Simon and his wife have not hesitated to take matters into their own hands when acquiring the equipment they need to live the kind of life they want. They undertook a major renovation soon after moving into their new home, and they took responsibility for a lot of the design and management of this project. Over the years, they have had many good people working on their behalf, and some less so. They have learned that they need to be smart consumers and discern quickly who is going to provide the type of service they expect. They have also demonstrated originality—they are not afraid of being unconventional in finding solutions to access problems.
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Simon switched from a manual chair to a power chair several years after rehab. He was going to college at the time, and he was finding that the two-hour commute on paratransit really limited his day. “When I had 8:00 classes, that meant leaving home at 6:00 in the morning and maybe not getting home till 8:00 at night. It didn't leave me any time to do work that I needed to do for college at home and eat and sleep.” Simon and his wife decided to move closer to the college to cut down on the paratransit time, “but I made the mistake of moving too close because [the paratransit service] wouldn't pick me up anymore because I was closer than their required distance limit. So I had to push myself to school in my manual chair and attend school all day, and push myself home.” At about that time, Simon was diagnosed with sleep apnea. He was getting a lot of muscle aches, even though he was fit and healthy. He was experiencing shortness of breath and sometimes fell asleep in class, something that had never happened to him before. “They said that my blood oxygen levels were going so low overnight that I wasn't having a chance to recover them during the day, and all the violent exercise of pushing a manual chair around all day, besides doing physical things demanded of me in my course, was depleting my oxygen levels even more.” Along with a breathing device for sleeping, Simon decided to get a power chair.
He has not looked back. “I don't know why people insist on using manual chairs. Even amongst disabled people there is a certain status and snobbery that happens. I met a guy who was a roommate of mine in [rehab] about my age…. I saw him a couple of years later…. He had the latest model sports ultra lightweight manual wheelchair, and I had my power chair. And he said, ‘Oh, I see you're in an electric chair.’ So I said, ‘Oh yeah, it’s great.’ And he said, ‘I don't need one of those yet,’ the idea being that I was less of a person…. So I asked him, ‘How many times have you burned your legs in the last little while trying to carry a cup of coffee between your knees?’ …. He said, ‘Oh well, only a couple of times.’ I said, ‘I don't have to worry about that. I don't need two hands to move my chair. I only need one. I can carry things. How much more convenient is that?’ He said, ‘Oh well, I'd rather have a manual chair.’ I said, ‘You know, that’s your preference. But to me it’s more energy-efficient and time-effective and basically all the costs-that-you-put-into-living effective to be able to move things.’”
To help illustrate the point, Simon explains that he learned to walk with forearm crutches in rehab: “I was able to walk a hundred metres on elbow crutches. But it was a useless skill. I eventually fell down and broke my ankle and couldn't do that anymore. During the six weeks that I couldn't put any weight on my ankle I stopped doing it. It was absolutely useless skills to me because I couldn't use my elbow crutches to go from my dining room to my kitchen to get myself a cup of coffee and take it back to my dining room.” Simon considers the real value in assistive technology is the “everyday little things that they make easier or possible.” He goes on to say, “And I don't care if it’s a stigma to have a power wheelchair…. I feel power wheelchairs should be made more attractive and more expressive with people’s personalities so that they could stop being a stigma.” However, at the same time Simon feels that the stigma goes deeper than aesthetics. He feels that people who use power chairs might be viewed as lazy. “The jock community amongst wheelchair users look at it as … ‘Look at the couch potatoes.’ All of a sudden you're in a power chair so you're a couch potato.” In spite of this perception, Simon is satisfied with his decision to use a power wheelchair. The bottom line is that he can do more and move from place to place faster in a power chair, often faster than people can walk. The perceived stigma doesn’t jive with his view of reality, “because to me there’s no disadvantage to being in a wheelchair if I can do more than people who aren’t in a wheelchair can do. To me, that’s empowering, not debilitating.” Simon recognizes that the choice is a very personal one, especially given that people have to choose between function and image. “How do you reconcile that? People have to do that for themselves. It’s a very difficult thing. I’m nothing if not practical.”
Simon has been in the process of researching a replacement for his wheelchair for the past two years. He has two major requirements for the wheelchair: the seating system must be adjustable enough to go into a comfortable position for him, and it must be fast. Besides these, the only other concern is size—he must be able to get into and around his house.
