Steve’s injury occurred while on active duty in the military. Because he was never fully informed of his eligibility and funding rights at the time of his accident, it was several years before he began to understand the “system.” Eventually, Steve began to learn more about assistive technology and funding, and has become determined to seek out and even “fight” for devices to which he is entitled and which will improve the quality of his life. In making informed decisions about assistive technology, Steve researches his options and works with rehab professionals before making the final decision himself. In his work with a national advocacy group, Steve now helps others learn about the various funding systems and encourages them to advocate for their own needs. In his words, “Don’t bilk the system but if you need something, by all means let them know you need it.”
For a long time after his accident, Steve felt “isolated and withdrawn.” This all changed two years later when he saw a racing chair for the first time. It was the “weirdest contraption” he had ever seen, and Steve says it made him realize that “Just because I was sitting in a wheelchair, I didn’t need to be sedentary.” Since then, Steve has participated in sports he thought he could no longer do. Physical activity has always been important to him and this has influenced many of his choices around assistive technology.
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“Go in as an informed client … be open to their [professionals’] suggestions, but ultimately it’s up to me because it’s my body.”
“The more involved you become in yourself and your needs, the better off you are.”
“If you don’t push yourself, nobody else will.”
In the 16 years since his accident, Steve has gone through several manual chairs. Unaware of his needs and rights as a service-connected veteran, Steve initially accepted what he was given by the Veterans Administration (VA) or prescribed by OTs. His increasingly active lifestyle presented a unique challenge to rehab professionals who, in the mid-1980s, were “not accustomed to dealing with people who wanted to get involved in sports.” Therefore, in order to meet his specific needs, Steve found it necessary to be proactive with rehab specialists and funding sources when purchasing chairs and other items of this nature.
Steve’s first chair following his injury was the used one he was issued upon discharge from the VA Hospital. He believes that this chair was unsuitable and says, “It slowed me down. Had I had a chair that was designed specifically for me, my rehab would have been a little faster.” At the time, Steve was unaware of his right to a custom chair. So, he thought this chair was “God’s gift” and used it for several years. Eventually, it required parts and because the manufacturer had gone out of business, Steve was unable to have it repaired.
Through his involvement with other consumers, Steve eventually discovered that he was eligible for a new custom-fit chair. He familiarized himself with the various types and configurations of available chairs. Steve recalls, “I knew enough that I wanted a rigid frame chair to play sports because the folding chairs collapse and it slows you down. I also knew that it needed to be a lightweight chair.” For him, the lightweight chair was necessary both for ease of pushing and for lifting in and out of his van.
Steve says that his second chair had all the features he wanted. When getting this rigid frame chair, he remembers the rehab professionals saying, “’Well, you look like a sixteen.’ And they put me in the chair and said, ‘Hey, it fits great, go on home.’ I think that’s only because they were not accustomed to dealing with people who wanted to get involved with sports.” Although he was satisfied with this chair, it wasn’t until he got his next chair a few years later that Steve felt the comfort of a chair that fit properly.
Steve used his ill-fitting rigid chair for five years. When he became eligible for a replacement, he used his experience with his first three chairs, along with magazine research and trials at a seminar, to get a new chair with all of the features he needed, plus a proper fit. Steve approached the OT with the necessary information on his chair of choice. Convinced that this model would meet both his physical and recreational needs, he was prepared to negotiate and assert himself. By now, Steve had become aware of the various assistive devices he was eligible for and would make his life easier. A successful advocate, he had “gotten crutches, canes, grabbers and shower benches.” He recalls that the OT had concerns about this particular type of chair, but Steve insisted. This new folding chair had a shorter seat length and he felt it was a better fit overall. Steve was very satisfied with it.
Steve’s current chair is the same make and model. He had lost weight, but due to a sports injury that left him temporarily inactive, he subsequently gained weight and needed a new chair as a result. Again, he met with some resistance from the rehab professionals because his narrower chair was still fairly new. Aware that he was eligible for a new chair due to the change in his condition, Steve presented his case to the OT. He rationalizes, “If you’re too big for that chair and that tire constantly rubs on your leg or your hips, or the chair is too big and you get decubitus ulcers, they have to spend another forty to fifty thousand dollars taking care of that secondary condition [instead of issuing] you another chair for three thousand dollars … where’s the trade-off? It’s your health that you need to be more concerned about.”
Through the years, Steve has made many decisions about wheelchairs. His choices have not been based on a “whim” but on a clear understanding of his needs, the options available to him, and his funding eligibility. Using a variety of resources including his network of peers and professionals, magazines, seminars and the Internet, Steve explores the possibilities and goes after what he believes he needs and will work for him. When making these important decisions, he considers the advice of rehab professionals along with his own research and experiences. However, he says, “Ultimately it’s up to me because it’s my body.”
Video:
See Steve load his wheelchair into the back of his truck with the truck’s built in lift. Choose a format: |
After his accident, Steve and his wife acquired sports cars. Because he is able to walk and transfer into a car, they would secure his chair to the vehicle using a chair or bicycle rack. This worked for a few months. Then they lost the chair on two occasions while driving.
Shortly after his injury, Steve received assistance from the VA to purchase a used, unconverted cargo van. Until he moved to his current residence, he had no idea that wheelchair lifts and hand controls existed. In fact, Steve drove the van for four years using a cane with a rubber tip to access the gas and brake pedals.
Steve has owned a number of different types of vehicles since then. At one time, he used to lift his chair in and out of a truck. This became difficult and Steve began to worry about the physical toll of doing this “five or six times a day.” In his words, “The technology is there. Why should I beat myself into the ground? I’m only 40 years old and if I have another 25 years left in me, I’m not going to be able to move.”
