Thursday, March 30, 2017

The Right to Choose And How Far Does It Go: Words

Warning, I'm going to quote a conversation that I got pulled into with two people with intellectual disabilities. A boyfriend and a girlfriend were discussing who they were, not to each other, but to the world. I'm going to use the words they used as risk of offending every reader. But to be true to the story and to respect the language they chose to use, I am going to risk that.)

It begins:

I am sitting waiting for an event to begin.

They are a few feet away from me.

"I'm not retarded," he says.

"Yes you are and so am I," she says.

"It's a bad word," he says.

"But that's what we are, retarded, and it's not bad." she says.

"I don't like that word," he says, "people shouldn't use it."

"When I got called 'retard' at school, I didn't like it. But that's because it was a name and they were trying to hurt me. At home it didn't hurt to be retarded," she explained.

"The word is a wrong word, and I'm not that," he says with finality.

"Dave," she calls to me, "am I retarded?"

I roll over. I tell her that "retarded" is an old word that we don't use any more because it was and is used mostly to hurt people. I say that the word I use now, for myself and for people like her, who I serve, is "disabled."

"But I'm not in a wheelchair," she protested.

"There are all kinds of ways to be disabled," I say.

She sets her shoulders, "Well, I'm retarded. I don't care what you or anyone thinks about that."

He says that he prefers disabled.

They agree that he can call himself whatever he wants and she can call herself whatever she wants. That was the easiest part of the conversation. She then asked me if I would call her 'retarded' if she asked me.

I told her I had to think about it.

So, what should I do?

Besides hope that she doesn't ask me to because that's where I'm sitting right now.

Wednesday, March 29, 2017

Here, Now

"I can do it myself, mom," he said.

"Oh, I don't mind," she said, picking up his tray and taking it over to empty it's contents in the trash and then stacking it where trays are left for pick up.

I don't know if she saw his face, I doubt it, because people who think they are being helpful don't often look. He was deflated.

He was probably in his late forties, she was about my age.

He was born into a time of low expectations, she gave birth in a time where disability and shame were co-mingled. But they are here, now, and he wants to live, here, now. He must have noticed the young teen with Down Syndrome, like himself, working stocking drinks into the cooler. He must see other young people with intellectual disabilities out on their own, taking buses, going shopping, or to the movies with friends. He must see that.

I say that because he tried to assert himself, to do something for himself rather than have something done for him. Coming from the land of low expectations meant that he'd be trapped by helpers for his whole life, he would have been denied the freedom to try, the freedom to fail and the freedom to learn. He wants to move, into here, into now.

The young teen with Down Syndrome comes over to his table, seeing that the tray were removed, and wiped it down.

They spoke briefly.

I couldn't hear what they said.

But I saw the older man reach up and pat the shoulder of the teen, a congratulatory pat. I saw the young teen, beam a smile at the older man in response.

His mom returned, "There that's done," she said.

He didn't thank her.






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."

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

and

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."

Thursday, March 16, 2017

Lovely Scrotum Eyes

We are not "product people." When we get ready in the morning it takes minutes, the expression "shit, shave and shampoo" fits us well. So when I was in Boots in Heathrow to buy both shaving gel and balm, because we'd run out on the road, I was taken by the buy 2 and get the 3rd free offer. The only other product in that product line was an 'anti-aging' gel. I grabbed it and went to the till. I'd never purchased such a thing before but what the hell, it's free. I hadn't looked to see that it was get the one of lesser price free, and that the anti-aging gel was really expensive. Oh, well. I had it now.

This morning I decided to use it and after turning it over to read the back to find out how to use such a creature, I started laughing. Joe came in to find me, sitting naked on the side of the bed, freshly shaven and howling with laughter. I handed him the anti-age cream and he looked at it and then back at me flummoxed. I'm not that cheery in the morning. I pointed out to him that it was an 'anti-aging' cream and the writing on the back was so small that no one over the age of 40 would be able to read it. It was written in white on a black background in tiny, microscopic text. Didn't they think about who was going to use this cream and what kind of print would they need to be able to access the information on the back?

We got our magnifying glass, and it was too small for the magnifying glass. So we had no idea how it was to be used. Was this for the bags under my eyes or ... well, you get the question. I mean it was for men, so it really could have been a cream to make your scrotum look young and perky again. We definitely didn't didn't want to use scrotum cream around our eyes. It's cold outside.

Accessibility ain't just ramps.

Accessibility ain't just for people with disabilities.

Accessibility is also for naked men sitting on the side of the bed trying to read exactly where to put anti-aging cream.

And if accessibility includes that, it includes, in some way, everyone.

Wednesday, March 15, 2017

How and How Come

How come whenever I see three people together, two walking and one pushing the wheelchair, I never see the person in the wheelchair being anywhere but in front of the pusher and the other walker beside the pusher? I never see the 'non-pusher' walking beside the person in the wheelchair.

How come when I see a couple of staff out with a group of people with intellectual disabilities, I always see the people with disabilities trailing behind the staff, looking as if attached by an invisible tether?

How come when I go to inclusive events people with disabilities aren't really ever actually included, bot other forming islands of isolation around the room?

How are we supposed to expect any kind of success at 'community' when we ourselves model exclusion all the freaking time?

We left his communication board at home.

I know what he always has, I'll just order for him, it will be quicker.

My guys need me to speak up for them.

How are we supposed to expect any kind of success at self advocacy if we constantly get in the way of the every day use of voice?

