Wednesday, January 23, 2019

Calling To Random Strangers

Coming out of the theatre with Ruby and Sadie after seeing the movie "The Upside," we made our way down the ramp and into the long hallway to the lobby. We were playing in theatre furthest from the lobby which meant two things. Carpet and it was closest to the accessible loo.  Sadie was ahead of me, Ruby was beside me on one side and Joe on the other. I called, not loudly, to Sadie and asked her to hit the accessible door button. I did this for two reasons. It would make my entrance easier and find me a child that doesn't like to push buttons, of either kind.

As soon as my request was out of my mouth, the trajectory of 4 or 5 people's journey towards the lobby shifted significantly as the moved towards the button on the wall. Now I hadn't shouted a general request for help or assistance. I had asked Sadie, by name, to push the button. I wanted to stem this tidal wave of helpers so I did call out loudly, "No! No thanks, I was asking Sadie," who everyone would have seen as she was, ever competitive, heading with determination to get their first, towards the button.

That stopped all of them.

But one.

She kept going and it was clear that she was going to race a child.

"No! Please!" I called again.

"I don't mind," she said as if the fact that I do doesn't come into it.

"But you aren't family, she is, I asked her," I said.

She stopped and looked and saw that I wasn't alone, as was her assumption, and I suppose the assumption of everyone who had gone to help.

We lead surprising lives, we disabled people.

But one of those surprises shouldn't be, we don't call out for help with any part of the toileting process to random, passing strangers.

Surprising, indeed.

Tuesday, January 22, 2019

Teach Them Well

We pulled up to an elevator where a family with a baby carriage was also waiting. We were all chatting about the -21C temperature and trying to find ways to describe it. The elevator door opened and we all waited for the family to take it up. It's not a large one so we knew we'd be on the next one. However when the husband got on he maneuvered the carriage over and then I was invited to pull in beside them. The wive and son, who would have been about 4, said that they would take the stairs. At first I politely refused but they were insistent, so I got on and Joe and the girls took the stairs.

On our ride up I thanked the husband for what the family had done. He told me that he and his wife value compassion and good citizenship as traits that they want their children to learn. "It's hard to teach these things, you have to do these things and then hope they see," he said, then he smiled and said, "so having children has meant that my wife and I started out pretending to be much better people than we were, but it's becoming more of a habit."

We both laughed and I admitted that a lot of the time when I was out and in public was spent in pretending to be the person I wanted to be, not the person I was.

I told this anecdote to a few people and several of them remarked something like, "Wow, if that's true, I can't imagine what was held back." I talked to them about this and they reminded me of times that I spoke up or spoke out. They thought, I guess, that being a good citizen or being compassionate was about being polite or being calm in all circumstances.

This floors me.

Thinking that citizenship is about being quiet and acquiescent? What? When I said what I said I was thinking not about being quiet those times I spoke up in the face of either prejudice or bigotry, but those times I didn't. I need to pretend to be stronger than I am much more than I need to pretend to be quiet and simply let things pass.

The hardest thing to shake off, in the real, tangible, face to actual face, world is complacency. Outrage and verbal smack downs on line are nothing like real world encounters. Being good at one does not translate into being good at the other. On line I can respond in an instant, in the real world I have to take a breath and steel my resolve before speaking up. Silence is the hardest material to break when it's the most important time to break it. I know.

Good citizenship and compassion are shown when you make space for another, at a cost to yourself, on an elevator. It's also shown when you ensure that a voice is heard when a voice needs to be heard.

Both are hard.

Both take work.

Both make us better people.

Those kids have amazing parents because for at least 4 years they have been turning complacency into kindness in order to teach their kids, and change themselves.

Wednesday, January 09, 2019

That's What It Means

"She called me that word," she said pointing at a woman about retirement age. "She said I should be out alone. She said that she shouldn't have to see people like me when she goes out." Her distress came from a deep dark place. She was one of the people who had lived much of their lives locked away from society. One of the ones kept out of public view. It was obvious from where I sat that she was devastated.

