For Jason, the transition from walking with crutches to using a manual wheelchair was a particularly difficult one to make. He says that as a society, “we identify so much with standing up.” Following a second accident, Jason was diagnosed with syringomyelia and Arnold-Chiari malformation, degenerative conditions sometimes associated with spinal cord injury, which affect strength and motor function. In spite of his efforts to continue walking, Jason was unable to manage. Reluctantly, he made the decision to begin using a manual wheelchair, and later, a power chair.
Over the years, Jason has met the challenges of his disability head-on. Today, he strives to balance a job, a regular exercise routine, volunteer work and interests such as painting. In order to continue meeting his changing physical needs, he has had to become skilled in dealing with an increasingly complex bureaucracy. Like so many others, Jason has learned to assert himself and go after the assistive devices he needs to maintain the quality of his life. Along the way, Jason has come to believe that, “You’ve got to be tenacious, you’ve got to rattle the cages.”
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Following his first injury in 1979, Jason was able to walk using a cane. Two years later, he was involved in a car accident that resulted in a severe injury to his right leg and over the next several years, he needed to use two crutches. In 1987, Jason was diagnosed with syringomyelia and says that his condition continued to deteriorate. He recalls that eventually it became “too difficult staying on two crutches … I was even developing shoulder injuries … I mean I’d fall down a lot.”
Jason remembers resisting the idea of a wheelchair and continuing to persevere with his crutches. “If someone would recommend a chair, I would look at them like they were Benedict Arnold or something.” He tried to reassure everyone around him that he would walk again and says that the general public opinion at the time was, “If you’re in a chair … it’s like well you’ve given up, you’re now less.” Jason eventually made the decision to stop struggling and begin using a manual chair and says that once the decision was made, “I noticed a lessening of the tension and anger level in myself.”
When Jason started using a manual chair, he went for an evaluation and was shown a variety of models. He says he was impressed by the selection, and the “high-tech approach was sort of validating, to say that disability is all right.” Jason was able to use his manual chair for about two years. During this time, however, it became increasingly difficult for him to manoeuvre the chair. Then, he was diagnosed with Arnold-Chiari malformation and because he was getting progressively weaker, it was recommended that he consider a power wheelchair. For Jason, the transition to a power chair was different from the move to a manual chair from crutches. He reflects that by then, “I was sick and tired of fighting. Because in a way, I was fighting myself. I got an electric chair, I get around … it’s much less of a hassle. My theory is that it’s a trade-off.”
Jason has had two power chairs. He had a lot of problems with the first one but he is happy with his current chair, which has a height adjustment feature. Recently, he has been considering a standing wheelchair. In addition to minimizing the risk of pressure sores, a standing chair would give him more independence, both at home and at work, by enabling him to reach things he couldn’t reach from a sitting position. It would also allow him to “address people in a standing position.” In order to get a standing chair, Jason says he has to lose weight. His current chair is several years old and once he has lost the required weight, he plans to pursue funding for the standing chair.
Jason says that, “transportation is a lynchpin to my independence. I get more control over my life.” He says he can’t rely on the local paratransit system and to be dependent on it would be “dismal.” Jason believes that the technology that allows him to drive is key to “a life that’s accessible. [Without it] I wouldn’t be working.”
Ongoing changes in Jason’s strength and motor function over the years have meant changes in his driving needs. When he started driving in the mid-1980s, a driving evaluation determined that he was able to drive a regular car with hand controls. At that time, he was still walking with crutches. He was able to get in the car and put the crutches underneath the back seat. When Jason progressed to a manual chair, he would store the wheelchair in the back. Eventually, he required a sliding board to get in but adds, “As that got more and more difficult, I had to transfer to a van.”
Jason started driving a van in 1989. He says it was a full-size van with a lift, and modified steering and brakes. He was used to driving a car and recalls having to get used to “a more cumbersome vehicle. A van is a lot less performance-oriented than a car.” Before replacing his second van in 1997, Jason went for another driving evaluation and discovered that his needs had changed again. Now, Jason uses “a small horizontal wheel with a whole new electronic gas and brake mechanism.” He uses a wheelchair lift to access the van and an automatic wheelchair tie-down system to secure his chair. The floor of the van was lowered. Jason chose to buy another full-size van because he feels safer having “a good sturdy vehicle around [him].”
At one time, Jason had an auto alarm that doubled as a remote starter. A technician at the alarm company modified the remote by hooking the lift up to it, allowing Jason to perform multiple functions from the one remote control. He says, “This came in handy in the winter. I would hit the button to start the motor. Hit another button to unlock the doors. And hit the third button to deploy the lift.”
This remote developed a short circuit and no longer works. Now Jason uses a separate, “more cumbersome” remote, similar to a garage door opener, to operate the door and the lift. Jason believes that an alarm is useful and recalls one icy winter day when, due to a mechanical problem with his chair, he got stuck outside in the cold. Jason explains, “I started hitting the alarm on my van and I kept hitting it. And then the neighbour came out and helped me. So the alarm basically saved my life.” Jason plans to get another alarm with a remote starter both because of the convenience and the sense of security it gives him.
