Since his injury, Jack has been able to complete three master’s degree programs, keep a full-time job, and manage his personal care system. In order to maintain his independence and maximize his efficiency, Jack uses a combination of high and low-tech devices to accomplish a range of everyday tasks at home and at work.
Although Jack perceives technology as “a tool that will help you,” he is quick to add that “it’s not a cure-all.” When he was newly injured and first learning about assistive devices, Jack recalls sometimes feeling “let down” by their limited potential. But he has since found ways to make technology work for him and he now views it as a means to an end.
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Following his injury, Jack spent many years in school and he has completed graduate degrees in Divinity, Education, and Public Health. Today, he works full-time for the local government and teaches college part-time. Jack is physically unable to write and he got through his first degree program by using an electric typewriter and a mouthstick. Jack says that correcting an error on the typewriter was “absolute hell.” He recalls managing the writing demands of this program by dictating a lot of his work to a Personal Care Attendant (PCA), and he believes that he couldn’t have graduated without his PCA’s help.
While working on his second degree, Jack began to use a computer. Unable to write during class, Jack managed his note taking by combining his own mental notes of salient points during lectures, with his classmates’ handwritten notes. He explains, “Folks in class took notes for me … I took notes in my head … when I read, I’d take notes on the computer … put down the page number of everything. Take very concise notes of everything.”
The Internet made working on his third degree easier. Turning pages with a mouthstick can get tiring and the Internet allowed Jack to download articles and read them on the computer, and cut and paste quotes directly onto his document. For exams, Jack preferred to use the computer and “just type away.” The alternative was to do exams orally and he says, “I don’t test well orally.” The computer and the Internet increased Jack’s efficiency and he was able to go to school while maintaining a full-time job.
During his rehabilitation, a group of retired engineers worked with Jack to make him a mouthstick. He said that the original one was made of metal and, although it was “big and bulky,” it was functional and lasted 13 years. Jack uses his mouthstick at home and at work to accomplish many tasks independently, including typing and accessing his door opener and his various remote controls.
At one time, Jack was uncomfortable with the idea of using a laptray. He opted to have “cuffs put on to the arms of his wheelchair,” securing his hands in case of spasms. Eventually, however, Jack found that the laptray was much more functional. He says that “looks went out a long time ago” and now he uses a laptray full-time. Jack says, “It’s my desk. I keep my notes on it … food, water, you name it.… It’s a choice.… I don’t care how it looks, I really don’t.”
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While in rehab, Jack got a revolving bookstand that is a carousel or “lazy Susan with four stations on it to hold books.” Each book is secured by three clamps and to turn the pages, Jack slips the mouthstick under the page on the right, flips it over, then slides the page under the clamp on the left side. Having four of these holders on a revolving base allows Jack access to more than one book at a time.
When Jack was in graduate school, he learned about voice recognition and he got the opportunity to try it through the university. He says that the first version was “horrible” and the second was better, but still inefficient. Since then, voice recognition has come a long way and Jack now uses both discrete and continuous speech products to accomplish some tasks. Jack still prefers typing with his mouthstick though, because for him, “it’s the same as writing” and he finds he makes fewer errors.
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Part of the difficulty with voice recognition is that it requires a “different set of skills.… Written speech is much more formal.” When writing a term paper or formal document, Jack prefers to use discrete voice input because it requires him to pause between words, as if he is writing. Jack uses continuous speech for “a letter or something fun,” because he finds that he loses his train of thought when he has to go back to correct errors. Also, he says, “because of lung capacity, my voice doesn’t stay the same level. It doesn’t project the same.… With diminished lung capacity, you can’t help slurring some of your words.”
Because typing with a mouthstick gets tiring, voice recognition offers Jack an alternative. For him, speed and efficiency are critical, and he uses these options to maintain his productivity. Jack says, “I’ve got the stick, I’ve got voice recognition. Between the two of them, I can do it.”
Jack’s job is to develop policies and procedures on disability access for the local government. This work involves a lot of writing and meetings. During meetings, he relies heavily on his memory and says, “I don’t think they get it sometimes, I can’t write. And they think I just remember everything.” Jack finds that he has to be very clear with his coworkers about this misconception, telling them, “If you want me to know it, write it down.”
