At the time Ken was injured 21 years ago, he was only the second ventilator user to complete the SCI rehab program that he attended. Due to a lack of familiarity, he felt that rehab professionals were not knowledgeable about appropriate assistive technologies for people with high-level quadriplegia. Ken acknowledges that, because of limited market potential, very little technology had been developed for consumers like himself. However, he observes, “Professionals didn’t seem to have the capacity to think, ‘Okay, this is really easy to do, let’s find a simple solution and just do it.’” Ken left the hospital with his power chair, an environmental control system and a closet full of assistive devices that did not perform to his satisfaction. Ken felt that assistive technology was often unreliable and usually did not adequately perform the tasks it was originally designed to accomplish. In addition, he was troubled by the visual aesthetics that accompanied the use of most assistive technology. Frustrated with the inability of technology to conform to his needs, Ken began to develop his own technological devices.
Creating his own technological solutions was a natural alternative for Ken because he has a keen interest in product design and development. In fact, from the time he was ten years old, Ken has been repairing and modifying all sorts of electrical products. His comfort level with design and development, a growing frustration with the available technology, and a desire to lead a full and active lifestyle all made him determined to take matters into his own hands and develop his own technological solutions. He began using his design experience to adapt his own desks with a turntable that could accommodate a telephone, answering machine, fax machine and an electric Rolodex. He can access any of these items by turning the table with his mouthstick. In his experience, the simpler the product, the more reliable it will be.
Following rehab, Ken was determined to resume his pre-injury lifestyle. Always athletic and a person who thrived on competition, he returned to coaching wrestling, and with time, resumed a variety of recreational activities. Assistive technologies provide an important mechanism for achieving the lifestyle of his choice. Today, he uses his personal experience and design expertise in his work as a consultant with manufacturers of assistive technology. Ken continues to seek out challenges and has participated in a range of activities including river rafting and skydiving. He also enjoys hobbies such as shooting, power soccer, bowling, riding his motorcycle, and operating his remote-controlled cars and airplane gliders. He says, “You have to [design your own solutions] if you want to do things. If you want to live.”
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Ken’s level of injury requires him to use a ventilator in order to breathe. From the first time he started using the device, he disliked the way it affected his speech. He was also uncomfortable with its visual appearance. As a result, he started to contemplate making modifications to the equipment so that it would conform to his requirements. His first challenge was the exhalation valve. He disliked the fact that the ventilator made him pause for several seconds mid-way through each sentence in order to exhale. (Although Ken relies on the ventilator to inhale, he is able to exhale on his own.) Therefore, he decided to bypass the exhalation valve and run the tubing directly from the ventilator into his tracheotomy. This adaptation allows him to speak continuously without the need to pause. Ken notes that this adjustment to ventilation equipment has been duplicated and a similar version is currently on the market.
Next on Ken’s agenda was his humidification system. Known as an “artificial nose,” this device works with the exhalation valve to trap moisture, which prevents uncomfortable dryness. Once he removed the exhalation valve from his system, Ken needed to come up with a way to add moisture to his air intake. His solution was to add an aquifer, so that the air he breathes passes though water before he inhales. This modification helps maintain the moisture he requires, and Ken adds, “The quiet sound of the water bubbling is pleasing and soothing to listen to!”
Over time, Ken’s modifications have resulted in a smaller, more compact machine that ideally suits his preferences. In his words, “I’m into cosmetics … conventional vents are an eyesore. But with my version, you can’t even tell I’m on a vent. Most people have exhalation valves and small tubes coming out. All my working parts are down by my vent. I have a cover on the tubing so you can’t see the tubing or anything…. It looks like a backpack on my chair.”
From Ken’s perspective, his changes represent fairly routine adaptations, but he acknowledges that ventilator users are often uncomfortable making changes to their systems and he readily admits that his way is not for everybody. However, he expresses frustration toward doctors and rehab specialists, who he says, “don’t understand … they have no idea.” Ken believes that most of them are unconcerned about the appearance of assistive technology and its impact on the person using it, and therefore don’t take the time to consider alternatives that could improve the way the device makes the user look.
