DECISIONS



On December 20, 1974, I graduated from the University of New Orleans with my B.S. degree in Geology. It was a particularly joyful day in my life. I had conquered the first self-recognized hurdle on my path to my perception of independence and now felt mighty good about myself and my ability to cope. We had a party at my home and many of the friends I had made during the past few years CAME. Everyone seemed to have a good time and I, well, I was in ecstasy. No one, however, asked what I would be doing next. No doubt everyone knew I did not have a job lined up at that time. They also knew I was going to the University of Illinois the following August - maybe.

For about a year prior to that date, I had been searching for another university at which I could continue my education. I had decided it would be best to attend a different university for graduate work in order to be exposed to a broader range of ideas and opinions. I used the quality of geology programs and the quality of rehabilitation programs as my primary selection criteria. The field of selection had been narrowed to the University of Missouri at Columbia and the University of Illinois at Champaign-Urbana. My parents and I went to visit both schools during October, 1974.

We visited the University of Missouri first. The faculty and facilities of the Department of Geology impressed me greatly. Apparently I made a good impression also because I was assured that I could begin in January, 1975. In the afternoon, I was interviewed by people working with the rehabilitation program. As they explained the program to me and showed me around the living quaters, it became clear that things would be similar to my experiences at the University of New Orleans. I would again have someone to help me with my physical needs, such as bathing and dressing. It would be very comfortable for me, not much of a transition. They even mentioned teaching me to operate an electric wheelchair so I could better negotiate the hilly campus. The people with vocational rehabilitation there also said that I would be recommended for admittance in January, after I had obtained my B.S. in December. At this point, it merely seemed to be a question of whether I liked the University of Illinois' Department of Geology better.

The next morning found me at the U. of I. Geology Department and, once again, I was informed by members of the faculty that I would be recommended for acceptance in January. The people and facilities there impressed me to the same degree as did those at Missouri; therefore I felt I would have to go home and really study the imformation I had gathered before I could make a proper decision. No gut feeling was available to make the decision easier.

That afternoon my attitude and, subsequently, my life completely changed. I went to the Vocational Rehabilitation-Education Center for an interview. After giving me a tour of the modern center, I was placed in the hands of one Professor Chuck Elmer, the physical therapist of the center. He conducted my physical evaluation like a drill seargent. A physical evaluation had not been performed at Missouri, so I immediately realized that these people were more particular about the students they would recommend for acceptance to the university. The first thing I was told to do was get out of my wheelchair and onto a floor mat. This was one task I had learned on my own. The next chore was to get back into my wheelchair. Easy. Dr. Elmer only suggested I lock my wheelchair next time, which I hadn't taken time to do. Then I was told to transfer into a straight chair from my wheelchair, and then back into my wheelchair. Again, I had done this before and so had no trouble. "Come into my office," he said. "What a cakewalk!" I thought. "He's probably so impressed by what I can do he's going to just call the rest of this thing off."

Inside his office:
"Can you dress yourself?"
"I can put my pants on, but I can't zip them up or fasten them."
"Is that all?"
"Uh. I can get a T-shirt on by myself, too."
"Can you get the shirt off?"
"If it buttons I can usually unbutton it and wiggle it off my shoulders."
"But you can't button a shirt?"
"No."
"Anything else you can do to dress or undress yourself?"
"Just that I can get my pants off if they're unfastened and unzipped."
"Can you go to the bathroom by yourself?"
"No."
"Why?"
What a question, I thought, and began to feel uneasy. "Well, I need someone to help me onto the toilet. Then I need someone to wipe me and help me back into my wheelchair."
"If you can transfer to a chair, why can't you transfer to a toilet?"
"Well, now that I think about it, I guess maybe I can. It's just not set up the same way."
"Why can't you clean yourself?"
It should be obvious to any good physical therapist that I do not have the ability, I thought. Then I tried to answer the question with self-assurance. "Well...actually, I've never really tried, but I'm sure I would touch the water with my hand." That nasty water, I thought disgustedly.
"If you've already flushed the toilet, that water is as clean as water in a sink." He appeared to have read my mind.

The interview went on like that, seeming to slide faster and faster downhill. Until the line about flushing the toilet, I had begun to think maybe this man was a little touched. Certainly, he didn't know his job. He was expecting far too much of me. I knew, because many people had told me they were surprised I could do so much for myself with the kind of disability I had. Indeed, I was beginning to not think so highly of the rehabilitation program at the University of Illinois. If they expected people to already be able to do such things, were they really rehabilitating anyone here? Surely they would not want to cope with me.

Even as these thoughts were jumbling and tumbling in my mind, that line about clean water began to change my thinking on the matter of performing everyday tasks. Why should I worry about getting my hand wet with fresh toilet water? Because I didn't think others did it? That was absurd! I could learn to wash my hand, or hands, after going to the bathroom even if I did touch the fresh toilet water. Also, transferring onto and off of a toilet should be no more difficult than if the toilet were a straight chair. Suddenly, my thinking seemed to have hit a brick wall and exploded, sending questions into a hundred different directions at once.

