Brenda is a busy, creative person who enjoys painting and sewing. She is always looking for ways to be as independent as possible. She uses various pieces of equipment, many simple and homemade. She volunteers with a local agency for people with spinal cord injuries, which helps her get information about the programs and services available, such as accessible housing. Brenda lives in an accessible apartment with her dog. The apartment has wider hallways and doors and a cut out under the bathroom sink. It also has a wheel-in shower, which is a “bonus.” And it has a ramp out to her patio, where Brenda enjoys sitting with a cup of coffee and the newspaper.
Because Brenda has the use of her hands, she was told that she was entitled to funding for a manual wheelchair, but not an electric one. However, she was able to get an electric chair privately. She reports that the electric chair “changed my whole life.”
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When she was first injured, Brenda had a hard time finding the best wheelchair for her. She attributes the difficulty to the complexity of her injuries. She explains, “I didn’t just break my back. I broke every rib in my body. I broke my shoulder. I broke my sternum…. So no matter what chair they put me in, I was uncomfortable. The only way I was comfortable was practically laying down in my chair.” She says that some of the providers at her rehab centre thought she might be “in denial” of her injury because she really didn’t want to pick a chair at the time she was discharged. However, she was concerned that if she didn’t choose a chair by the time she was discharged, there could be problems with getting the government funding to pay for it. But she found that when she had been at home for a while and started feeling better, “Of course, my chair was no good. I was practically laying down in my chair.” No amount of adjusting the settings on the chair seemed to help.
After three years of discomfort, Brenda was allowed a second manual chair. Usually it takes longer—about five years—before wheelchair users can apply to the government for a replacement chair. But Brenda’s first chair was so unsuitable that she was able to convince the government to fund another one sooner than that.
When the funding program agreed to get her a second chair to replace the one she was discharged with, she felt that was an indication that the first chair wasn’t suitable. As she puts it, “It wasn’t denial. It was just I knew I wasn’t physically healed enough to be in a chair.” The moral of the story for Brenda? “You shouldn’t have to order your chair when you leave rehab.”
Brenda thinks people should be able to try out their chairs for a couple of months before they have to settle on one. She notes, “Coming home on the weekend is not like living at home. That’s for sure.” She thinks in the long run, it would cost less money to the system if people could order their chairs after they have been home for a while, so that they could get the best fit in the first place and not have to replace the chairs early as she did.
Even if her manual chair had been comfortable, there were still some things that she just wasn’t able to do with it. She says that she lived in her apartment for three years with the manual chair and couldn’t go across the road because of the anti-tip bars. She explains that because of the way the road dipped, “I hit the anti-tip bars. I couldn’t get up far enough up onto the driveways or the curbs to get over.” She also lives on a quite a steep hill. “I could go down, but I could never make it back up by myself. Or, if I did it was like a two-, three-hour excursion just to get up a short hill.” And the paratransit in her area requires users to book two weeks in advance, so there was little spontaneity in Brenda’s life when all she had was a manual chair. Everyday activities, such as walking the dog or going out for coffee, were difficult. Visiting friends and family were major excursions.
To make matters worse, Brenda had a lot of pain in her wrists and had to wear braces at night. Brenda attributed the pain to wheeling the manual chair. Wheeling the manual chair also bothered her injured shoulder. She says that when she uses her manual chair a lot, her shoulder “aches like crazy.”
But the funding program for assistive devices in her area simply will not pay for an electric chair for her because she is a paraplegic. And providers at her rehab centre felt the same way. She recalls, “It’s drilled into us that paras, and even some quads, don’t need an electric chair.” She thinks it is unrealistic to expect people to change who they are after their injuries. “All of sudden now they’re saying, ‘Oh well, you have to be fit and healthy and you know, do all these exercises and do this and, and I’m thinking, ‘I didn’t do it before.’” She doubted she would become a “physical person” at mid-life. She says, “I’d love to be able to do all those things … but it’s just not me.”
So when Brenda found herself “in the right place at the right time” to get an electric chair as a gift, she almost didn’t accept it. She explains, “Every once in a while, I still feel like I have to justify why I’m in the electric chair. But I’m slowly getting over that, because it gives me so much more freedom to do the things that I want to do. And I’m happy. So why should I feel guilty about being happy?”
