THIRTY YEARS OF QUADRIPLEGIA
BOOK EXCERPT
BY ANDREW I. BATAVIA AND MITCHELL BATAVIA
There was still one small matter: getting the job. I honestly cannot remember the interview, or even if there was a faceto-face interview. I am sure that there was some type of interview by the camp director, Lee Morrone, one of the most respected people in the area of intellectual disability at the time and the mother of a child with an intellectual disability. Apparently, the interview must have gone well, because I got the job. I was particularly proud of this, in that it was my very first job and at age sixteen I was going to be the youngest counselor at a camp for kids with intellectual disabilities. Whether my getting this job was a matter of fate, I will leave to you.
MY BEST SUMMER EVER
I mentioned earlier that I spent much of my youth waiting for it to end. And this summer was as close as I had come to being on my own. Of course, there was still plenty of adult supervision, but it was a different type of supervision than I had experienced previously. The adult who would become closest to me was Bob Peters. Bob was a legend at the camp. He was a full-time teacher of children with intellectual disabilities during the year, who spent his summers as a counselor at the camp for many years. I am sure that he was assigned as a senior counselor of our group, in large part, because Lee wanted to be sure I had appropriate adult supervision, and he was the best.
I can still remember the first week of camp in early July 1973. The counselors and other staff arrived the week before the kids. The administration held marathon meetings with the counselors, briefing us on every aspect of every camper, not just the campers assigned to our groups. Throughout the summer, each of us would work, in some way, with each and every camper. We needed to know their functional levels, medical conditions, medications, and other personal characteristics. Medical conditions were particularly important, because many of these children had multiple disabilities; for example, many of them also had epilepsy and required medications to control their seizures, which could be life-threatening.
I said that this was a camp for children with intellectual disabilities. Well, some of these “children” were about ten years older than I was and had more hair on their chests than I had on my entire body. The fact that their mental ages ranged from between seven and ten still did not reduce the initial shock of seeing them. At times throughout the summer, I had night duty, in which it was my responsibility to wake up some of these big guys very gingerly in the middle of the night to give them their antiseizure medications; if one were to wake one of them too abruptly, it could trigger an epileptic seizure, in which case I would have to basically wrestle the camper down to the ground and try to make sure that he did not swallow his tongue, which would be a bad thing.
The thought of engaging in a midnight wrestling match with someone twice my weight and three times my strength was not that appealing to me. However, this is what I was envisioning as we were being briefed in the first week. Fortunately, I never had to deal directly with a major seizure, and I actually enjoyed working with these older campers very much. At one point in the summer, I was responsible for teaching sex education to these guys, which was extremely amusing. They seemed particularly fixated on the significance of the navel, on which we spent a disproportionate amount of time, considering its limited importance.
However, during this first week, before I met them, it was starting to become apparent that this was some very serious business, particularly for a sixteen-year-old who was just learning to take care of himself.
This is not to suggest that every minute of the first week was all business. There was a fair amount of opportunity to meet the other counselors and staff members, who were truly a remarkable group of people. These were individuals who were deeply dedicated to their work, which paid more in personal fulfillment than financial enrichment. Among the most common topics of conversation was: “When is Bob going to get here?” I heard every Bob Peters story that the many returning counselors had to tell, and most of them came back year after year. It was clear to me that this was a very remarkable person and teacher. I was not disappointed when I finally met him later in the week. He taught me everything I needed to know, and we remain friends to this day.
Among the staff members were a group of waitresses, who were around my age, one of whom was more attractive than the next. During the off hours, we got to see a lot of each other and got to know each other fairly well in a brief period of time. In some ways, we really saw a lot of each other, in that the camp had one communal shower for staff, and when you were showering, it was not at all unusual for a young lady to be in the next stall. While everyone seemed very comfortable with this arrangement, I was a little concerned about getting somewhat overstimulated, if you get my meaning. Sensing my anxiety over this, the head waitress comforted me by saying, “Don’t worry, my girls have seen them up, down, and moving.”
I do not mean to suggest that this was like Sodom and Gomorrah, with orgies occurring in the hallways, which was certainly not the case, but there was a fair amount of coupling up throughout the summer. This sexually charged atmosphere was particularly challenging to a person who was approaching his physiological sexual peak (which I subsequently learned occurs at about nineteen years of age for males) and who was trying to focus on learning his responsibilities. Fortunately and unfortunately, I was not exempt from all of this hyperhormonal activity, and I developed some experience that summer. In an attempt to alleviate my guilt over Lisa, I tried to convince myself that I was getting this experience for her, which demonstrates definitively that all men are, in fact, pigs.
This leads me to one episode of which I am not particularly proud. Apparently, as a result of one of these liaisons with a young lady, I managed to neglect some of my responsibilities at one point early in the summer. I really cannot recall the specifics, but I remember the consequences very well. The camp administration learned about this, and I was taken by Lee to the proverbial woodshed.
