Accessibility

The week before Thanksgiving, with much inner trepidation and hesitation, I chose to attend Thespian Festival in a wheelchair. I borrowed a loaner from church, and my students hauled it on and off the yellow dog, the school bus, each day for me. The boys would set it up and I would climb down and into the chair, leaving my forearm crutches behind on the bus.

The reason for the trepidation is what I perceive to be a trade off. Each time I've chosen to use some additional assist, I got the desired result—increased mobility—but ultimately lost ability, a classic one step forward and two back. When at age thirty I first began using a cane—to go faster, I told myself—I did not expect to require it for basic mobility at thirty-five, or to need two canes for longer walks by forty. When I began using crutches for occasional longer walks at forty-five, I did not expect to require them to get across the room in my own home at fifty-five.

So as I climbed down off the school bus and into the chair that first morning, I couldn’t shake the dark conviction that I had better be planning ramp construction for my home, and shopping around for a wheelchair I can haul around in the WRX. The therapy and corrective surgery I endured through my childhood had as its goal moving me out of braces and off crutches. Going into a wheelchair is like giving up on a life-long struggle, worse even, a retreat behind my starting point. The only wheelchairs I ever remember using were the obligatory ones required by the hospital when checking out after surgery, and a dim, possibly imagined, memory of using one during that eighteen months I was in the hospital when I first came down with polio.

In my experience, there are no surgeries, assistive aids or techniques that make you "as good as new." No Dr., medical equipment salesperson, vocational counselor, or occupational therapist will use that phrase, not a wise one anyway. Wisdom aside, no one who attends to the advice of Counsel will say “good as new." In this age of litigation, such careless phraseology is an invitation to being sued. Even though I'm not sure anyone would really believe the phrase today. I wouldn't, but perhaps my experience is not normative. I believe all that technology, modern medicine, and modern science can do for the handicapped is “mitigate damage,” a legal term meaning to make better, but not to make whole--a long way, in fact, from "as good as new."

I felt deep reservations about leaving my crutches on the bus almost every time I did it. I didn't trust the chair to get me everywhere I wanted to go, even though I can't get everywhere I want to go even using the crutches--certainly I can't get where I want to go as fast as I want to go using them. It wasn’t logic that made me want to hang on to them. It was an emotional compulsion.

Logically, using a wheelchair was the best decision. I could move around with more ease and speed. In fact, I liked the speed. I haven’t been able to go so fast in decades. I was not as tired at the end of the weekend as I have been in the past. In many ways, I could monitor kids better because I was more mobile. Speed and mobility does not seem to be the choice many people make. I noticed a couple of students at the Festival who were temporarily in wheelchairs. For the most part, they allowed themselves to be placidly pushed around from place to place by a friend. When I reach a point where I have to be in a chair all the time I don’t think I will suffer being pushed around, set off to the side where I can see, and allow myself to be moved to the next overlook as the group and the action move on as long as I have any other option. Who would want to be like that, to be—what—furniture, baggage, a burden to others without even the usefulness of furniture or baggage? That’s pretty strong language as I see it appear on the screen from my fingertips. My logical best decision is still emotionally uncomfortable.

Emotion is probably why I feel it is such a production to haul the chair on and off the bus, but the places that aren't accessible to someone in a wheelchair are objective fact. At one point on our trip, we took an hour and a half at a mall for lunch and shopping. I spent most of our free time locating and using an accessible restroom, locating the lone elevator so I could get to the food court, negotiating a plate of food and a drink to a table, eating, and bussing my own table. At each step, I clocked myself so I could be sure not to get out so far that I didn't have time to get back to the bus by deadline.

Wheeling back to the bus, I estimated I had enough time to browse a bookstore. In the store, I noticed two things right away: First, the aisles between the bookshelves were wide enough to negotiate in my wheelchair. Second, stacks of books had been added to the aisle floors, increasing the books on display--it is after all the beginning of the Christmas shopping season and the more product displayed the greater profit potential. At one turn, I found myself with a book tangled in the wheelchair spokes. It was inadvertently captured during a tight turn through aisle book stacks.

A Doctor once told me a physical difference was a significant life change if you had to modify your lifestyle to accommodate it. If I can’t get lost in books in a bookstore without having my attention yanked out of the books and onto the path my chair is threading through the shelves, then my browsing days are over. I can shop, but not browse. On the other hand, in recent years tired feet and weak legs curtailed my browsing. Later, as I wheeled down the mall, passing strolling shoppers on my way back to the bus, it occurred to me that drink-in-hand strolls do not happen in a wheelchair. It was an odd thought though. Since I have been on crutches, such a stroll has been out of the question, also I do not remember ever strolling drink in hand even when I had a free hand to hold the drink rather than a crutch or a cane. Are these lifestyle changes or minor inconveniences?

If strolling, browsing, clocking my travel time, and always keeping the path to an accessible restroom in mind are minor inconveniences, some of the other trade-offs are potentially major. Spending the day in a wheelchair makes my feet swell more than usual, requiring more prone-with-elevated-feet time to recover. In addition, after the first day, my back hurt in the evening, on into the next day, and continued to hurt until a day after the trip was over. There may have been some additional strain on my back from pushing or sitting in the chair. Finally, after three twelve-to-fifteen-hour days in the chair, I perceived myself to be weaker--less able to walk, though that perception could have been a kind of hypochondria, a negative assessment prompted by my emotional reaction to what I perceived as giving up. In fact, I cannot objectively prove a cause and effect association between any physical setback and the use of any new assist. The physical setback could be caused by age, weight, the illusive post-polio syndrome, or I don’t know what—barometric pressure, maybe? Well, I did say potentially major.

What is truth here? I think the truth is about limited accessibility, but not the kind of accessibility the ADA addresses. My last three months in Abilene nearly thirty years ago I worked as a night shift custodian in the old downtown Timex factory. Three of us were responsible for daily sweeping, dusting, trash emptying, and window cleaning along with a rotating schedule of larger jobs. We were busy. There was really too much to do. I learned quickly that if we did not clean as well as someone I never saw thought we should have, we had to suffer a motivational talk from our supervisor. The result of a couple of motivational talks was a brisk work pace and a little compulsiveness about cleanliness. After two weeks, I noticed that my perspective on my environment had changed. On a walk through a classroom building at school, I noticed every scrap of paper on the floor, every smudge on the windows, etc. etc. I didn’t feel compelled to run around cleaning up everything in sight, but to a certain extent my perceptions were hijacked by my job. This is what I mean by limited accessibility.

When a leisurely lunch and relaxing stroll in a mall is consumed by things like potty runs, transporting a meal to a table and then to the trash, long runs to the lone elevator in a city block, etc.; my perceptions, thoughts, and energies have been hijacked by minutia and I’m left with limited access to my own faculties. I appreciate what the ADA attempts to do. It does help, but like all other assists it is a mitigation of damages. Accessibility is limited and can never be made as good as new.