Because Jack’s office is open-concept, background noise interferes with his voice recognition software and speakerphone to the point that he cannot use either at work. Jack has tried to deal with the computer issue by becoming proficient in using the many features and functions of his word processing program. While this strategy enables him to compensate for his typing speed and keep up with his co-workers, he has to access the keyboard with his mouthstick. He believes he could be more efficient and says, “I don’t have enough staff support to be as effective as I would like to be at my job.”
Similarly, as an alternative to the speakerphone, he has a gooseneck hooked to his desk, which holds the telephone receiver up for him. Activating this system with a switch, Jack dials the number with his mouthstick and places his ear to the receiver and talks.
Jack keeps his mouthstick next to the gooseneck near the keyboard, but because his workstation is not curved, he sometimes experiences difficulty reaching “across the space.” He believes that a curved workstation would be more ergonomic and would improve his efficiency.
Handling paper is a major issue for Jack at work. He says he has “paper strewn everywhere and what I do is pack them in stacks and when I finish with one, I throw it on the floor with my stick.” Jack takes advantage of email to keep the amount of paper he has to contend with to a minimum: “If somebody wants to edit something, I’ll say, ‘Well, send me what you want changed in the attachment. Don’t just write it down for me.’“ For similar reasons, he prefers to deal with questions through email wherever possible: “Otherwise I have to go from the phone to the computer, type down their number, type down their question.” Finally, Jack’s electronic document handling strategies permit him to fax documents to people directly from his computer instead of having to ask someone to fax it for him.
In addition to a live-in PCA or roommate, Jack also hires others privately to come into his home to help him with activities of daily living such as getting in and out of bed and showering. He likes the control of hiring his own PCAs rather than going through a government-managed program, and appreciates the flexibility of the system he has in place.
Due to his spasticity, Jack does not use a lift to transfer in and out of his chair. Instead, he prefers to have his PCAs transfer him manually. He became accustomed to a particular one-person transfer while in rehab and says that, for getting into bed, he has even had “petite women do the transfer.” Jack says that, because of good body mechanics, this procedure is “very safe, I’m right next to the bed. They’re really just doing a four inch movement.” Getting out of bed is more difficult and, for this, he relies on his bigger, stronger PCAs. Jack likes the manual transfer because using a lift is time-consuming and cumbersome. He says, “You have to hook everything up. The lift is just an extra thing in the way. Also, I travel a lot and I can’t bring a lift with me.”
Jack recently got an Environmental Control Unit (ECU), which is controlled by voice through his computer. He has not yet begun to use it, but like his PCAs and his various assistive devices, Jack believes that the ECU will offer him options in meeting his needs and a greater sense of independence. Jack plans to use this system primarily from his bed to control the lights, telephone, fan, and heat. Jack uses a baby monitor to communicate with his attendant at night, but says he doesn’t like waking him up to adjust the temperature: “It’s great to be able to do it on my own.” He expects the ECU to give him more freedom at night when his roommate sometimes isn’t around: “If he’s out late or if he’s away for a night and that sort of thing, I don’t want to have somebody here.… If I need something, I’ll call a neighbor or call a friend if it’s a real emergency. But something like the heat or the fan, I’d just rather be able to do it myself.”
When Jack was injured 16 years ago, he says there was a “sense of the high-level quads, there’s not much you can do with them … even in ‘84, I was a rarity. They had no concept what to do with me. The rehab was minimal.” In fact, it took Jack several years to find a comfortable chair and a suitable seating system. Initially, he believes he had an inexperienced team of rehab professionals. Although Jack had minimal mobility, he left the first rehab hospital with only an ill-fitting manual wheelchair and an electric typewriter. He says, “I was a mess … the seating was absolutely horrendous … my legs were always all over … I tied bandanas around my legs.”
