In the 21 years since his C1-level injury, Kevin has seen a lot of change, both in the medical treatment of individuals with very high-level quadriplegia, and in the assistive technology that plays such a central role in the pursuit of his dreams. Kevin lived in his rehabilitation facility for over seven years after his injury, primarily because he needed specialized medical assistance with breathing. At that point, he was able to take advantage of the shift to community-based services and move out of the institution into an apartment with personal-care supports.
Today, Kevin works as a consultant in disability and universal design issues. His work includes, “public speaking, product evaluation, therapy design,” but his main focus is to expand his Interactive Commerce business. Kevin considers technology extremely important to his ability to work. “There are ways to do things, but I probably would not choose to have done anything if the technology wasn’t available …. Even the thought of going back to school would not be at all interesting or appealing if I wasn’t able to access the computer and do some work that way.” Along with the accessible computer, Kevin points to an environmental control unit, or ECU for short, that helped him make a smooth transition from the institution to independent living in the community. This device allows him to control lights, the telephone and other electrical appliances in his home with just a puff of breath in a tube.
While Kevin does what is necessary to acquire technology like this that can fill a need in his life, he is a discerning consumer who sets priorities for his financial resources. As he says, “These devices don’t come cheap, and I’d rather spend money on entertainment, and travel, and business and that kind of thing … rather than buy products and devices that I don’t really need.”
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Since his injury is at the C1 level, Kevin has always had a need for technology to assist with breathing. For the first six months, he had a ventilator attached to a tracheostomy (trach) in his throat. This arrangement was functional, but it meant that Kevin would have to stay in the rehabilitation centre, close to the respiratory technicians. He explains, “As a ventilator-user, and having a trach and needing suctioning in those days, there was no place to move into.” Roughly seven years after his injury, some other people who were already living in the community developed conditions that required respiratory supports for them to continue living in the community. “There were several other people living in supportive housing that didn’t need to be ventilated initially. But when they did need to be ventilated, it just made more sense to go back to the supportive housing where the attendants knew them, … and it opened doors for a lot of other people.”
Kevin learned about an alternative to the ventilator called a phrenic pacer. He didn’t like the constant noise from his ventilator, so Kevin decided to learn more about it. “The typical ventilator would push air into your chest. The phrenic pacer innervates your diaphragm so that it’s breathing more normally. It has two parts: a surgically implanted electrical stimulator and an external control box. The control box sends a radio signal to the implanted stimulator at regular intervals. The stimulator, in turn, sends an electrical impulse down the phrenic nerve to the diaphragm, causing it to contract, “which is the way you would breathe spontaneously…. Actually it was developed on the idea of a heart pacemaker.”
Kevin has some control over his breathing through the control box. “It’s very similar to the old-fashioned Walkman idea…. It operates on a nine-volt battery, and there are two external dials there. One’s for the left side of the diaphragm, one’s for the right.” Kevin uses these dials to adapt his breathing as his needs change from day to day. “There are good days and bad days…. You can turn up the amount that you breathe.”
Technology is not foolproof, and because he lives alone and needs a device to breathe, Kevin has thought very carefully about his safety. His first defence is a technique called frog breathing, where he uses his mouth and throat muscles to bring air into his lungs. “It’s a way that I’ve been trained to breathe in case there’s a problem with my pacers…. It gives me security to breathe independently, not spontaneously, but independently if I need to breathe.” Kevin can keep up the frog breathing for several hours, until he is able to get help. “If something happens with my breathing, I need to use my telephone. If that’s not working, I can breathe for about four hours on my own, and that’s probably as long as I would need to go if I was home … because [attendants] are scheduled sort of every three or four hours with routine things.”
Overall, Kevin has found the phrenic pacer an improvement over his old ventilator. He finds the pacer, “less conspicuous and, in a sense, less invasive…. It’s also allowed me to get rid of my trach, whereas if I was using a typical ventilator, there would still have to be some access to a trach or my nose or my mouth.” Mainly though, “[the pacer] is a lot smaller and a lot quieter than a typical ventilator, so that’s why I chose to use this device rather than a ventilator.”