Simon prefers adjustable seating because he has very definite ideas about the position he needs to be in to be comfortable. “Most people prefer a somewhat backward wedge in their chair. This stops them sliding forward—it puts their knees up a little elevated—but it also transfers a lot of weight onto the base of the spine. I personally am not comfortable in that position. I find that my thighs need to be parallel to the ground and my spine needs to be at a right angle to my thighs to be comfortable. The chairs with adjustable seating allow me to accomplish that without having to destroy the original seating.”
Simon finds that he is also more comfortable when his shins are at a right angle to the ground. “I don’t like the feeling of instability that comes from having my heels in front of my knees, which most wheelchairs encourage in their seating arrangement.” This desire to have his ankles directly under his knees led to a preference for fixed footrests (as opposed to swing-away) that could be set in the right position for him. “With fixed footplates, I can tuck them back in because they go in between the casters rather than in front of the casters.”
With these requirements in mind, Simon started the search by looking for an updated version of his existing chair. He found one, complete with an adjustable seating system. He completed the prescription process, but two days before he ordered it, “the manufacturer discontinued it and I couldn’t get one.” Simon went back to searching and eventually thought he had found the perfect chair. “It was fast and manoeuvrable. It had adjustable seating. It had suspension, which takes out all the little ridges in the sidewalks when you’re flying.” It wasn’t until he brought a demo version home for a few days that he realized that this chair wouldn’t work for him. “I couldn’t get it onto my porchlift. It was way too long…. I was prepared to buy a larger platform for my porchlift in order to get it in. But once I got it into my house it was too long and unwieldy. It wouldn’t fit into my bathroom. Once I sat at my kitchen counter, there wasn’t any clearance behind me and the fridge. It was very difficult to move and manoeuvre.”
Soon after that, a replacement to his original choice came on the market. It also had the features Simon was looking for, so he requested a demo model from the company. They “were very good, they sent me a demo … actually it was the dealer rep’s demo. They brought it here and let me use it for three or four days and made sure it worked…. They’ve been very supportive.” At the end of this trial, Simon had his prescription changed to the new model. However, the government agency that subsidizes wheelchair purchases had not yet reviewed the chair. He was not able to move forward with the purchase until the review took place, which was further delayed by a civil service strike in the middle of the process. It took a few months, but the agency ultimately approved the new chair model. That was a little over a month ago, and Simon is in the process of putting together the portion of the purchase price that is not covered by the program. “So basically, two-and-a-half years after I was first prescribed a new chair, I’m going to end up with one, which is frustrating but satisfying at the same time. Eventually, I get what I need.”
Over the years, Simon has developed a clear set of requirements for the wheelchairs he uses. The same analysis process also led him to question the basic design of the wheelchairs that were available to him. “I’m a very technology-oriented person. The first time I ever sat in a wheelchair, I realized how empowering it was but wondered about the design…. Couldn’t it be made lighter? Couldn’t it be made less expensive?” As an example, Simon describes an early decision to put large casters on his first manual chair because of the sandy conditions where he lived. The larger casters made it easier for him to get around. “And then I realized that there were many, many adaptations to technology that would allow me large amounts of freedom within my somewhat constricted environment of not walking.”
Simon is occasionally frustrated by the lack of options available when he’s looking for a wheelchair. “Personally, I think wheelchairs should be designed in a more modular form where you can mix and match modules to get tire sizes you want, seating options that you want, power options that you want. I think that would be very marketable and give greater flexibility to the consumer to design the type of chair that they feel they need, or the consumer’s physiotherapist or whoever is assisting. To me that seems like the logical way to go, but I don’t run [a wheelchair distributor].” Part of the reason Simon wants this modular approach in wheelchair design is aesthetics. He likes the looks of many of the newer wheelchairs, but he finds other elements of the design make it necessary for him to rule them out. “I found since I’ve been looking for a wheelchair, there are some very stylish wheelchairs available. Style-wise, they suit me, but physically and mechanically, they don’t suit me. So what you need is that modular concept where I can build a wheelchair out of parts just as I can build a computer out of parts. You know, I can go to the computer store and say, ‘I want this hard drive. I want this memory. I want this video card. I want this sound card.’ And I’ve got a computer…. Why can’t I do that with a wheelchair?”
