Since having her accident not long after her 18th birthday, Sarah has completed a university degree in mass communications, got married and is now raising two daughters. Being a stay-at-home mother has presented its challenges, especially when it comes to finding commercially available assistive technology to suit her needs. Adding to this challenge is the fact that all of the sensation in her body has returned. So Sarah’s equipment must be comfortable, adjustable and minimize the number of transfers, so that she has enough energy to tend to the needs of her growing kids and help out with her father’s business part-time as well.
Sarah’s father and her husband Pete have either developed or modified most of the equipment she uses, to suit her particular needs. From small projects, like making modifications to her wheelchair and creating some devices to assist in caring for her children, to overseeing the building of their accessible home and creating an entirely unique way of getting into and driving her vehicle, Sarah and her family have worked together to create an environment that suits everyone’s needs.
Sarah and her family have also persevered together to get the necessary funding from government programs to help purchase her equipment. For example, when applying for equipment funding to enable her to go to university she says, “I was only out of rehab a year and you really don’t know what you can do and what you should have … and my dad did, so he took [the funding agencies] to the wall.” Sarah encourages everyone to “push for what you want … push government agencies and never say no.”
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Sarah uses a manual chair on a daily basis. She chose her first chair while in rehab, based on recommendations from her clinicians and trying out the chairs available at the time. She liked it more than the others because it was simple in design and its parts were adjustable and removable. Since her accident 19 years ago, she has had three manual chairs, all from the same manufacturer. Sarah looks for a comfortable and unobtrusive chair that is available in a wide range of colours, and has not felt the need to look elsewhere. She admits, “I’m sure there’s better chairs … I haven’t even tried other chairs. I stick with [this brand] just because I like it.” She has moved from a folding chair to a rigid chair, “because it was considered more safe for driving,” with the type of lift and restraint system she uses.
Sarah chose to put high-pressure air-filled tires on her chair recently because her friend recommended them and because she was not happy with the solid tires she had. She says, “They were softer and … it was difficult to wheel with them.” With her new tires on, “they’re very easy to wheel with … I can really glide … outside too.” The high-pressure tires have some drawbacks as well though. “You have to refill them about every month or two and they don’t stay hard for very long.” Sarah purchased an electric air compressor to keep the air pressure up. She finds that, even though her new tires have next to no tread compared to the old solid tires, they have no less traction in the snow that covers the area where she lives in winter. “Because [the old tires] got caked in ice anyways. It's very difficult to wheel either way. It's just ugly wheeling in the snow, no matter what you have.” Due to the snowfall, she has also discarded her armrests and clothing guards. She says, “well I had the guards on and they just accumulated snow, so it all caked up behind my bum and melted and then froze again.”
Sarah uses a sling back that comes standard with the type of chair that she likes, and just adds a piece of sheepskin for comfort. She also prefers a lower back. “I just find [them] more comfortable … I find that I can’t sit up well [with a high back] because it leans me so far forward.” She recalls an experience she had when she got her first chair: “When I ordered it [the clinicians] wouldn’t allow me to get one with the back two inches lower because they said I was a quadriplegic, I needed that support and this is what I was going to get. So I ordered it, accepted it, and my dad cut [the back] down.”
Sarah is not entirely satisfied with her newest chair. She went with a new wheelchair vendor for her most recent chair and she feels that it does not fit her properly because either they measured her incorrectly, or the chair she received was not the chair that was ordered for her. At first, Sarah thought the problem was the usual process of getting used to a new chair. “It took me about six months to figure out what parts of it weren’t comfortable. You know when you get a new chair, you’ve got to adjust so many things.” She has tried to shorten the length of the seat base, going so far as to take it to a seamstress, but she is still not comfortable. She now figures she has no choice but to wait until she is eligible again to purchase a new chair through the government funding program in her area.
Sarah is also not pleased with some of the necessary steps one has to take to get government funding for wheelchairs. Her previous chair was quite worn and beyond repair when she decided to start the process of getting a new one. When she found out she would have to wait up to two years just to get an appointment with the seating clinic at her rehab centre, she decided to hire an occupational therapist in private practice to write her a prescription for a new chair. She says, “It was a five minute thing … I don’t think it’s necessary to have someone come in and tell me I need a new chair, or to pay to have a prescription from them.”
Sarah owns a power wheelchair, but she hasn’t used it since she was at university years ago. She says, “There were a lot of steep hills [on campus], that I just couldn’t manage with my manual.” She continues, “I hated using the electric. It felt really unnatural and plus, you lose your strength.” Now, Sarah can use her manual chair practically anywhere with the assistance of an electric wheeling mechanism, which her father invented, that they call “the ramp rat.”
This ten pound device, which clamps onto the chair frame, uses a motorized wheel connected to a motorcycle battery to help propel Sarah up steep grades that she would not be able to climb on her own: “It gives you the extra boost you need to get up.” When turned on with an accessible toggle switch, the wheel makes contact with the ground and starts spinning; when not needed, it retracts under the chair “like an airplane landing gear.” Sarah usually takes the device off during the summer months, when she doesn’t need assistance to get through ice and slush. She and Pete sought out an area to live with no hills, so “I can wheel around the neighbourhood and go for walks with the kids, where I don’t have to use [the device].”