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Ken uses a chin joystick to operate his wheelchair. Although he recalls being satisfied with the original device, it wasn’t long before Ken began to design his own. He explains, “I would take a hand control, rip it apart and make it into a chin control.” He says that eventually the manufacturers caught on and some are now using hand controls for chin joysticks.
Although the chin joystick itself worked for him, Ken disliked the plastic bib or collar that held it in place in front of his chin. He says it was flimsy and it would bend when he hit the switch. Nor did he consider any of the alternatives available at the time much better. One type fit over his entire chin and was “really ugly.” Another option was a boom that attached to the chair and came over his shoulder. Because the boom is secured to the chair, it doesn’t move with the user as he or she drives. He explains, “So you hit a bump, and you start smacking into your switch.” Not crazy about any of these options, Ken designed his own collar made of aluminum. It rests on his shoulders, it doesn’t bend, and it moves with him as he drives. Ken says that his collar has made quite a difference in the way he drives. “It’s kind of like power steering compared to non-power steering.”
Another self-designed feature of Ken’s chin joystick is an on-off button. Although chin joysticks have an automatic shut off on a time delay to prevent unwanted or accidental movement, Ken has found that, “When you have something right under your chin, you play with it.” By adding the on-off button, Ken gave himself more control—he can be sure that his wheelchair won’t move when he doesn’t want it to.
Due to the specific electronics on his chair, Ken’s chin joystick enables him to adjust the chair’s programming independently. He explains, “I can [change] the speed, brake, acceleration and more with my chin switch through a small display that is connected to the electronics of the chair and is mounted beside my right hand.” In addition to the increased control, Ken likes being able to do all of this through just one switch. In his words, “I don’t have to have things sticking up around me. Again, I’m into aesthetics. I don’t like things hanging all over me.”
Over the years, Ken has seen a lot of changes in wheelchair design and has learned a great deal about his own needs and preferences. His current chair and seating system includes tilt and recline as well as an air cushion. This combination of features allows him to maintain comfort by changing body position throughout the day and relieving pressure on his buttocks. He tried gel cushions and found that in his experience, “Once it formed, I was stuck. I couldn’t shift around…. Once you settle, if you settle crooked and the gel forms to your butt, it sets crooked. And it’s going to stay that way. It’s hard to reshape it unless you get out of [your chair] and have it flattened out again.”
Because of the tilt and recline features, the chair’s wheelbase is longer to prevent him from tipping backwards. Although he understands the rationale, he dislikes the fact that the frame is so long because it slows him down and affects his manoeuvrability, particularly when playing power soccer. Ken recalls that with older model wheelchair frames, the batteries and his ventilator could be placed beneath his seat. This is not possible with the new power base chairs, and as a result Ken’s ventilator is now located at the back of his chair. He is not satisfied with this because the ventilator protrudes from the back of his chair, and he sometimes hits and injures people when he is playing power soccer.
Ken was first exposed to environmental controls 21 years ago when he got his first power wheelchair. It included an environmental control unit (ECU) that gave him some independence by enabling him to turn things on and off. However, he recalls that this technology was new and unreliable, and it was difficult to repair because of the suppliers’ lack of expertise. He says that, due to the inconsistent performance of this technology, “the stuff ended up in the closet … [and] I went down to basics. I went to using a mouthstick.”
Ken is now taking another look at ECUs because of recent improvements in technology. He is interested in one ECU system in particular. This system’s electronics are compatible with those of his chair, which means that he would be able to control it through his chin joystick. As well, this ECU can be removed from the chair and used from his bedside through speech recognition. Although Ken is wary about using speech recognition technology, which he considers “not very good yet,” he wants to find out more about this ECU, which he says, “sounds like a good system.”