I was assaulted by conflicting feelings. I saw at last that I did not have to do things like other people. I could use adaptation to find my own way of doing some necessary or desired task. It did not have to look like the way anyone else did it! What a revelation! What a shock to realize part of my thinking had been wrong for years.

At the same time I was scared to death. I was scared because I could envision myself trying and failing to accomplish things that still seemed improbable, if not impossible.

Later in the interview, Dr. Elmer emphasized the need to a) think carefully about each particular problem, b) formulate one or more possible solutions (preferably more than one), c) choose the solution which appears to be best, and d) put that into practice. If the solution worked, one should use it again and again until it became natural. If it did not work, one should choose the next best solution or try to formulate new solutions. In my opinion, these simple rules, and the thinking behind them, cannot be emphasized enough.

It is also very important for the individual to always think about possibilities for improvement. Even if a particular solution or method has worked well for years, it can invariably be improved or discarded in favor of something better. In this manner techniques can continually be refined, saving time and energy. Refining solutions is important because in many of the world's societies efficiency is at a premium, especially where everyday tasks are concerned.

Having completed the interview, Dr. Elmer took me to see the assistant director, Dr. Konitzki. On my way, I passed my parents who were sitting in the lobby and my mother later told me that my face was almost ashen. It should have been. Three things weighed heavily on my mind at that time.

First, I had been knocked from my pedestal. Instead of being an overachiever as far as physical independence was concerned, it had become dreadfully apparent that I was far from reaching my full potential. One reason for this ego crushing realization was that a part of my thinking seemed so idiotic in light of ideas and concepts just beginning to implant themselves. For example, because physical and occupational therapy had ceased providing any observable progress long ago, I had assumed I could stop thinking very hard about ways I could get things done. In other words, if therapy had ceased helping me improve, I felt there certainly was nothing I could I do on my own. I had always believed there was no use worrying about something I couldn't do anything about. Consequently, the realization that maybe I could have been doing something like dressing myself for years overwhelmed me! On a scale that had a dumb monkey at one end and an intelligent man at the other, I felt very closely akin to the monkey.

Second, the people of this rehabilitation center did not seem too impressed with me. Meeting other staff previous to Chuck Elmer reinforced this perception. This was very disconcerting because I was used to strangers being thrilled and amazed at the brave disabled person who had overcome so many obstacles. To these people I was an average, fairly pleasant young man who had a lot to learn.

Lastly, I was already feeling I would not be admitted into the program. This constituted a huge failure in my eyes. At that point I felt like hell. OF COURSE, MY FACE WAS ASHEN!!!

While I was talking with Dr. Konitzki, he threw out another "point to ponder". He made me realize that even if I obtained a well paying job after graduation, I would likely have to pay someone at least half my salary to help me with the things I could not do for myself. Thus, a well paying job would become a work-all-the-time-but-barely-get-by job. I was not expecting to be paid so much that I would be free of financial worry. (My ego is big, but not that big.) I did envision doing a lot with my paycheck, however. Having that paycheck suddenly sliced in half painted an entirely different scenario. Yes, I had expected to pay someone to help take care of me later on, a few dollars. I had never seriously thought about how much I would have to pay. At that point I realized that a fair wage would be more than a few dollars. Simple lesson: the more I could do for myself, the less I would have to shell out for a caretaker.

Before my parents were called in to join the discussion, Dr. Elmer came in and handed Dr. Konitzki a piece of yellow paper, then left. As soon as he had finished reading it I asked if I would be accepted. I knew that was what the paper was all about. I also felt I knew the answer.

"No, we cannot recommend your acceptance to this university in January because we feel you can do more for yourself than you are doing at present. We think you are capable of becoming more independent by learning to do more for yourself. Alao, we do not feel you can be expected to carry a full load in graduate school and learn to take care of yourself at the same time. Therefore, we suggest that you stay home after graduation from the University of New Orleans until next August. Use that eight months or so to concentrate on teaching yourself self-care techniques.

"Of course, you do not have to listen to our advice, and we know you would probably like to complete your education and go on to other things as soon as possible. But we feel that a few months' time taken to learn these things now will save you years of frustration in the future. You will not be as dependent on others as you are now."

I could feel a flush of anger and resentment rising within me. I tried not to let it show. What did they know about how much more I could do for myself? Of course I wanted to get on with things. I had been in college nearly five years and, because I got a late start, I was almost 26 years old. As far as being independent was concerned, if I prepared myself for a decent job wouldn't I be lessening my dependence on others?

"If I do follow your advice and stay home for 8 months, will you somehow teach me to do these things?"

"We will give you a few suggestions but most of it will be on your own. ("Damn," I thought, "they don't even want to help me!")

"Every individual is different," he went on, "and he or she must find the best way for him or her to accomplish a particular task. Basically, all an individual has to do is think about the problem at hand. We can offer suggestions based on what others have done to solve problems you face, but no one knows your capabilities as well as you.