The staff who had been nearby had only heard the woman use the 'R word,' but was insistent that no other conversation had happened. That the woman in question didn't say anything about being out alone or being locked away. The staff thought that his client was, at best exaggerating, or, at worst, telling a lie to get attention. The staff was annoyed.

When talking to the woman, she was confronted. Yes, someone who had just suffered social violence isn't supported but confronted. The staff asked her bluntly what the woman had said to her. Again she said the the woman had used the R word and that she shouldn't be out alone, and the she shouldn't have to see people like me.

"I was with you, you weren't alone."

"She didn't see you with me, she saw you on your phone."

"I may have been on my phone but I did hear her speak to you, and the only thing she did was call you a bad name."

"It isn't just a bad name."

"You need to just take a breath here."

"No, I need to scream."

"She did wrong, she shouldn't have called you a name, but the other stuff never happened."

"You don't understand do you?"

Puzzled look.

"That what the word RETARD means!" she is crying now, "It means I don't belong, it means I should be shut away, it means that I shouldn't be out, it means that I deserve everything that happened to me. It's a word that hurts me, deep."

"Oh, you are making too much out of this. Outing is over, let's go home."


Some people don't listen. Some people don't learn. Some people don't care to listen or learn.

Tuesday, January 08, 2019

Two Men, One Woman, Your Opinion

It was hard not to notice her.  I was in a hotel gym that had a cable machine. This is something I can use and do a wide variety of exercises. I was about half way through my routine when I noticed her. I have a habit of closing my eyes when I am doing an exercise as that helps me stay focused on what I am doing and to not be distracted when counting reps. She had come in when my eyes were closed.

I only saw her back. She was a petite woman, on an elliptical machine and she was working hard. I'm gay and all but that doesn't mean I don't notice when a woman is really fit and strong. She was. I went back to what I was doing knowing that I had only a few minutes more before I had to go upstairs and shower and change and get ready for the lecture day.

My eyes were closed and I was counting, very near done, when I heard two men talking about the woman on the elliptical, about what 'a  nice ass' she had, and mooning over her figure. I'm thinking, 'ah, shit, leave her alone, she's just doing exercises.' Then, they burst out laughing, 'Holy shit man, Holy shit."

I finished my count and saw what they saw. She had finished her routine and was getting ready to use another machine. She had Down Syndrome. She was quite beautiful. She was really in shape. The two men immediately shut down their sexualized talk about her.

I'm conflicted. I'm not comfortable with sexualized talk about anyone by anyone in a public forum. I may be a prude but I figure that people need to just keep their mouths shut about other people's bodies or attractiveness when out in the world. Fat bodies, thin bodies, fit bodies, different bodies, all need to be able to just be and that means that others just be quiet.

The reason for my conflict is that their understanding of her as an adult woman, with Down Syndrome, shouldn't eliminate the fact that she is hot. That she is attractive. That she is an adult sexual being. That doesn't disappear because she has an intellectual disability.

Some may disagree with what I'm saying here. I have been accused of sexualizing people with disabilities, I tend to think that I'm suggesting that people with disabilities have been de-sexualized in the minds of the systems that support them and many of the parents who raise them. For me it's a simple equation. They are human, they are sexual, that's it.

I understand all the risks of victimization, trust me.

I hear stories of exploitation, a lot.

But here in this situation, it seemed to me that a woman's disability simply erased her sexuality, erased her attractiveness, erased her adulthood, and erased her full humanity.

What do you think??

Monday, January 07, 2019

Choose Movement: A Blog Not About Exercise

A lot of you know that I've been working at becoming stronger, going to the gym, parking far away from the mall entrance, using my wheelchair treadmill at home. I think a lot of people who do this come up with their own slogans, Nike did extremely well with 'Just Do It,' but that didn't really work for me, so I didn't borrow, I developed my own, 'Choose Movement.' This was powerful for me when thinking about my life - I'm naturally a sedentary person, I typically choose to be passive, not active. Going to the store, sit in the car while Joe runs in, that was my choice. But I 'Choose Movement' when it's offered to me. This really works for me.


