Wednesday, November 14, 2018

Silence: What Happened Next

As is my habit, upon arriving at the airplane door, I spoke to the lead flight attendant. I pointed out that I was using my own chair, that it would go down to the belly of the plane and then be brought  back up for me. I told her that twice before people have attempted to steal my chair and asked her to keep an eye out when the chair comes up. She, as people do, dismissed what I said telling me that no one would do that, I assured her that they would and they have.

Our seats were in row 43 of a 42 row plane. I'm not kidding. We landed and waited for every single other person to get off. When I get to the front my chair is not there. I talk to the people who brought chairs up, I was told that my chair was taking by a woman with long hair and a man travelling with her.


I pointed at the woman who I had spoken to when boarding and told her that I held her responsible. I had informed her, she was at the front the whole time and she simply watched as my chair was taken away. The folks who work in accessible services at the airport bring me a kind of chair that I can't sit in. Finally one is found and I am taken up to the gate area. Several people surround me, I am extremely distraught. My chair is new, I love it, it was my first custom built chair.

People are sent running down to baggage to see if they can find the chair down there. The come back empty handed. I don't know what to do, I'm a long way from home. I don't know how to get to my hotel and what I'm going to do when there. I ask a manager type person if I could use the airport chair for a few days and bring it back. He calls and speaks to a director.

I await her decision.

Sitting at the conveyor belt watching luggage come up I am suddenly overcome and overwhelmed and I break down. I am sobbing in the airport chair. I know people are staring. Joe puts his hand on my shoulder and just lets me grieve for a few minutes until I can put myself back together.

I speak to a manager from the airline, a voice from Winnipeg trying to figure out if I need a new chair to replace the others how she could facilitate that, and then it comes to filling out the forms for both my chair and our luggage which hadn't arrived. Before the forms were filled out, our luggage was returned.

It's been a long time, there is no sign of my chair. Joe goes and gets a rental car, from a company that had lost our prepaid reservation, and arrives after they find a car that I can get into. I have been allowed to take the airport chair with a promise to bring it back when we fly home. It weighs about 35 pounds, versus my stolen chair which weighed 8 pounds.

We get to the hotel, we'd requested an early check in, and are told our room isn't ready. The check in time is 4:00 and we don't get the room until after 5:pm.

After arriving in the room.

We both sit quietly.

No TV.

No Internet.

Just silence.

Tuesday, November 13, 2018

A Hellish Day: Part One

We are safe. But not yet quite sound.

Yesterday morning the alarm didn't go off, my fault, and we were then in a panicked rush to get to the airport. Finally made it through bag drop off, security and then customs. Made it to the plane just in time for boarding. Discovered a mistake on the ticket regarding seating. The attendant who assisted me worked really hard to find us a seat that we could use. She did and we made it onto the plane.

This was a plane we'd not been on before and it was cramped. Really cramped. I sat down in my seat and got ready to leave. A fellow, a good looking guy, came and sat in the seat in front of me. Maybe 10 minutes into a 5 minute flight he flopped his seat way back. Now, I'm in pain and he knew it because I yelped when the seat crushed my knee. He simply wouldn't budge. It was a morning flight, no one else had their seat back except the guy in front of me.

Not only that he would throw his body back against the seat like he was telling me that I had to move my knee. I couldn't. He seemed to intentionally want to physically hurt me. No, I didn't speak to him about this. It's his right to put the seat back, and, frankly, I was really tired from just trying to get to the airport and onto the plane.

I had to get up a couple times to use the toilet and did so by slithering up the back of my chair pulling my body away from his chair. A remarkable feat of engineering I'd say. When I got back I had to speak to him. I asked if he'd put his seat up so I could get into my seat. He looked up and stared at me, I could see he was deciding if he'd do it or not. For a tense 5 minutes I wondered why he was so angry at me, why wouldn't he respond to a civil request. He turned from me raised the seat and I sat down. Then he slammed the seat back as hard as he could and, for a moment, the pain was unbearable.

5 hours I sat in pain.

When we landed I was jubilant, but this would turn out to not even being in the running on my list of things that went wrong that day.

