Terry’s goal after his injury was to return his life to “some sense of normality.” He remembers that he just wanted to “try and get back to where I was before. Doing the stuff that I was doing before. I didn’t really want to have too much change if possible.” Terry’s sense of a normal life included returning to work, driving, and enjoying hunting and fishing in the bush in the rural area where he lives. With the help of assistive devices and other adaptations, Terry has achieved these goals or is well on his way. He returned to college to study architectural design with the goal of finding employment in this area. He drives a truck using hand controls, and he uses an all-terrain chair and an all-terrain vehicle to get around in the bush.
Because Terry was hurt on the job, he has become very knowledgeable about the workers’ compensation system. He applies this knowledge in a volunteer advocacy group that works with newly injured workers or anyone else who has experienced a severe injury. In addition to helping people adjust to their new lives, Terry and his group work to make sure they know their rights under the law and get all the benefits that they are due.
Terry has also taken an interest in barrier-free design through his studies in architectural design. He feels he has been able to keep up with barrier-free aspects of legislation for people with disabilities where he lives. He also uses this knowledge in volunteer work at Habitat for Humanity, where he has designed several accessible homes.
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Terry has been on both the receiving end and the giving end of help from his local advocacy group. When he was first injured, he met a man from the group who had the same level of injury. This person had been using a wheelchair for several years and could tell Terry what to expect and help him with the design of his home. Terry especially liked his flexible “you may need this, you may need that” approach, which was different from the way the rehab professionals approached things. He feels the professionals “don’t always know what is needed,” and he uses the idea of grab bars in the bathroom as an example. “I won’t have them in there because I don’t need them. I can transfer and everything without them. But when the guy came down here to assess the old place, [he said,] ‘Well, you need a grab here, here, here and here.’ Maybe I do, maybe I don’t. Let me find out first before you tell me I need all this stuff. Occupational therapists are great for doing this as well. They’ll say that ‘you’re a spinal cord injury—you need this.’ You know, you’re boxed in like that…. That’s something that we found with this group … that we can talk about it. I said, ‘Well, maybe I don’t need that.’”
With this in mind, Terry and his wife came up with the criteria they wanted to follow when they built their new barrier-free home. First, they wanted to make sure that Terry could get around without preventing anyone else’s movement. This attention to the whole family’s needs helped them to make decisions. For example, Terry’s wife does most of the cooking, so the kitchen counters are at standard height. However, Terry needs access to the stove sometimes, so they also decided to have a built-in stove with a cut out underneath.
It was important to Terry and his wife that their home not “look like a handicapped home.” Terry attributes this feeling to “a bit of vanity” on their part. “I hate going down and seeing some place that’s got twenty-five miles of ramp going back and forth, back and forth.” He says, “I have a ramp that goes to the driveway, but it looks like a sidewalk.”
Terry and his wife were also unwilling to compromise the way the inside of the house looks. As Terry puts it, his wife went through the “dreaded home books and plans and she found something she liked. It didn’t take much to modify it from there. Bigger rooms, wider hallways, those kind of things that were just cosmetic stuff that had to be changed.” For example, they weren’t willing to give up the warmth of carpet in the living room and bedrooms. They also think it looks better than having tile throughout the house. As Terry puts it, “The front room’s supposed to be carpeted. The bedrooms are supposed to be carpeted…. It’s warmer….” Although the temperature of the floor doesn’t affect Terry, he said they made their decisions with the rest of the family in mind. “There’s other people in the house too, not just myself.”
To make the carpet navigable for Terry, they simply used a heavier commercial grade carpet. Terry says, “It doesn’t show the wheels [marks] when you go back and forth…. And it’s easy to roll on.” In his bedroom and living room, they didn’t put foam underlay under the carpet, so the floor is harder and easier to roll on. They put “a little bit of foam underlay” in the children’s bedrooms, and Terry can feel the difference. He says, “I can roll on it, but I can feel it. It’s a little more difficult to roll on.”