I had never been reprimanded for anything before at any time in my life, in part because I had never done anything wrong (with the possible exception of going to a Grateful Dead concert that ended in the middle of the night without having told my parents when it would be over, which they did not appreciate very much). As long as I can remember, everyone had always told me how mature I was for my age. They told me this at every age, which really started to get old after a while. For the first time, I was being told that I was immature, which was somewhat refreshing for a change, though Lee really let me have it verbally. I was not about to be irresponsible again, and there were no further problems that summer.
In my defense, I think everybody has a time in which they go a little wild, typically during the first year of college, and I was being somewhat precocious in my responsibility. Of course, this is much less a justification than an excuse, and it is a fairly lame excuse. There is actually no good excuse for what I did, because these kids really depended on every one of us, and a single mistake could have been fatal.
MY UTOPIAN PREPARATION
When the campers finally got there, I went through a transformation. I think that at that moment I became an adult. Partly as a result of Lee’s reprimand, and largely as a result of the enormous responsibility that I felt the moment I saw them, I was changed. I was also the happiest I had ever been. My happiness was in part the result of my transformation to early adulthood and the recognition that I was finally on my own.
But my happiness was even more a result of being a part of something much greater than myself. It was a result of being a part of the closest thing I would ever get to a utopian society. Everyone was there for the kids. These kids had more problems on a daily basis than I had experienced in my entire life. Yet they were happy. They were more than happy; they were filled with joy. They were sometimes frustrated with their limitations, but they learned to deal with it, and they taught me patience in doing so.
Most important, there was never any pettiness on the part of anyone. I am not sure whether this was because these people were just not inclined toward pettiness (which I am sure was a lot of it), or because there was just not enough time or energy for people to be petty, or because people were just too happy to engage in such nonsense, but it was wonderful.
I did not know it at the time, but the summer would be the best possible preparation for the challenges I would face for the rest of my life. I had never really known a person with a disability before. The closest I had ever gotten to knowing such a person was my own father, but he just had a severe limp from his childhood polio, which resulted in a lot of pain but did not really limit his functioning. Now I knew an entire camp of people with disabilities. I would never trade the disability that I would acquire with that of any of the kids in this camp. Yet they dealt with it with dignity, courage, and joy. They will never know how much the few weeks I spent with them helped me for the next thirty years. That long period of time began toward the end of that summer, in one split second.
DISASTER
One day toward the end of the camp season, on August 12, 1973, two of the waitresses and I decided to take our day off together and to go to the resort town of Monticello, New York. We had only one day off a week, and by that day we really needed to get away. Unfortunately, none of us had a car or even drove, so we decided to hitchhike. Now, I can just see the disapproving looks on some of your faces: How could we be so stupid as to hitchhike? Although I certainly do not contest that this was a stupid thing to do, in those days a lot of people hitchhiked. Unlike the situation now, in which hitchhikers occasionally have their heads stored in a bottle in some psychopath’s refrigerator, this was before such horror stories.
Monticello was about a half hour or so away from Lackawaxen, Pennsylvania, where the camp was located. Somehow, we were able to get there, and we had a nice day. As the day progressed, however, clouds started rolling in, and it began to rain. We had to work the next day, so we started hitching to get a ride home. Thanks to the physical attractiveness of my traveling companions, we were able to do so in short order. A sports car stopped and took us in. The driver was a young man, and his dog was in the front passenger seat. The girls and I got in the backseat, and, being the gentleman that I was, I sat in the middle.
That is the last thing I remember on that day. Everything else was related to me by others after the fact. Apparently, the driver had been drinking or taking drugs, which we did not know when we got in his car, and he tumbled the car in the rainstorm. There were no seat belts in the backseat; consequently, the two girls smashed into the bucket seats in front of them, breaking a nose and arm, respectively. Being in the middle, I had no bucket seat in front of me, and I proceeded to fly through the windshield, ending up outside of the car. The driver had acquired a small scratch under his eye and lost his dog. I had broken my neck.•
Wisdom from a Chair: Thirty Years of Quadriplegia is available on Amazon.com, BarnesandNoble.com, BookLocker.com, Apple (for iPads, iPods and iPhones) and Kobo (Canada’s popular ebook retailer).
*Copyright © 2016 by Andrew I. Batavia and Mitchell Batavia,
“Wisdom from a Chair: Thirty Years of Quadriplegia”
ABOUT THE AUTHOR:
Andrew I. Batavia (1957-2003), MS, JD, an internationally known disability activist, professor at Florida International University, and a person with high-level quadriplegia (paralyzed from the shoulders down), received his law education at Harvard University and health services research training at Stanford University. While a White House Fellow and special assistant to US Attorney General Dick Thornburgh, he wrote regulations for the Americans with Disabilities Act of 1990.
Mitchell Batavia, PT, MA, PhD, is an associate professor and chair of the Department of Physical Therapy at the Steinhardt School of Culture, Education, and Human Development at New York University. He was Andrew’s brother and lives in the Bronx with his wife, Evgenia, and son, Michael Andrew.
