Catherine was a teenager when she was injured, so her primary goal at that time was to finish high school—which she did. She also went on to get a university degree in political science. When she was first injured, Catherine was sure that marriage and a family “would never happen” for her, but she accomplished that too. She now lives with her husband and two children in an accessible home in the country. Her goal in building the house was complete independence. In fact, she feels all of her assistive technology makes it possible for her to be independent. She says, “It’s just nice to be able to not have to depend on anyone.” She also came up with some innovative ways to look after her daughters when they were babies.
Catherine has a full-time job, made a little easier by a flexible working situation—she can often work from home via the Internet when she needs to. When she does go into the office, she drives an adapted car. In her off hours, Catherine uses a hand cycle to go cycling with her kids. She is also an avid wheelchair basketball player. Finally, Catherine is looking forward to trying sit-skiing now that her daughters are getting old enough to learn how to ski.
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When Catherine and her husband built an accessible home in the country, they had a number of priorities in mind: safety, complete independence for Catherine and room to grow because they were planning to have a family. They found their contractor in a small company. Catherine describes him as “really willing to work with us in building ramps and so on and everything that we needed to make this house accessible.” Then they found a bungalow design that they liked and took it to an architect, recommended by the contractor, who designed the house for them based on their drawings and specifications.
The design included a number of features to ensure Catherine’s independence. She wanted to make sure that, “If I was ever here alone, I wouldn’t be stuck.” Catherine has a few options for entering and exiting the house. She explains, “The patio doors at the back don’t have a rise. It’s a flat exit.” Through the patio doors, there is a big deck with a ramp to the yard. She also has ramps at the front of the house and in the garage. All of the ramps are built to a 12:1 ratio so that they are not too steep. (For every foot of vertical distance they go up, there are twelve horizontal feet of ramp.) To get this much ramp into the garage, it was necessary to have it double back on itself with a turn in the middle. This “switchback” ramp is fairly wide so they built the garage itself extra wide to accommodate both it and a car. For emergencies, they also made sure that the windows were low and wide enough that Catherine could pull herself through if she had to get out that way.
One thing that Catherine would change is the landscaping around her house because she finds it “very, very difficult” to get around the outside of the house. She explains, “I can’t wheel around to the outside of the house without having to wheel through grass and stuff.” She wishes they had landscaped the front of the house by installing patio stones and a pathway that would allow her to go all around the house. She says, “So I would complete the outside much more than I did. And I would do it in the time that we had the house built rather than later, because it’s much more expensive [to do it later].”
For easy wheeling, they installed hardwood floors throughout the house and ceramic tile in the kitchen. Catherine points out that the cost of installing floors that are better for wheeling is tax deductible.
All the main rooms, including a laundry room, are on one floor. Catherine says she really likes having the laundry room on the main floor. “It’s so much easier than having to haul stuff up and down.” She has a top-loading washing and front-loading dryer, but she would like to change both. She explains, “The front-loading dryer door folds down towards me so it gets in my way. I would change it. I would have it swing out.” She would also prefer a front-loading washer, especially now that there are models available with larger tubs. She notes that up until now, “The front-loaders were really small. You can only wash two bed sheets at a time.”
Even though the laundry room is on the main floor, Catherine does need access to the basement, especially since the children arrived because they play down there. The television and stereo are also there. Back when they were building the house, Catherine decided to install a wheelchair lift to the basement. Because this is such an expensive item, she went looking for funding to help pay for it. She had quite a difficult time negotiating with the government funding program that was designed to help people with the high cost of making accessibility modifications to their homes. “They said, ‘Well, you have to have a reason to go to the basement. You can’t just have a lift installed without a reason.’ And I said, ‘Well, what about just wanting to be able to access the whole house?’ They said, ‘That’s not a valid reason.’” Eventually, Catherine funded the lift herself.