The way wheelchairs look is also a concern for Simon. You have “the most ugly aesthetics on wheelchairs. It seems that it’s only very recently that manufacturers have started to regard wheelchairs as something you wear…. You wear it all the time and it becomes part of your first impression, and if it looks like a forklift truck, then that first impression is maybe not one you want to give.” The look of the wheelchair is also important to Simon because he is sensitive to the meaning that society attaches to it. “Society has preconceived notions. It’s bred into our society. It starts with a mother telling her child that it’s rude to stare and then it becomes if I can’t stare, then I won’t look at all…. So you become a non-entity at that point for some people. Other people, you're a point of curiosity. And other people assume that because you’re in a wheelchair you’re mentally incapacitated as well as being physically incapacitated. The first time I went to see my surgeon … I had a manual wheelchair at that point in time. My wife accompanied me. I went up to the reception desk and gave her my hospital card and my health card. And the receptionist looked at my wife and said, ‘And what time is his appointment?’ And my wife said, ‘Why the hell don’t you ask him?’ And the receptionist said, ‘There’s no need to be rude.’ And my wife just lost it and told her, ‘You think I’m being rude? How rude are you being to my husband by assuming that he can’t answer your questions? Or that I, being his assistant, whatever you want to call me, know all the answers? Speak to him, he’s the person you should be dealing with.’ That was three months after my spinal cord injury and I became very much aware of those kinds of attitudes within society. I didn’t expect to find them at the spinal cord injury clinic at the hospital but it really woke me up when I did.” These preconceived notions make the overall look of the chair more important. “People should have the option of buying what they feel makes them look good.”
Simon has recently learned about a new wheelchair design—one that can climb stairs and he is very interested in it: “Basically it’s a four-wheel drive power wheelchair that will stand up on two wheels and climb stairs and raise the height of the rider to an approximate six-foot head level above the ground. That would negate the need for a lot of other assistive technology. My understanding is that they plan to market this wheelchair in North America, priced at about $35,000, which makes it somewhat out of most people’s range. But if you consider how much money it costs to put a porch lift in … how much money it costs to modify a kitchen so you can reach the cabinets above the counter tops … how much it costs to buy a regular power wheelchair, if you can do away with all of these other assistive technologies by having a wheelchair that will do all these things, you probably will be able to equate the price for the new technology. That’s my rationalization anyway.”
Simon is pragmatic about the reason that a stair-climbing power chair holds appeal for him. “Well it would be nice if the world were made of terrazzo, flat and smooth, and everywhere had ramps, but the reality is that most places have stairs and steps. Unless you can find a way to negotiate those, particularly for power wheelchair users, you are very restricted in the locations that you can access.” An early negative experience with building inaccessibility illustrates his point. “I was amazed when I lived in Toronto and I went to pay a parking ticket, and the only building that I can pay my parking ticket in is not wheelchair accessible. It’s wheelchair accessible once you get inside, but there’s seven steps up to the front entrance. So I had to pay a late penalty on my parking ticket because I couldn’t get inside. And I was absolutely disgusted by that…. When I complained to them, they told me it wasn’t the Parking Commission’s problem, it was the Land Acquisition people’s problem. And they started to pass me down the bureaucratic chain and I just let it go, but that’s the kind of frustration that you run into. That’s why I feel that the stair-climber wheelchair is possibly one of the most important technological advances that can be made….”
Several years after Simon’s injury, he and his wife bought a house. He remembers, “I couldn’t get into the front door or the back door. So they lifted me in my manual wheelchair up the steps, and I stayed in the house for three days while … they made a ramp….” This first ramp did the job, but “it wasn’t very stable. They built it out of 2x4s and other things.” When it became necessary to replace the ramp, Simon and his son used “wooden I-beams and 2x6s.” This second ramp lasted them up to the time of their major renovation, about a year-and-a-half later. Because they were making some significant changes to the house, a building inspector came out and “looked at my ramp in the back and said, ‘Oh well, that’s got to go—that doesn’t conform to code. For a start, it’s got to have a handrail on it, you know, 36-inches high and it’s got to be a different slope….’ The construction he was talking about would have taken my whole backyard to get up and off of the porch…. We realized at that point that we needed a mechanical means to do it rather than a ramp.” As a result, Simon added a porch lift to his renovation plans.
