Friday, March 24, 2017

Good Old Helpful Me

Wallets are a big deal to me. I take a long time to pick out a wallet. I am very specific in what I want from it, and, to me, it's the most private thing that I own. In fact one of the biggest fights that Joe and I had in the nearly 50 years we've been together was over my wallet. He did something quite innocent, he knew I had money in my wallet, and he needed the extra cash, so we went and got it. Now, we take all our cash from the same pot. We both put in, we both take out. The cash was not the issue. The issue was that the wallet is mine, don't go in my wallet without my permission, and I'd rather get something out of my wallet than have you take it out for yourself.

Now, let's be clear, I'm not hiding anything in my wallet that I don't want Joe to see. I do not have identification papers for the secret superhero that I become, "Phat Tire: He's so mean he'd roll over Beethoven!" It's nothing like wallet just has wallet stuff in it, but the thing is, it's mine and it's only mine.

So, wallets are a big deal to me.

Yesterday I was in the line up behind a man with both an intellectual disability and cerebral palsy. He walked with a walker, his speech was slow but clear, and he was chatting with the clerk. When I joined the line, no one else had been standing there, they sped up the purchasing process. He got out his wallet and pulled out some bills and then opened the small change pocket in his wallet to get out some coin. It was at this point that the clerk leaned over and began to reach into that same small pocket to help him get the change out more quickly. I saw his face.

I saw his face.

He didn't like it.

I got it.

I'd hate it.

A wallet is private space.

I said to him, "You just need to tell her." He shook his head, clearly embarrassed at being caught being angry at someone being nice. "No," he said to me, "it's alright."

"Okay," I said, "it's none of my business, but me, I'd speak up."

You understand that the clerk stopped what she was doing and was listening to us. She turned to him and said, "Speak up about what, tell me what?" His face went red. He was trapped.

And I felt the immediate asshat. I had no right to jump in and try to help.I was doing exactly what she was doing, except she was reaching into his private wallet, I was reaching into his private thoughts. That need to grab the handles of my wheelchair, that intrusion that I don't like to the point of hating it - well there I was, the handles on the back of his disability gave me a permission that wasn't real.

"I don't like it when you reach into my wallet. I can get the change myself." He said it without looking at her and with a few angry glances towards me. As big as I am I felt very small.

"OH! OH! OH!" she said, "I was just trying to help."

"I know, but I don't like it."

"Why didn't you say something before?"

"It's hard for me," he said, "I know that people are just being nice."

It will surprise you but I kept my mouth shut and my opinion on that did not cross my lips.

"You should tell people what you want and what you don't want," she said, "because now I feel bad."

He was now getting upset. He didn't want to upset her or for her to feel bad.

I did this. I created this mess.

They came to resolution. She wouldn't help him any more with the change and he would tell her when or if he needed help.

He left and I approached the counter. She thanked me for my intervention.

He didn't.

That's an important distinction.

Wednesday, March 22, 2017

Resenting The Effort

Yesterday was a really hard day for me. I felt chewed up. I felt spit out. These were feelings that were really hard to shake. The fact that I know that we all have bad days doesn't help. There are moments, which are universal, but when experienced feel very singular. And that was it for me. Couldn't shake it. Didn't have the energy. Didn't have the ability. So, I just let it flow over me, knowing that even after the worst fart, the air clears.

In all this, I had to go see my doctor, nothing serious, just routine. I didn't feel like going down to meet with him, I just wanted to curl up around a cup of tea and a book that would take me far away. But, I'd waited for this appointment and I wasn't going to miss it.

Coming south on Yonge there is a patch of construction that has pedestrians walk a few feet along the street and then step back up on the curb. They have made an attempt at a ramp for wheelchair users, but it's to show willing rather than to be useful. No way I can get back up to the sidewalk on that 'ramp.' So I scoot along to the intersection and then dart back on the sidewalk. This is where I turn to go to the doctor's office so, I head that way.

There is a woman standing, just off to the side and back near the building. She is small. She is scared. She clearly has mental health struggles. Seeing me frightens her. She points and me and begins to shoo me away. "Get way, you, get away, you, get away, you don't belong here, you, you don't belong here," her voice, and the agitation with which she speaks tell me that whatever's going on with her is much more significant than what's going on with me.

I know that.

Being honest here. I didn't care. I had to fight down annoyance. I had to fight down my own feelings of worthlessness and the anger that comes with that feeling. I wanted to choose words to slam back at her. They were there in my mind.

I resented that I had to be the understanding one. I WANTED UNDERSTANDING.

I resented that I had to be the giving one. I WANTED TO RECEIVE, NOT GIVE.

I resented that I had to be the one making space. I WANTED SPACE TO SCREAM.


I rolled by. I said nothing. I let her wave her finger at me. I let her tell me I didn't belong in her world. I let it happen. When I was far enough way, I heard her voice change, I turned. She was pointing at someone else. I saw their face. How hard it was.