The halls in the house are four feet wide, which allows Catherine some turning space. They also installed pocket doors in all but the children’s bedrooms. These doors, which slide on a track into a space inside of the wall, seemed like a good idea at the time, but Catherine finds that sometimes they don’t slide all the way open and she doesn’t see them and smashes into them. She says that one time she “knocked it right off the track. And they’re a nightmare to repair.” She would like to find a better design for a pocket door because she likes the concept.
Catherine was concerned about the appearance and resale value of her home when she considered how to modify the kitchen. They lowered the counters by two inches, but they didn’t put any kick plates at the bottom of the doors. Catherine says, “I didn’t want the house to look like a house for someone with a disability.” But if she had to do it over again, she would put in the kick plates “because a lot of the doors are scratched from my wheelchair rubbing against them.”
Lowering the counters introduced one complication—the dishwasher. Catherine explains, “I had to pull out the little wheels that go on dishwashers and take out a bit of the floor, and let it kind of fit in a pocket so that it fits under the counter space.”
For cooking, Catherine loves the wall oven. She doesn’t have to bend over and risk losing her balance when she is taking things out of the oven. She also has counter-top stove that she can wheel under, which means she can reach all four burners easily. She can reach the switches for the elements without having to reach across a hot element because they are on the side of the stove instead of the back. For even greater safety, the elements are halogen elements, which means “you know right away that it’s hot because it goes hot right away.” There is also a light that stays on until the element is cool enough to touch.
The refrigerator is the type with the freezer in a drawer at the bottom. She used to have a side-by-side, but she prefers this one because the door “swings wide, wide open so you can get right in there and take a look around.” The only problem is that the top shelf is out of reach, but that is true for pretty much any refrigerator. Catherine also sometimes has trouble reaching things in the pantry. She finds she can’t get things from the back and has to recruit the help of her daughter. Even her daughter has to get down on her hands and knees to get things from the back of the pantry, so that is something Catherine would definitely change. She says she should have drawers that pull out rather than stationary shelves.
In general, Catherine is very satisfied with the results of their efforts to make an accessible home, so much so that she doesn’t often think about them. “Everything has been fantastic. People are always surprised at how well we do in our house. Everyone always asks me, ‘Do you cook on your own? Do you do laundry on your own?’ And I’m always surprised by those questions, but I never really think about what we’ve done to make it more accessible.”
Catherine had the advantage of having a friend with quadriplegia who was also raising children. This friend had an inventive father who put the baby’s playpen up on a table and built a zipper into the side with a clear plastic sheet. Then her friend could open the zipper, lift the flap and put the baby inside the playpen without having to bend down. He did something similar with the baby’s crib. They put it up higher and had a Plexiglas sliding door rather than rails that you have to raise up and down. Catherine just used a regular crib, but it had a handle at the bottom of the rail that allowed her to lower the rail with one hand. Then she put the mattress at the highest level, for as long as she could, so that she could just reach in and grab the baby.
To carry her babies, Catherine put them on a pillow on her lap, until they got too long. She found that they both learned very quickly to sit up straight on her lap where she would secure them a sling-like bag. Catherine compares it to the bag that the proverbial stork uses to bring babies. “It goes across your back and around your shoulder … and it would be like a seatbelt.” But she was still “petrified” at first when it came time to take her baby out on her own. She says, “I remember my first day out with [my daughter] on my own…. I came home and I called everybody because I made it. I was so excited about the fact that I had actually gone out with her.” Apparently, Catherine wasn’t the only one with concerns. She recalls, that despite her safety measures for taking her babies in her wheelchair with her, “I’ve had people try and take them off my lap in the mall. I had one lady tell me in the mall that I shouldn’t be doing this and she wanted to try and carry her for me.” Catherine remembers that it was hard to find support at that time. She says she has since found some web sites that are for parents with disabilities, but the Internet was fairly new when she had her first baby. At that time, none of the parents using the chat rooms had disabilities.
