Tuesday, March 28, 2017

What No Means

She might have been twelve, maybe thirteen, certainly old enough to know her own mind and draw her own boundaries. She was with her father and two younger brothers. I was in a long lineup waiting to pay and they were, on my right, in the bakery section of the store. They had stopped because the father had run into a cousin, I know this because it was fairly loudly stated upon their meeting, and the two men were chatting.

Then father turns to his kids and says, "Come over her and give you cousin a hug!" The two boys complied each quickly and briefly hugging their much older cousin. The girl just stood where she was and gave a shy wave but did not come over. Her father, embarrassed by her behaviour, made it clear by the tone of his voice when he reissued the command, "Come and hug your cousin!!"

Again, she didn't.

Mother joins the party, sees her husband's cousin and embraces him in a big warm hug. They kiss, both cheeks and then embrace again. Husband speaks to wife, in a language I don't know, indicating their daughter. Mom addresses her daughter and tells her to come and give a hug, and stop behaving so badly.

Daughter, again, waves, but doesn't move.

Mother goes over and dresses down her daughter. I don't know what she was saying but she was saying it passionately. Daughter is crying now. Mother slaps her on the back of her head as the daughter moves over to give her cousin a hug.

Cousin gives her a quick hug and says, "That wasn't so bad was it?"

Um ... yes sir, it was.

You could have stopped this at any time. You could have just waved back and let it go. You could have done something.

Hugging a crying child, whose tears are because they are being forced to hug you, is unthinkable.

Forcing your child, who is establishing boundaries and saying 'no' to a physical interaction that they don't want, is unthinkable.

It may be unthinkable.

But it happens all the time.

We all say 'no means no' but it most often doesn't, does it.

Most often, 'no means force'.

And that's got to stop.

Sunday, March 26, 2017

I AM ...

I am extraordinary!

Let me tell you how I know:

Yesterday I used an elevator and upon entry saw a bright pink post-it-note stuck to the back wall. It was small but its colour drew attention. I typically back into elevators but decided to go straight in because I was curious to read what was on the note. I pushed forward, made sure the door could close behind me, that my wheelchair bag wasn't blocking it, and then leaned forward to read the message.

"You are extraordinary!"

There was something so bold about the colour of the paper and the way the note had been printed, by a very sure hand, and the exuberance of the exclamation mark, that made me smile. Weirdly, for someone made uncomfortable by compliments, the message slipped by all my defenses and landed solidly right smack in the middle of my heart. It was an unexpected affirmation from someone unknown to me, left for the sole purpose of making someone's world a little brighter. And, for me, it worked.

The strangest thing though was that when I used the elevator again, hours later, it was still there, in exactly the same spot. No one had ripped it down, no one had written another message over it, no one ... it was put up by someone who wanted the world made brighter and left there by everyone else who either needed it or recognized that it was needed.

I don't know who wrote it and stuck it up.

But, I think I like them.

Small things matter, we know that, but actually getting the idea and carrying out the idea are different things, aren't they.

Doing Damns the Darkness.

And someone did that for me.

Saturday, March 25, 2017

Tell Me I Will

The little wheelchair symbol had worn off the centre of the table, granted, but as it's the only one of two tables, amongst over a hundred, you'd imagine that it would be easy to notice that two chairs are missing. But maybe I just know what that means because that's the kind of table that I need to sit at. There she sat, completely unaware of me lingering about waiting for a revelation to strike while she tapped away on her phone while eating her lunch.

We ordered our food and waited as it was being prepared. My hopes that she would be a speedy eater were low to begin with, she looked like someone who chewed. The food came but she hadn't left. So I screwed up my gumption and headed over to ask her to move. There were lots of other tables available but I still hated asking her. She responded with a quick apology and a quick move.

But why ...

... do I feel that she gave me something that I need to be grateful to her for?

... do I feel that I intruded into her lunch and was a bother to her?

... do I feel that I do not have as much right to space that is designated for me and those like me as she does for her and people like her.

... do I feel like my 'ask' could have been acceptably turned down?

Being disabled, for me, is sometimes just too complex and I have yet to come to terms with my right to space and my right for appropriate accommodation And it's been over ten years!

Will I ever get it?

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 that.my 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.

But.

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."

"Look."