Wednesday, November 07, 2018

On Our Way to Ellen's

When in New York City, we stayed at a hotel in Times Square. We did this for a couple of reasons, one was we love the energy of Times Square and two was that it was only a short walk to go to Ellen's Stardust Diner. We try to go there every time we go there. It's touristy and the line ups are long, but it's a fun place where young people studying voice and acting can work and earn some money while going to classes or auditions. They serve tables but they also get to sing and perform for the customers there. We make an appreciative crowd. So, that was our goal.

Lots of the curb cuts have been renovated from dangerous drops to smooth transitions. It's an uphill push on fairly slanted sidewalks so it's not easy. Further, some of the curb cuts, the further you got from Times Square had not been renovated and were steep and in poor repair. One street corner had no cut curb at all. But we were taking it all in stride and Joe walked with my as I fought to get there under my own power.

Then one of the curbs I was pushing up was really steep. I was making my way up. This is where I find that my right arm is stronger than my left arm and because of that my chair turns slightly. What I do then is just get the right side of the chair up and then use body motion and the left arm to finish the job. However a fellow going the other way, sees me struggle and leans right over me to grab the handle behind me. He is right in my face, and because of the way his body was poised at the moment he had no strength to help. I asked him, my lips very nearly touching his sweater, to let go of me.

It took several asks but he did finally let go, annoyed he hadn't helped an annoyed that I'm annoyed. But we say nothing to each other and he's gone. But now I'm stuck, I have lost momentum and my left arm just isn't going to make it. People are gathering to watch. I let out a grunt and pushed as hard as I could and I popped onto the sidewalk and we went on our way.

We got to the diner and when it was our turn we were taken in, the place was packed. We were directed to a table and as I turned to follow the waitstaff, one of the other staff reached to 'help' me push there. She was cut short, "Did he ask for help?" "No." "Then leave him alone, you don't have consent." The speaker was one of the waitstaff who would be performing later. I don't know where he learned what he learned, but I'm glad he did. I had not seen the 'coming help' but he had and he spoke up.

This post is not about the man who tried to pull me up a curb.

This post is about the man who insisted on my right to consent.

Two different men.

Two very different people.

Monday, November 05, 2018

Anna One

We were in Time Square in New York City just before a street show was about to start. An area had been made clear so that 5 or 6 performers had room to move. And move they did. They did a mix between gymnastics, dance and acrobatics. They had a smooth patter that was fun and engaging. They poked fun at, with probably more dexterity than any physical move they made, racists and racism. They were strategic and they kept us laughing so that we wouldn't realize that we would have to think of them and their words on the way home.

All of the performers were black, were lean, and very, very strong. Their physical prowess as they did some of the moves was literally awe inspiring. One of the fellows that I thought was a support guy was suddenly yanked into the limelight. He was big, much bigger than the others. They acknowledged, as he did, that he tended more to fat than to lean. The group encouraged him to dance and the audience, on cue, started to laugh. He was obviously not a peer of the others. So, he got down and did a couple of somersaults, awkwardly, and the crowd was now laughing with more derisive tone.

Then he returns to where he was when he was shoved back out. The music went up and he danced and moved and owned the space he was in. I was, for a moment, in love with him. He had played the audience. Played to the stereotypes they coddled in their minds. He let them be openly prejudiced and then shut them down, shut them up. It was A.W. E. S. O. M. E.

I love moments like that.

I love people like him.

That right there is civil liberties work.

What they did there is as important as any speech anyone has ever made.

Change begins with challenge. Doesn't matter that it's set to music.

Tuesday, October 30, 2018


Sometimes the most powerful conversations need only a message, not sound, not words, not speech, just a message.

We went to the mall after work today because I'd been so sedentary all day and wanted some physical movement. We arrived, we parked, we went in. As we moved through the mall the bag on the back of my chair slipped off one handle and was dangling from the other. Neither of us noticed because we were deep in conversation about Christmas. We didn't even hear when my notepad of paper fell to the floor behind me.

I was lucky because there was nothing on the pad, no notes, no thoughts, it was empty. I could have easily just lost it and never known what happened to it, but it was picked up by a man with an intellectual disability. He broke away from his staff, ran to get the pad and then picked it up and ran again to catch up with us and give me the pad. When he appeared beside me with the pad, I was momentarily confused. I didn't realize it was my paper and that it had fallen from my bag. He pointed at the back of the chair and instantly both Joe and I knew what happened.

