Mike leads an active lifestyle and his choices regarding assistive devices revolve around their ability to support or promote his independence. He said he likes to travel, paint and “visit friends and be involved socially. Doing lots of things.” Above all, his priority is to remain healthy and mobile. When making informed decisions about assistive technology, Mike turns to his network of friends, colleagues and rehab professionals. He weighs their advice against his own experience, and says, “The ultimate choice is mine.”
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Mike was injured 21 years ago. After being confined to his hospital room for a while, he was happy to be able to “get up into anything.” He started using a power chair while still in the hospital and, because he was glad to be up and around, he says, “I loved being in the chair and the quicker I got somewhere, the better. So I used to fly around the hospital.” By the time Mike was ready to leave the hospital, he had his own chair, and after using it for a while, he recognized that it was “totally inadequate.” He recalls, “The earlier I got up in the day, the more exhausted I would be quicker.” Mike came to believe that the reason for this problem was that he needed a chair that reclined.
Through his attendant, Mike discovered that there “were other options…. He brought in some catalogs. I looked them over and I went to my doctor and asked for a prescription for a recliner. I went to a seating clinic and got the correct chair.” Mike was happy with his second chair and used it for 13 years.
Mike’s newest chair is an elevating chair and he is “delighted” with it. He says, “I’m kicking myself for not having gotten this chair a long, long time ago.” Besides being more comfortable, this new chair allows Mike to do more than he could with his previous chairs. It has a height adjustment feature, which enables Mike to raise the seating system about 12 inches. He says, “I’m able to reach things I couldn’t. I’m able to turn on light switches. I’m able to operate elevators when I couldn’t before. I’d get in the elevator and I had to wait ‘til somebody came along, now I don’t. I’m much more independent.” Because the chair is so compact and has front-wheel drive, Mike is able to get into places he wasn’t able to access before. “So there’s friends of mine [whose] houses I couldn’t get into before because of the length of my chair and now I can get in.”
For Mike, tilt and recline are the other important features of this chair. They enable him to shift his weight and relieve pressure. Being able to do this is important for Mike’s circulation and helping to maintain his skin, thus avoiding pressure sores. He is also able to stay in his chair for longer periods of time. In his words, “It changes my whole lifestyle. I would be much more stuck at home or I would have to stay in places where I would be able to transfer.”
For Mike, the vendor and especially their reliability are important considerations. In the past, there were only a few vendors and choosing one came down to “who was available.” Today, there are many more vendors around and it is a “process of elimination as to which is closer and more reliable.” He also takes into account how knowledgeable the vendors’ employees are, as well as the reliability of the wheelchair or other assistive device, because “the less the chair goes to the shop, the more I’m out of the house and enjoying my life.”
With regard to cushions, Mike sits on a high-profile, custom air cushion and uses a low-profile air cushion for the back of his chair. Although cautious, he is open to trying new things. When Mike’s doctor suggested that he try the cushion that came with his new chair, he made sure that he could transfer his old cushions into it. So when the new cushion didn’t work, he simply put his old cushions into his new chair.
For Mike, transportation is “a huge issue.” His volunteer and advocacy work along with his recreational activities require him to travel extensively. As a trained clinical social worker, Mike’s volunteer work involves counselling individuals, families and groups. He is also a political advocate, trying to “get bills passed that’ll assist people with spinal injuries.” He believes that without his van, he would be unable to continue to do as much as he does.
When Mike was first discharged from the hospital 20 years ago, he did not have an accessible vehicle. Mike says, “I had to battle with the insurance company for years to get a vehicle with an electric lift.” There was no paratransit system in his area at the time and, rather than paying for an accessible van for Mike, the insurance company opted to pay for an ambulance to transport him to and from medical appointments. He said that they would “take me from my chair, put me in the stretcher … it was ridiculous.” In order to get around, Mike relied on his attendants to transfer him in and out of their cars. That was an “extremely frustrating, extremely difficult” time for Mike. He “struggled to go anywhere.”
Eventually, Mike won his battle with the insurance company and got a modified van. This vehicle had a tremendous impact on the quality of his life. He says, “Rather than it being a project to go to the grocery store, or go shopping with my kids or to the movies, it was a breeze. And it was enjoyable as opposed to, ‘Oh damn, we’ve got to go through all this again.’ So because of that, my attitude changed immensely. And life became much, much easier and more enjoyable.”