Terry and his wife do regret that they decided not to put in a basement. At the time, they felt a basement wasn’t necessary and they didn’t want any stairs in the house. Today though, Terry wishes they had put one in just for storage space because, “by the time you start … accumulating this kind of stuff, it just fills up an area real quick…. You know, if you’ve got two chairs, where do you put the other one?”
Terry set up his bathroom carefully, combining both minimum and maximum adaptations to suit his needs. On the one hand, he doesn’t need grab bars because he can do his catheterizations from his chair. On the other hand, he prefers the convenience of a wheel-in shower. He explains, “I have trouble getting in and out of bathtubs. It’s just something, my balance is just bad enough that I can’t sit on the edge. I start wobbling.” Terry finds it easier to use the commode for his bowel routine and head straight into the shower on the commode. Terry also has a cut out under the sink so that he can get close with his chair. The rest of his family tends to use the other bathroom in the house.
In the course of designing bathrooms for others, Terry came up with an alternative solution to the bathtub problem: “What we’ve done is put ten inches to a foot of decking around the edge of the tub, so when you pull yourself up out of the tub, you sit on a decking and that way you can transfer your legs over and … you’ve got a stable spot to sit on.”
Terry and his wife also thought about the outdoors of their new home when they were planning. He says, “We put a large deck on the back, which makes it nice to get out and enjoy the sun and the weather when it is nice.” The doors from the house to the deck are called garden doors: “They’re a three-foot door, and then there’s another three-foot door beside it. But it only opens partway. It’s screened…. One door opens to go in and out, but the other one opens for ventilation.” They chose these doors over patio doors because “patio doors have a tendency of being a little higher because of the tracks. And the ones they have now are, are a kind of a plastic and they end up breaking. And you end up having lots of problems with the sliding part of the door afterwards.”
They also planned ahead with what they call “maintenance-free” items for the outside of the house, such as siding, windows and eavestroughs that won’t need to be painted every year. Terry finds that he and his family can handle much of the other household maintenance, such as plumbing and electrical work, themselves. For those things they can’t do, they have a maintenance allowance from Terry’s compensation insurance. All in all, Terry feels the process of building his home “worked out quite well.”
Terry has recently purchased his third chair, which is “sitting in the garage.” He explains, “I don’t feel real comfortable in it yet. So when everything else fails, go back to ‘Old Reliable,’ something you’re used to and you’re comfortable with.” “Old Reliable” is a folding chair, but the new chair has “a solid seat and a solid back.” Terry says, “For some reason, when I sit in it I feel like I’m falling forward, or it makes me feel like my rear end wants to slide out.”
Terry’s rehab professionals recommended the new solid seating after Ted had a long stint in the hospital with pressure sores. They thought it would help keep his skin from breaking down again. Terry believes that he got the sores only because of the demands of finishing college. He remembers, “I was very busy at the time…. I was sitting sixteen, eighteen hours a day without getting out of the chair.” Also, he had to have a low-profile cushion to be able to get under the desks at school and he thinks he was “bottoming out.” He remembers leaning a lot while he was sitting in front of the computer and he says that, “When I was working on the computer, I had no concept of time and you’re concentrating on doing something … for three hours, you know, and I hadn’t moved. I was just sitting there working away. I never stopped to even relieve pressure.” He has not had pressure sores again even though he is using his old chair. He thinks this is because he now makes a habit of relieving the pressure regularly by lying down or lifting himself with his arms for a few seconds. Terry is confident that the new chair will work out with a little “fine-tuning.” He says, “I’ve got the feeling that the frame itself is sitting too flat. That back is not down enough. And that’s what makes it feel like I want to … fall forward…. So it’s just a matter of getting … it properly adjusted I guess.”
One crucial feature of any chair for Terry is swing-away footrests. Terry catheterizes himself from his chair, so the footrests need to swing away so that he can get close enough to the toilet. He is able to do this in public washrooms too, so it is definitely one feature that he doesn’t want to lose.
