There was no apparent logic behind how trips were scheduled for Call-a-Bus, and if you weren’t waiting at the door when the bus came then you’d miss your ride. Assuming you actually got on the bus, the drivers were hostile and lazy. Most of them wouldn’t get out of the driver’s seat to assist an old lady with bad arthritis, a walker, and several bags of groceries. The sons of bitches would sit on their butts and watch the lady struggle and moan. Also, the drivers didn’t do proper tie-downs of wheelchairs. In one instance, a driver drove with one hand on the wheel and the other holding a manual wheelchair in the center aisle.
Call-a-Bus (CAB) was leaving me in tears as often as did Medicaid transportation. After I stopped taking antidepressants, I cried a lot. Several people, including some from ARISE independent living center, had told me that I should attend a Call-a-Bus meeting that was going to be held. They said CAB Manager Linda McKeown would be there and would answer questions, so I went.
Linda McKeown was sitting alone on a raised platform above all these people with wheelchairs and walkers. I should have understood then, just from seeing how she’d set herself up, how this was going to play out but—I’ve got that naïve thing going on—I didn’t get it. I raised my hand and repeatedly asked my questions and Linda refused to answer them. She said this wasn’t the right time or place for personal questions.
Oh, really? Then when and where were the right time and place? I’d been told by agency people that this was it. I was, again, reduced to tears and I wheeled out into the hallway to hide them. Several other people in wheelchairs followed me and gathered in a circle around me to offer comfort.
I don’t know how we got from bus transportation to wheelchair use, but we did. The fact is that I’d come to feel like I was a terrible person. My sisters wouldn’t visit me. The only people who came to see me were paid to do so—aides, case managers, social workers, pastors. The friends I used to have had dropped me and I hadn’t made any new friends. I was a loser, and wept before these comforting people in wheelchairs, and you know what they told me?
They said it wasn’t me; it was the wheelchair.
People—“people” being you, the able-bodied reader—don’t want to get involved with people in wheelchairs. We’re too much trouble, or too embarrassing. In time, I would come to understand this. One day I was wheeling down the street and needed to know the shortest way to Home Depot. Ahead of me there was a guy in his driveway working on his car. The nearer I got to him, the more he went out of his way to avoid looking at me, as if not seeing me would somehow make me not be there. He knew I was coming at him in a wheelchair.
When I turned into his driveway he got very, very busy so he couldn’t see me. What did I want? A woman in a wheelchair! For God’s sake, what if I wanted him to touch me for some reason? What if I needed him to help me? What if I wanted to use his bathroom? Ew-w-w!
I called out a cheerful good morning and asked for directions to Home Depot. Oh God, it was a guy question! Relief rolled off him like sweat off a jogger.
But that day, outside Linda McKeown’s meeting room, I had not yet realized that a wheelchair changes every human relationship you experience, nor had I come to terms with how awful people treat you when you use a wheelchair. The people gathered around me each volunteered some example of how they’d been mistreated solely because they used a wheelchair. The story I’ve never been able to forget was told by a fellow with mild cerebral palsy.
Cerebral palsy is brain damage caused by the baby not getting enough oxygen while exiting the birth canal. It can range from mild to truly horrific. I knew a woman for two years without realizing that she had cerebral palsy—its only manifestation was trouble using her left arm. On the other hand, I was in hospital with a woman who was blind, couldn’t walk or talk and had to be spoon-fed. And cerebral palsy (CP) is not a degenerative disease in and of itself, unlike muscular dystrophy or multiple sclerosis, which are guaranteed to get progressively worse. However, as a person with CP grows up and gets older, the primary disease can cause other problems, for example, a small child may be able to walk whereas a full-grown person’s body may not be able to support itself.
One of the men in the circle around me told his story. He had been born with moderate cerebral palsy. He lived at home, grew up, walked—did regular stuff. Every year he took a vacation with his family, not just mom and pop but his whole extended family—married brothers and sisters and nephews and nieces—but there came a year when he didn’t hear anything about vacation plans. It happened to be the same year that he started using a manual wheelchair (he was 27). When he asked about the vacation then he was told that planning was well underway—and a babysitter had been hired to stay at home with him.
My sister-in-law had polio when she was six months old and it left her with one leg that was atrophied. She was a terrific lady and what I learned was that if I wanted to walk with her then I had to slow down. Nowadays, everybody thinks that where they’re going is more important than with whom they go.
My great aunt had a seriously paralyzing stroke when she was in her forties. Thereafter, whenever there was any family activity, her husband would pull the car up in front of the house. One of her son’s would lift her into the car and the other son would put her wheelchair in the trunk and off they’d go. Aunt Naomi was never left out of anything just because she no longer had an able body.