Mike’s attendants drive his van. He has always owned a full-size van because he travels a lot and says, “I have so much stuff.” Mike’s first van had a raised roof, a power lift and a manual tie-down system for his chair. Mike’s current van has a lowered floor and an automatic lock-down system. He prefers the lowered floor because he has a better view and because it allows him flexibility when parking. He also likes the automatic lock-down system because, “It’s a process that can be eliminated … why bother when you can do it automatically?” Mike also has a manual tie-down system for friends who use wheelchairs.
Mike likes to travel and has been all over the U.S. He has learned a lot from his experiences over the years and spends a lot of time making arrangements ahead of time.
When flying, Mike “demands” a bulkhead seat. He says, “I try to make airline ticket reservations well in advance so that I can get that seat. If they can’t give it to me, then I demand that I go first class and let them pay for it.” Mike gets into the airplane seat by driving his wheelchair to the plane door. Then, he says, “The baggage people lift me out of the chair and put me in a very narrow aisle chair and drag me into the airplane, then put me in the first seat in the second class.” For Mike, the extra space of a bulkhead seat is important because he needs to get assistance from his attendant throughout the flight. Mike needs help with “positioning” in the seat. He uses the air cushions from his wheelchair and explains that he periodically needs “to lean forward, relieve the pressure off my buttocks, stretch a little bit.” Mike says that he also needs “to get help eating and be very aware of my breathing” when flying.
Once he is in the airplane seat, Mike’s power chair goes “down in the baggage area and, depending on which airline, it comes back in good shape, or quite damaged.” He recalls that on one occasion, his chair was “bent so badly that I drove it on three wheels.” Now, when flying, “no matter where I’m going … I call weeks in advance to find out about a repair shop and rental shop so that if my chair is damaged, I would have a chair…. And before leaving the airport, I go to the insurance claims agent and make sure they understand that it was broken during the transport by the airline, and that’s why I have to use the rental.”
When travelling, Mike requests an accessible room with a wheel-in shower. Sometimes, he gets exactly what he needs and sometimes he doesn’t. On a recent cruise to Alaska, Mike had to stay in a hotel overnight before boarding the boat the next day. He informed the hotel of his need for a wheel-in shower and says, “Their definition of a wheel-in shower is different than mine … they had a tub with the chair seat.” The hotel was willing to “transport me to the only wheel-in shower in the whole city” at their expense, but Mike was tired and opted not to. “So, I just did the bed bath thing. Then I got onto the ship the next day. It was much more accessible.”
Mike’s new elevating wheelchair was an added convenience on this trip. With his old chair, he would have had to remove the footrests each time he used the ship’s elevator. But because this chair is so compact, Mike was able to access the elevator without going through “another process.”
On this particular trip, Mike brought along his manual wheelchair. He says, “We stopped in four ports, two of which had ramps that I could ride my electric wheelchair down; the other two did not…. I had to be transferred to my manual chair and carried down the stairs. The first destination, I got into a train that had an electric lift and then the second place we got onto a bus that had an electric lift. The third place, we got into a van, again with an electric lift that brought me to a helicopter that used something similar to a stair glide to transfer me to the helicopter. They transferred me to the helicopter and off we went.” For Mike, the helicopter was the “highlight” of the trip. He says, “The stair glide thing was designed just for that…. It has a battery in it, you wheel it out, put it next to your chair, transfer onto the seat, and the seat is at an angle and the whole thing doesn’t tip over, you just go right up.”
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For writing, Mike uses a computer with a conventional keyboard and mouse. He types letters, reports and proposals by using both hands and his “splints with the pencils in them.” Mike has not pursued speech recognition because he says, “It would take me weeks to learn it and I don’t choose to take the time to do it at this point.” Mike believes that speech recognition would be a great help, but for now, typing is “good enough.”
In 1985, Mike got his undergraduate degree in social work and then his master’s degree in 1989. While in school, Mike sometimes wrote his own notes using a “beanbag table on my lap,” later comparing his notes with those of a classmate. Other times, Mike’s attendants took notes for him in class. For exams, he would either use a tape recorder or his attendants would write while he dictated.
