I’ve put a lot of distance on my arms and back, no question.
So the mall closest to us takes the bus about 3 minutes to get to. I always apologize and explain about my power chair break down and the drivers always say that their service exists for just that reason. I still feel guilty about it, but guilt shmilt I used the service anyway. So I learned on my first trip there that I could manage all the ramps that had hand rails on either side of the ramp. I had the strength to pull myself up with no difficulty at all. That was good.
The other ramps, without hand rails, even though it was hard work, I could manage it. It felt good and I felt strong. But, I knew, that I had been successful because I’d been selective. There is one ramp, on the main floor, just after coming into the building, that I avoided. It’s steep. It’s longish. It has only one handrail on the left side. I avoided it. I’d go down the elevator, cross over underneath and come up the other elevator. Whatever, it worked.
So Sunday, we arrived early and there were few people around. I rolled to the bottom of that ramp and looked up. I told Joe that I knew I’d not make it all the way up, that I’d like him to walk behind and not help until I asked, and we’d see how far I could make it and then I could really work on my strength so that I could make it all the way.
Immediately I knew that this was the hardest ramp I’ve ever tried to do alone. After two or three pushes I devised a manner of pulling with my left hand on the rail, and pushing with my hand on my right wheel. It was hard. I knew I was being really loud because people turned to stare. I grunted like a man with constipation after a cheese tasting party. It was work and I couldn’t stop making the sound. I was sweating, but I kept at it. Suddenly I knew and I said to Joe, “I’m actually going to make it!!” Cresting the top I felt victorious. Really victorious.
Ha ha, this post isn’t about me pushing myself up the ramp. Fooled you!
It’s about Joe not helping me.
People stared at me grunting my way up that ramp, using every bit of my strength to manage it, but they also stared at Joe. Why the hell wasn’t he helping me? There was anger and disgust on their faces as they watched him. They thought that he wasn’t doing anything. But, they didn’t know that their stares and their unspoken negative opinion of him was really hard on him. Joe, like everyone else, likes to be liked. I knew he was fighting his own battle, I knew he was struggling not to help me as I was struggling. I knew that this was not something he was comfortable with doing. But he did it. In doing nothing, he’d worked harder than I think he’s worked in a long time of helping me. In doing nothing he did something of tremendous importance.
In the International Journal For Direct Support Professionals, in December, an article was published on ‘holding space.’ It’s in many ways one of the most important articles I’ve read in a while. It talked about the importance of creating space for people to grow, for people to feel safe in, for people to simply be. That’s exactly what Joe did, he made this a safe experiment for me, he was there to support if and when I asked for it. I didn’t worry about rolling back or about losing control, that allowed me to focus entirely on pulling with one arm and pushing with the other. It allowed me to succeed.
I wonder if people with disabilities begin to lose skills and abilities or aren’t taught skills and abilities simply because of the ‘need to help’ and the need to be seen as ‘helpful’. I wonder how much people are limited by what people believe their roles are? The article talks about doing something by doing nothing.
I did something.
Joe did nothing.
And both were hard work.