In the five years since his injury, Luther has developed a detailed understanding of the devices he needs in order to live independently. The pressures of being a university student have made it necessary for him to become an expert in computers and computer accessibility. After some trial and error, Luther now has a system that can support his needs. In contrast with his relatively positive experiences with computers, Luther feels that his environmental control units and other assistive devices have largely missed the mark. There are important pieces of equipment that he still lacks and others he has which he feels were a waste of time and money. The “one-shot” nature of government funding has meant that Luther has often had to settle for less-than-perfect solutions—there is rarely a budget to make modifications to a device once it has been installed. Luther’s advice to new consumers of assistive technology is to seek opportunities for peer support and become more familiar with one’s actual living space and lifestyle before investing in a lot of equipment whenever possible.
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Luther began to experiment with computers and computer-related assistive technologies as early as the third or fourth month of his ten-month stay in rehab. Prior to his accident he had a computer at home, which he used for word processing, but nothing else. He started to take a deeper interest in computers when he realized he needed a focus beyond rehabilitation. In his words, “computers were the way of the future” and “may be one of the only things I can do better than others.”
To continue his education, Luther needed to be able to write efficiently without the use of his hands. Occupational therapists introduced him to speech recognition software, which he practised in his free time. He also used a head-operated mouse and an on-screen keyboard program. By his sixth month at the rehab centre, Luther applied for a government subsidy to acquire his own accessible computer. He did not receive enough money to pay for a system that was as powerful as the one he would have liked. The system he acquired at that time was too slow to support speech recognition effectively. The speech input software also had its limitations—it did not always recognize his voice and corrections were time-consuming.
Audio:
Hear Luther using his older voice recognition system (Part 1) and his newer voice recognition system (Part 2)
Part 1
Part 2 |
These limitations led to frustration and stress after Luther went back to school. He found that he had to do a great deal of writing for his assignments and the deadlines were tight. As well, his daily living needs mean that he has to keep a strict schedule. “I cannot pull those all-nighters … my life is very scheduled. I get up at the same time, pretty much do the same things, and go to bed at the same time. So I have to fit all of that within that time frame. If I am not able to produce … it just puts a lot of pressure on me.” With the slower system, Luther would often have to ask for extensions on deadlines. He said the professors would accommodate his needs, but he felt this situation could not continue because, “I knew I would meet a professor that may not accept that or be lenient with me because of the disability. So, … it was a lot of pressure.”
Luther soon felt he had to invest in new equipment to keep up with the demands of his studies, so he began to keep track of what he liked, what he needed, where it was available, how much it cost and where he could get the money for it.
Luther eventually bought a new and more powerful computer and another speech recognition system. Because he was actually at school at the time, he had access to an educational bursary in addition to the government subsidy. That extra money meant that Luther could afford a system that would meet his needs. The new speech recognition system was a big improvement over the old one as it recognized complete sentences spoken continuously. With the old software, Luther had to pause between words so the computer could recognize each word separately. He now completes school assignments in half the time it used to take and he no longer needs extensions on deadlines. For Luther, the efficiency of the new system paid big returns in his quality of life: “I could do my work without stress. That is a key word—without stress. When I am doing my assignments, I am so relaxed.”
Luther describes the whole chain of events around the acquisition and use of both computers as “a learning process,” one that he felt was “pretty good.” Right from the start, he says, “I knew what the end was supposed to be … so I was willing to go through all those steps, all the paperwork, going for, applying for [funding], getting the right system.” In Luther’s view, getting the second computer was an entirely different experience than the first, because he had learned so much more by becoming an active user of hardware, software and the Internet. His decisions were based on knowing exactly what he wanted, what he needed and what he did not want and working with people to accomplish his goals. As he puts it, “I was involved in the process. Whereas before I was not really, I just signed a name. That was about it.” Another lesson he learned from using the first system is that virus detection software is a must-have.
Luther’s advice to anyone in rehabilitation who is thinking of getting a computer is to seek peer support. Ask the therapist to introduce you to “someone who uses the technology that therapist said you should get. Talk to them … that’s a big part.” After that, read up on all the different features of computers and look at what’s in the stores. Find out what your ideal system would be and then figure out how much money is available to you—what parts of the system you could take off? Only then, in Luther’s experience, are you close to making an informed decision that is right for you.