Mike recalls that while he was in school, his attendants sometimes sat with him to turn the pages while he studied. Now, things are different. “A lot of it is electronic, it’s really cool.” In particular, Mike likes “to stay in touch” through email. Having the computer also makes a big difference where Mike’s volunteer work is concerned. He doesn’t go to the office every day and it makes him feel more connected. He adds, “A lot of my advocacy is done right here out of the house. I make phone calls, I type letters…. I’ve got my own duplication system and I can email out of here.” Mike purchased the computer hardware and software on his own. He didn’t even think to ask the insurance company for funding because “the less they know about my life the better.”
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For the last eight years or so, Mike has been painting. He finds it “fun and very therapeutic.” Mike uses photographs to paint from and has his attendants take photos for him. He used to take a lot of photos and recalls, “My wheelchair repair shop showed me a device that singers use for their microphones. It’s called a gooseneck. And I got the gooseneck attached to my chair with a C-clamp, put the camera onto the gooseneck, screwed it in place and I would take my own photographs. Now I’ve got the real simple camera … focuses for you.”
Mike explains that for painting, “I use my beanbag table on my lap. I put my watercolour paper on top of it. Usually I use my over-the-bed table to hold my photographs and next to me, I put my paints. I put my hand splint on with my brush in it, and I reach to my left and dab in the water and correct paint, and then bring it in front of me and paint the picture.”
Remaining healthy and active is a priority for Mike. Because pressure sores and other health matters threaten his mobility, there are a number of precautionary measures that Mike is mindful of and takes very seriously.
When Mike was first discharged from the hospital, he decided to move into an apartment with his family rather than a transitional housing arrangement. Not surprisingly, his apartment did not have an accessible bathroom. He explains that he had a “commode chair and had bed baths, and I went to the local high school once a week and showered up in their showers.” Mike did this for about a year and a half until the insurance company found a contractor to modify his apartment. For Mike, “cleanliness is top priority. Again it comes back to skin care and if I’m not physically clean, my skin starts breaking down and I’m back in the hospital and I’m miserable.”
While in rehab 20 years ago, Mike was asked if he wanted to try using an alternating air mattress on his bed so that he “wouldn’t have to be turned at night.” Mike liked it and has been using it as an overlay ever since. Mike says that the air mattress allows him to sleep without interruption, and helps him avoid skin breakdowns by circulating the air and shifting his body weight.
Until recently, Mike always had a live-in attendant. He likes living on his own and has several remote controls that help him operate the lights, stereo, TV and VCR. Of particular importance is the remote control that allows him to independently “access the fan. It’s very important that I don’t get too hot because I can’t sleep for one, but I do sweat and it’s not good to have the sweat on my skin; that also creates problems.”
Mike has a gym in his home and does an exercise routine three times each week. With some assistance, he uses the parallel bars and lifts weights. He explains that this routine is important in helping him “keep my muscle tone up and my skin condition up, and circulation right. And it helps my bowel and the bladder.”
Because he is now alone at night, Mike’s nurses encouraged him to get an emergency call button, which he wears on a necklace. This device is new for Mike and he only got it because his nurses were concerned. “I do have a telephone right next to me … it’s not like I’m totally deserted. But I understand the nurses’ concern.” In an emergency, Mike would push the button on the necklace and a “signal goes to a relay station.” The relay station would call Mike and determine if the problem is “life-threatening or just that I need some help.” Depending on the nature of the call, the relay station will either call 911 or three of Mike’s nurses.
Mike enjoys a full, active lifestyle and in order to preserve it, he goes through great lengths to maintain his body and remain mobile. From his wheelchair and van to his fan and air mattress, Mike’s choices in assistive technology are greatly influenced by his need to maintain or enhance his independence. He has learned to assert his rights with his insurance company, and has actively and successfully pursued technology he believes he is entitled to, which will enhance the quality of his life. Mike has become an informed consumer and is always willing to try new devices and listen to the advice of others before making his own decisions. He has also become an experienced traveller and says, “I like to be out and about. And I enjoy being with people and not a burden in the whole process.”
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