Terry also has a stand-up chair, which he uses mostly for weight-bearing therapy and for reaching things above his head. He describes the standing chair as “just like a normal chair” except that it has a motor to raise him to a standing position. He says, ”I like it because I put weight on my legs.” But he adds, “It doesn’t stand me perfectly straight up…. It’s back a little bit…. At least you can get all the weight on your legs and you’re standing up and you can do stuff.”
Terry grew up enjoying hunting and fishing, so he was sure to get an all-terrain chair. It has a rigid frame and mountain bike tires. The seat on it is “probably eight inches” lower than the seat on his everyday chair, and it’s “longer and more stable….” He likes this particular style of chair because it keeps his legs up and he gets lots of clearance. It can be a little hard to push in the mud, but he gets much farther into the bush than he could go with his everyday chair.
Terry’s outdoor chair doesn’t get the use it once did because he now has an all-terrain vehicle. “It’s too convenient for me to jump in the power [ATV] and zip off. And I can go faster. I don’t get as tired. I can jump over … bigger logs now,” he says. As a result, he can get farther back into the bush than he can his outdoor chair. Being able to hunt and fish again was a big part of the return to normality that Terry was working toward after his injury. He says, “I did a lot of fishing and hunting before I got hurt. And I’ve been able to get back pretty well to this [though], not quite the same level.”
Terry didn’t have to modify the ATV very much since it already had hand controls. He did modify the seat to accommodate the cushion from his chair so that he could spend more time in it without worrying about his skin. He also turned the back seats around, “so you can put more stuff in.” In Terry’s case, “more stuff” is his everyday chair, if he thinks he is going to need it. But Terry also likes the freedom of being able to “jump in the machine and go. I don’t take the chair because I’m not intending on getting out. I’m just going back for a ride or something like that.” He has never had a breakdown but he did get stuck once. Cell phones don’t work in his area, so Terry was on his own. He remembers he had to “literally” crawl out of the vehicle, crawl through to hook up the winch, and crawl back to winch himself out. He notes, “It can be done. It’s not a pretty sight.” But he says, in his rural area, “You learn quick or you don’t go by yourself.”
Once Terry is out in the bush, he has to deal with the fact that his “balance is shot.” He explains that when he sticks a rifle out, “it acts as a leaner, and it pulls me over. So I just have to remember to sit a little different in the chair or, or lean against something.” He explains, “A lot of times I’ll just carry a stick with me…. I put the stick on the ground and I lean on the stick … under my shoulder, … so when I lean forward I’m pressing down on the stick and it stops me from going forward.”
Terry is able to fish from a boat without any modifications. First, they use the “great launch” they have there to get the boat in the water the same way anyone would. Then, they pull the boat up onto shore so that he can transfer in, which he does while someone steadies the boat. He “shimmies” over the inside of the boat to get to the driver’s console and they push off from the shore. His chair stays in his truck while he is fishing. Terry offers his boat as another example of a “trial and error” process that he used to adapt to his situation.
For Terry, driving was an important part of getting back to doing the things he had done before. He was driving again before he was released from his rehab hospital. He remembers, “I didn’t want to lose that sense of independence … not depending on anybody else for rides here or there.” The first step was driving lessons with hand controls. Terry was used to running machinery and using his hands from his work in forestry, so learning how to drive with hand controls was easy for him. He remembers the hand controls had “two rods, one down to the fuel and one down to the brake.” He didn’t like them because, “I just found my legs were getting in the way. When I pulled down to the gas … it would hit my knee…. I could only go 30 miles an hour … so I never had a problem with speeding! It’s just I found it was awkward.” When it came time to adapt his own car, Terry chose the twist-grip type of controls: twist for the gas and push down—away from his knee—for the brake. He had driven a motorcycle before his injury, so the twist-grip type of hand controls were familiar to him, “other than the fact that it’s just opposite from the bike, you know, on the left side.”
