Disabled in Society

When I was very young, I used to get knots in my stomach whenever I saw someone on crutches. In grade school, there were a couple of my peers who periodically used crutches: I never knew why.

In seventh grade, someone would wheel in an eighth grader who was painfully thin: he took his study hall in our social studies class. He labored over picking up and opening one of his textbooks. I couldn’t imagine what kind of malady could leave someone around my age bound, as they used to say, to a wheelchair. A year or so later, when I was in high school, I heard that the young man had died. Only many years later did I realized what awful, wasting disease he had: muscular dystrophy (MD).

In my last year of college, my academic adviser arranged for me to spend some months overseas, working in a volunteer organization associated with the Red Cross. Was I interested? In place of imagining what kind of job I was qualified for was a void. What had I to lose? I accepted.

After a week or so of indoctrination, two other volunteers and I were assigned to a home for the disabled. Whatever knots I still got when I saw someone on crutches were about to disappear for good.

There were vast ranges of ages and ailments: from practically children in their early teens to elderly men and women; from people with polio to people paralyzed with spinal cord injuries. One of the spinal cord victims had been a mail carrier by profession: this home had been on his route.

Depending on what shift I was assigned to, our job was to get the residents up in the morning; help them to dress; help them eat and go to the bathroom, if necessary; help them undress; and put them to bed. There were two male wards and one female ward. I worked mainly on the male wards, although I was occasionally sent to help out the ladies. Under those circumstances, no one could afford to be self-conscious.

Everyone, including the staff, was thoroughly institutionalized: a mild panic ensued whenever routines were jeopardized. My foremost job was to maintain routine.

Some of the luckier residents left the home during the day. One Mr. K., paralyzed from the mid-back down because of a diving accident, went to work at a real job: in the insurance field, I believe. He required a minimum of aid to dress and guzzled down a pint of cabbage juice each morning (to help his bowels). Other residents worked in places designed for the disabled: counting beads for jewelry or ball bearings for industry.

I got to know Mr. K. fairly well through another American working there, and one day Mr. K. asked me to accompany him on a drive. He was the only resident I knew that had a car!

It was an eye-opening experience. I helped strap Mr. K.’s hands to the steering wheel: he had only minimal use of his hands and had learned to drive this specially fitted car.

He did drive fast! I forced myself to not hold tightly to the seat. We rode north, to the sea. We stopped at a roadside shop, where we lunched on smoked, dried mackerel and bread. I undid his hands and helped him into his wheelchair: the old-fashioned push kind.

We drove on to a park area at the sea (the Baltic Sea, to give you a hint as to just where I was). Mr. K. pointed out the place where he had his diving misadventure: fueled by a few beers, he had sprung off a cliff, only to slam his head into old, rotted remnants of a pier a few feet below the surface of the water. His drinking-and-diving days were over.

Mr. K. was definitely an anomaly among the home’s residents. Many in the same shape he was spent the day tooling through the hallways in their manual or electric wheelchairs and waiting for the next meal. On weekends, what remained of their families would come to take them out or to just sit with them for a few hours. Too many had discovered that their circumstances had robbed them of wives, husbands, and children not long after their accidents robbed them of their ability to walk, feed themselves, and go to the toilet by themselves.

J.P. was sixteen and riddled with MD. I’ll never forget walking into his room for something or other one Sunday afternoon and seeing his parents with their backs to him, watching TV, while he laid in bed behind them. They didn’t seem to want to be associated with him.

So he had good reason for his foul, resentful attitude. He spoke harshly to staff and residents. He despised the few that were his age. It took me a few weeks to overcome my immediate revulsion (the knot in the stomach again) and pity toward him: as long as I felt that way, he’d be even harsher and crueler with me. You can’t be tentative and at ease at the same time. He took the other American and me to task if we spoke English in front him. Once I learned to deliver what I took, I became OK.

He had records and a record player (you see, this was long ago!). I’d spend some time with him listening to the pop groups of the day: Steppenwolf, Thin Lizzy. It was a sight to behold as he sat in his electric wheelchair and bobbed his oversized head (compared with his wasted, shrinking body) in rhythm to “Born to be Wild.” He so wanted to be just a normal kid.

I think he’d been in that place since he was about thirteen, and a staff member told me later that J.P. had not been out of the building until he asked me one day to go for a walk with him around the building’s grounds. After twenty minutes or so, he was exhausted. Maybe that was the last time he was outside. Who knows?

When I was getting ready to leave for the States and home, he gave me that Thin Lizzy album: my consolation prize, maybe? I heard that he died about a year later. I still have that album.