Kevin started using an ECU while he was staying at the rehab centre. Kevin remembers it as “a scanning device and a touch switch that I could use with my tongue or my nose and basically scan across from left to right, … use that touch switch to operate the devices, … to dial a phone and turn on and off lights.” The controller had a series of lights on the front panel, each indicating a different device that could be activated. By touching the switch with his nose or tongue when the desired device was lit up, he could control the device.
An important feature of this early ECU was a tape recorder that Kevin could use to record his ideas. “It was really important for me to be able to use a tape recorder and answering machine, because I make a lot of notes, especially when I’m not near my computer. My mind goes into overdrive in the middle of the night…. I could take the notes from there and get them on my computer whenever I was up.”
Kevin has seen ECUs evolve over the years. In the early days, all of the devices that he wanted to control with his ECU had to be plugged into the central unit. Since then, innovations like infrared and X10 control have made it possible for the control unit to be located far away from the devices being controlled. One problem that has not been solved, however, is funding resources for these expensive systems. Kevin notes that he was able to successfully argue for funding to buy the initial ECU when he was moving out of the rehab centre, but since that time, no funding has been available. “There was no funding for upgrades, repairs, or any device for the environmental control once I moved here. If something happens, and I need it fixed or want to upgrade or add to it, I have to pay for it on my own.”
Kevin has developed a good working relationship with the manufacturer of his ECU over the years, but the lack of public funding has resulted in difficulties for the company too. “Unfortunately, the company that works with my products isn’t very active anymore. He’s got a few sort of long-term, reliable customers that he still works with and services. You know, the political red tape and bureaucracy doesn’t make it very appealing … to be in the market, to be in business.”
There are a few things that Kevin would like to be able to control through his ECU that he can’t right now, for example, blinds, the thermostat and the controls for his electric bed. Kevin has come up with a way of controlling the heat through X10 and clever positioning of a humidifier though. “I indirectly have control over the heat in my bedroom, because of my humidifier. It flows enough cool air on the thermostat that I can turn the heat on and off if it’s set at the right spot.” While Kevin acknowledges that there are unmet needs, he feels that they are “nothing that I would need to spend money on now.”
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See Kevin describe the use of his sip-and-puff head mouse. Choose a format: |
Kevin has been working with computers for many years. Around the time he was making the move into the community, he was also looking to buy a computer of his own. He had been using the Apple II computer with a miniature keyboard and a mouthstick up to that point. Access with a mouthstick was difficult because Kevin sits in a semi-reclined position, far away from the computer and the mini-keyboard. While researching the alternatives, he discovered a company that was developing a head-operated mouse for the Macintosh. Interestingly, it was not initially designed for computer users with disabilities. He explains, “This device was originally designed for the Macintosh computers because somebody down in Boston typed so fast he didn’t like taking his hands off the keyboard to use the mouse, so he developed the headset idea and a switch on the keyboard. And I found out about that. [Kevin’s rehabilitation centre] brought the device up here, and they were going to connect it to a shoulder switch or an elbow switch and I said, ‘Uh-uh. If you’re going to do something to it, connect it to a sip-and-puff, because that’s the way my wheelchair works.’ So I bugged them about it every day for three months pretty much, at least twice a week, and they developed a puff switch and sent it to me.”
Kevin still uses an updated version of that original device today. He wears a headset with an integrated puff switch and controls the cursor on the screen with head movements and puffs of breath. “I move my head to wherever I want the mouse to move and I blow into the switch.” A wire connected to his headset communicates these actions to a control unit on the computer, which turns them into mouse commands. At the same time, a software package on the computer displays an image of a keyboard and he can select “keys” by pointing at them with his head and puffing. With this arrangement, Kevin can do anything that can be done with a keyboard or mouse, through head movements and breath pressure alone. Kevin figures that he can type about eight words per minute with the onscreen keyboard. “I can type just as fast now as when I was in grade nine typing with ten fingers. That’s not saying much for my typing now or then.” The onscreen keyboard includes a word prediction feature that can save Kevin keystrokes. As he types, the onscreen keyboard shows a selection of possible words given the letters he is typing. If the word he wants shows up on the list, he can pick it instead of having to type out the remaining letters one at a time.