One idea that she got from her friend with quadriplegia was to use a desk for a change table. She explains, “I bought them both a desk and I would be able to roll right under the desk. And they would be on a pad in front of me, and I would lie them down there to change them. And that worked fantastic. And now they have a desk that they can use for their bedrooms.” She says that it’s these little things, like the desk for a change table and the sling for carrying her babies in the wheelchair that made her life as a young mother so much easier.
Now that Catherine’s daughters are a little older, the whole family likes to go biking together. Catherine has a three-wheel hand cycle, which “has been great because they’re old enough now that they’re riding two-wheelers…. It’s good exercise and I can keep up with them.” Three-wheel bikes can be pretty pricey, so Catherine waited until a demo model went on sale and bought that one. She says it looks like a wheelchair with three huge wheels, one of which is out in front. It has a two-hand crank. There is a footplate under her and she sits up quite high in it, more like a regular chair than some of the low hand cycles she has seen. She says she chose this model “because with some of the lower riding ones you would have to sit with your legs out straight and I don’t like that…. I’m much more comfortable sitting with my legs bent rather than out straight…. My legs are quite sensitive to hyperextension and I get really weird feelings in my toes.”
There is a drawback to this type of hand cycle though. Catherine explains, “The weight’s all at the back so going uphill is a bit of a challenge, but it’s much more comfortable in the long haul.” Also, transporting the hand cycle takes some work—it is a bit of a “monster to bring around anywhere.” That is one of the main reasons that Catherine is planning to get rid of her car and buy an SUV.
Catherine’s girls are also old enough to start taking skiing lessons in the next year, so she is planning to take up sit-skiing. She tried sledging a few years ago and really enjoyed it. She figures that she will go for the bi-ski, as opposed to the mono-ski. There is a ski club in her area that caters to people with disabilities.
Catherine really enjoys wheelchair basketball. She started playing over ten years ago. She uses a special titanium chair, which she describes as “much lighter” than her everyday chair. The spokes are a “kind of clothesline wire covered in plastic and it makes the wheel really, really light. And it’s narrower than my everyday chair.” The wheels are also 26 inches, larger than the 24-inch wheels on her everyday chair. She explains, “I get more of a push on the wheel because it’s a longer stretch. The 26-inch wheel also gives you more height when you’re sitting.” In fact, Catherine’s basketball chair is “maxed out at 53 cm at the top” and she uses a three-inch foam cushion because she needs the height. She explains, “A little person like me, who’s five nothing” needs her chair to be the maximum height allowed in wheelchair basketball. She uses a 15-degree camber on her wheels for easy turning and has a “fifth wheel” on the back to prevent her from flipping over backwards when she’s playing. The back is only six inches, rather than the ten-inch back she has on her everyday chair. The smaller back is good for basketball, but it is not very comfortable. “I get a sore back when I finish playing,” she says.
Catherine has had experience with various types of adapted vehicles during her 20 years of living with a spinal cord injury. She had a van with a lift, but that didn’t work out very well. After the lift was installed, the sliding door wouldn’t close all the way. She explains, “The lift just fits in the door. And they have to, I guess, push it back so far that it doesn’t seem to catch its seal again.” She has a story about being frozen into her van one time. She couldn’t get out because there was ice in the track of the door. She recalls, “I was driving around in the van trying to warm it up so that the ice in the track would melt, but it wouldn’t melt.” Her husband had to rescue her. “He had to come and haul me out through the back.”
Although she recognizes that many people use lifts with no problems, Catherine seems to have bad luck with them. She says, “All the lifts I’ve ever had have always had problems.” She got to the point where she just “didn’t want the worry of a lift” and she bought a 4-door car. She says, “I manage to pull my chair apart and throw it in the front seat.” She figures it’s good exercise, but she finds it can be hard on her shoulders if they have just taken “a beating” in another activity like basketball. And she admits, “there’s a few nicks in the car” as a result of having to bring in her chair as she does.