I ran into someone I hadn't seen for a while and we stopped an chatted. She asked me if I had noticed that she no longer commented on my blog. I said that I had and that there is an ebb and flow to people commenting on it so I didn't think about it very much. She said that something in my writing style had changed and she didn't feel as comfortable as a reader as she had in the past.

I asked her to tell me what she had noticed.

She asked me if I really wanted to know.

I said 'Yes, of course.'

Then she gave me her feedback. It was quite critical, and I have to be honest, it stung. I am old enough to know that if feedback stings it's because you recognize the truth in it. I listened, asked questions to clarify and make sure I understood, and when she finished, I thanked her for her feedback. Then, as we parted, it started.

"What does she know?"

"No one else feels that way."

"Not sure why she felt a need to attack."

This is what I do with critical feedback, at first. I have to get the hurt feelings out of the way. No one likes to be on the receiving end of helpful feedback. I did this for a couple of days.

Then, this morning, I lay in bed thinking about it. Her feedback suggested I needed to make a change in how I approached writing this blog. I had to think a little more carefully as to who my readership is and who I might be leaving out or leaving behind or criticizing by content. I thought about it and the phrase, 'Choose Movement,' came into my head. It's not just for getting my body moving, it's also about getting my mind moving, not becoming comfortable sitting in one place, getting my mind out of it's recliner chair and moving about and making change. I am, at 66, too young to get stagnant and stale. So I've dusted off my thinking cap and put it back on. To those who have felt distanced by the content of this blog, I apologize.

Choose Movement.

In every way that can be understood.

Choose Movement.

Saturday, January 05, 2019

Saving My Butt

It was rushed, it was chaotic, but finally it was done. The kids were in the car, their bags were packed in the trunk, my wheelchair was put away, and we were ready to go. It's amazing how, with kids, time both slows down and speeds up at exactly the same time. But we were on our way. I had a doctor appointment in the city and the girls were going to see their dad for the weekend. It made sense that they ride down with us.

We dropped them off, said goodbye and headed over to park in the lot of a mall that's right across the street from the doctor's office. We were well early so we decided that we'd do some grocery shopping, bring them back to the car, and then head over to see my doctor.

Joe pulled got the chair out and suddenly panicked. The cushion, the really expensive made for me cushion, wasn't where he expected it to be, where he always puts it. He tears apart the back seat and the trunk but no cushion.  We fold the chair up put it back in and drive up to a level where we got phone reception. We called Mike, did they accidentally take the cushion with them when they grabbed the girl's stuff? Mike checks, inside and then says he'll run down to where we parked to see if it's there. Got a text: Not here.

Next we call Marissa. We'd all gone out for breakfast before heading down, could she check the parking lot. We don't reach her but break all sorts of etiquette and leave a message. She calls us and tells us she is on her way to see if she can find the seat cushion.

We park and use cloth shopping bags and a towel for a seat cushion, and head into the mall. We get better reception there we wait. And talk. It's a winter day, a slushy one, if it's found, what shape will it be in. Joe must have, we figure, left it on the top of the car and, because of the panda and his monium, didn't do the final step of loading. We wait for the call.

Marissa calls to tell us that the cushion has been found. It wasn't where we parked and it had been run over once but she thinks it's still okay. She said she'd drop it off at our place and clean it up a bit. She assures us it's usable.

We go to the doctor's office only to discover that we've arrived a week early. My appointment was for the following Friday. Great! Suddenly our doctor appears in the waiting room and calls us in saying. 'One day I'll get some lunch.' I felt horribly guilty but then he assured me that it was okay and he was good with seeing us.

Finally we drove home.

We find the cushion, cleaned up and looking no different than the last time we saw it. It's just fine.