One big drawback to this whole arrangement is the wire going between Kevin’s headset and the control box on the computer. It means that he has to stay at the computer once he has his headset on, until someone arrives to take it off. One of the updates to the headset that Kevin bought a few years ago included a wireless transmitter/receiver to eliminate the wire and allow him to roam around while wearing the headset. “I like the idea of being wireless, so I can roam around, read papers or books, … then go to the computer and do some work, so I’m a little bit more flexible that way.”
Kevin has explored newer devices that would not rely on a headset, but he has not made the switch so far. “The other ones … either have a dot or a sensor that would either attach to glasses or your forehead or a hat…. The head cushion on my chair sort of knocks off hats. And I don’t wear glasses, and my face, being hypersensitive, sticking the dot in the middle of my forehead drives me nuts. So the headset, although it’s bigger than what would be available for telephones, probably works the best and it doesn’t bother my face.” The lack of a puff switch on these newer devices is also a disadvantage to Kevin. Because there is no switch, these other devices “rely on a delay” or holding the cursor still on the screen to make selections, “whereas I’ve got the puff switch on this one, and I can access and type things faster, because it allows me to, say, blow into the tubing and select a key … whereas with the other ones, you have to stay motionless for a second or two. It’s a little bit slower than what I use now.”
Kevin has not ruled out these newer head-operated mice, however. And he is in the process of considering a switch to the personal computer (PC) because he does not see a good selection of speech recognition software for the Macintosh. “I’ve got an older version of voice recognition for the Macintosh, which I haven’t been using…. It’s limited I guess because it’s maybe six or seven years old. Because it’s a limited [number of] Macintosh users out there, they haven’t expanded or updated it.” On the PC, there seems to be greater possibilities, both for head-operated mice and speech recognition software.
It was a little over a year after his injury that Kevin started looking for a power wheelchair so he could get around independently. His options for control consisted of head-control, chin-control and a relatively new method involving sipping and puffing into a plastic tube. He chose sip-and-puff, “because my spasms are very strong and I don’t have a lot of control with my chin or my neck…. The sip-and-puff was really the only device I could go with.”
Kevin is still using this driving method today. He explains, “It’s all really based on four simple commands: a light sip, a light puff, a harder sip and a harder puff….” A hard puff will start the chair moving, accelerating in proportion to the force of Kevin’s breath until a maximum speed is reached. He steers with two other commands: “A soft sip is left, a soft puff is right.” Once the chair is moving, Kevin can use these two commands to make small corrections in his direction: “If you’re driving down the street, and you need to go straight or correct, then it’s just a little sip or a little puff.” Finally, a hard sip will slow the chair down or stop it.
Kevin also has an emergency kill-switch in the form of an infrared sensor attached to a flexible tube. For the chair to work, the light has to be very close to Kevin’s lip, “The same way you’d be tethered to a snowmobile or a boat.” The kill-switch is a relatively new addition to Kevin’s chair, added in response to some potentially serious accidents: “There were a couple of times where the tubing disconnected and I went full-speed ahead and ran into a wall or off the curb on the sidewalk.” The kill-switch is an important defence against this type of unexpected situation. “If I happen to have a big spasm or the chair for some reason goes out of control, I remember to push my tubing away most of the time.”
Kevin does peer counselling through a local community agency. His advice is simple: “Try to stay on the bright side of things…. Technology nowadays can allow you to do just about anything what you want to do, whether it be attending school, finishing school, getting out to work or volunteering. The technology that’s available can give you a very good quality of life if you choose it. You know, if you want to sit at home, you can sit at home.”
Having said that, Kevin has developed a realistic opinion of technology and the problems that can come up with it. He counters the reliability issues by always having back-up methods ready. He has a manual chair in case his power chair isn’t working, and various other contingency plans, especially for breathing. As a result, Kevin feels confident that he can deal with breakdowns: “No real anxiety, because I am prepared.” However, Kevin’s realistic view and back-up plans do not change the feeling of being let down when the technology fails: “It certainly is a little disappointing…. Let’s say, if the chair’s not working, it wouldn’t be the same as if your car isn’t working. You know, you’re kind of stuck.”
Kevin has decided to continue using the models of equipment he has come to know and trust instead of constantly acquiring different technology. That doesn’t mean that he has stopped looking around. Kevin goes to an annual assistive technology tradeshow in his city and is always watching for new products that will meet a need for him.
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