Jason has been dealing with the “system” for a long time. He says, “I learned on the curve … by talking to people.” In his experience, getting funding for assistive devices is “part luck … sometimes you don’t have to say anything.” However, at other times he says that you have to fight to get what you need. He also says that dealing with an increasingly complex bureaucratic system is littered with obstacles and can be very frustrating. He was recently denied funding for another transfer lift and, because he hasn’t had time to follow up, he has been using his old one. Jason explains, “I had to get a doctor’s letter and then a physical therapist’s letter of recommendation. Those were both submitted. And it was denied because you’ve got to say the right words in the right order, I mean it’s pathetic.”
Jason believes that funding claims are routinely denied. In describing the process of getting a new chair, for instance, he explains, “I go to the vendor. We’d spec out the chair and then it would be submitted for prior approval. And there’s this habit with the bureaucrats up there … they kick out a lot … denials and referrals you know, because they don’t want to pay. And you’ve got to appeal it.”
In appealing a funding decision, it’s sometimes necessary to consider asking an advocate to intervene. Jason says that there are organizations that will match people with advocates and that sometimes it’s also necessary to contact the Attorney General’s Office. In fact, when Jason was having difficulty getting a shower chair, he contacted his Senator and Congressman but says, “They didn’t seem to be very effective … the bureaucracy’s gotten a little out of control. You’ve got to demonstrate how, by getting this piece of equipment, it will be more cost-effective than me being hospitalized. I mean you can mention quality of life, but there has to be some kind of buzzwords. I mean it’s just totally asinine. If I need wheelchair repairs, I’ve got to get a doctor’s prescription because the vendors want to have backup in case they’re denied. It’s like asking a teacher to give a recommendation on how to fix a pool.”
However, in spite of the bureaucracy and “hassles” Jason says he is “grateful” to live in a state where he’s been able to get what he needs. He compares himself to “disabled people in other states who are still under the poverty level or just not employed. It’s because … I think access to technology and what the general attitude is toward the disabled population.”
Jason says he’s always been an athlete. He started to work out more regularly after his injury when he started noticing the “degeneration” in his body. Jason says that he was in “really good shape” during college, but when he started working, he found he had less time to exercise. “It’s a trade-off … work, the necessary evil. It’s basically full-time for either.” Jason has been off work for a while now due to a pressure sore. When he was working, he exercised on a regular basis using the facilities at work. He also says that to “get to a maximized health … I don’t have the money … the body has to suffer and that’s a damned shame you know.”
Jason always wanted to paint and once he’d completed college, he took on the challenge to try it. He took some courses and did well. Jason paints with pastels and acrylics, and says he uses an extended lapboard “so I can slide the canvas closer or slide it away.” Jason also likes to draw and uses 600 grit sandpaper as the canvas “because it’s very coarse and catches the pigments. The pigments stick better and then I mix them together by stroking my fingers over it gently.”
Even though he gets wet and messy, painting and drawing are relaxing and peaceful activities that give Jason a sense of accomplishment. He says, “It’s a meditative thing … you’ve got to be alone for long periods of time and it just evolves.”
Jason uses a variety of common, everyday items to make his life easier and more comfortable.
Jason uses a headset to access the phone, both at work and at home, because it’s easier, less fatiguing and “frees up” his hands. He points out that several of his coworkers also use headsets “so that’s nothing to do with disability. But in my case, it makes it easier because of my disability.”
Jason started out with a double bed and later “graduated” to a queen-size hospital bed. This new bed is more comfortable and less confining. His legs no longer get caught in things and he is able to grab on to the rails.
Jason would like to be able to turn a lamp on and off. He says that he had a sound-activated switch but it “didn’t last very long. It was pretty cheap. I mean the idea is good, but it was just a chintzy piece of crap so they could make money on it.”
Because Jason has spent a lot of time in bed recently, he purchased a laptop computer through mail order so that he could “start doing something.” He is now able to type in bed by “stabilizing his right arm with a pillow.” He is the treasurer of the local chapter of a national advocacy group and with the laptop, he is able to do the finances for the organization as well as his own.
Because it is difficult for Jason to use scissors, his cordless beard and mustache trimmer “comes in handy.”
Jason has learned a lot from other people and believes in sharing his experiences. He says, “There’s a metamorphosis you go through when you become injured.” His volunteer work involves helping others through these changes so that they can lead as “fulfilling a life” as possible. Jason has a busy, demanding lifestyle and the ongoing physical changes he has experienced over the years have required changes in his assistive technology. Jason feels fortunate to live in an area where he has access to all kinds of assistive devices. However, in his continued efforts to get what he needs and maintain his quality of life, Jason has had to become proficient in managing a complex and often frustrating funding system.
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