A lot has changed since Paul was injured 49 years ago. Along with changes in his physical functioning, he has also experienced changes in his perceptions and attitudes towards his disability, and the assistive technology he uses. Paul describes himself as “stubborn” and “vain” and seeks assistive devices that will promote his independence and allow him to not look like an “invalid.”
Over the years, Paul has learned a great deal about his needs and has become proficient at making decisions about assistive devices. He has come to “resent” it when “non-disabled people” presume to know more about a product than he does. While Paul respects and looks to professionals for their “expertise,” he believes that the most honest, informed advice about assistive technology comes from fellow consumers.
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When he was injured in 1952, Paul says it was a time when “it was generally thought by the public and rehabilitation personnel … [that the] worst thing that could happen to a person was to wind up in a wheelchair.” With this as the prevailing thought, Paul’s rehab goal was simply to walk again. He recalls that at the time, “there was no rush to get out of the hospital … I spent as much as four hours a day in therapy treatments.” Paul says, “I have to laugh at it today, but I can’t stand people with religious ideas who come up and want to touch me. They don’t do that so much anymore, but in those years they would do that and they would imply if you had the guts or the determination, you can conquer your disability.”
Paul recalls that after his injury, he lived in the hospital on and off for six years for financial reasons. He was separated from his first wife at the time and says that he had “loving parents, good parents … but once you’ve left home, got married and started your own family, you can’t go back home.” Paul adds, “Parents have a tendency to overprotect the handicapped person because of love.” While he understood that, Paul felt that he needed to be on his own. For him, it was “move out or die.”
Through a personal contact, Paul was able to secure an accessible, subsidized apartment. One of his fellow residents at the apartment complex was a retired man who had worked for the State Department. The two became involved with a national advocacy group and together their job was “to get 80 places of business somewhat accessible by ramps and that sort of thing.… We were responsible, in 1972, for causing thirteen legislative bills to be dropped into the hopper of which nine were passed and signed into law.”
Over the years, Paul became very involved with the organization and was elected President of the Chapter in 1976. He says that he and his colleague continued their legislative and advocacy efforts. Over the next 15 years, Paul held several top-level positions within this organization, and retired in 1991 at the age of 67 because he was physically unable to continue working.
Unable to manage with crutches alone, Paul initially alternated between crutches and a manual wheelchair. He says that with his crutches, “I could hobble four to six blocks maximum. But I would be exhausted … all I could do was lay down for a couple of hours afterwards to recuperate.” Paul recalls that, in spite of how physically taxing it was for him, he continued to use crutches because of the expectation that he persevere and not give up. Paul reflects, “That was the philosophy that caused me to exert myself. And then after I fell and had to go back into the hospital I literally threw the crutches away and said, ‘They’re not for me’ and so I just started using a wheelchair.”
Paul used a manual chair for 31 years. Although he preferred it to a power chair, using a manual chair was difficult. In fact, he recalls that when he was working and still using a manual chair, “if the meetings were too far from the parking lot, I found excuses not to go.” Eventually, the strain of pushing a manual chair took its toll on Paul’s shoulder. After two surgeries on his rotator cuff, he began using a power chair. Although Paul resisted the idea of a power chair for a long time, he realized that he had to respond to his new situation. He says, “I’m pretty vain … I always associated a power chair with being an invalid…. I got over the feeling of being an invalid in a power chair.” In fact, once he started using a power chair, he discovered that he felt “more productive.”
Paul has used a power chair since 1982. Due to severe back pain and skin breakdown, he needed to get a larger chair with tilt and recline features about two years ago. These features allow him to change his body position periodically, transferring his weight and helping with his circulation. While Paul acknowledges that his back feels better in his new chair, and that tilt and recline help to reduce the pain, he says, “I hate it with a passion. This chair fits me better, but it’s clumsy. I can’t drive from it where I can drive from [the other] wheelchair. And I bump into more things in the house.” Paul prefers his previous chair and, in spite of the benefits his new chair offers, he believes he has paid a price in terms of manoeuvrability and accessibility.
Paul feels more comfortable in his older chair, which is smaller and set lower to the ground. He still uses it, but due mainly to his back pain, he has to limit the amount of time he spends in this chair. Paul uses his older chair when driving his van and, in particular, he likes to use it in the spring and summer. “I grow trees and I like to putter around outside as a hobby.” Paul says that with this older chair, he “can touch the ground and pick up things on the floor.”
Over the years, Paul has had a number of chairs. On average, he has replaced them every four or five years. Paul says, “There was only two manufacturers and some choices in the ‘70s. Most of the real choices came about in the ‘80s.” With even more options today, Paul has learned a great deal about the features he needs as well as the selection process itself.
To ensure that he has access to the services he needs, Paul has always felt more comfortable living in close proximity to a spinal cord injury centre. When researching assistive devices, Paul seeks the advice of his colleagues, consumers and rehab specialists. While he respects therapists and other rehab professionals, in his experience, the most honest and useful information comes from those who have a disability and are consumers of assistive technology. Paul adds, “I know what I want and I’m stubborn … I resent the fact when nondisabled people seem to know, or think they know, more than I do about a product. When I get ready to make a purchase, I usually have studied it out pretty good.” Paul considers his options carefully, taking his time to make sure that his choice will meet his needs.