Brenda was not professionally assessed for the electric chair, so the chair is by no means a perfect fit for her, but just having it has made many improvements in her life. Her wrists and shoulders don’t bother her since she has had the electric chair. She doesn’t have to plan shopping trips and visits with friends and family two weeks in advance. “I can just go….” She is much more independent and spontaneous, which improves the quality of her social life. “Because I lost all my old friends…. a lot of them were work friends, and I don’t work there anymore…. I find I am making more friends now.” Brenda also thinks having an electric chair is a matter of time management. “If I’m struggling all day just to take my dog for a walk, I’m not getting anything else done…. I could be painting you know, I could be on the computer. I could be volunteering. I could be doing a lot of things.” Brenda doesn’t buy the argument that an electric chair “will make you lazier…. I don’t think I’m lazy at all. I do so many things. I do more than I did before, so I can’t see how it makes me lazier. And I still exercise my arms with weights.”
Then there are the little comforts that the electric chair brings. “I can run to a coffee shop and get a coffee just like everybody else does…. In this drive-thru society, you know, who says I have to suffer … when society can’t even get out their cars to get a cup of coffee?” She can also have her coffee at home on her porch in “a nice ceramic cup that I like to drink my coffee out of.” With the manual chair, she had to use a plastic travel mug to take her coffee outside. “I could never get my coffee out the door because I needed both hands to wheel out the door…. It sounds like a little thing, but it’s a big thing.”
Even Brenda’s dog is healthier. She says, in her manual chair, “this little 12-pound dog was trying to pull me down the road you know, because I couldn’t go fast enough for him!” Now she takes him out for longer periods, at a faster pace and in all kinds of weather.
There are a few drawbacks to having an electric chair. The electric isn’t as easy to manoeuvre, though she has always managed anywhere she has taken it. If she could get another electric chair, she’d like to get a faster one that has bigger front wheels. “I got stuck in the railroad tracks one day going to my mom’s place.” And she hates the location of the joystick. “I’ve hit it a couple of times.” She says that her carpet is “taking a beating,” and she had some mishaps running into walls and corners, especially when she was learning to drive it. But the biggest drawback is the expense. Repairs for an electric chair are expensive, and they are not covered by any funding program. In fact, when the time comes to replace the electric chair, Brenda will be on her own.
Although her apartment is wheelchair accessible, Brenda still had to make some adaptations, particularly for storage. In her office/craft room, the closet had sliding doors. She found that she couldn’t get in close enough and that her chair was getting caught on things all the time. She says, “So I just took the doors off, and now I have an extra three feet of storage, and I can put stuff in there. Those little things make life a lot easier. Then I don’t need somebody to come and get something out of the corner of my closet for me. It’s accessible to me.”
In her bedroom, the rod in the closet for hanging clothes has been lowered for wheelchair access, which is great, “but I have this huge amount of room up above and a shelf just above it. So I put another pole up, up on top, and I store all my summer clothes in winter, and vice versa. And so I utilize that space, which was just sitting there—a big space.”
Brenda finds plastic containers useful for storage. She explains, “I have one in my office/craft room that I keep stuff in. And I have one in my bedroom…. I’ve got Rubbermaid things that I store my craft stuff in, but I found every time I pulled it down, the lid fell off and all the stuff came out. So I went to the dollar store, and I bought bungee cords, and I put them around, so that I just grab the bungee cord and slide it down and grab it when it comes down.”
Brenda came up with another homemade solution for working in the kitchen. In rehab, the therapists recommended putting mirrors over the pots on the stove so that she could see things cooking. But Brenda found that the mirrors would get steamed up, and she couldn’t see anything. Her solution? Cosmetic mirrors on an extension. She explains, “I put one of those in my kitchen, and so when I want to see something, I just pull it over. It’s not all steamed up. I see what’s in the pot and then I pull it back. And it doesn’t stay and get all steamy.”
Storing heavy kitchen items, such as glass baking dishes, was also a concern. “I have no cupboard space in my kitchen because all the cupboards are over my head. And I don’t like things hitting me in the head—except for plastic things, that’s not too bad.” So Brenda uses her hall closet. She hangs coats on one side, but on the other she has “those wood shelving things. So I came up with the idea of putting the cupboard in my closet, and I use it to store my glass baking dishes and those sort of things that I don’t use all the time, but I use quite a bit.” Once again, Brenda is independent because she doesn’t “have to wait for somebody to come and get it out of the top shelf….”
In the bedroom, Brenda uses an off-the-shelf remote control for her fan and her lights. “I get really hot at night, and I just flip on the fan, and it’s wonderful.”
