When I was a kid, our house had a ramp. None of my friends' houses had ramps. We had extra-wide doorways and hallways. (In fact, when I looked at this house to buy it -- it has a very similar layout to my childhood home -- this thought came to me unbidden: The hallway is not wide enough for a wheelchair to pass through.)
Our car had hand controls for the brake and gas pedal. We drove all the way down to some weird place called City Island to have them put in -- it was a custom job. When my step-father, the man in the wheelchair, first got out of the VA Hospital in the Bronx, a chamber of horrors my teen aged mother had dragged me through at the tender age of 2, a visit I do definitely remember for I am probably still at too tender an age for such sights and sounds and scents of suffering, he stayed close to friends he had made there, and so had connections to this shop in City Island where hand controls for the cars of the disabled were made. Because this was the early 1960s, and handicapped awareness was not a concept. Sensitivity to the needs of the disabled was not an ethic. Not. No special parking spaces or ramps or bathrooms or doors -- nothing. Nada. Not a thing. No.
He was very adept at bumping up and down curbs. He had a way of tilting the chair back on 2 wheels to get down them. He could even bounce down 2 or 3 steps if he had to. He got up curbs with someone giving him a push from the back. If the curb was low enough, he could simply tilt the chair back up onto the curb and then bull his way up with the strength of his former farm boy arms pushing the wheels over it. If there was no one to help him, he would sit and wait for someone who looked able to help to come by. Then he would call out, "Hey chief, hey chief -- can you give me a hand here." Not a question, really, but a statement. To say it was a massively humbling experience is to understate an obvious truth. He was disabled but he was fatally proud. You could see it in his face. I often thought that in another lifetime, he might have been a king. He was larger than life, even in his injury. And people liked him, and they liked the fact they had a friend, like him. It made them look good that they were friends with the guy in the chair. They made a special space for him at our high school basketball games, and mostly all my friends really liked him a lot.
I remember a family vacation we took with my Aunt and her family. There was a restaurant they wanted to eat in one night. But it had steps, lots and lots of steps. Arrangements were made for my Uncle and some men from the restaurant to carry him up the back steps and bring him in through the kitchen. He was not a small man either. If he could have stood, he would have been well over 6 feet. He had a massive chest and big forearms, both from all the years of pushing the chair and also from all the years of milking cows when he was a boy. Only the lower half of his body was small -- the long legs with no muscle anymore and his feet in useless shoes (the final pair he ever wore were brown suede with laces that came up over his ankles and he called them his "fruit boots"). The color of his legs and feet was bad; their circulation was compromised. Eventually he got pressure sores on his butt, despite his sheepskin seat and special pillows, that left him bedridden most of the day, tilted to the side with his ass in the air. That was in the last years, though, before he died of a cerebral hemorrhage at 40, the same way both his parents died.
More than anything, he reminded me of cut flowers in a vase, the tops all vibrant and colorful and fresh, the bottoms, in the water, gradually becoming flimsy and soft and rotted.
He did not always carry the burden of his life gracefully or well, but how many people would? Or do? He drank too much, he always drank too much, it was a drunken driving accident that broke his back and left him paralyzed from the waist down. And, after such a grievous back injury, he was carried away from the scene of the accident rolled up in a blanket. Who knew about back boards for spinal injuries in a poor rural county in the late 1950s?
His friend in the car with him walked away from the scene. He eventually died from the effects of alcoholism.
A lot of his friends drank too much, especially the other guys in chairs. A lot of my childhood was spent in their company, them and their wives were all at someone's house -- often ours, and I was the only kid, these guys were functionally impotent -- for the weekend, drinking and smoking and snacking and playing cards for pennies. I would sit at the table with them most of the day and listen to their dirty talk and wise ass humor. Much of their humor was dark and often directed at themselves, and I learned a lot of dark truths and dark survival skills from it.
They called themselves 'gimps'. They were a fraternity of people most of the rest of the world preferred not to see or stared at all too rudely. I got used to it as a small child, people staring at him like he was some freak sitting there in his chair, instead of a big farm boy who had gotten into a bad accident. They tended to see the chair and not the person. I knew the people, and after time, I never saw the chair. I didn't see any of the chairs anymore, just as I did not see how the one friend who had been paralyzed from his shoulder blades down in a diving accident could not cut his own food, or the amputated stumps of the friends of later years, men who had come back from Vietnam missing limbs. I remember one guy, who had lost both his legs, never used his chair in private. When he left the card game to go to the john, he'd hop down onto the floor and locomote along somehow on his hands. All I ever remember thinking was how strong he was.
The paralyzed guys were permanently catheterized. They had a bag on their legs that the urine trickled into all day. They called it a duck. On road trips, we would pull over to the side of the road, because there were no public bathrooms his chair would fit inside, and he would slide over across the bench seat to the passenger side and grab his leg, stick it out the door, pull up his pant's leg, and unclamp the tube of the duck to let the dark, bad smelling urine gush out onto the roadside.
These guys also played wheelchair basketball. They participated in handicapped games. We went to those every summer. There were wheelchair races and also swim races. My step-father was actually on a wheelchair basketball team that competed in the Pan-American Games. He went to Cuba with the American team back in the late 50s, while it was still legal to travel there.
And yeah, he used the strength of his big scary arms to beat me and the dog too, sometimes brutally. He stuck his big, blunt, rough fingers into places on my body where they did not belong. He humiliated and shamed me. He also helped me with my math homework.
When I was very small, I would stand on the foot pedals of his chair when we were out shopping, and I would ride along there. He taught me how to whistle really, really loudly, without using any fingers to help. He taught me to tie my shoes as we sat in the car waiting for my mother at some store. Except he was a lefty, and taught me left handed, and it took me years to figure out why my bows never looked as nice as the other kids did.
When I played field hockey in high school, he came to my games. He couldn't get across the grass to the field, so he parked as close as he could and watched with binoculars.
Besides the scars of abuse, living with him gave me a compassion that runs deep. It gave me eyes that tend to see the inner person first and a mind that does not judge people by their appearances (though I have learned with age that, in some cases, judging by appearances can be precisely the right thing to do). It gave me the ability to have extended conversations with almost anyone. I look in their eyes and talk with the spirit residing in there. I am proud I am able to do this. I think it is a good thing. And the fact of that gift, that ability, almost brings me to a place where I can forgive him the hurt he did me.