Material 1: Looking back on the experience of living in an institution
(excerpt from a newsletter of an organization of persons with disabilities)
Leadership Development Course 2009
I attended a special school for children with disabilities for four elementary school years. Then, I moved to an institution for children with orthopedic disabilities. It was more than 30 years ago, but there is something I cannot forget even now.
It was a “doctor's rounds day” that happened every Wednesday afternoon. I was always scared on this day. A group of head nurses and therapists led by director of the institution marched into our room. They walked around, measuring our knees and lower back with a protractor-like tool. When declared, ”Let's operate on the back of your knee,” you were expected to go to the operation room the next week. I felt scared and uneasy, wondering if it would be my turn this week.
Because of cerebral palsy, parts of my lower extremities connected by joints such as the lower back, knees, and the heels had not been fully straightened. The reason why I wrote “had not been” is that they came to be straightened after an operation. However, this time I was not able to bend the straightened parts of my body. Especially, the worst for me was that I was not able to bend my knees as a result of an operation on the back of my knees (both legs). In daily life it is far more inconvenient to have knees that cannot bend than to have ones that cannot stretch fully. Those who experienced wearing a plaster cast because of a fracture or something can relate to this, I think.
My mother, who observed that my disability became severer every time I came home from the institution for a visit, got scared and decided to send me to an ordinary school from junior high school.
When I was in the institution, every Thursday was operation day. (Although I was a child, I knew the jargon “op day.”) As there were two operating tables, two children were meant to be operated on each week. In fact each of us had operations 4 to 5 times on average. And, no matter how many times we underwent operations, we did not receive any explanation about how effective the operation would be and what possible bad effect should be considered. (You may think the explanation was not given to me because I was a kid, but my parents did not seem to have received a sufficient explanation, either.) And, even when the “expected good effect” did not appear but rather the operation made the disability even worse, I do not remember any case when the doctor's responsibility was questioned. Now, since we have no way of knowing how the doctor is thinking now - whether he reflects upon what he did or he avoids any thought of responsibility - we still feel that we are left hanging and unsettled about this issue.
As illustrated by the above-mentioned medical cases, a doctor had tremendous power in that particular institution. He not only had the authority to decide about surgical operations, but also to determine the details of our lives in the institution - for example, even about our posture whenever we slept.
About three months after I entered the institution, an exercise called “Positioning” suddenly started. In my case I was made to lie prone on a board (like a conference room table top) which was placed on the bed. Then, my lower back was bound by a cloth that looked like bleached cotton. I was forced to stay in that fixed position and I had to sleep for about 12 hours from 6:30 p.m. until 6:00 a.m. of the next day.
To forcibly straighten my body which was not naturally straight, I was bound by considerable force. I used to get up in the morning to find my lower body in dark color, past the stage of being reddish, because of poor blood circulation.
The most painful part of this exercise as a child was toileting.
Because the lower back was tied, naturally, the urinary bladder was pressed. When I was no longer able to endure nature's call, I had to call a nurse by a nurse-call apparatus. Bringing a urinal, the nurse ordered me, “Do it quickly.” But, due to my disability of cerebral palsy, the harder I tried to urinate quickly, the more difficult it became. Then, I was bound again. And again, the pressure made me feel like urinating. Thus, I had to call a nurse again. After repeating this process, the nurse who could not understand what was happening finally scolded me bitterly, saying, “You are telling a lie because you don't want to undergo this exercise. ” “It's not a lie,” I muttered in my mind, but the words did not come out of my mouth. This medical experience in the institution has become a memory I could never forget all my life, a memory which I would even call a “grudge.” It would not be an exaggeration to say that the aforementioned experiences made me leap into the movements of persons with disabilities.
