Sometimes I wonder about why I write this blog.
Sometimes I wonder about the repetitiveness about the experience of living with a disability. Of dealing with, not the disability, but the issues it brings with it. Little did I know when I sat down in a wheelchair that my world had changed so dramatically. I imagined that I'd have difficulty adapting to rolling, to curbs and to barriers. That, surprisingly, was dealt with within days of being disabled. I became used to adapting, planning, looking for alternatives. I became used to back doors, back alley entrances and hidden passageways. I became used to marking both places where I was physically welcomed and places which simply were no longer part of my world. I became adept at living that life, learning how move anew in this world. These frustrations are part and parcel of what it is to move differently. I want change. I see change happening. I knew that I'd need new skills, both of mobility and of flexibility. I've written often of this. I fear boring you.
What seems to be so incredibly repetitive, and remarkably frustrating, is the million ways that people and systems create barriers. That planning, even meticulous planning, is meaningless when people don't listen, or rather when they pretend to listen and then just don't do what they promise to do. Hotel rooms booked as accessible turn out to be completely impossible to navigate. Restaurants who claim accessibility but the toilet is down a flight of stairs. Stores with an accessible till that is rarely open. Even phone calls and chats with real live people don't guarantee anything. I have learned to mistrust. Completely mistrust the word of non-disabled people who talk to me of accessibility.
The incident behind this is what happened this weekend at Roy Thomson Hall. We went to see the Messiah and I carefully called, as instructed to do on their website, and booked an accessible seat. Everything should have been OK. We pulled up in front of the building and a Hall staffer was there as I got off the bus. She said she was there to ensure that we got to our seats OK. When she realized we had to pick up our tickets, she directed us to the Box Office and said she would meet us inside. We got our tickets, impressed at the seeming willingness to be of assistence.
That ended soon.
I handed her my ticket and she said that we weren't on the 'wheelchair list' - God how I hate being referred to as a 'Wheelchair'. I told her that I had booked accessible seating and she said, 'Oh, really?' I was immediately miffed. I didn't become disabled yesterday. I've been booking accessibility for years, I know how to do this. Well, we weren't on the list so the seat hadn't been removed. She knew I was upset and she pointed us to the elevator and told us the seat would be removed by the time we got there.
The woman overseeing that area went off in search of someone to take the seat out so I could get in. She hadn't been told of me either. The fellow came and I actually apologized to him for bothering him. He wasn't rude but he wasn't nice about it either. Clearly he was disturbed at having to do this for us. OK, I don't know how to make this better.
It got worse.
I asked where the accessible washroom was on my level. There wasn't one. To get to the washroom, I'd have to go all the way back to the elevator and go down to the main floor. It had been made very clear that people who were late would not be allowed in. I asked if it were possible to make it to the elevator and washroom and get back during the fifteen minute intermission. The woman thought for a second and said, 'Probably not.' I then asked if I was delayed because the bathroom was so far away (versus the washrooms for the non disabled which were just outside the door entering into our section), would I be allowed in. She said without hesitation, 'No.'
So I went to the washroom just before it was time to take our seats. Then through the whole first session I worried about having to go pee at intermission. I worried that I'd make it so Joe would miss the second half. I worried myself into having to pee. As soon as the first half ended, I turned to the door, I usually wait for people to leave so I can get out without an audience, but I was at the door and Joe opened it for me. We raced to the washroom, waited for one to come free, then raced back upstairs. We made it with a few minutes to spare. I realized then, I just wasn't having fun.
It took a strength of will to focus on the music and the surroundings and simply forget about the first half and the worries that came with it. Forget having booked seats carefully and then arrived to find the promised seats not made ready. Forget the fact that people treated me like I ... was a liar ... was upsetting their routine ... was more bother than I was worth. Forget the fact that I was being held responsible for their poor planning, why would you put wheelchair seats and accessible washrooms so far apart? Forget that I'd worried all through the first act. Forget that I'd become unpleasant and difficult with the staff. Forget all that. It took an effort of will and sheer bloody-mindedness to focus simply on the music and the message within the music. But I did. Joe did.
This. This is what I'm having trouble getting used to ... having to rely on others to do what they say they will do. To expect simple, decent treatment as a customer and get something much different instead. To deal with people who have the power to make decisions over things as basic as my bladder, who seem to love wielding that power. To lose my anonymity when I arrive and have to have a fuss made about what should have simply been there.
That's the difficulty.
Those are the barriers that upset me.
And I get tired telling the same story over and over again.
But I have to.
And I thank you, deeply, for listening.