Ken uses a computer for personal and work purposes. He plays games, uses the Internet and uses several software programs to write letters and maintain timesheets for his PCAs. Ken also uses a computer to access various drawing programs that enable him to translate his design ideas into a graphical format for others to follow.
To generate text, Ken uses a continuous speech recognition system. He finds the recognition accuracy limited. He believes that the recognition is affected by his lung capacity and says, “For someone on a ventilator, our voice changes during the day…. By the end of the day, our voice starts getting weaker.” He has observed that he has to take the time to enunciate clearly in order to maximize the accuracy.
To operate his drawing programs, Ken uses a mouse controlled by head movements. This particular model has a wire connecting the headpiece on his head to the computer. Ken puts up with being physically tied to the computer because he finds the mouse control far more accurate and responsive than it is on wireless head pointers. Through his work with clients, Ken has observed that the wireless devices require slower, more deliberate movement and this causes frustration. With his hard-wired head pointer, he can move his head and see the cursor respond immediately. Even when he is drawing freehand, the precision and responsiveness of this technology allows him to work much more quickly and efficiently.
Ken is unable to drive but has a minivan that is driven by a PCA. As far as he is concerned, the process of buying and converting a van is much easier today than it was as recently as five years ago. Ken prefers a minivan to a full-size van observing that in the past, “they’d cut up the floor at the back and you’d sit in the back of the van.” He prefers being able to sit up front with the option of either sitting up straight or reclining his chair somewhat so he can see out the front window.
Ken is uncomfortable using a lift and has chosen to equip his van with a ramp. His system includes a power door opener with an automatic kneeling feature. He explains, “You hit the switch and the door opens and when you’re opening the door, the back end lowers down to get the van as low to the ground as possible. It’s a ramp not a lift … when you go on a lift and start going up, you don’t have any control. It’s not comfortable.”
In addition to his van, Ken has a touring motorcycle with a customized sidecar large enough to safely accommodate his power wheelchair. He enters the sidecar from a rear door that opens from the side. He drives his chair up onto the floor of the sidecar via metal ramps. Next, he is secured to the floor with a locking device. Although he cannot drive it himself, Ken loves touring with his bike because he is situated in such a way that he can easily see the landscape as he travels. He enjoys the sense of freedom that travelling on his bike provides.
Prior to his accident, Ken was very athletic and worked as a wrestling coach. Following his rehab, he returned to this job. Ken had someone to demonstrate the moves for him, but he found that his diminished lung capacity affected his ability to project his voice while instructing students. Ken’s father and friends were musicians, and using his familiarity with their equipment, he decided to use a small guitar amplifier known as a “pig nose” to help him teach.
Ken believes that if a person really wants to participate, it’s always possible to adapt the technology. He says, “All you have to do is think about it a little.”
Ken had an interest in skydiving so he contacted a tandem skydiving organization/school specifically for individuals with a spinal cord injury. After talking with others who had tried skydiving, Ken was hooked, and he went about building the equipment necessary for him to undertake the sport. In tandem skydiving, the back of the individual with a SCI is attached to the front of an experienced skydiver. As they land, a ground team is ready to catch the legs of the person with a SCI, unhook the two, and return the person to his or her chair. Ken’s main obstacle was that the size of his ventilator inhibited his ability to jump. Ken researched the problem, networked with experts and contemplated the situation.
After much deliberation, he had an idea for a breathing system that would suit his purpose. He went out a few days later and bought an emergency scuba tank and a regulator. Initially, Ken had difficulty making it work because he could not inhale with enough force to make the regulator start feeding air. Frustrated, Ken put the equipment away for several weeks. Unwilling to give up, he eventually consulted further with the scuba shop and together they adjusted the regulator to provide a constant air flow, which gave 13 minutes of oxygen from one tank. Ken explains, “I took the exhalation valve and mouthpiece off the regulator, then sealed the exhalation port, attached a piece of flex hose to the feed port, and attached it securely to my trach. Believe me, I made sure it was secure.”