I call Marissa and tell her that she literally saved my ass.

We laugh.

That's the best way to end a story like this.


Friday, January 04, 2019

Low Weight

So this happened: 

I went to the gym today with renewed enthusiasm. I was excited because I'd done some research and found some exercises I've never tried on the cable machine. I found them on an exercise video on YouTube by a Paralympic athlete and both of them looked like fun and were reportedly good for developing muscles needed for pushing a wheelchair at top level. I have adapted most of my exercises from just watching how non-disabled people used the machines I can access. Needless to say many that I watched don't adapt to wheelchair users but a surprising number can be as well. I felt I had a pretty well rounded set but then, watching this guy's video, he mentioned a couple of exercises that I'd never done and that would, apparently, make me a stronger pusher. Awesome.

So I got there excited and I decided that I'd go through my regular routine and then try out the other three. The first was hard but doable, the second, well, it looked easy when he did it but when I tried it at what I thought was a reasonable weight, it was simply impossible, I didn't have the strength.

I kept lowering the weight to try and  find one where I could do the movement. I finally got down to a ridiculously low weight. My process of trying lower and lower weights was watched by a couple of guys who I see sometimes at the gym, they are so fit that even their poop has muscles, and, of course, as such, doesn't stink. Anyways, they chuckled as I dropped weight and ended with one that was really low.

But once I got there, I did 30 reps and really enjoyed the feeling of my muscles doing the new movement. I understood in doing why this would be helpful to me as I self propel my wheelchair. They guys watching still found it funny, a big guy like me and a little weight like that.  I grinned to myself because I know something those guys don't. 

Where I start isn't the same as where I finish. 

I am here now but I won't be here in three weeks. 

Don't laugh at where someone starts, be impressed that they start at all.

I finished all the new exercises and am now looking at how to fit them into my regular routine. The one that belongs to me and no one else. Some people need to exercise their kindness and compassion more than they do their biceps and triceps. What's the point of big arms if not to hold up others, embrace others, and keep others safe? Isn't that what we're all in this for?

Thursday, January 03, 2019

Wishing To Be Who I Could Have Been But Wasn't

I've heard a number of people talking about New Year's resolutions over the past couple of days. They ask me if I've made any. No. I haven't. Not because I don't have things that I wish to change, I'd like better control over my addiction to sugar and I'd like to like kale. But these things are so trivial aren't they. I've not heard people making much in the way of resolutions about the big changes that need to be made.

I had to pee. Peeing is an issue for people with disabilities just because the architects wish it so. So we went to a men's toilet off in a dark corner, the lights being off as the stores in that area of the mall are closed. Once in the accessible stall was taken. The person in there knew there was someone waiting because he called out that he'd only be a minute when I pulled on the door. I waited 5 minutes and I was bursting for a pee. I called to him and told him that I needed to go. He called back that he was changing, that the stall right then was his home, he had nowhere else. "OK," I thought, "But I really have to pee."

I decided to make a dash to the other men's toilet. It was a long way away and I didn't know if I'd make it but I had to do something. We left and I thundered through the mall, up ramps down ramps and finally I pulled into the other washroom and there was another homeless man in there, also having made camp. There is NO OTHER PLACE to go in the area. I really, really, really had to pee. I spoke to the janitor and he came and pounded on the door and asked the guy to get out so I could go pee. I'm dying now. But he gets out, I get in, and I pee. It felt so good.

It didn't feel so good later. I had a right to a space to pee in. But my feelings towards both men weren't kind. Even though my mind told me that these stalls are bigger, roomier, and I could see how they could be used as sanctuary, I was still angry that they had taken 'my space.' I get that I have a right to pee but I also have to get that other people have other needs. I don't want to sound like a bleeding heart as I'm writing this, I just wish that in these moments I could replace the anger with understanding even as I need to assert my needs. My anger is just another reason to hide away in a bathroom stall for safety.

