How I Learned to Stop Worrying and Embrace Technology
I have now been struggling with the effects of post-polio syndrome for nearly twenty years. It first appeared as a weakness in my right leg, the one most affected by polio, in 1987. Over the ensuing two decades, the leg has gotten weaker and I began to have breathing problems at night. These physical problems have led to an increasing reliance on technology to help me breathe at night and to move around during the day. I have used a Bi-Pap machine at night since 2000 and since August 2006 I have used both a scooter outside my home and stair glides in the house.
Like some other polio survivors, I resisted getting the ventilator, the scooter, and the stair glides. I had not used any assistive devices since the early 1960s when I had two surgeries that necessitated using crutches for a couple of months. I was proud of my ability to get around on my own without assistance. I could never walk very far—no Appalachian Trail or marching band for me—but I got around quite easily. I associated assistive devices with disability, and I didn’t consider myself disabled. Inconvenienced at times, but not disabled. Using the technology of assistive devices was something I resisted. I wanted to do it my way, even if that was increasingly painful.
My first concession to the encroaching post-polio syndrome was to begin using a Bi-Pap ventilator at night in the fall of 2000. I had spent part of that summer at San Francisco State University studying disability and disability history with 25 other scholars, some of whom had disabilities of various types. I not only studied the way in which disability is constructed by society and the ways in which those with impairments are made to feel inferior, I also observed the ways in which my colleagues used their assistive devices to function effectively and easily. When I returned to Allentown I had a sleep study done, which revealed serious sleep apnea, which explained why I was waking up tired. I wasn’t happy about the doctor’s recommendation of a Bi-Pap, but decided to try it. Getting used to the mask was not easy. The first couple of nights I did not get through the whole night with the mask on. By the end of the first week, when I could make it through the entire night with the machine on, I began to notice a real difference. I was sleeping through the night, instead of getting up two or three times. And in the morning I was more wide awake and less tired. I have used it every night since, both here and in Europe, except when we have had a power outage. It goes with me when I travel and I rely on it to help me get a restful night’s sleep.
In some ways the Bi-Pap was easy, in spite of the challenges of adjusting to the mask. No one had to know except my doctor, my wife, Carol, and our dog, Abbey—who thought it was a vacuum machine when I first turned it on and fled the room. Because I used it only at night, it was a hidden technology unless I revealed the secret. Fortunately, my wife, Carol, and my dog, Abbey, both adjusted to the noise of the machine.
My next device would be more public—using a walking stick when there was snow on the walks. As my leg weakened, it became problematic to walk on uneven pavement such as those covered by snow and ice. So, about five years ago I began using a walking stick in winter. It was a bright red walking stick I had purchased in the early 1990s in Zermat, Switzerland, so I could delude myself that I was getting ready to scale the Alps. At least it didn’t look like I had purchased it at a medical supply store. For the last two years I have been using the stick whenever I have any distance to walk. It helped give me stability and prevented several falls. But I could tell from the increasing pain and decreasing distance that I was willing to walk that I needed to think about getting a scooter. In the summer of 2004 I purchased a Volvo station wagon that was capable of hauling a scooter, but I wasn’t yet ready to get the scooter. Finally, in the summer of 2006 I decided it was time to get serious about a scooter and stair glides, as I was deciding not to do too many things because of the pain it would cause. I checked with friends in the support group about reliable suppliers as well as with colleagues at the Lehigh Valley Center for Independent Living, where I serve on the Board of Directors. I was able to try out three different scooters to see what worked best for me and which fit in my station wagon. My wife and I also decided to put in two stair glides. We had considered moving and had looked at ranch houses, but the prices were high and we liked the house and neighborhood we lived in. In August both stair glides were installed so that I could easily get to the upstairs and to the basement (that way I could help with laundry). I also bought a scooter (a Pride Revo) and had a lift installed in the Volvo so I could get it in and out easily. I began using these new devices immediately.
I think my biggest anxiety about these new technologies was using the scooter. Again, the stair glides were relatively hidden unless you came to the house. But the scooter would be right out there in public—no possibility of hiding if it was going to be useful. I was apprehensive about using at Muhlenberg College where I teach, but I had a few weeks before classes started to get used to using it on campus. I need not have worried. My colleagues and the students, when they arrived on campus, have been very accepting. Some have been interested in the scooter itself, others have asked about the reasons I use it, but most have simply accepted it as part of the scenery. I decided to be very open about why I need it, so I don’t really mind the questions. It has made it much easier, and much less painful to get around campus. I no longer have to think “do I really need to go to the library” or “do I really want to go to lunch in the union.” I just get on the scooter and go. My only challenge has been the automatic door openers. I have become the unofficial tester of door openers. The maintenance staff is very good at fixing them, but they do seem to stop working all too frequently. Winter and snow pose another challenge, but the crews have traditionally done a good job on clearing the walks, so I am optimistic.
In addition to using the scooter at school, I have used it at Wegmans, Target, and the mall at King of Prussia. I took it to Valley Forge Park and the Allentown Art Museum. And I have been walking Abbey with the scooter. For several years our walks had been more of the “stroll and sniff” variety. She adjusted to the scooter very quickly and now enjoys longer and more vigorous walks.
As I got used to the new technologies and discovered that they were liberating in many ways, I began to think about why I, and perhaps others, so often resist using assistive technologies. After all, there are many other technologies I use without a second thought. I have worn glasses since second grade. This essay is written at the computer while listening to the radio. Technologies all. We use technology to heat and cool our homes and to transport us. But we resist when the technologies can help us deal with the impairments of post-polio. In part, that is because so much of society still views scooters or wheelchairs as emblems of disability. But if we buy into those social attitudes about assistive devices, we are the ones who become disabled. We are the ones who choose not to go places because it is too tiring or too painful. We are the ones who miss out on things we enjoy if we don’t adopt the available technologies.
So far, people at the college and elsewhere are very accepting of the scooter. I have tried to project a positive approach to using it, treating it as just another piece of technology. Surely, if it is normal for many people to walk around the store talking on their cell phones (another piece of technology), it is normal for me—or you—to scooter through the same store. I know I waited too long to get both the scooter and the stair glides, in large part because I didn’t want to admit that I needed them. Polio survivors, and others who need them, will be better off if we can think of assistive technologies as just another modern technology that help us live better and easier lives. Cell phones make for better and easier communication. Scooters and stair glides make for better and easier mobility. I am not sure I really love technology, and that includes computers, cell phones, and scooters, but I know that all three have made my life easier. We don’t have to embrace technology, but at least let us use the technologies that improve our lives without fear or trepidation.
Revised from the original in 2017, with Daniel J. Wilson, PhD, by PA Polio Network with permission from Post-Polio Health International.
Reprinted from Post-Polio Health (formerly Polio Network News) with the permission of Post-Polio Health International (www.post-polio.org).