I knew mine had been hard too.

But I didn't, like the man behind me, tell her to shut up.

I don't know if that's much of a victory, but to me, it felt like one.

Tuesday, March 21, 2017

The Promposal and World Down Syndrome Day

This morning I went to Google, typed in "Down Syndrome News" and waited the nanosecond it took for the search engine to present me with the results. My goal was to see, on World Down Syndrome Day, what I would find. I do things like this with expectations, here I expected to find an article on World Down Syndrome Day, but I didn't. Instead I found a story about a handsome 18 year old young man, described as a "kind hearted boy", who asked a young woman with Down Syndrome to the prom. There's a whack of pictures of him asking her and even a video to watch.

No question she was excited, and no question that it meant a lot to her. No question. The young man stated that, "They deserve everything that everyone else does too." 

Naturally, everyone is quite ga-ga about this event.

The comments are interesting.

They are all about him.

Not about her.

She was the backdrop to the story.

She was the canvas upon which a scene was painted.

She was the mechanism used to tell a story about a boy and a stereotype.

In none of the stories, that I read, was she interviewed.

This is World Down Syndrome Day and I don't, and won't, spend it bashing 'good intentions' of 'kind hearted' boys. But I will state that, as we move forward, I want to see stories of people with Down Syndrome who are more than the means of furthering stereotypes. Good heavens, why does she need him to ask her to the prom, isn't it slightly possible that she might have a date already? I want to hear the voices of people with Down Syndrome, they are amazing voices and need only the microphone.

The microphone.

A spot on centre stage.

And a world that will look and listen and learn.

That's what I want on World Down Syndrome Day.

Monday, March 20, 2017

The Wrestling Match

When the girls arrived on the weekend we asked them if they'd like to be part of the Saint Patrick's Day Parade that would be happening on Sunday. There wasn't even a breath of hesitation. "YES!!" And then the talk was immediately of costumes and we added into the plans a trip to the dollar store to find stuff for everyone to wear.

As we browsed around their excitement began to grow. They love parades. Because my home agency, Vita Community Living Services, participates in both the St. Patrick's Day Parade and the Pride Parade, they've been in a lot of parades. This would be Ruby's second time in the Pat's Parade and Sadie's first, they are more Pride girls. I watched them going through the dollar store stuff and weighing out what they'd like to wear in the parade with pleasure but also with a tightening knot in my stomach.

Putting myself on display, for people to take pictures of, for people to really see, is difficult. The inherent permission that you give people to look right at you, to take pictures of you, when you participate in a parade is something that I'm wildly uncomfortable with.

I have wrestled shame to the ground several times in my life. But, shame is a worthy opponent and always manages to get up again. The voices of shame appear in my mind: they are going to laugh at you, they are going to be disgusted by you, they are going to mock you, they are going to hurt you, hurt you, hurt you. As the parade grows closer, the voices get louder, meaner, more controlling. They take over my appetite, they take over my ability to think clearly, they take away my ability to hear others and be fully with people. 

Now as we are walking towards the parade gathering area to join with others in Vita, they are screaming in my ears. But, Ruby and Sadie are bouncing with excitement. At one point, Sadie, so excited by being in the parade shouts to Joe and I, "I LOVE THIS!" At another point, Ruby runs over and gives us each a hug. They are happy.

They are happy to be there.

They are happy to meet all the staff and members of Vita.

They are happy to be part of the group.

Then, when the parade starts, they are dancing! They do jigs and twirl each other around. And I notice, that I've been so involved with the 'hellos' to everyone at Vita and watching the kids get ready to hit the parade route, that I hadn't noticed. The voices had given up.

I was here.

I would march.

I would publicly be fat, publicly be disabled, I would be purposefully on display.

But shame had been silenced, and, as always happens when shame is silenced, a little voice, the one belonging to pride speaks up.

"I belong."

"I have a right to be here."

"I am a prideful fat and disabled man."

"Go ahead."


Sunday, March 19, 2017

The Moment (no spoilers)

Beauty and the Beast was on the top of the list for what we had planned with Ruby and Sadie this weekend. Knowing that a lot of showings had sold out, we arrived at the theatre for its first showing and about 20 minutes early. We bought our tickets and were ushered in. What with popcorn and visits to the toilet, those few minutes disappeared quickly.

Joe and I were both interested in the movie for several reasons one of which, of course, had been the 'gay controversy' over a moment in the film. We had steadfastly refused to read reviews for fear of learning what the moment was. We did know that it was a moment that had caused a lot of commentary. From people saying it was so brief as to be meaningless, to people saying that Disney was trying to use demonic forces to turn kids gay. We knew the movie had been banned in a couple of countries, because of that moment, and that Russia was so frightened of those few seconds that they'd determined only adults could see it.