Although he had tested the tank prior to the jump, Ken was not sure how it would work at two and a half miles up. He knew it would take seven and a half minutes to come down. Although supportive, his family and friends thought he was “crazy” but Ken was determined.
On the day of the jump, Ken’s oxygen tank was secured with duct tape to the harness around his waist, the regulator was duct taped to the strap on his shoulder, and the air connection was taped to the tracheotomy. When they were ready to jump, Ken switched over from his ventilator to the oxygen tank. Everything went well, but as they descended, Ken discovered that they had been blown off course. “Nobody was there to catch my feet … my arms were strapped together, my knees and heels were strapped together. My feet were about a foot lower than [the other skydiver’s] so I landed on my feet.”
When the tandem skydiver landed a few seconds later, Ken’s legs went between his and both kept going forward. The skydiver straddled Ken, ran for a short distance and then picked him up. Meanwhile, the ground team arrived with Ken’s chair and ventilator, and proceeded to unhook him and return him to his chair. He believes that he was the first person on life-support to skydive, and since his experience, at least two others have done it as well.
Ken has been coaching power soccer for the last ten years. This sport involves an oversized soccer ball and a plastic guard that attaches to the front of the power wheelchair. Ken designed his own chair guard. He and other players are finding that the level of contact involved in the sport is damaging parts of their chairs and Ken is planning to redesign the guard so that it protects the sides of the chairs as well. Ken enjoys this sport because it is one of the few team sports that can be played by quadriplegics.
Ken’s involvement in bowling is typical of his approach to recreational activities and assistive technology. Ken had participated in bowling with the standard bowling ball ramp, but he was not satisfied with the level of involvement it provided. He also disliked the disruption in the flow of the game when manoeuvring the ramp to aim shots. So he designed a Y-shaped apparatus that cradles the ball (on the floor) and allows him to control both speed and direction. The device is held in place by a holder that is permanently attached to the front, bottom section of his chair. In keeping with his “keep it simple” philosophy, Ken assembled the device from parts he bought at a hardware store for less than twenty dollars. Ken has used the device to bowl in a league for able-bodied players.
Ken has always had a keen interest in target shooting. Following his accident he pursued this sport by designing his own system—a gun mount that attaches to his wheelchair seating system. He aims his gun by adjusting his seating using the tilt and recline features and by turning right and left with his chair. To shoot, he uses a homemade triggering device adapted from an electric door lock powered by a car battery, which he activates through a puff switch. Ken describes this activity as a form of relaxation and says, “I can go up there and pop [16 rounds] in ten seconds.”
About 17 years ago, Ken developed an interest in flying model gliders and driving model cars by remote control. He adapted a remote control for use with his chin by tearing it apart and removing the joystick. He explains, “I put an extension wire on it and rewired the joystick so I could use all the functions. It’s basically the same joystick I have now. It’s forward, back, right, left. And I made it so I could either fly a plane … or drive remote control cars.”
Based on his personal experience and his work with clients, Ken believes that newly injured individuals are overwhelmed and unable to make decisions about assistive technology while they are still in rehab; people need time to adjust to their disability and to explore the possibilities. He thinks that most people would benefit from an adjustment period where they are introduced to assistive devices on a gradual basis. This would give them a chance to learn on their own and perhaps through contact with other consumers. Ken says that no two people are the same and observes, “It’s a mentality. Some people want to sit home, have their reading board, have their mouthstick, and read. Some people want to skydive. Some people want to bowl. Some people want to shoot. But you can’t shove all this [equipment] on someone and say, ‘Here you go, this is going to get you through life.’”
Over the years, Ken has sought ways of maintaining an active lifestyle. In order to pursue his athletic and recreational interests, he has had to use his technical expertise to develop or adapt his own devices and says, “The people out there who are designing things are not making recreational equipment for high quads.” Ken has always been able to participate by finding simple, inexpensive, and aesthetically appealing ways to modify devices. He believes that rehab specialists and manufacturers need to do a better job of listening to consumers.
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