Martin was injured at the age of 13 and spent the next seven years of his life in a pediatric rehab facility. For him, this was generally a positive experience. He says he learned by watching others, and was motivated by the professionals who pushed and encouraged him to reach his full potential. Martin observes that, “Today, they just give you things. Not teach you how to use them … or give you the education to be able to modify things for yourself.” Martin has lived on his own for many years now. He has a degree in business administration and works as an information technology specialist for the federal government.
Martin’s philosophy is that, “disability is not inability, but only an ability to do things differently.” Using his communication and advocacy skills, he actively pursues information not only from other consumers, but also from vendors, manufacturers and service providers. He tries to learn and understand both the nature of their work and the way they think. This approach enables him to deal strategically with the “system” and allows him to meet his day-to-day needs through “creative, innovative” and sometimes simple, low-tech solutions to everyday problems.
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Over the years, Martin has had about ten power wheelchairs. His experiences dealing with funders and wheelchair vendors have taught him that he needs to be very logical and straightforward in his dealings with them, but also very assertive. Although Martin drives his chairs “into the ground,” he has always maintained them well, and he has made it his business to understand wheelchairs thoroughly. This knowledge has been put to the test on more than one occasion.
Securing funding for his current chair required Martin’s research and advocacy skills. Because his preferred chair was an expensive, high-end model, Medicaid would not pay for it. Martin refused to give in and accept their decision. Rather than using the “quality of life” argument to justify the purchase, he opted to present a simple, logical rationale for his choice. Martin researched this particular chair thoroughly by talking to others who use it. He also contacted vendors and called the manufacturer to inquire about the chair’s service record. In presenting his case to Medicaid, he pointed out: his previous chair’s poor service record; the fact that he had not gotten a new chair for eight years in part because of his commitment to maintenance; and the fact that he now required “a certain function” the other chair didn’t have. Martin was able to convince Medicaid that this was the right choice, and he got his chair.
Martin’s straightforward approach has also served him well when he has had to deal with technical problems with his wheelchairs. On one occasion, he had to do battle with a vendor after going out in the snow with a brand-new, $17,000 chair, which suddenly stopped working. Martin called the vendor who blamed the problem on him. After doing a little investigating, Martin discovered that the chair had short-circuited because there was a plug underneath the chair that the manufacturer had left uncapped. He believes that the manufacturer “knew that if water got into it, it would short circuit out the chair.” Martin questioned his ability to use the chair in the rain and says, “Their thinking was so outrageous, and the thing is they’re thinking that I am stupid—that I don’t know what’s going on. They’re just trying to get out of it … and they know it was their fault. They tried to convince me that they’re going to charge me for the part.” At one point, Martin threatened the vendor with bad publicity and believes, “If you don’t get any action, you advocate.” Eventually, the vendor agreed to replace the part free of charge.
Traditional seating systems were not working for Martin. He used air cushions but after a long day “sitting was a pain.” Each time he got a new cushion, he believed that it would work and says, “You don’t know it’s going to be a disaster … you’ve got to be creative and innovative.” So, how did Martin deal with his seating problem? He thought, “If you have a waterbed and you have an air mattress, which is more comfortable? Logically thinking, water is.” Therefore, instead of filling the cushion with air, Martin fills his with water. Rather than purchasing his cushions from medical suppliers or vendors, he buys them for much less through an alternate source. The cushion is rubber and he covers it with plastic in order to avoid leakage problems. He then adds a soft lamb’s wool cover for added comfort. He’s been doing this for years with good results.
Chairs and seating are very important to Martin’s health and independence. His advice in selecting these items is simply to look at all the options and put funding restrictions aside. For Martin, this is a “hot issue” because when funding sources sense that the individual is inexperienced, “they don’t think you know what you’re talking about. They’re the experts.” He disagrees and says, “You know your own body better than anybody…. You’ve got to try as much different stuff as possible…. Forget the fact that they’re going to pay because … you may not be able to sit in it or [use] it and then you end up with sores, then you’re in bed and what’s the sense of having it?”
As a teenager, Martin’s dream was to drive. During the 1970s, getting a license was no easy task though. At the time, the “system” was set up in such a way that Martin was placed in a Catch-22 situation. He needed a modified vehicle in order to take his driver’s test, but he was unable to get funding for a modified vehicle without his license. Martin managed to successfully negotiate through the bureaucracy by buying a van and convincing the state-sponsored vocational program to have him evaluated. The evaluation was conducted by an independent physical therapist and an occupational therapist. Both confirmed that Martin would be able to drive. The state vocational program agreed to modify the van with hand controls and a lift, and he was then able to take the road test and get his license.
Martin recalls that this van “really fit” him well. He had it for five years, but due to a mechanical defect, he got into an accident and the van was a write-off.