I was thanking him when his staff arrived.

They seemed pretty good because they didn't jump in between us and begin to explain everything. I understood the story just because of the bag, the pad and his retrieval of it. When I finished saying thank you he made a slight bow in return.

He wasn't done. He pointed at my chair and then pointed at himself. I asked tentatively, "are you saying that we both have disabilities?" he smiled.

Then he pointed at himself and me, back and forth three or four more times. Then he raised his arm and made like a bodybuilder showing off a bicep. He did that twice, back and forth between him and me and then the bicep.

The staff were fighting to keep silent, and they won the fight.

They knew this was his conversation not theirs.

Knowing what belongs to you and what doesn't is the most important working skill that direct support professionals need.

I ended the conversation by pointing back and forth with him and then making a muscle.

I wanted to say, "together we are stronger" too.

He smiled, turned to his staff and indicated he wanted to go. They went along with him into the mall itself. I saw the staff a bit later near the food court, now there were two others with them. They must have been somewhere else in the mall and meeting up here.

He saw me, smiled, and made a muscle.



And we are.

Monday, October 29, 2018

And Again

I don't mean to bore you with my take on life with a disability but there are themes that are ever present in our lives. If we were a symphony we'd be 'Bolero' where the same melodic strain repeats itself over and over but faster and louder each time.

So, here we go again.

We go in to the resto/bar one building over from our hotel. We are told that if we were going to be seated at the bar, which had been our request, that we could just seat ourselves. We found a spot, pulled out a chair to make room and I pulled in. Now it was a high bar, but I'm used to that, don't mind it at all.

The bartender rushes over to us and tells us that they have a lowered bar on the other side. He then disappears and we can see him asking people to leave that space so I could have it. I don't want them to be disturbed, I don't want to be the issue. I signal to them and then to him that I'm fine where I am.

He shakes his head and leaves the bar area.

A few seconds later the manager appears beside me to tell me about the lowered bar and tells me that I will be more comfortable there. I tell him that I may be physically more comfortable there but I am not comfortable with moving several people so we can use that section of the bar. He tells me that they won't mind, how he knows this I don't know, and that the lowered bay was installed for disabled guests. I say, essentially, thanks, but no thanks, I do not want to become part of their story about being at the bar and being required to move. I am fine where I am.

Annoyance all round, but we are finally served.

I ask you this: if they installed this for disabled people why, when almost the whole rest of the bar was empty, did they let non-disabled people choose to sit there?

I further ask: Why does this happen all the time? Why does the music just go faster and faster?

We left after one beer for Joe and one tea for me and we left with quizzical looks at our backs from people who wondered why I wasn't compliant to the demand that I sit where I'm told.

Fuck compliance.

Sunday, October 28, 2018

the issue

A few days ago I had to go down to Service Ontario to renew my driver's licence and my health card. When I got there the line up was out the door. I had made time for this and though I was tempted to just come back later, later usually turns into "Oh my gosh, my licence has expired." So I got in line.

Shortly after I took my place a woman comes flying out of the door and headed straight for me. "I've told them that you are here and they are going to come and get you so you don't have to wait."


I told her that I was in the line up and I wasn't going to jump the line. "They don't mind," she said, indicating the staff inside. I said, "Well, they all do!" indicating people in the line up. And, of course, everyone turns and says that they don't mind if I go ahead. Shit. Why does disability turn people into liars? Of course they would mind, people who jump lines are loathed in the moment, it's a natural phenomenon. The first moment cave dwellers put up ropes so the people could line up to see the 'wall art' the distaste for line jumpers was born.

I said again that I would wait my turn. She said, not hearing me, "They will come and get you soon."

Now, I have everyone's attention. I'm a problem. I'm not the cripple they want me to be. I stay in my chair wondering why the hell she thought she needed to intervene.

Then, they do come for me and tell me that I could come next. There are still lots of folks in front of me. I explain that I will stay where I am, wait my turn, I don't want any special treatment, I don't need any extra care. "Your choice," the clerk said, and I said, "Yes, it is."

I'm surrounded by tension.

Again, against my will, I'm the issue.

I want to stop being the issue and just be an individual.

Is that really so much to ask?