In order to accommodate his changing needs and to minimize wear and tear on his body, he now has a 4x4 pick-up truck with an electric wheelchair lift that he can operate with a remote control. He begins the process by getting out of his chair and into the truck. To do this, he picks up one leg and places it inside the truck. Then, he grabs the steering wheel and pulls himself in using the armrest to drag himself along until his other leg is inside. Once inside, he begins the process of mechanically stowing his chair. The truck is equipped with a camper shell that opens sideways. As it opens, an arm unfolds from the back of the truck and extends toward the driver’s side. This arm has a chain and lift mechanism, which Steve attaches to the seat of his rigid frame chair. Using the remote control, he directs the lift to pick up the chair and place it in the back of the truck. The arm then folds away and the lid shuts on the camper shell.
Steve has had hand controls on his vehicles for the last several years. As with most other assistive devices, he discovered this technology through contact with peers at the advocacy group. He was given the names of the two vendors that the VA dealt with on a regular basis, and he chose the one who could give him his “independence now.” With only two vendors in the area, Steve has “learned a lot about how they do business … who they employ … who is dependable … and who will go the extra mile for you…. If they take shortcuts … it could cost you your life down the road.”
Steve chose a 4x4 because it can handle rough terrain. This vehicle allows him to go wherever he wants, whether it’s deer hunting in the woods or skiing in the mountains. This gives him a sense of freedom and independence that he couldn’t have if he had to rely on the local paratransit system. Steve believes that being able to drive allows him to work.
For a long time after his accident, Steve’s perception of having a disability amounted to living like a “recluse.” He says he believed that he would “sit home and watch TV and eat a dinner that a loved one or an attendant made.” However, after seeing that first racing chair, Steve realized that he “could get out and become more involved.” With this in mind, he discovered hunting and later, wheelchair racing, basketball and skiing.
Through networking, Steve got a pistol license. On the shooting range, he experimented with different ways to accommodate the weakness in his upper body. He used common, everyday items such as bipods, tripods, and ski poles. Now he is able to enjoy hunting with his sons or alone if he chooses.
Steve started out with a sit-ski. He recalls it was like sitting all zipped up in a “bathtub” with his feet extended. He was tethered to a specially trained instructor who held two ropes attached to the back of Steve’s ski, helping him slow down or stop.
With too much physical ability for the sit-ski, Steve progressed to the bi-ski and then the mono-ski. The bi-ski and mono-ski both feature a bucket seat similar to a wheelchair in which the skier sits with feet extended, however, the mono-ski has only one ski. The first time Steve tried the mono-ski, he was placed in a racing ski that was too long. As a result, he had an accident and broke his elbow. Steve was tethered and used outriggers and short ski poles similar to Canadian crutches (forearm crutches). He didn’t have enough upper body control, however, to maintain his balance when his outriggers got caught in a hole in the snow. He recalls that the impact “jammed my hand back into my bicep and that took care of skiing for the week.” Actually, Steve was unable to ski for the rest of the season, but he attempted the mono-ski again the following year. This time, he went to a manufacturer’s clinic where he tried and found a model that worked for him. After a second accident, however, Steve decided to give up skiing.
When Steve first got a computer in 1990, he spent many hours playing with it, learning to use it. He is able to write by hand with some difficulty but his writing is not as legible as it was prior to his accident. Steve prefers to type and due to the level of his injury, he types with two fingers.
He has a speech recognition system, which he finds “exasperating.” Steve expected to be able to use this system just like a tape recorder. But because he has not had the time to train it, he finds that “the reality is that you get one sentence done and you wind up having three or four words that aren’t correct and you have to go back and the training process is … just horrible. I don’t like it.” Steve believes that speech recognition could help him manage his workload better but for now, typing with two fingers is still a lot easier and faster for him.
Video:
See Steve’s dog pick up a pen from the floor. Choose a format: |
Steve also has a service dog. Along with being “emotionally comforting,” she makes his life easier and allows him “to gain that little sense of independence.” The dog saves Steve the effort of having to pick things up, and she is able to turn lights on and off and open doors. She also pulls Steve along for distances when he gets tired, which means that his wife and children don’t have to push him.
Steve found out about service dogs from magazine articles and watching public television programs. He understands that there are lots of trainers and dogs out there, but not enough to meet the demand. The dog has to be intelligent and compatible with the social needs of its owner, and it can take as long as one or two years to find a match. For Steve, it’s been worth it.
Over the years, Steve has come to believe that meeting your needs sometimes requires that you “fight for yourself.” He recognizes that this is difficult, particularly during the initial aftermath of an injury when there is so much to consider and take in. But “it doesn’t mean that your mind doesn’t work … go with what you know.” Although difficult at first, Steve gradually took control. His self-awareness and willingness to take responsibility for his decisions have enabled him to successfully challenge the “system” over and over again. Through it all, he has learned three important lessons.
First, Steve believes that he knows his body better than anyone. He urges people to “make sure you don’t let somebody else convince you of something that you need.”
Second, in Steve’s experience, funding sources have a tendency to try to convince you that the assistive devices you already have are sufficient to meet your needs, even when they’re not. When exploring his options and making decisions about assistive devices, Steve has always asked a lot of questions about the specific items recommended by rehab professionals. “Don’t be afraid to ask questions … the only stupid question is the one that you don’t ask, especially if it concerns your health and your physical well-being.” For Steve, it’s important to understand the motives behind the suggestions. “Is it a monetary thing, or are they looking out for my best interest?”
Finally, Steve has learned the value of being an informed consumer. In general, he believes it is important to keep an open mind and to consider your own research along with professional advice. Steve values professional opinions and says that at times, they know best. However, he adds that, “ultimately it’s up to me because it’s my body.”
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