Eventually, Martin purchased a second van. This time, the modification process was less successful. Martin says, “I couldn’t drive it from day one.” In hindsight, Martin realizes that the vendor was not what he needed. Although he had purchased the same model van, the set-up was different from the previous one. Funding allowed for a specific hand control system and he later discovered he was unable to use it. Martin explains that, “I had a handle that goes on the steering wheel. And a left gas and brake…. The controls were so wedged in my hand, there was not even room to do the gas and brake.” Also, his positioning in the van put him “too far forward” to use the controls effectively. “I tried having changes made to it, I spent more money on it. But it still never got to where I could do it. And the changes I wanted and the equipment I wanted that would enable me to drive, the state vocational program wouldn’t pay for it.”
Due to the fact that he “didn’t trust the equipment,” Martin decided to quit driving. Now he has another van and others drive it for him. Being able to drive was very important to Martin who says, “It was freedom. It was freedom like I never had before. I had the freedom to go on an adventure. Explore different parts of the countryside. I do that now in my chair, but I’m limited.”
Martin managed the writing demands of school by using a tape recorder along with his classmates’ photocopied notes and his memory. He used a tape recorder during classes, editing the tapes during class by turning the tape recorder on and off to capture only the information he considered important. Later, he would review the tapes and compare them with the handwritten notes. He also used the tape recorder to dictate his exams and later have them transcribed.
Martin became interested in computers many years ago. Because his job at the time required a lot of paperwork, he bought a home computer so he could learn more about them. Concerned about efficiency, he saw the computer as a way of producing more work with less effort. Initially, his workplace provided one computer to which everyone in his department had access. At the time, there was no mouse and Martin accessed the keyboard using one finger. He says, “I could do it better than most people because I learned how to do it with shortcut keys…. I designed my own macros to do the things I wanted to do quicker…. I was using a lot of the functions. I understood how to apply it. I guess when you’re in a wheelchair, your mind is always set on problem solving.”
Because of his interest and skills in the area of software applications and programming, Martin eventually transferred into the IT department. Now, his job is to provide support to employees and this requires him to be familiar with a wide range of applications. Martin prefers to minimize his use of adaptive technology and manages the demands of his job with few accommodations. He says that all he needs when assisting an employee is it to get close enough to the keyboard.
For his writing needs both at home and at work, Martin now uses speech recognition software. Prior to the introduction of speech recognition, Martin was a one-finger typist. Because of the limited use of his hands, he often hit the wrong keys and made a lot of mistakes. Although it was the best option at the time, this method was both time-consuming and tiring.
Martin didn’t like the early speech recognition products and waited several years for an effective version to come out. He believes that technology has come a long way. With the use of dictation and the read-back feature of his current speech input system, as well as other conventional features, Martin has come to feel “more productive … and at an equal level with other employees.” However, he does not have the latest speech recognition product, and his advice to users of speech input is not to rush out and buy new versions because “the newest is not always the greatest.” However, he does emphasize the importance of having the fastest computer possible, in order to get the best use of speech recognition software.
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In general, Martin prefers simple, low-tech solutions to everyday problems. His rationale is that, “The more adaptive equipment you depend on … the more you rely on it. I try not to rely on adaptive equipment. Because it’s not going to be with you. It will break or be lost.” Martin does not go without, but he would rather modify items using common, household objects he usually finds in hardware stores. He stresses the importance of thinking unconventionally and looking “at stuff not for what it does, but for what it could do.”
For example, a simple curtain hook and a U-clamp become a key holder. Mounted on the side of his chair, the curtain hook holds the U-clamp with a bolt running through it, which holds his keys. With this hook, Martin is able to access his keys independently. Martin only needed to make sure that the U-clamp was heavy enough to remain on his chair when going over bumps.
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Similarly, a plastic bag with handles enables Martin to pick things up from the floor. And a pair of surgical clamps allows him to pull up his pants, hold cards, and retrieve things he would otherwise be unable to.
Martin has modified his toilet so that it’s set higher and is easier for him to transfer onto. Rather than a wheel-in shower, he has a tub with a lift mounted to the side. Because of the tub lift, Martin has the option of taking a shower using his shower chair, or being lowered into the tub and having a bath. He found out about this lift from a magazine he saw at a friend’s house; Martin liked it and bought it.
When Martin was growing up in the 1970s, there were few choices around assistive technology. As a teen living in an institution, all decisions about Martin’s care were made by rehab professionals. Through his experience at the rehab centre, Martin learned the skills he needed to manage on his own. Over the years, he has come to believe that having a disability does not necessarily mean compromise. He says, “Your mind set has to be different…. You have to think differently. Not the way everyone else thinks. And if you’re newly injured, you go through a mind change of changing your perspective on things. What you value and what you pursue is different, but don’t stop pursuing it.”
Martin believes that communication and information are important in helping him meet both his day-to-day and broader needs and says, “You can’t have an attitude that the world owes me something and I deserve it.” In order to successfully advocate for himself, Martin has consciously devoted a lot of time to learning from service providers and educating himself about the “system” and how it works. Martin’s understanding of bureaucracy has taught him to adopt a problem-solving approach, enabling him to seek and find both low-tech and high-tech solutions to everyday problems.
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