Dissatisfied with his situation, Jack eventually decided to move to a transitional living centre in another state. He says that this second rehab centre was “wonderful.” There, Jack was exposed to other individuals with various disabilities and he experienced “the normalcy of disability.” He learned to perform activities of daily living, and got assistive devices such as the mouthstick, bookstand, and laptray. But in spite of these improvements, attempts to correct Jack’s seating remained unsuccessful. He says he looked “like a turtle hunched over in the wheelchair … it was just teeth gritting pain.”
It wasn’t until Jack returned to his hometown to attend graduate school that his seating situation improved. He recalls meeting “a very proactive OT with one of the local wheelchair vendors. And she looked at my wheelchair and said, ‘Oh my God, this is horrendous. How can you be sitting in this thing?’“ Jack eventually got a new chair with the seating changes he needed, including power tilt.
Whereas “function is much more important” to Jack now, at the time, aesthetics were a significant factor in his decision-making process. Because appearance was important to him, he initially chose a particular model of wheelchair mainly because of its design. “It didn’t look like a wheelchair … it didn’t have the two big back wheels … it looked more like a lunar rover which I think was very important to me … it was the least obtrusive chair.” Now, Jack is more concerned about function and wants “something that’s going to work … I’m hard on wheelchairs … I like being out. I’m on the street all the time. A wheelchair is my way of getting around so I need something like a car that’s reliable, something that is comfortable.” Having a properly fitting chair with a longer base has improved Jack’s posture and decreased his back, neck, and shoulder pain.
Also, Jack recalls that it was the only chair at the time that could be operated by chin control, which he prefers over other control methods. He tried sip and puff, but his lungs would “freeze up, so the chair would go flying.” Jack believes that “chin control gives you so much more mobility. Sip and puff seems so much more mechanical and I have much more freedom … it’s like driving a car.”
For Jack, making choices about wheelchairs and seating has gotten better over the years. He says, “The technology is improved and I think there are people now who have expertise in seating. They have a better idea of what to do with people with my level of disability.” The process is also made easier by the fact that Jack is more aware of his needs and knows what he wants. For instance, he now has both tilt and recline and uses each feature to enhance his comfort level. The tilt feature allows Jack to reposition himself independently as a means of relieving pressure and reducing the risk of skin breakdown. Recline enables him to drive his chair from a slightly different position and relieve neck pain or simply accommodate bulky winter clothing.
Jack relies on Medicaid and private insurance for funding, and navigating these systems can be a frustrating and very time-consuming prospect. For Jack, “repairs are probably the biggest nightmare on wheelchairs … you can’t get the chair fixed.” Jack finds that these delays have had a direct impact on his susceptibility to pressure sores: “I’ve been without my tilt now for four months or something and so I’ve been having more problems with my butt … more downtime, losing work.” To complicate matters even further, Jack says, “The wheelchair vendors are absolutely horrendous and they blame it on funding … because Medicaid takes so long to reimburse them and they don’t necessarily reimburse them the full amount.”
In terms of his own strategies for dealing with the system, Jack says that sometimes funding is connected to employability. Through the student services office at the university, he learned about a state-sponsored rehab program that might help with funding for assistive devices. Jack had a “very proactive and helpful” rehab counselor, and because Jack was considered highly employable, he was able to secure funding for his door opener and computer. However, Jack observes that “large ticket items like wheelchairs can be difficult to get” through this program. For these more costly assistive devices, “first you go to the private insurance company and then they reject everything and then it goes to Medicaid. And then Medicaid will give … whatever and so it’s a combination of the two.”
Based on his past experiences, Jack’s advice to those who are newly injured is to “get the high ticket items upfront. This is very sad because I know this has happened to people where they’ll say, ‘We’ll pay for you to use an electric or manual chair.’ And the OT or PT will say, ‘You only need a manual.’ And this is for a C5/C6 quad who’s unable to move the wheelchair.” Jack recognizes that most newly injured people wouldn’t know enough about their needs to express their opinion and says, “I wouldn’t have known … I was clueless.”
Jack is unable to drive, but he has a full-size van equipped with a raised roof, a lift, and a manual tie-down system for his chair. He says that although he “would love to be able to drive again … it’s not a priority.” Because he needs a driver, Jack uses his van primarily for long distance travelling to visit family. His work is a short subway ride from home and for work-related travelling, he says, “I’ve got a cabbie … he drives me everywhere. Because most of it’s for work and they pay for it, … it makes more sense.”