But mostly we'd heard dismissals about the moment. The 'it's no big deal' and 'it's 2017 for heavens sake' (a statement that makes no sense at all) came the commentary from 'our side of the aisle.' Whatever it was, this moment, we went in excited to see what all the fuss was about. And then, forgot entirely all about it. The film is lush and beautiful and visually startling even. The music was fun and there were hilarious moments. The girls, who are as fun to watch as the movie itself, were enchanted.

Then, it happened.

And it was just a couple of seconds.

Played for fun.

Presented in humour.

But warmly, very, very, warmly.

It was like a kick in the gut. A moment in a film will not change the world, it might challenge the world, but it won't change it. But a moment in a film can change an individual's experience of the world. It came when I didn't expect it. It came when I was no longer waiting for it. It came like a sucker punch.

I am a 64 year old gay man, who grew up in a world very different than the one I am living in now. I will always be more than my history but my history forms the core of how I see myself in relationship to the world. The years of fear. The years of shadow living. The years of swelling anger. Those years matter. Those years affect my world view.

I don't trust that what is now will be tomorrow.

An election ...

a change in economics ...

an outrageous act by an individual that carries group blame ...

... can change how I exist in this world now.

But ... so can ...

Intentional acts of warmth and welcome.

It was just a fleeting moment. In a Disney movie. About love happening in unexpected places with unexpected people. And true to that theme, a moment happened.

Saturday, March 18, 2017

The Other Side Of Her Eyes

We all agreed to meet a Tim's. It's located right beside a grocery store, and we needed to pick stuff up for supper, as well as being a convenient place for us all to meet for a tea and gather up the girls and their stuff for the weekend. Joe and I arrived early. I pushed myself from the parking lot over to the door, which was a bit tricky but I managed, and then found the way the doors were configured, I would need help getting in, and I would have to go in backwards. 

For some reason, maybe because Joe's not used to helping me do this kind of thing any more, we had difficulty with manoeuvring the chair in and through the doors. A woman and her husband stood, gawking, at us as we did what we did. "Dinner and a show," Joe muttered to me outside the hearing of the pair. When I got the chair turned around they were still staring at me, I said, "Please, I don't want an audience." 

Have you ever seen someone go up in flames? Well she burst into anger, instantly. She told me in no uncertain terms that she wasn't staring, that they were just "watching out for you like we would for anyone else." 

Watching out for us? We are 64 year old men? Watching out for us? Why?

Sure it was a struggle to get in, but because it was a tiny space and had sharp turns. If I'd needed help, we'd have had to shoehorn someone into the space and by the time we all squeezed through, someone would have ended up pregnant. 

She stated that I should apologize.

I simply looked at her.

I had been on the other side of her eyes.

I didn't apologize.

She and her husband turned towards the counter, she stood with her back rigid. If she ordered a bagel, it might be plain when it was handed over but it would be toasted by the time she got it to the car. 

You'll notice, I didn't take her on. I didn't apologize. I had things to say. But I didn't take her on. I knew that in seconds the girls would rush through the door with their mother and I didn't want them rushing into a scene. And as I predicted, moments later they arrived full of stories about the past week and questions about the upcoming weekend.

I didn't notice her leave.

But I knew she was gone.

Heels hit the floor like gunshots as they made their way to the door.

Friday, March 17, 2017

The Monster Mash

Vampire or werewolf, which will I be? I can never tell, but, it will be one of them. I wonder if others of you who are wheelchair users have similar experiences. When I wait for an elevator, I wait off to the side, giving passengers room to exit. However, even though you'd expect that those who get on elevators would:

a) be used to people with disabilities using elevators because, um, chairs can't do stairs


b) they'd have grown used to the idea that there was a higher likelihood of seeing someone who needed elevators on elevators

but you'd be wrong.

Apparently we are always a surprise.

So, I wait. There are two basic reactions, the 'vampire' and the 'werewolf.' Here's how they work. Those who upon the opening of the door see me and fling themselves back into the elevator bathing themselves in the light of the small room - they've had the 'you are a vampire' reaction. Those who upon the opening of the door see me begin to dash around in the elevator, out of the elevator, back in the elevator, bounce from one side to the other - they've had the 'you are a werewolf' reaction.

Funny, once or twice years ago, tiresome now. I'm just wanting to get on the freaking elevator.

There is one elevator that I use a lot where I've developed a bit of a strategy. It's a small elevator that opens into a darkish space. I wait off to the side but when the door opens, I am in place. I just immediately speak, before they react. "Go there," I say firmly but without anger or upset, and point to the spot where they need to go. They do, always, kind of grateful because their nasty shock upon seeing a person in a wheelchair at an elevator, has taken away their ability to reason through how to use space. Then when they are in place, I pull in to the elevator and then they can pass by me and head out the door.

Yesterday when I did this, the woman who got off the elevator and went to where I pointed, waited as I pulled in and she said with a smile in her voice, "it's kind of like dance moves."

I said that it was.

I didn't add because it would have made sense to none but me, "The Monster Mash."