Tuesday, June 02, 2015

Part 4

I realize that I left you hanging, wondering what happened, by skipping a day from the sequence of the story of our trip to the movies in Richmond. I did this because I wanted to think a little more about what I wanted to write. I also wanted to be a bit calmer so I could be more thoughtful. I give thanks to the fact that I finally realized that what I thought when angry isn’t necessary what I would think when calm.

Some of you may be waiting for an ultimate confrontation or resolution.

That didn’t happen.

What I wanted to write about was an overheard conversation from two people who had been in the same movie theatre, watching the same movie, where the same events occurred. Where a woman with a disability had to repeatedly use sounds, like a low and then rising moan, to call her staff to her side. I was not concerned about the moans, they didn’t bother me, I was bothered by the behaviour of the staff.

But the people whose conversation I overheard didn’t notice the staff, didn’t notice that the moans had meaning, they only noticed the noise.

One: “Those people shouldn’t be allowed in movie theatres, it costs a lot of money to go to a movie and to have it ruined by that G*d damned noise is f*cking ridiculous.”

Other: “I agree! They were better off when they were put away.”

The conversation sickened me.

Clearly these are people who don’t have a great degree of tolerance for people with disabilities. I’m betting if a child was in the movies they may complain that the child was noisy but they wouldn’t suggest locking children away. The fact that the idea of institutionalization is still a quick option for those frustrated by the behaviour of someone with a disability tells me that community living and inclusion are still fragile social ideas.

What makes this horrific to me is that those staff, and their behaviour, their lack of support for a woman who didn’t want to sit at the end of a row, alone, fuelled the latent bigotry and bias of members of the audience. These were two, were there more? Probably.

Our job isn’t to just support people with disabilities as they live their lives in the community, our job is also to support the concept, the radical idea, that people with disabilities belong in the community. How we do our jobs publicly will either enhance the concept of civil liberties and freedoms for people with disabilities or it will detract from the idea that people with disabilities are a people deserving of civil liberties.

It’s not fair.

But it’s the way it is.

A poorly supported woman was blamed for her poor support.

And the suggestion that she be locked away, forever, is terrifying.

Damage was done.

Serious damage.

All because someone made a decision that a woman with a disability wasn’t worth sitting with, sitting beside. All because someone valued her so little that her voice, yes she had a voice, wasn’t worth listening to.

A message to all staff and support people, you are supporting people with disabilities in the community and therefore you are supporting the concept of community living – never forget that your job is bigger than you thought, you are serving and individual and the cause of freedom at the same time.

Sunday, May 31, 2015

Lucky for it All

I’m feeling like one of the luckiest people alive.This is not an unusual feeling for me, I have it many times over when I’m with Joe and we are laughing. There was a moment, a couple days ago when we were in Vancouver, in the evening, in our hotel room, when Joe asked me how things were going to change once we’re married, I responded, “I’m gonna let myself go.” And then we laughed for nearly five minutes as we built on that one statement back and forth, with each other. I felt lucky to get to have this relationship and be laughing at full force 46 years in.But that’s not what I’m writing about today.

I am a wheelchair user, who flew to Vancouver, went over to the island and visited with family. On our way over and back we took the ferries and I got to roll around, unimpeded throughout the boat. I saw the beauty of islands and coastline and had time to chat with people on the boat in the way that strangers chat with strangers. On our way back we went down to the car deck early and I rolled myself to the back of the ferry and along with a few others sat in the sun, watching the present become the past as we headed forward. I had thought when the wheelchair rolled into my hospital room eight years ago that this was over for me. It isn’t. It has never been.

But that’s now what I’m writing about today.

I attended and spoke at the Inclusion B.C. conference. I did two sessions for them and then was part of a panel that served as a plenary session for everyone attending the conference. It was a panel that was about language, the power of language and asking how language should frame our movement and our future. It’s an interesting and timely talk. When it came my turn, I rolled to the front of the stage and looked out over a sea of faces, six, seven hundred faces, and I began to speak.

This is why I’m feeling lucky. To be given the opportunity to say my piece in front of a crowd of people. To be seen as someone with something to say. To have a chance to influence discussions and spark debate is an astonishing honour. I rolled off that stage feeling so full of the experience that I was near bursting.

Later, when it was over, all over, Joe and I went out to a small place we found near the hotel for a tea and a beer. We sat together and watched people pass by on the street. We were both quiet. Joe, of course, knew, without me having to say, what was going on in my head. “A long way from the hospital room aren’t we.” I told him that it was. But that it was even a longer way from the hallways of the schools where bullies called me names suggesting my worthlessness and teachers predicted a future with no future.

It’s a long way.

Many times in my life I wondered why the road I’ve been on has been so hard. I’m beginning to realize it’s because the destination required the journey.

On that stage, in that moment, I realized that something else. Yes the destination required the journey, but the destination was worth the journey.


I’m feeling lucky for it all.

Every last bit of it.

Friday, May 29, 2015

An Afternoon at the Movies: Wow

Part 3When 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.

(Continued tomorrow.)

Thursday, May 28, 2015

An Afternoon at the Movies: It continues

Part 2:

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.
(continues tomorrow)

Wednesday, May 27, 2015

An Afternoon at the Movies: The First of Many Parts

Photo Description: a big red star, outline in gold with the words The MOVIES written across.

Yesterday we had a day off, with nothing we had to do, So, of course, we went to a matinee.

We love catching the first movie of the day, There are fewer people there and it leaves a fair bit of the afternoon to do other things. We got to the theater, got our tickets and headed on in to the auditorium.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.”

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