controls on it.” John knew about hand controls from magazine ads. Since he had also met the local vendor during his stay at the spinal cord injury centre, he purchased his first set of hand controls from him.
Over the years, John has owned several vehicles including a van with a lift in the early 1970s. He sought and received funding for the van but had no input into its selection. In fact, John was told that he “wouldn’t know what to buy anyway.” Today, the process would be quite different. Through magazine articles, networking and his involvement with a national advocacy group, John is aware of “what’s on the market … what they cost … what the features are.”
John kept this van for two and a half years before deciding to sell it and go back to using a car. His decision was based on the continuous mechanical difficulties he had with the van’s lift. Convinced that it was “flawed,” he says that this lift nearly “killed me a number of times…. Technology was cruder in those days.” With most van lifts, the door opens and the lift comes down. But with this particular lift, “the whole door came down and it was the lift…. It was impressive looking, but it didn’t work worth a darn.”
The lift had a remote control that was difficult for John to operate. It didn’t “stop automatically when it came up level to the floor of the van. It would just keep going unless you punched another button on the remote control at just the right time.” Due to his spasticity, this degree of dexterity and co-ordination was difficult for John and he says, “Most of the time it just threw me into the van … wheelchair and all.” At other times, the lift would stop working with John on it, leaving him stranded. He’d have to wait for “somebody to come by” and offer assistance.
He thought that the problems with the lift were his “fault” and that he wasn’t “proficient enough.” Refusing to give in, John persevered for a long time. He says he was younger and was able to “survive those blows. I was so happy when it did work that it didn’t bother me too much.” At that time in his life, he also considered the lift a novelty and it was “fun to have people look at it and go ‘wow.’” As well, he says he kept the van as long as he did because “it was somewhat less taxing … I moved around a lot in those days.”
Today, John owns an older two-door car with a wide door and uses hand controls to drive it. He transfers into the car through the passenger side, both because the steering wheel gets in the way and because the left side of his body is stronger than the right. John gets himself into the passenger seat and, using the power seat adjustment, he moves the seat forward. Then, he says, “I reach down and pick up the front end … and put it on the edge of the car, and reach back and pull the whole thing in,” stowing his chair in the back of the car.
John has not replaced this vehicle because he believes the doors on today’s models are too narrow for him to manage his transfers. In anticipating the “final death” of his current car, John says that a minivan with a lift would be an ideal next vehicle. However, he has “resisted buying one of those minivans with the lifts.” While he likes the way they look and drive, he cannot afford the high conversion cost. He has also made a conscious decision to “minimize the gadgetry … simply because every time you have a gadget, it’s likely to break down.” Therefore, because of the cost of van modifications and the flexibility a car affords him, John plans to buy another car when the time comes.
Several years ago, John became “fascinated” by computers and spent a lot of time “looking at them.” He bought his first computer in 1992 when he was still working. John does not consider his computer an assistive device and says, “I didn’t have to have it. I just wanted it…. I’ve talked about avoiding gadgets, but at the same time I’m a lover of gadgets.” Prior to his retirement, John’s computer, fax machine and scanner enabled him to work at home when he chose to. Now, this technology allows him to remain connected through faxes and emails as he continues his volunteer work with a national advocacy group.
John uses the computer for all of his writing needs “because it’s just easier.… And it’s legible when it comes out.” He says that his handwriting has always been “messy” and that he “could have used the word processor even before [he] got hurt.”
John accesses the computer by placing his conventional keyboard on his right side and using a trackball rather than a mouse. He types using one finger and says that although it “wouldn’t get me a job typing … it’s effective.”
John was injured 45 years ago. Several months into his recovery, when he was experiencing severe spasticity, his doctor recommended a “really radical [brain] surgery.” When he asked for information about how this procedure would help reduce his spasms, John says that the doctor’s response was simply that “I wouldn’t understand. And immediately we ceased to communicate.” He recalls that it was then that he realized he had to take control. John says, “I couldn’t just turn my body over to professionals.” With this in mind, and the belief that the risks were too great, John opted not to go through with the surgery and he has had no regrets about this decision. The memory of this experience has remained with John throughout the years, changing his attitude and making him “very assertive.”
One of the most important lessons John has learned is that “there’s always a trade-off.” He believes that it’s important “to keep your eye on the ball of change, whether it’s a change in yourself or technology” and to stay updated and knowledgeable about assistive devices, and then “make the best trade you can.”
When considering new technology, John also wants to feel confident that the “bugs” have been worked out and that the price is reasonable. His advice is to “look and see what other people are doing … see what their experience has been … and make sure it’s something you want and need.”
In the years since his injury, John has seen a lot of changes in assistive technology. For him, the process of addressing his changing needs and making informed decisions is not much different today as it was in the past. The main difference, he says, is that now there are more products from which to choose. Along with other consumers, John has relied on rehab
professionals in selecting assistive devices. He says that they “are trained to do evaluations and know what products are out there…. I think it’s important to listen to them but make your own decision.”
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