When we got to the van that was parked beside us, I asked Joe for a pen to write down the name that had been branded on the door. Inside was a woman who I asked if she was waiting for a couple of people in the theatre. She was. I felt sure I had found the right organization and was already planning the letter.
I got into the car and waited while Joe loaded the suitcase. Walking towards the van were two men with disabilities with a support worker who was patiently waiting for them. I looked again. The van wasn't a wheelchair van. I asked the woman in the van if she was waiting for people who were wheelchair users, she was not. Then I looked at her again.
I had seen her.
She had been with a fellow in the same movie.
About midway through the movie, when it was getting really good, she had left with the man she supported. I thought that maybe he was going to the washroom, but he hadn't come back. She and he had waited in the van for the others. He hadn't wanted to stay so she simply followed his wishes and left.
She knew that he was going to the movies, she was not. She was supporting him at the movies, not going to the movies with him. She was there to meet his needs, not hers.
Further, he had not sat with the other two who had attended from the same organization. The two of them sat in a different place. There was no effort put into having the staff sit together surrounded by people with disabilities. They each, the two staff, sat in different places with different people. Clearly the people they supported made their own choices regarding seating.
The best of support.
The worst of support.
And how easy it is to see the difference.
Thursday, May 28, 2015
The movie started. Once the woman next to me was finished with being helped to eat. The support worker with her jumped up and went over and sat with the staff at the other end of the row. Left alone, the woman soon began very low sounds. These sounds over a 5 or 10 minute period became louder and louder. Eventually they were loud enough for her staff to come back to her and sit with her for a few minutes. She quietened down immediately. After three or four minutes of quiet, the staff ran back to her seat beside her co-worker and then, shortly, the low sounds began again. This went on through the entire movie.
I was not bothered by the sounds the woman was making. I was, however, bothered to distraction by the behaviour of her staff. The pattern was so clear. Sitting alone ... low noises becoming louder. Sitting with someone ... no noise at all. Alone -noise. Not alone - quiet. I don't know this woman, I don't know what her disability is or what kind of support needs she has. But I do know that her sounds meant, 'Please sit with me, I don't like being alone here.' It was as clear as any communication I have ever seen from even speaking people.
I had already had a confrontation with the coworker for pulling her phone out, letting it's bright light shine throughout the theatre. I asked her to put her phone away. In fact I asked several times for her to put her phone away. Finally she turned the phone to me, showing me only bright light, and said, "It's not a phone! Now watch the movie.!!" She still saw me as a person with a disability whom she had a natural right to order around. I said, again, "Turn off your phone!" She did. I was aware that this interchange had interrupted the movie for others. I didn't, now, want to start a fight with the other staff for using abandonment as a staffing approach.
On the way out I saw the staff who ran back and forth between the seat beside the woman who wanted company and her co worker. I spoke to her. I asked which agency she worked for. When I told her, in answer to her question, that I wanted to report terrible support for people with disabilities. She started to speak about her co-worker, who was in the bathroom with the person she was with, and that she was just trying to help me find a seat.
She looked shocked when I told her that the person I wanted to report was her. I told her that she abandoned a woman who clearly wanted her to sit with her. I told her that she was not paid to go to the movie with the co-worker but to be with and provide support for the woman she supported. "Didn't you hear her call out for you, over and over again?" She became flustered and started to answer using nonsense words.
I realized that we were blocking the pathway and people couldn't get in or out of the theatre. I left. Joe rushed forward saying, "Maybe we'll see a wheelchair van in the parking lot with the name of the organization one it."
There it was.
Parked next to us.
Wednesday, May 27, 2015
|Photo Description: a big red star, outline in gold with the words The MOVIES written across.|
They had two spaces where people with disabilities could sit next to someone and two spaces where there were spaces for people in wheelchairs but no seats for anyone without their own chair. There were already two people with disabilities there, both with significant disabilities, who were with staff. The sat on either end of a row with their staff sitting beside them. OK those spots were taken.
Joe and I began to look at where we'd take up residence. One of the staff calls to us and tells us that we can sit 'there.' We looked to see where 'there' was and saw that it was at the far right of the theatre. I could back my chair up against a seat and Joe would sit in the remaining chair. I could immediately see several problems with this arrangement:
It was at the far right of the auditorium which doesn't give a great view of the screen.
It wasn't designed for wheelchair seating so I'd be sticking way out and thought I wouldn't be in the way, I don't like sticking way out.
It still wouldn't be possible to sit beside Joe as he'd be behind me in that seat.
I told the staff that I didn't want to stick out and feel that I was in the way. She spoke up and began to tell me, in more assertive tones, that I wouldn't be in the way and that I should sit there. I said, again, that I didn't want to sit there. She started up again, trying to coerce / convince me that that's where I should sit.
I wanted this to end. I am capable of picking a seat. I said, "Thanks but I don't need your help."
She sat back in her seat as if slapped.
She was annoyed.
A disabled person hadn't done what she had instructed them to do.
This upset the natural order of her day.
Joe and I chose where to sit. He sat in the row behind and over my left shoulder and I sat in the row in middle front nearly but not quite directly in front of him in one of the other spaces for wheelchair users to sit. It was a good solution, the best in the circumstances.