Simon and his wife had lived in two “accessible” apartments before they bought their house. One apartment was designed poorly for someone who uses a wheelchair, and the other was designed well. When it came time to design the renovations to their home, Simon had experiences from both apartments to draw upon. “I stole a lot of ideas from the good apartment.” Simon also remembers learning from the design mistakes in both apartments, particularly in the kitchen. “It increased my awareness of those kind of silly little things that helped make this kitchen so successful.” As an example, Simon describes an eye-level oven that he had. “It was built in. And the door opened to the side where the counter was. So if you’re taking anything out of the oven, you’ve got to back up enough to clear the door. A stupid little thing.” The oven would have been much easier for him to use if the hinges had simply been on the other side. Simon and his wife used this type of practical knowledge when they were designing the renovations to their house.
Design they did. “It took me about six months to come up with a design and I used my computer to sketch it and lay it out. I had a home architect program, which is very basic, but I just needed something that would draw straight lines. So I fiddled with that for about six months, trying to make optimum use of the space and figuring out how we could accommodate all of our needs.”
With the basic drawings complete, Simon needed to find an architect to make and approve blueprints. That turned out to be a difficult task. “I phoned several architects. Most of them weren’t at all interested in what I was proposing.” He basically told them that he had designed the accessibility modifications that he wanted to make, “and I need somebody to look it over and check that it meets the building code.” The response he typically got was, “‘Sorry, we can’t do that. We have to do the design part too.’” Simon was going through the Yellow Pages when he called an architectural designer who was willing to discuss Simon’s needs. “He wasn’t qualified as an architect but I called him. He came out to talk to me. He didn’t want to talk to me on the phone…. I showed him my plans and we discussed them. And he went down in the basement and looked at where the supports were and those kinds of things.” Simon hired this person to draft the blueprints. He also had an architect acquaintance review the blueprints and put his stamp on it. “And he came to the house while we were interviewing contractors and dropped in and out while the construction was going on to make sure that it was all going according to plan, that there wasn’t anything that the builder didn’t understand.” Simon found this person very helpful, pleasant and supportive through the entire renovation.
After they had plans, they could apply for government funding to help with the renovations. They received partial funding from a federal program that modifies homes for accessibility. The funding came to less than half of the total price though, and they paid the rest themselves.
Finding a contractor was a long, careful process. “I was looking for somebody that would build it the way I wanted it built.” One early experience showed them that that might not be as easy as it sounded. “One guy walked into the area where we were proposing the bathroom, looked at the plans and said, ‘Well, we need a grab bar beside the toilet. You haven’t got any grab bars on. We’ll use these two-inch stainless steel grab bars,’ blah, blah, blah and that will add another $800 to the cost of doing the bathroom. I said to him, ‘Well wait a minute, what do I need a grab bar for?’ He said, ‘Well, so you don’t fall down.’ I said, ‘I’m in a wheelchair. Do you know how hard it is to fall down in a wheelchair? It just doesn’t happen.’ He says, ‘Oh well, if it’s an accessible bathroom you’ve got to have grab bars.’ There wasn’t much more to say. So he was history. And we went through that process several times.”
The contractor they eventually chose had a much more practical way of doing things. For example, Simon’s wife was showing him the bathroom space one day while Simon was in the hospital. “He got my manual wheelchair up from the basement and set it in the bathroom. He marked on the subfloor where the fixtures were going to go and said, ‘Wouldn’t it be better if we put this sink where it is now rather than over here? Because look how much easier it will be to manoeuvre around in this space….’” Simon and his wife appreciated his thoughtful, hands-on approach and the good working relationship he established with them.
The person they hired to do the kitchen cabinets was not as co-operative. “I wanted part of the counter to be thirty-odd inches off of the floor. My cabinet contractor gave my wife a real hard time about putting it that low. He said, ‘No, the standard height is thirty-three inches for handicapped-equipped counters.’ She says, ‘Let me tell you, my husband sitting in his wheelchair, it’s thirty-three inches to his armpits…. That’s no use to him at all.’ He said, ‘Well that’s the standard height. You know, you’re ruining the resale value of your home.’ And she said, ‘I don’t care, you’ll put in the cabinets the way we want them in, otherwise I’ll go get another kitchen contractor. Easy.’ Then he said, ‘Well you’ll have to sign a form that says you accept responsibility and this and that.’” They signed the form and the contractor installed the counter at the requested height, but they found this experience an example of a general “reluctance to do it the way you want to do it” amongst the construction community.
That’s not to say that Simon and his wife weren't open to ideas and improvements from the people they hired. “My electrician came in and saw where the contractor had put the thermostat on the wall and firmly ripped it out and dropped it down six inches. After, he went and got my wheelchair again and sat in it and said, ‘Look, it’s got to be this low if you want to see it from the wheelchair.’ … Very helpful in those kind of things. Those were some of the details that we would have missed. I had already specified the wall outlets had to be eighteen inches off the floor and … that the wall switches are all lowered and the door handles are this high. I had already specified all that…. I had forgotten about the thermostat.”