Like most people, Brenda has a remote control for her television. And also like most people, she loses it every now and then. “I kept losing it in bed. It would go underneath the bed or behind the bed, and I couldn’t see it and I couldn’t find it. So I attached elastics to it, and I tied it onto my bedside table. So when it falls on the floor, I just pull the elastic up. And I never lose my remote control anymore.” She recalls the incident that inspired her invention. “I fell asleep watching a show, and I woke up to this really annoying infomercial one night, and I thought, ‘I’m never doing this again.’”
Brenda uses a cart to store her urinary supplies. It “sits up beside my bed at night, so that I can go to the bathroom and don’t have to get out of bed at night. And I just put it all on a cart and then, in the daytime, it’s out of the way. It goes in my shower actually.”
There are a couple of reasons that Brenda is so organized. One is to make it easier for her attendants. “I find the more organized I am, the better it is for me and my attendants. They know where things go, and they know where things get put back. Because when you have attendants you can’t say, ‘Oh it’s somewhere over in that drawer,’ and they spend the hour looking for it instead of doing what they’re supposed to be doing.” The other is that she cares about how her home looks. “I don’t want my house to look like a hospital. I want it to look like a normal home, … like no blue pads or gloves or anything laying around, because I don’t want my family to come over and have to see that stuff.”
Brenda has a number of reachers. She says she uses them a lot, in every room of the house. She also has a special, outdoor use for her reacher. She puts newspaper bags on it to pick up after her dog when she walks him. She uses the plastic bags that cover her newspaper because “they’re long and narrow and I put it all the way into this reacher and I use the claw to pick it up and it works very, very well.” She explains, “We have poop and scoop laws just like everybody else.” And she wants to comply with them, just like everybody else.
Brenda also has a reaching device that her father found at a flea market. “Sometimes I drop pills or something on the floor, and I can’t get them. They will just keep sliding across the floor. This thing has little claws on it. It’s some kind of industrial snake thing, and I can pick up pills off the floor really easily with it.”
Brenda likes to put her creative energy into her home. She notes, “I’ve sewed all the cushions and the curtains and everything in the house.” She is quick to add, “It takes me a long time.” She explains that she operates her sewing machine by putting the foot pedal on the table and pushing it down with her elbow. But that makes sewing very difficult, because “you need both hands to sew with.” She is looking forward to getting a device that should help her sew more easily. Through her involvement with her local agency for people who have spinal cord injuries, she found out about a program that helps people with disabilities adapt equipment. Brenda explains, “If you have some kind of craft or something that you want to do, and there’s an obstacle in the way, and there’s something they can do, they … will try to figure it out for you. They’ll build it and design it. You just have to pay for the materials.” For Brenda’s sewing, that program is making an “adaptive device that you can put the foot pedal in, and it extends the pedal part, so that you use your elbow [to operate the pedal] … and use your hand at the same time.”
Another expression of Brenda’s creativity is painting. She uses an easel that she adapted to put on her tabletop. “I just got a kid’s easel…. My dad cut the legs off, and I put it on the table.” With an adult-sized easel, she was wasn’t able to get close enough to paint, but with this one she can “get under my table and get close enough to the easel.” Brenda hasn’t quite figured out how to paint outside, which would be nice, because she lives near a lake. Her adapted easel wouldn’t work, but she notes, neither would a regular easel. She is confident that she will come up with something eventually.
The paratransit in Brenda’s area is very inconvenient, so she wishes she could afford to buy a vehicle. She explains, “Arranging rides is just unbelievable…. I book two weeks in advance and it still takes me fifty-three minutes to get home from a ten-minute bus ride.” The problems with transportation make other goals in her life more daunting. She feels she needs more schooling to get back into the workforce, but the college she would like to attend is on the other side of town. She figures, “Chances are … it could take me quite a while to get to school.” She says, “I miss working full-time. I just don’t know what I want to do. And volunteering helps because it helps me figure out what kind of schedule I’m going to need, that kind of stuff…. I’d have to have a job that was flexible as far as hours go…. But that, that’ll be a hurdle that I have to overcome.”
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Brenda describes herself as a “problem-solver.” She says her approach is, “‘Okay, this is a big problem. I need to fix this.’ And I try to come up with an idea to do it. Because I’m a creative type you know. But I’m more than happy to share [my ideas] with other people too.” She has found a number of solutions for those “little things [that] make life a lot easier,” such as organizing her space and finding simple solutions for everyday tasks, like the extension mirror for cooking. She also takes full advantage of the technology that she does have to do the things that are important to her. When the time comes, Brenda is determined to get another electric chair somehow, even if she is not eligible for funding.
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