Joe, once we were in place, leaned forward and said one word, "Staff."
"Yep, she's staff," I said, "the power kind."
Tuesday, May 26, 2015
|Lydia Brown holding a sign protesting the use of contingent electric shock.|
I've written, in the past, about the use of contingent electric shock. I written about the smell of burned flesh. I cannot imagine that this kind of treatment is seen as treatment and not as what it is, a blatant exercise of power permitted only because of the perceived subhuman nature of those who's lives, movements and choices are dictated by pain. I remember when the instruments of torture were called what they were 'cattle prods.'
Under the name of treatment people are hurt, humiliated and had their humanity erased.
Isn't it time to listen to the voices of self advocates and stop?
Monday, May 25, 2015
|Photo description: A sunflower in a meadow looks to wards the sun.|
I feel him coming, I don't know where this sense comes from, I didn't have it when I was non-disabled, but it's true, I can actually feel him coming. I look up from my book and over to him. He's heading straight for me. I don't want intrusion or interruption so I telegraph that to him by going back to reading my book. Though I am reading, I know he is still coming. I am sitting, in the sun, in a locked wheelchair, reading a book, beside someone who is also sitting and engaged in reading an email.
"Do you need help?" he asks.
I look at him. "No, I don't, thanks," I say. I want him to just go away. I don't want to educate or enlighten him. I don't want to engage with him at all. I want ... I want ...
I want to sit in the sun, in my wheelchair, and read my book.
To his credit, when I politely refused his help, he smiled, nodded and went on his way.
I told myself, because I now had to stop reading and deal with the interaction, that he meant well and that I didn't want to punish him for a gesture meant in kindness.
I went back to reading.
But I couldn't.
I realized that if I looked helpless and in desperate need for help, from a stranger, when I was sitting, in the sun, in a locked wheelchair, reading a book beside someone who was obviously with me and capable of helping if help was needed, I would never, ever, ever, ever, be safe from the intrusion and the interruption, caused by strangers thrusting offers of help into my day. That I would never be anything but an object to these people.
An object that has only one purpose, to take help.
I was not a person, sitting in the sun, in a locked wheelchair, reading a book. I was an object awaiting the kindness of a stranger in order to continue my day. I was an object that simply waited, Waited for help. That's was I was. No, that's wrong, there is no 'I' here. 'I' don't exist. It does.
The thing that waits in the sun for help.
The thing that doesn't read, that doesn't enjoy quietly sitting in the sun, that isn't attached to the person sitting next to it.
"What did he think you needed help to do?" Joe asked, looking up from his email.
"Exist," I said.
Sunday, May 24, 2015
|Photo Description: A word blog with the middle words "Be a fan of RESPECT" are surrounded by the words INCLUSION, ACCEPTANCE, UNITY and FRIENDSHIP.|
We are in Campbell River visiting family. We both have family here so, including the family we have down island, it's going to be a busy few days. Yesterday I didn't even get into the hotel room until quite late because the visiting started pretty much on arrival. It was fun though, we laughed a lot, chatted a lot and just generally reconnected. We'd been up for a long time but forgot our tiredness in the midst of conversations.
This morning I got up to an email from niece Shannon about meeting up for a cup of tea this afternoon. In the note she told us that she's checked and the place that we were planning on meeting was closed on Sunday but there was another option. She then set about giving us directions to the alternate place.
After the directions were done, she said that we could meet her there or she could come to the hotel and we could "st/roll" over together. I know that, or I'm making a good guess that, as she wrote the word "st/roll" she was smiling. And she should smile. It's cute. I'd not seen this particular play on words and I thought it clever.
That was my first reaction.
My second reaction was quite different. I was really touched. I thought it was more than clever, it was 'inclusion in words' ... it was a nice way of acknowledging that I move differently in the world It was a way of communicating that difference doesn't automatically dismiss togetherness.
In the end I've opted for the st/roll, not because we need help finding the place, but because it's now something I want to do.
Let's go for a st/roll together.
Saturday, May 23, 2015
|Photo description: On a blue backgroun with a white strip, the word 'blog' is written with a curser arrow pointing to it.|
I'm not writing a blog today.
We are up, very early, and rushing around to get everything ready for WheelTrans to pick us up and take us to the airport. We fly to B.C. on the first flight out this morning. I took a few moments to sit and write a blog. I knew what I was going to write about but I just couldn't focus, what with Joe running around getting last minute things packed and with me remembering, this and then that.
I need to be able to focus to write. Mostly I write my blog is absolute quiet, actually, I write most of the things I write in silence. Both kinds. The silence around me and then the silence within me.
But it's hard to have silence when you've got a plane, a car and a ferry ride ahead of you all in one day. It's hard to have silence when you are going to see people you haven't seen for a long time. It's hard to have silence when you have Joe saying, "Will you get off that computer and help me, please!?!"
So, I'm sorry.
No blog today.
I'll, no doubt, have 'oh my Gosh' stories from the travel day to day. But I pray for a day, where not a single blog happens to me. I think you get what I mean.