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See Sarah demonstrate the lift for accessing her vehicle. Choose a format: |
While in rehab, one of Sarah’s chief goals was to drive her own vehicle again. She was inspired by others she saw driving vehicles from their wheelchairs, and she knew she would be able to do the same. Sarah was told that she would have to go through the driving assessment and lessons offered through the occupational therapy department at her rehab centre in order to qualify for funding to modify a vehicle. But she resisted because she found the process to be “outrageous … there’s more people saying ‘this is what you need…’” Instead, she learned to drive on back roads near her home, with her father’s help. She then went to a standard testing facility to take her driving test. She admits that the process took a long time, but in the end she got her driver’s license and got the funding agency to pay for her modifications as well.
Sarah quickly learned that she would need to increase her physical strength for driving. “I mean when I first started I would barely last five minutes driving … arms, shoulders, sitting up … it was really difficult.” All of the hard work was worth it though, for Sarah: “[Driving] gives me freedom. It allows me to be responsible for my kids. I take them to school or pick them up or we go shopping.”
Sarah knew that she didn’t want to have to transfer in and out of a car, but she didn’t want to drive a “big and bulky” van either. After discussing her predicament with her dad, they decided that she would buy a sport utility vehicle and he would modify it to suit her needs. After a lot of trial and error they designed a unique lift system that she uses to this day. With the push of a button, the driver’s door opens and a lift comes down to a resting position on the ground. She approaches the lift from behind, parallel to her SUV, not toward it from the side, like most standard lifts. So instead of needing a lot of space beside the vehicle to get onto the lift, she only needs “the width of the [driver’s] door.” Once she is on the lift, her wheelchair gets clamped down electrically, and then the lift pulls her into the driver’s position and folds up beside her.
Sarah uses a commercially available hand-operated gas and braking system. She finds “pulling back for the gas and forward for the brake … more comfortable, more natural to use,” than other systems she has tried. For turning, she used a spinning knob on a standard steering wheel for several years, but switched to a tripod because, “if my hands get hurt, my fingers spasm straight and I didn’t feel like I would always have a strong grip on [the knob].”
Sarah and Pete looked for a new home location that was both level enough to make it easy for her to push her manual wheelchair, and had the right amenities to suit the needs of a family with two young children. Then they approached the builder who was erecting the homes in that neighbourhood, and asked if he would build a barrier-free home for them. Even though he had never built a wheelchair accessible home before, he was interested in the challenge. Sarah and her husband picked out a single level model from the builder’s selection of home styles and worked with him to alter the interior to suit Sarah’s needs. Pete recalls, “We had to spend a lot of time on the contract. Everything was detailed. Pages and pages of amendments to the standard contract of every single little thing we wanted that we could think of.”
The family had lived in a barrier-free co-op home nearby and felt that the layout worked well for them, so as a starting point, they measured the heights of counter tops and the width of the entryway, among other things. They also spoke with a family who had had a barrier-free home built for them, about the things they wished they had done to make it more accessible.
Sarah and Pete left out most of the walls to make an open-concept interior and had sliding doors installed instead of swing doors. They also specified that the bathrooms should have no raised thresholds and the windows should be lower than originally specified, so Sarah could see out of them. The bathroom and kitchen were also redesigned to meet Sarah’s needs: “My bathroom’s off the bedroom and we made it huge, with a wheel-in shower and lots of space underneath the sink…. In [the kitchen] we lowered the counter and [put in] a side opening oven. And we had slide out shelves and drawers put inside the cupboards.” They lowered the light switches, raised the electrical outlets and installed hardwood floors throughout. They also asked that the stairway leading to the basement be made wider to accommodate a stair lift that they would install in the future.
One of the biggest challenges Sarah and Pete faced was to have the main floor of the house low enough to the ground to permit level access out to the front path, the rear yard and to the garage. They had looked at some other barrier-free homes and “saw great big ramps snaking across the front lawn. Right away we knew that it was not for us.” They decided that they wanted the house low enough to the ground that there would be no stairs or ramps. Everyone said it couldn’t be done—except the builder they chose. He assured them that he could lower the house to their specifications.
They gained approval from the city building department to lower the foundation walls and made sure that they had their builder’s assurance in writing that he could do the work. Pete and a family friend, who is an expert in the field, went to the site the day before the foundation was about to be poured. “It was staked out everywhere, everything was written on the stakes. I couldn’t make head nor tails of it.” Their friend read the stakes on their house and their future neighbour’s house and told them, “‘They haven’t done anything different.’” Sarah and Pete immediately put a stop work order on the foundation pouring. Pete adds, “we threatened to pull out [of the building project] unless the builder solved the problem.” The builder resisted at first, but eventually he worked with an engineer and Sarah and Pete’s friend to figure out how they could lower the house, still follow the building codes and not increase the cost.