"We'll ask that you send us a monthly progress report along with any questions you may have. If your reports indicate sufficient progress we will invite you to Functional Training Week. This is the week before the rest of the students arrive on campus. During this week you will be evaluated as to how well you can live on your own. All of our disabled students are expected to manage on their own. Although most have roommates, the roommates are not attendants and do not want to be tied down. Very few people are willing to sacrifice a lot of time in order to help someone else, especially when they're under pressure. During Functional Training Week we will not merely observe; we will help you learn things, such as the best way to take a shower. If, during the course of the week, you demonstrate that you are capable of taking care of yourself, you will be cleared for acceptance by the university."

That was basically it. The pep talk, such as it was, was over. Dr. Konitzki, however, had one more reinforcement for his argument. Before he let my parents and me leave (at 5:30 or 6:00), he got in touch with a student by the name of Andy Livesey because Andy's disability was much like mine. My parents and I were sent to Andy's dormitory to talk with him. Andy answered our questions and showed us around his room and the bathroom. Although it was obvious that he could use his hands better then I could, I was duly impressed at how much he had learned to do for himself.

The decision facing me now went from minor to major, from simple to complex. I had expected to base my decision primarily on the differences in the geology departments at the University of Missouri and the University of Illinois. The process of evaluating those departments involved many factors, but that process paled in comparison to the task now before me. Indeed, my present level of physical ability ruled out attending the University of Illinois. If I wanted to still be able to make a choice as to which university to attend, I now had to resolve to become as physically independent as possible. Was it worth it?

We went back to the motel room that night and, after my mother unfastened my trousers, I went into the bathroom. (The bathroom door happened to be wide enough for my wheelchair.) I pulled my pants down, successfully transferred onto the toilet, urinated, and transferred back into my wheelchair. It was a small accomplishment but an important one.

At that point the decision had been implicitly made. Though I did not commit myself at that time, I knew deep down which road I would have to follow. The gut feeling so often needed in decision making was now there. The decision became a relatively easy one. Later, I was able to articulate my reasons for choosing what seemed to be the harder road to follow at the time. First, I would certainly learn more about taking care of myself if I spent 8 months facing various problems and trying to solve them. That alone was enough to make the prospect worthwhile. Even if I could not learn enough to enter the University of Illinois in August, I felt the things I might learn would be useful to me the rest of my life. Second, if I "washed out" during Functional Training Week, I could probably go straight to the University of Missouri or even back to the University of New Orleans. Having alternative courses of action, I felt less afraid of the unknown. Third, I felt the challenge and wanted to meet it. For a long time I had prided myself on accepting reasonable challenges - a reasonable challenge being defined by me as one with a low risk of harm to myself and to others. This challenge seemed imminently reasonable.

Soon after my graduation from the University of New Orleans in December, 1974, I began working on self care. The first thing I resolved to learn was to eat pieces of food from a table so my stepfather could go to work without feeding me every morning. The next thing I learned was how to get dressed, socks and all. Then came undressing, bathing, shaving, toileting, and many other tasks I had once dismissed as impossibilities. I continued to work diligently for the next 8 months, being accepted at the University of Illinois in August, 1975. Of course, I first had to endure the rigors of "Hell Week" as previous students had so aptly dubbed Functional Training Week.

I hope the story just related clearly illustrates the principles this book attempts to convey. In case they did not stand out, however, here again are three principles I find very important.

First, a change in attitude is necessary in many cases. The degree of change that is required depends on the attitudes already held. With me, the degree took the form of an about face in 1974. At 26 years old I found that part of my thinking needed to be redirected to a completely different path from the one which it had been blithely stumbling along for years. The change may not need to be that drastic at all for others. Whatever the degree of change, however, it must be enough to make one realize that MORE CAN BE DONE! Without this knowledge, this feeling, one will never begin to reach their full potential; will never become as independent as they can be; and, finally, will never become as happy and content as they could be. That is a far-reaching statement, but my experience has shown it to be extremely accurate.

Second, the narrative illustrates the need to think of alternative solutions to a problem when the "standard" method either cannot be employed or takes too long due to a physical disability. Individuals should not worry if alternate methods seem odd or do not "look good" to other people, as long as they are not grossly offensive to others. The basic rule here is: If a method is functional, use it.

Third, the need to practice a workable method was impressed on me by being told to basically do nothing except work on self care skills for 8 months. Remember, once a method is found that works, it needs to be practiced, and then practiced some more, until it becomes second-nature. Non-disabled folks have been performing certain tasks since they were very young and so have had lots of time in which to learn, practice, and refine their methods of doing things. Therefore, disabled individuals must practice often (not merely apply the methods when the tasks need to be done) in order to refine whatever methods are chosen. When a method becomes second-nature one can apply it without having to think about it, thus leaving the mind free to think about other subjects. Sometimes one may even want to think about how to improve the particular method. It is good to go through this process of reevaluation once in a while even after the method has become second-nature.

These three principles need to be embedded in the mind, especially the first one: MORE CAN BE DONE! They can change a life drastically. They have turned mine around.





<< Back

Contents

Next >>