Paul’s primary concern is that the product is functional and easy to use. He wants to be sure that it will make his life easier and that it will enable him to “accomplish more.” For Paul, cost is also an important consideration. He receives some financial assistance for assistive devices through the Veterans Administration (VA) as well as his wife’s insurance. However, he says, “If I’m going to lay out three, four, five hundred dollars, I can’t make a mistake.”
Two other important factors for Paul are the vendors themselves and their commitment to maintenance. He believes that the vendor makes “all the difference in the world and if they don’t give me the time of day, the hell with them. I’ll go to somebody that can accommodate my needs.” Paul also wants to feel confident that the vendor employs “knowledgeable people who can measure you for a wheelchair.” With regard to maintenance, he says, “I’m a little bit rough on a wheelchair … I don’t pay too much attention to the terrain … I just go.” Therefore, he wants to know that the vendor carries the parts and is able to repair his chair or other device.
Equally important to Paul is the appearance of his wheelchair. He says he “wants it to be as small and unobtrusive as possible.”
Over the years, age and weight have affected Paul’s physical independence. In order to make life easier for both his wife and himself, he hired an attendant about five years ago. Now, his attendant helps him six mornings each week and his wife helps him to get to bed at night.
Paul recently started using a lift to assist with his transfers. He says, “It became necessary for me to start thinking of a lift device for a number of reasons. I had gotten heavier. That was the main reason. Secondly, when my wife was assisting me I was scraping my skin. And it was overtaxing my wife.”
Initially, Paul wanted a lift with a track on the ceiling. In addition to being expensive, he says, “It had to be installed in my house and there was no dealer here.” He was able to locate a vendor, but the installation fee increased the total cost even further. He was eligible for assistance from the VA, but the doctor was concerned about Paul’s choice for safety reasons. Paul thought that was “baloney” and, convinced that cost was the real issue, he agreed to be “accommodating.” He recalls meeting with “the occupational therapist and it became apparent that I could get a portable model with wheels right away with no effort, no thoughts. So I let them off the hook and settled.”
He says that the manufacturer of the floor model had been around for a long time and this was “the latest design … it works much easier. Plus, it’s an electric one.” Paul had avoided getting a lift for over a year and now is glad to have one. It has made transfers much easier for him and those who help him.
Three years ago, Paul and his wife bought some property and modified an existing floor plan, to make it wheelchair accessible. The new features include: a sidewalk outside, fire exits, a solarium, special flooring and an easy chair with an air-mattress overlay.
Paul’s house has a sidewalk all around it and this allows for easy access in and out.
Paul has taken fire safety into account by incorporating an exit from the master bedroom and another from the dining room.
Paul and his wife recently added a solarium, which was built at the same level as the inside of the house, allowing for easy access.
Paul chose tile flooring because, unlike carpeting, his wheelchair does not leave tracks on tile. Because he is often cold, Paul also added “radiant heat” into the floor.
Paul has had a roll-in shower for as long as he can remember. He transfers into his commode chair and wheels into the shower.
Paul has a custom-built table which “eliminates the apron” on one side. This enables him to get in underneath the table without hitting his knees.
Paul has had an easy chair recliner for many years, but his current one has some additional useful features. He says, this chair is motorized and “will raise me up to a three-quarter standing position. This enables my wife to just grab my belt buckle and swing me over into the wheelchair.” This chair also allows Paul to elevate his feet, which controls the edema in his left leg. Recently, he bought an air mattress and he uses it on top of the chair as an overlay for added comfort.
He uses the easy chair “in the evening especially if I want to watch TV. You get in that and a half hour later, you’re pretty relaxed … I spend a lot of sleep hours in that thing.”
For Paul, driving was the biggest incentive during the rehab process. He believes that “without wheels, you’re going no place.” Paul says, “Public transportation, even in the best cities, is only from point A to point B. It doesn’t go sideways … you’re not independent without an automobile.”
Until his shoulder replacement in 1982, Paul drove a car with hand controls. “I had to give up the automobile and purchase a van. I still dislike vans. They ride like a truck. You get 12 miles to the gallon … they’re extremely expensive to operate.” Paul uses a full-size van with a lift. When he bought his first van, he was still able to transfer into the power driver’s seat. Paul says, “I still prefer to drive from the power seat. I sat at the proper height and everything was more stable, more pleasurable.” Because Paul can no longer transfer into the driver’s seat, he has had the floor of the van lowered six inches and even with the lowered floor, he has to use his older (smaller) wheelchair in order to drive. “This new wheelchair is too big. It won’t fit … the pedals get in the way of the brakes…. You just can’t use this one.”
Paul likes a specific hand control because, he says, “It’s smoother operating and I’ve used them all my life.” He says that this hand control system requires “about four or five hours to install.” While others are more profitable to vendors because they are easier and faster to install, he insists on this particular system. Paul says, “I’m difficult … I’m pretty stubborn…. On this van, it amounted to either this guy put in the control that I wanted, or I was going to another vendor.”
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Paul believes that, “The average newly injured person doesn’t have the option because he doesn’t know it exists and doesn’t always know how to demand what he wants.” When making decisions about assistive technology, he encourages consumers to “ask your friends who are handicapped.” He observes that, “The biggest mistake most handicapped people make is they hesitate to ask their buddies who are using this equipment…. I don’t know why they do this because their buddies are happy to tell them what their experience is.”
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