Most of Jonathan’s experiences with assistive technology have occurred while he has been living independently. He has had difficulty financing the repair and replacement of the devices he needs or would like to have and this is a source of serious concern for him.
Apart from a manual and an electric wheelchair, Jonathan acquired his assistive devices several years after he was first discharged from the rehab centre. He learned to use all of them on his own.
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Jonathan did not start to use any environmental control devices until he had been living independently in an apartment for a couple of years. He had not been aware of his options and was accustomed to using the attendant services in his building to meet his needs. He had only used a remote on his wheelchair to control a door opener that had been installed in his apartment before he moved in. He also felt that technology was not that important, until one day he fell out of bed and lay on the floor all night unable to move or call for assistance. An attendant found him the next day. At that time, someone gave him his first control unit for the phone so that he could dial a number in an emergency.
Before that, Jonathan did not see the usefulness of these devices, but now he wanted to control other things while in bed—turning on the lights and fan, opening the door and dialing the telephone. Jonathan got an ECU in his bedroom to perform these functions following a chance encounter with an assistive technology vendor while he was taking a training course. At that time funding was available through a vocational rehabilitation service.
Video:
See Jonathan activating his ECUs via his mouth control. Choose a format: |
Whenever Jonathan gets out of bed, he positions the controlling switch so that he can reach it even if he falls forward in his chair and can’t sit up to use the speakerphone. Unfortunately, this particular ECU is now quite dated. It constantly fails and cannot be easily repaired. Funding for a new unit is now difficult because government support is no longer available. Jonathan has not yet found an agency that covers the cost of buying new environmental control devices.
In the living room, Jonathan uses a button-controlled ECU to turn both the lights and the fan on and off. While he could use regular wall switches for the lights, he feels that he couldn’t manage without being able to control the fan. Jonathan uses five standard hand-held remotes for his TV, VCR, CD and stereo. One remote is a backup for the TV. He has no problems unless someone who is unfamiliar with them plays with the buttons.
If his control devices break down completely before he gets funding, Jonathan figures he could survive without them for a certain amount of time but he says it would be “unacceptable” for him to go back to living as he used to. Back then, if he fell forward in his chair, or forgot to book his attendant care, he had no way to call for help. He could not open the door to any visitor who did not have a key to his apartment. Jonathan enjoys being independent in his own home and likes to know he can contact people by telephone even when he is in bed.
When Jonathan first left rehab, he went to live with his parents in a rural area. He used a manual chair all the time, both indoors and outside. He didn’t go out much. He was often alone during the day. It was hard work to go anywhere alone on gravel roads. If he went out with others he had to use the manual chair so he could transfer in and out of their cars, but he continued to use it even after he got his own van. Buildings weren’t accessible so people often had to carry him up and down stairs. The manual chair was convenient for everybody. In Jonathan’s view however, “It was better for them but it gave me no independence.” He had a power chair, but he didn’t use it during this time.
When Jonathan moved to the city, a power chair became essential for independence. It allows him to travel about the city even when the accessible bus service is not available. Now he needs a new power chair, but there has been a delay because he hasn’t been able to secure all of the funding and he hasn’t had an opportunity to test-drive the model he wants to buy. Until he does, the dealer won’t sell it to him. However, the dealer hasn’t yet received a chair from the manufacturer. The chair requires adjustment and must be set at a certain speed before Jonathan can use it. It has a very strong frame and can travel up to 10 MPH—double the rate of his present chair. Jonathan likes to go long distances over hard terrain across the city. He loves the speed and the sense of autonomy it gives him. He anticipates being able to cut his travel time to school by half once he’s in the new chair.
The new power chair will be the fifth Jonathan has acquired since he was first injured some twenty years ago. He got his first chair while he still lived at the rehab centre, but does not recall the experience, except to say that the options were very limited at the time. Jonathan has never since gone to a seating clinic or felt the need to explore what has become available. He has also stayed with the same make of chair or newer versions of it. His second chair was a lemon that broke down constantly and had to be replaced after a year and a half. His third chair wore down with hard use and was replaced because the funding agency didn’t want to repair it anymore.
Now Jonathan doesn’t use his manual even when he’s at home, because he’s in and out of the house so much. He doesn’t want to transfer from his power into his manual chair because he would have to wait for someone to come and help him do that and he can’t stand being so dependent. He doesn’t need anyone’s help to go out anymore and wouldn’t want it. If he can’t get all the way to his destination in his power chair, he’d rather not go out at all.
Jonathan bought his van in 1982 and has maintained it carefully over the years. A lift was added to the van somewhat later but additional modifications to enable him to drive were never made. While he received funding for the modifications, time ran out before he could arrange the installation and the funding was withdrawn. It would also have required Jonathan to buy a new van as well since funding could not be applied to modify a van more than three years old. Jonathan would like to have a new van someday, but it is not a priority, as he himself doesn’t actually drive. He also feels that the cost of modifications and the higher insurance rates that go with them are too expensive.
He uses his power chair and accessible bus services to get around within the city and to go to school. Outside the city limits, he must rely on someone else to drive him in the van.
Jonathan acquired his first computer from the organization that manages the accessible housing in the apartment complex where he lives. They held a fundraising campaign, purchased hardware with the proceeds and gave it to all residents who had said they wanted it. His current system was paid for with money from a college program for students with special needs at his school and a funding agency for assistive devices.
Without it, Jonathan says, “I would not be in school.” He depends on his computer to complete the course work for his studies in architectural technology. Jonathan has a program that allows him to do all drawing and drafting on the computer, as he cannot do it by hand. He also has two types of speech recognition systems for writing.
One is good for dictation; the other is appropriate for commands. They are generally effective, except when Jonathan has trouble with his voice, or when noise from a train or a nearby factory interfere.
Jonathan had a table custom built so that he could sit at a proper height and angle to reach everything. This also addressed pain in his shoulder that had been aggravated by his previous table, which was too high and did not allow him to get close enough to the keyboard. Jonathan uses a trackball instead of a mouse, which he can detach from his computer at home and take with him to plug into a computer at school.
Jonathan does have one significant difficulty with his set-up. He wants to use speech recognition in conjunction with the drafting program, but so far he hasn’t discovered how some of the repetitious mouse actions can be made simpler through voice commands. He uses a splint so that he can type with one finger in the drafting program, but it’s slow going. It takes him three to four times as long as his classmates to finish his drafting assignments. In Jonathan’s view, the limitations in automating some of the commands currently accessed through the trackball adversely affect his productivity in comparison with his peers.
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