Catherine uses hand controls to drive. The type she uses “has the bar across and then it’s like an L.” She pushes down on the “L” for the gas. She likes these better than other hand controls she has used because “you can just rest your wrist on it and still drive, hold onto the steering wheel and you can leave one hand free. So it makes it a much more comfortable drive where you don’t actually have to hold the hand control in the down position with your whole arm—you can just use your wrist. And the weight of your arm on it gives it a more comfortable feel.” She has used the kind of hand control that you pull for the gas and push for the brake, and she still must use them sometimes when she rents a car. She describes them as “brutal … because you really have to hold onto it and the shoulder really hurts after a while.” Finding a rental car company that would install hand controls was a bit of trial too. One time, she lost the use of her car when snow fell off a roof and smashed the windshield. All the car rental companies except one needed two to three days’ notice to install hand controls. With her busy lifestyle, she couldn’t wait that long. One was able to install hand controls in three hours. Needless to say, that is the company that gets Catherine’s business when she needs to rent a car.
Although Catherine needs to put her everyday chair in the car when she drives, she still prefers a rigid chair to a folding chair. She finds a rigid chair “just feels a lot stronger and sturdier…. I found that with the folding chairs, when you moved along uneven surfaces, you could really feel it shimmying back and forth. And it would sometimes fold in a bit on you and stuff, if it’s not built right or something goes wrong with it.” Other considerations for Catherine when choosing an everyday chair: “It has to be light. It needs to be adaptable to different needs.” For example, she can adjust the dump in the back of her chair, she can remove the side guards and she can easily adjust the camber. She can also adjust the back height when she gets uncomfortable. For seating, Catherine has always used air-filled cushions.
For Catherine, there is no substitute for experience when it comes to buying and using assistive technology. She compares it to being a first-time parent. “It’s like having a baby, right? The first time you go out with them you bring everything. You know, you bring the huge thing of changing wipes; you bring all the diapers you can think of. You bring five different bottles of formula and you’ve got this humongous bag, right? And then the second one comes around and you don’t need half the stuff that you did the first time. So instead of carrying a humongous bag you just carry a small bag with one or two things in it that you need to change the baby and that’s it…. And you realize that only from experience, right?”
Catherine has advice for funding agencies: “Be more realistic.” She feels that the funders don’t understand the reality for those who must use the equipment every day. She says you have to “fight tooth and nail” to get health professionals and funders to approve the use of lightweight chairs, but “the reality is, if you have a lightweight chair it makes your life a hell of a lot easier.” She also wishes there was funding for sports equipment because, “you try to get into all kinds of recreation programs and all these things to keep yourself fit, but you know, a new basketball chair costs you five grand, a new bike costs you three grand. And there’s no funding available for those kinds of things.” She was also frustrated by the length of the process for getting funding. Ultimately though, Catherine is philosophical. She says, “It’s a funding program. I guess you have to take the bad with the good.”
Catherine also recommends speaking “with people that actually use the things on a day-to-day basis.” And she directs that advice to consumers and health professionals alike. Even if people are isolated, there are a number of resources for them to get the information. “If you don’t have anybody around that’s in that situation, that makes it a bit more difficult. But you know, there’s a lot of information on the web now. There’s tons of links to all kinds of peer support groups.”
As to advice from professionals, Catherine has noticed that it seems to be influenced by the needs of the institution and the pressures in the system rather than by the needs of the individual. She’s noticed a tendency “where everybody gets checked out [of rehab] with the exact same thing…. Because they’re paraplegic, they get all these types of things. And then being able to try and find your own independent way of doing things, it’s not strongly encouraged because, I don’t know, maybe they don’t have as much time to get you through the system, through rehab and get you out.” She says she has run into many professionals who are “really, really good and know what’s going on in the community and know what’s available.” But sometimes she thinks, “They need to be more informed and … able to talk to people who have spinal cord injuries and are living with it.”
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