When Simon was living in his “good” apartment, he learned a lot about what makes a good accessible bathroom. The apartment had a “beautiful” big bathroom with ample room in the wheel-in shower and a separate bathroom with a tub for people who preferred that. What he didn’t like about the arrangement was a four-inch lip around the wheel-in shower, which meant that he had to transfer onto a bathbench to take a shower. “So it becomes not a wheel-in shower.” When he was designing his home modifications, Simon decided not to put a lip of any kind around the shower.
Instead, he had the contractor make the shower floor gently slope toward the drain in the middle, like a shallow bowl. Simon is happy with the result, but he has to be careful that the drain doesn’t get blocked because he doesn’t have much time before water accumulates to the edge. In retrospect, Simon wishes he had put a line of tiles around the edge of the shower: “A tile that’s got a rounded edge on it … around the outside of the drainage area so that you have a little bit of a lip there. But it’s only the thickness of the tile, it’s just about three-eighths of an inch, which would be easy to get over. It’s rounded on both sides, just for that additional bit of safety.”
Simon wanted a kitchen that he could use. “We wanted the counter where the sink is to be fairly low so that I could access it. I use the kitchen a lot. I like to cook and believe it or not, I like to do dishes too.” They had to be creative to make the kitchen accessible because Simon has a short trunk. “In order to have the sink low enough for me to be able to access it, I couldn’t get my knees underneath it.” Simon reasoned that a shallower sink would solve the problem. He was able to find a kitchen supplier in a nearby city who had a sink with a five-and-a-half inch depth. “We put that in. It allowed us to drop the counter another inch and still maintain at least an inch between my knees and the bottom of the sink.” That worked well, but the shallow depth created problems for filling jugs and large pots. They solved this problem with a pull-out spout. “You don’t have to worry about a pot too high. You don’t have to worry about a pot too heavy to lift. You can put it down on the floor and fill it up on the floor. It’s a wonderful thing, flexibility you know.”
The flooring material in the kitchen was also a concern. Simon recognized that in his power chair, he would be concentrating a lot of pressure on the floor. “We have a very small contact area with the ground, so we absorb a lot of pounds per square inch….” Simon felt that any kind of traditional vinyl floor would either be compressed or “ripped to shreds in weeks.” He and his flooring contractor decided on industrial-grade vinyl tiles, the kind you find in malls. “As it worked out, because of the floor movement, the heavy-duty vinyl tiles still cracked.” Simon figured that a contributing factor was the natural movement and settling of the house or “breathing” that occurs with “the humidity and summer and winter temperature changes.” The fixed tiles had no place to go, so they cracked. Simon watches the construction shows on TV and he remembered something called a “floating floor system.” The floor “isn’t attached anywhere to the under-structure and we thought that’s just the kind of thing we need.” Simon found what he was looking for in a building supply store, and he had a friend install it. They’ve been through four full seasons with the new floor now, and they’ve had no further problems with cracking.
Simon has had a few different types of bed over the years. One early bed that worked quite well for him was a waterbed. “A properly adjusted waterbed maintained body temperature and reduced pressure everywhere.” The only reason he is not using one today is that he was getting bronchitis frequently at the time, and he needed to be able to prop his head up. “You can’t crank the head of a waterbed up you know, it just doesn’t work.” The adjustable bed he bought to replace the waterbed gave him this capability, but then his skin was at risk. He was getting sores on his lower back because of a condition called septic osteoarthritis. “I found that when I started sleeping on my side to take pressure off of those, I was getting red skin pressure points on my hips.” As a result, Simon starting trying out alternative mattresses. He tried foam but he found that it trapped heat so that he was constantly perspiring in bed. The gel pads he tried next did not have that problem, but the gel wasn’t thick enough to provide adequate pressure relief. He eventually concluded that he would need an alternating-pressure air mattress. “The theory is that it alternates the pressure in each of the cells every five minutes so that you’re not laying on the same spot or applying pressure to the same spot for more than five minutes at a time.” This air mattress has been working well for Simon.