This is Jack’s second van and because he paid for the modifications himself, Jack had complete control in his choice of vendor. In spite of this, he believes that getting a big van was a mistake and explains, “You don’t need a big van … I’m not in the van all the time.” Jack regrets not shopping around more and says that because he wasn’t aware of the options, he went with the first vendor. He would prefer the simpler set-up of a taxi he once used: “nothing electronic, get right in, roll up the ramp … it was still roomy. We hit some heavy-duty bumps and nothing bottomed out.” Jack also likes the lowered floor and says that in his van, “you’re above … you’re off balance with the rest of the vehicle.”
Because of his experience, Jack believes that first-time buyers need to “shop around … don’t just go with the first vendor … find out what you really want, what you really need, and get competitive prices.” At the same time, Jack acknowledges that the pressure to buy equipment can be intense: “It’s like when you go to the funeral home.… And they show you all the coffins … they say you want the person to have the gold coffin.” Despite this pressure, it’s important to make these purchase decisions slowly and carefully.
Because of the telecommunications requirements of the Americans with Disabilities Act (ADA), Jack has a telephone system supplied by the local telephone company. He explains: “there’s a remote that sits on my pillow and I operate it with my head and chin. It’s very easy. It goes to the operator … I say, ‘This is a disabled caller’ and the operator will dial the number.” Jack is not happy with this phone because it requires batteries; if they go dead, the whole system fails. He believes that the system is somewhat unsafe and says that the main purpose for having a phone accessible from his bed is for emergencies during the night.
Jack used to have a sip and puff telephone system that “died of old age” and it was replaced with the current technology. Jack believes that the ideal situation would be to have a system that does not rely on batteries, “just being able to say, ‘Telephone on,’ the operator comes on, and you can speak.”
Jack finds hospital bed mattresses hard and uncomfortable, and while at the second rehab centre, he discovered that “all the quads used a waterbed.” He finds that the waterbed keeps him “cool in the summer” and because there is less pressure and he can only sleep on his side, Jack is able to sleep more comfortably for longer periods of time.
Currently, Jack is pursuing the possibility of modifying his bathroom to replace his tub with a roll-in shower. Due to his spasticity, he is unable to use a shower chair or sit on a bench. Instead, Jack sits in a sling or “net” while showering. He refers to the sling as the “torture machine” because it squeezes his legs and knees together in uncomfortable positions.
Because Jack has recently spent some time in bed with a pressure sore, reading and working from bed have become priorities. While in rehab, Jack had access to an electric page-turner, but he found they were only reliable for reading magazines. Turning pages with his mouthstick “creates spasms” so Jack does not have an effective way to read in bed. Jack would also like to have access to his computer from his bed using his mouthstick. This system would enable him to work from bed at night or during downtime. Jack says, “If I do spend time down, it’s lost time. And if I lose a week of work, that’s a week lost.”
Like so many others, it took Jack years to become aware of his needs and to find devices to meet those needs. Jack reflects that while he’s been able to deal effectively with a highly bureaucratic system, one of the “tragedies” for him is that others don’t, and their needs remain unmet.
In Jack’s experience, the way to buy assistive devices is to go through painstaking research, talking to as many vendors and experienced consumers as possible: “Check everything out. Go to, check out as many vendors that you can. And, and don’t think that the person you’re talking to at the hospital knows everything because chances are they only know half of it.… Talk to folks who have been in a chair a while. Don’t just talk to one person in a chair because you know, their experience is different. That’s why you go to more than one person because the next person you talk to may say something completely different from what I’m saying.”
Assistive technology is essential to Jack’s independence, but he has a realistic view of technology’s capabilities. He compares today’s assistive devices with the introduction of appliances like washing machines that were supposed to “transform your life.” Jack says the washing machine was seen as the “most amazing machine in the world. And then you get it. You’re still doing the wash.” To Jack, assistive devices are merely a means to an end, and it’s up to him to find ways of making them work for him.
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