Video:
See Luther controlling his electronic appliances with his mouthstick. Choose a format: |
While he was in rehab, the occupational therapists suggested to Luther that he would need various scanning environmental control units to turn lights, stereo, video and TV equipment on and off. He bought the ECUs they recommended, but he has never actually used them, which still bothers him today. For Luther, the scanning is too time consuming. He finds the devices bulky, finicky and user-unfriendly. As well, some of the controls were integrated into Luther’s wheelchair electronics, which resulted in more boxes being mounted on the front of the wheelchair. These extra electronics were not consistent with the kind of image Luther wanted. “I do not like junk … a lot of clutter … I do not like to see a lot of cords, I do not like things on me.” As a result of these drawbacks, Luther does everything, including dialing the telephone, with his mouthstick.
Luther’s major regret right now is that he lacks an electric door opener for his front door and modifications to the elevator so that he can use it alone. He cannot go in and out of his apartment or his house without assistance. As he says, “Those are two things that would have made me more independent than anything that I have.” As with the computer, money is an issue—Luther has to find out how he can get the money to resolve these situations.
Apart from financial constraints, Luther’s needs for ECUs have not been met because neither he nor the OTs fully understood what he would be able to do and not do at home. As he recalls it, “The question was asked and I did say what I needed. But the environment I was going into I was not familiar with … I did not anticipate that I would reach the point where I do not need anyone to do too many things for me.”
In Luther’s perception the occupational therapists’ approach was to set people up with everything they might need before leaving the rehab centre. This doesn’t work because what is an aid for one may not be appropriate for another. As well, prospective users of ECUs who have not left the hospital have no criteria of lived experience that would enable them to make a decision based on what is best for them. As Luther put it, “If I could do it over again … if it was possible, I would have liked to come home first, see what I need and then order it.”
Luther still uses the chair he got three years ago, but he has not been comfortable in it for the past two and a half years. He has back pain now, which he believes has come from spending so much time in the same position. Luther believes that a tilt system would allow him to relieve the pain by changing position, but because he does not have skin breakdown problems, he feels the funders may not approve the change. An additional funding issue is that the usual replacement period for his wheelchair is five years—because it has not been that long, Luther is not sure if the government agency will consider his request. This is another example of Luther’s difficulties accessing funding to improve a device once it has been delivered.
Luther now realizes that he agreed to the original wheelchair purchase without really understanding what living in the chair would entail in terms of his own comfort and convenience. At the time, he could not have made such an informed decision because he was not as aware of his body then as he is now and he had not been injured long enough to have understood that the chair was fundamental to his new life. He describes his early decision this way: “Oh it is a chair, I sit in it, I get out of it. I did not know, what do you mean about modifications? … Just give me any old chair, that is all.” As with the computer and the ECUs, knowing how to make “right” decisions about the chair, has been a matter of learning over time.
In Luther’s opinion, there should be two new programs set up in his former rehab centre. One would introduce people who are still in rehab to the realities of the experience that they will have when they leave the hospital. Another would help people for the first six months after their discharge, “’cause really after you leave rehabilitation, I do not think they [occupational therapists] even realize the different things that happen.”
For Luther, both his computer and his wheelchair are more than assistive devices that he uses every day; they seem like pieces of himself now. The computer allows him to plan and organize his time better than ever before and is a stress reliever in that sense. More importantly, “It is enjoyable and I have tons of work to do and I think it is just part of me, it’s just part of me now.” Of his chair he says, “I treat the chair like it is me. Touch my chair and you are touching me too.”
Both items are things that Luther values because he needs and uses them. They are effective and that makes it easy to accept his computer, his chair and even his mouthstick as integral to who he is and what he can do now. Luther cannot say the same for his experience with his ECUs. They are discarded parts for him that do not provide him any perceived advantage over his simple mouthstick. “The least for me is more … I want to do everything as naturally as it can be done.”
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