Another important device is a trapeze bar that Simon uses to help with moving around in bed. “The trapeze bar has been a standard thing above my bed since I came out of rehab. I couldn’t manage without it. It just makes transferring and everything else, even rolling over in bed, much simpler.” The particular model that Simon has has a floorstand. They had thought about putting one in the ceiling, but a ceiling fan and a number of other considerations made a floor mount a better choice. “And it’s transportable. It fits on just about any bed.” Simon finds that the trapeze is a very handy piece of equipment. “If I get hot and I’m laying on my back, sometimes I like to roll over onto my side and get a little air to my back…. It makes it a lot easier. I find that I miss it when I don’t have it, if I’m in a hospital for example, and they don’t have a trapeze bar available.”
One disappointment was the porch lift. Simon finds that if it has been raining, the lift sometimes doesn’t work. “The dealer no longer deals with that particular manufacturer unfortunately, because he found that the product was susceptible to breakdown but he hadn’t been handling it very long and he didn’t know that at the time.” Simon has to live with the problem for now, because the renovations as a whole were very expensive, and he can’t afford to replace the lift. Another problem with the lift is the fact that it is powered by electricity. “If I have a power failure I can’t get out of the house, a safety issue.”
Simon plans to build a mechanically driven, backup lift in his backyard. This lift would actually serve two purposes. Right now, Simon has no access to the basement, which is a significant problem because he lives on the edge of “hurricane alley” and they get a lot of severe weather. In the place he’s thinking about building the lift, there is a patio with adjacent outdoor stairs going down to his basement. He imagines a solution that will lift him between the patio, the yard and the basement: “What I’d like to do is put a roof on my porch, put a sufficiently sized beam over where the basement steps are now, cut the concrete steps out, build a metal frame, and attach a chain fall to it.” A chain fall is a device with pulleys that is used to lift heavy weights. “You see them used a lot in garages to pull motors out of cars.” Simon is confident that they will be able to make this idea work. “I used to race motorcycles at one point in my career. I know that I can do it mechanically, and I know that I can do it safely.”
Simon has been through a lot of design and decision-making to get to the point he is at now with his assistive technology. A large part of the work is achieving cost-effective, visually pleasing, design solutions. “Our hundred-year-old house has ten-foot-high ceilings. In order to make the heating/cooling system more effective, we have put in large ceiling fan light fixture units. To work within our always-restricted budget, we did not use the more expensive wireless remote-controlled fans; instead we devised a piece of dowel with a modified hook on the end. This allows us to easily reach up and pull the chains that control the fan and lights. Perfect! A $5 solution to a $500 problem.”
This work has been a means to an end though and Simon is quick to point out that it is not an end in itself. “The quality of my life comes from within. We have gathered around us the technology that enables us to live the kind of life we choose to live. So I guess my quality of life is enabled by the technology. But the quality of my life is also enabled by things that are more ephemeral than that…. It’s not solely technology.” Aesthetics and design are important to Simon. “Pleasure is in a lot of those details. Satisfaction is in a lot of those details.” He sees the equipment he uses as representing him—the image that the equipment puts across matters to him.
An example is his porch lift. He finds them “pretty ugly” in general and he is not a fan of their typical beige colour. Simon painted his lift to make it look different. “We painted it to look like a door, and put a sign on it that says ‘Please use other door’ and an arrow pointing up the steps to the front door. “We get more comments about that, the door painted on our porch lift. People see the humour in it and come into our house smiling, first impressions again, they really set the tone for anything that follows.”
Simon has no illusions about technology’s quality. “It’s not always working properly but then this isn’t a perfect world. You know, it’s becoming less perfect, I’m afraid.” Simon sees people caring less about the work they do with attitudes that seem to say, “Who gives a damn, we’re only here for eight hours doing this boring job. I don’t care who uses it in the end.” He has had to be careful to stay on top of his purchases and look out for himself. “That’s the best advice I can give to anybody looking for assistive devices—find a knowledgeable and progressive dealer whose emphasis isn’t necessarily on sales, which unfortunately some are. The emphasis has to be on what the client needs or what the client wants rather than on what I want to sell the client. And you have to make that determination fairly quickly in your relationship. This is difficult for some people to do. You become very much a manager of your environment when you’re in a wheelchair, and if you don’t manage your environment, your environment will manage you, and you will have a less fulfilled life because of that.” Simon considers that this management skill, plus being flexible enough to compromise, and “being assertive in the nicest possible way,” are probably the most appropriate skills that help negate disability. He sums it up this way: “Total disability comes from the paralysis of our ability to adapt.”
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