Video:
See Terry demonstrate his truck's wheelchair lift. Choose a format: |
To get into the car, Terry had to enter from the passenger side and transfer to the driver’s seat. Then he had to bring in his wheelchair, dismantle it and put it into the front seat beside him. Now Terry has a pick-up truck equipped with a lift for stowing the chair in the back of the truck after he transfers. The lift has “a little boom that comes out and picks the chair up and puts it behind in the back of the truck.” Terry describes his method for getting into the truck: “I pull up beside it. I open the door, and I park my chair on the driver’s side. And I lift my feet up and I put them inside the truck. And I put a handle on the roof, on the inside, similar to what most cars have on the passenger side. I put … my feet inside, [and] I reach over and grab it with my left hand and I pick myself up. I just swing over and I can set myself inside the driver’s seat.” Then Terry pulls his cushion off the chair and puts it behind him.
Next, Terry operates the boom with a hand-held control. He explains, “The unit itself is behind the seat, so it’s got wires running to it.” With this control, he swings the boom around to the chair and unreels a cable. He says, “It hooks on, and then when I pick it up, it folds up the chair. I reel it up, pick it right up, swing it around and set it in the back of the truck. And then I just set the boom … on the seat itself, so it doesn’t move around.” To get out of the truck, he simply reverses the process.
Terry finds that the weather isn’t a problem even though he drives with his chair in the back of an open pick-up truck. Obviously, if it’s snowing while he is parked, the chair will get snow on it. But Terry says, “If I’m moving, it doesn’t. I guess it’s just the way the wind comes off the roof of the truck. It blows all the snow out.” Nor does he find the rain a problem. “When it’s raining, the fabric is damp, but I guess it’s the type of fabric that doesn’t hold the water.”
This arrangement works well for Terry for many reasons. He is independent because he can use the lift device by himself. Terry doesn’t want to drive from his chair, preferring to transfer into the driver’s seat instead, which he can do. Having the lift means that he doesn’t have to drag the chair over himself into the vehicle. He says, “You know, the wheels get dirty and that, and I’d have to drag everything across myself. It was just something I didn’t want to do.” They were also happy that this arrangement didn’t require major adaptations to the truck like cutting into the body. Finally, it “doesn’t look like it’s a handicapped vehicle,” which is important to Terry and his family.
Another advantage is that the boom itself ensures that people leave Terry enough room in parking lots. He explains: “In a parking lot, I take the boom and I just swing it out a little way so I can get by [but] if someone tries to park beside me … they have to [leave me enough space] because the boom is sticking out about a foot and a half to two feet. Because a few times I’ve gotten to the point where they parked so close that I couldn’t get in between the two vehicles with my chair, you know. So, it’s just sort of a strategy.”
Terry and wife chose a truck over a van partly as a matter of taste and partly as a matter of practicality. Terry’s wife just didn’t like the idea of having a van and Terry says, “A van’s no good for me where I go…. I get back in the bush…. It would get all beat up.” The truck is also handy for carrying feed for some animals they keep. Cost was a consideration too. The truck needed only minor modifications, and the lift is about one-fifth of the price of a wheelchair lift for a van.
Like many people who have spinal cord injuries, Terry recognizes the uniqueness of everyone’s situation. “That’s probably the biggest problem with technology—an engineer designed it. It works, but not perfectly.” His feeling about rehab professionals is similar. He appreciates their advice and advises others to “listen to what they have to say, but don’t take it as the word of God.” Speak to wheelchair users themselves, as well. His advice to the professionals is, “Listen to the people first.”
The second biggest problem with assistive technology is the cost. Terry notices that, “As soon as they call it medical, the price goes right through the roof…. I think that’s what inhibits a lot of people from actually going out and being able to try anything. It’s just the barrier is the cost. You know, not everybody’s lucky enough to be on compensation or [have] employment or insurance … so most of us just can’t afford it.”
Terry finds his technology very useful, but he advises against using technology as a crutch. He suggests people should keep a positive attitude and try to work around situations without a lot of technology. He reasons, “What’s the worst that could happen? If you try it and you don’t make it, well if you fall down, you get yourself back up again…. See what happens. If it doesn’t work, it doesn’t work. If it works, great.”
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