He sits down beside me as I'm working out. I've seen him before, I know that he has autism, I've heard that explained by a staff that's usually with him to people who inquire about his behaviour. I think that his diagnosis is no one's business but the staff seems to think sharing it freely is acceptable. Today he has no staff, he has never spoken to me before and when he does I'm a bit stunned. He makes a really derogatory comment about my body. I sit in silence because I'm stung. Going to the gym always puts me in a vulnerable place but most people, thank heavens, keep their mouths shut. Since I don't say anything, he makes another even more nasty comment. He does so in a regular speaking voice as if it were fact that I was what he said I was. And. Maybe I am.

But, even though I work with people with intellectual disabilities, even though I am supposed to understand, I didn't. I said to him, "What you said to me is really rude, please stop." This devolved to me telling him to just leave me alone. And finally, he did.

Again, I was unhappy with how I felt inside, how I responded. I do have a right to be left alone and people don't have a right to make very personal comments about my body, true. But it's also true that so many people with disabilities aren't given the skills necessary to manage their world. You will find fat people at gyms, it's a given, the staff have seen the clientele, so, teach to the situation. I'm guessing I'm not the first person he'd made these kind of comments to ... help him.

I tried to stretch my understanding but it's only so elastic and it broke. I'm sorry, I could have been way nicer in my interaction with him. I need to tamp down my vulnerability such that it isn't an excuse for me to react like a jerk. I need to acknowledge I'm still hurt by ugly comments about who I am and what I look like and that I react harshly when that hurt turns into a feeling of humiliation.

If I made a New Year's resolution it would be about how to become a finer person, how to be a little nicer, how to use understanding as a tool so that I react like in the present like I wish I would have in the future. Does that make sense.

I vow only to keep living an examined life.

And I thank you, readers, for joining me on my journey.

Tuesday, January 01, 2019

The Ruler: A New Year's Day Post

After the crackers had cracked there was great commotion as everyone looked for their crown, their prize and their joke. Once the paper crowns were in place, the prizes found and dismissed, it was time for the jokes. These crackers had jokes that led to groans, not laughter, but we went through the lot of them.

"What's great and has a trunk?"

Well a mouse going on vacation, is the obvious answer.

When Ruby got to her joke she read out, "Why did the boy take a ruler to bed with him at night?"

Now, and be ye proud of all of us adults, we restrained ourselves, and restraint it took, from making any kind of crude joke. I just choked out, "I don't know, why did the boy take a ruler to bed with him at night?"

Now Sadie, Ruby's younger sister, just wouldn't let us go on without her guessing the answer. She would throw guesses into the air like confetti. This time she was silent for a second and then her eyes lit up, she had an answer.

"So he could measure how far away he was from his dreams."

I looked at her for a second, her eyes wide, sitting with anticipation to see if her answer was right, and wondered how this 9 year old girl came to an answer so deep and so wise.

"Wrong! It's so he could find out how long he slept."

Before we moved on I said, "Hold up a second." I turned to Sadie and said, "You answer was a really poetic answer Sadie, it was way better than then answer that was on the paper, I loved what you said."

"What did I say again?" she asked.

I repeated her answer. She looked both pleased and a bit embarrassed by the focus now being on her and an answer that was declared wrong.

"Sometimes wrong answers are more important than right answers," I explained.

"Tell my teacher that," she said and laughed.

The evening went on but her answer stayed with me, as these things do. I marveled how creativity, and Sadie is highly creative, can lead to different and important ways to tackle a problem. She took a mundane joke and turned it into a profound statement.

Wouldn't we all like to be able to measure, give a concrete number, to our progress towards our dreams? Isn't it tough not really knowing if you are making progress or treading water? Are we actively becoming or are we passively satisfied with history being taken care of by itself?

It's New Year's Day, I hope when you measure where you are today against where you were last year, you see your dreams a little closer, your hopes a little brighter, your aspirations a little clearer. It's a journey this life, so, like Sadie suggests, bring a ruler.