In the end, Sarah and Pete got what they wanted and only lost about two inches of basement ceiling height. They also met with resistance on some smaller issues. Pete says, “I think it’s just easier for [the builder] to say no, it can’t be done.” With a little creativity and perseverance, they got almost everything they wanted and are very happy with their home.
Sarah counts their bedroom design and her hospital bed as key assets to her independence. We added three feet to the back of [the house] as well, to make a bigger bedroom because I park a chair on each side of the bed.” She transfers into her commode chair when she gets up in the morning, then, after showering, she returns to bed, dresses, and transfers to her manual chair on the other side. The bed itself helps her significantly as well: “I couldn’t [transfer] without sitting the bed up … that helps me be a lot more independent, to get in and out of bed myself.”
After the house was completed and they moved in, Sarah tried to get funding from a government agency to set up a home office in their basement to pursue her part-time job. Most of what she asked for was denied, but the agency did fund a stair lift so she could at least have access to the basement level. The lift’s track is secured to the wall alongside the steps and the attached platform stays in a vertical position against the wall when not in use. Sarah likes this style of stair lift because she can wheel onto the platform to ascend or descend and does not need to transfer.
They attribute the success of getting the house built to their expectations to three things: keeping records of all correspondence, doing a lot of research and getting involved in all aspects of the designing and building process. “We documented everything in the process, we followed everything up in writing. We kept the lawyers involved.” Pete continues, “A lot of builders will tell you that you’re only allowed [a few] visits…. Our builder said you can go over whenever you want. I would advise people to visit when major parts of the construction are being done. Because the only things that were done right the first time was when Sarah or I were on site … you have to be hands on all the time. They have few regrets, but they know now that if they were to build again, they would not work with a builder who specializes in erecting entire subdivisions. “I’d just get my own builders, my own subcontractors and I’d do it all … and then nobody’s going to tell you what not to do.”
When Sarah first thought of being a parent, she admits, “It was scary. I wasn’t sure that I was going to stay at home and be the primary caregiver. I anticipated not being able to look after a baby and I thought that I would probably need a lot of assistance, or not be solely responsible for them at all. And I even considered my husband staying home with them and me going to work.” She continues, “It progressed slowly. When I first brought the baby home my mom stayed with me for three weeks while I tried to do everything. And the more I tried, the more I realized I could do. And how responsive a baby is to what you can and can’t do.”
When Sarah found out she was pregnant for the first time, she immediately started to research what equipment was available to assist her in taking care of her child. Some items were available commercially or through the local rehab centre, and family members made others for her. The first device she found was an accessible crib. She remembered that the engineering department at her rehab centre was developing one during her stay there, so she arranged to borrow it as part of a research project that was studying its ease of use. “It was the easiest thing to get, and a big relief,” she says. She found that some manual dexterity was needed to use the crib, so her husband modified it further to make it easy for Sarah to take the baby in and out of the crib.
To make a changing table for the babies, Sarah started with a desk she used while attending school—she knew that was the right size and height and she could manoeuvre herself under the desk easily. To make the table comfortable, she “just added a rubber pad to change the baby on.”
When it was time to play, or time to nap, Sarah found she needed a place to put her babies where they were safe, yet easy to get to. “I couldn’t ever put them on the couch or the floor … it’s hard to hold a baby that long.” So her father modified a playpen first by mounting it on table legs so it was the right height for Sarah. Then, “he put a zipper in the mesh so that I didn’t have to lift them over the top and so I just unzipped the mesh and slid the baby in and then zipped it up again.”
In order to get around independently with her children, Sarah’s father devised a mechanism to securely hold a baby’s car seat beside her when in the driving position, so she could drive and watch the babies simultaneously. Sarah could put her daughters in the car seat and remove them by herself. Before they could balance on her lap, Sarah used a sling that wrapped around her shoulder and waist, to cradle her babies safely while wheeling. “I just tucked them in the sling and I could carry them everywhere with me.”
Sarah uses a motorized leg bike to avoid getting blood clots in her legs. “I had blood clots fifteen years ago and I’ve had them twice since, so I just try to increase the circulation in my legs…. I do it about fifteen minutes a night.”
Although the leg bike was designed to be used alone, Sarah likes to have someone around when she is attached to it. “My legs spasm too much … [the leg bike manufacturers] claim that it’s designed to be used independently, but it doesn’t stop if my legs spasm straight and I tend to push the machine away so I can’t reach the switch. I think it would be way too dangerous to use it myself.”
“Push for what you want,” Sarah says. “The main thing is, it’s difficult when you’re newly injured to know what you want and to be strong about it … push government agencies, you can’t accept no. You have to keep writing letters. You have to push and push.”
Sarah has had some negative experiences with the rehab professionals she has worked with: “They tell people who are newly injured that this is what you’ve got, accept it, and you’ll never get any better. And I find that, not only is it the wrong approach, but it stops someone from working harder to achieve more.”
Sarah concludes by saying, “I think that it’s the best thing that you have to work at it yourself … the more you try on your own, the more you see what you can and can’t do. There’s things you can work harder to achieve like strength, or just do something in a different way that’ll make all the difference.”
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