Here let me help with that.

Just sit back and relax, I'll take care of that for you.

It'd be faster if I just did it.

How are we supposed to encourage full participation in a full life if we simply don't have the patience for people to do things in their own time at their own pace?

Maybe welcome begins with us.

Maybe the community learns disrespect from us.

Maybe we need to pause, every now and then, and think about what we are doing.





Tuesday, March 14, 2017

Luggage

We arrived home to the warmest welcome possible from the security guard, they call him the concierge, working at our building. We hadn't seen him for 4 years and were surprised to see him back, he's 77 after all and, he'd be okay with this, looking every day of his age. He's a man who has worked hard all his life. After he left we've had a series of younger men and women on the desk, all friendly, but this guy, he lived to help out, to be friendly, to get to know everyone.

Having tons of luggage meant that Joe would run a few at a time up to the apartment while I stayed in the lobby to watch over the remainder. This is usually a chore and a draw on my patience after a trip, but this time I just sat back in my chair and chatted with the old fella. He takes some listening to because he talks very quickly and he has a fairly heavy European accent. 

We have a moment when no one is in the lobby and he leans in to tell me that his health isn't good and that he's facing a couple of major battles. He joked that at night he could hear St. Peter getting his room ready in the sky. But even with the joking, he was clearly scared and worried and wanted to talk about it. So, we did.

At one point he asked me about my wheelchair and my life in it. One of the possibilities, he told me, was that he'd have to be confined to a wheelchair. I didn't leap on those words as I might have with someone else in another context, he didn't need a lecture about them. I did joke, however, 'better to be confined on wheels than confined in a wooden box.' and that lit his face up and he laughed. "I suppose it would," he said.

He needed reassurance from me that if his life took a turn, there would be a ramp, a way back to living fully. Finally Joe took up the last of the luggage and I waited for an elevator to take me. He shook my hand, thanked me, said he was only filling in for the 'boy' who wanted the weekend off, he scoffed as if this was something absurd, and wished me well.

As the door was closing on the elevator he said, :"Joe took your baggage up, you took mine away, thank you!"

Sometimes I'm really glad that I'm disabled and proud ... there are times when that really matters to me, but to others as well.

Monday, March 13, 2017

No Room

We'd landed. Joe and I were both mentally prepared for what was to happen next. Pearson Airport, in it's wisdom, has completely carpeted the very long passageway from the gates where international flights dock to the Canadian Customs hall. It had been my determination, for months, to prepare to do this trip under my own strength. Looking down the long, long hallway that led to another long, long hallway, I almost relented and accepted help from the people sent to push me. But, I'd trained for this and I was going to at least try. We sent them on their way.

It was very, very, hard pushing. It seemed like they'd installed a newer, plusher, carpet from the last time I'd flown. At the end of the first hallway, I said to Joe that I didn't think I was going to make it. But we'd sent away those who were to help me, so I just took several breaths and started up again. When I made it to Customs, I was elated. Almost done. Just needed to go through Customs, get our bags and then get to the spot where the bus would pick us up.

I know this airport well. I knew I had one longish ramp to face and then a fair push to the bus stop. I'd done carpet so I could do this. Joe waited at the top of the ramp, not even bothering to come and spot me on this one, I'd done ramps twice this length in the Metrocenter in Newcastle. But, just as I was getting to the top a man said, "May I help you," while grabbing me. Not again! I grabbed my wheels and held them tight telling him "No" really firmly. He said, "I did ask," and I said, "You grabbed me at the same time." There was a moment of brittle hostility on both sides.

I had to then, near the top, with no momentum, push myself the last few agonizing inches. He watched me do this and then his face softened, "I'm really proud of you. Really, really, proud," he said and then left. I had no time for this pride. The luggage took along time to come and we were cutting it fine for making the bus. So I just motored down the terminal towards the door where the bus comes. I flew.

On the bus, I began to think about why he thought that his pride in me would matter to me at all. He's a stranger. But maybe he thought he was a representative for all non-disabled people who watch a person with a disability determinedly do something on their own, maybe it was a collective, "We're proud of you." I don't know if you all remember a letter that went viral from some random dude to a fat person running on a track, but it was a kind of universal embracing of the effort the fat person was putting into becoming normal or some such shit. Yeeuck.

But, then, I thought, what if I had actually needed assistance? Would that make me someone who lived on the edge of pride, the outskirts of shame? What the hell? Assistance or Independence in the life of a person with a disability is an incredibly unique combination of factors that are singularly about that person and their life in their body. There is no room for comment.

And that's it isn't it?

There is no room for comment.

Saturday, March 11, 2017

My Face Will Be The Death of Me

I know I look unhappy.

I know my face at rest gives the impression that I'm a sour, maybe even bitter, person.

I'm none of those things.

Long before I became disabled I had to deal with bartenders, and wait staff, and General J.T.C. Public who would either be wary of me of want to cheer me up. It's become a little more complex now that I have a disability. Typically people now attribute my perceived unhappiness as a result of my being a wheelchair user. No way in hell a cheery hello or a 'buddy can I get you a beer' will fix that will it?

I've talked with others who, like me, have faces that are misread and mostly we simply laugh about it. There's often a very good story behind assumptions that people make.

It happened again this morning. We were in the executive lounge of the hotel we are staying in, we have access because we are really regular and really loyal customers. We are 'elite' customers. I say this not to brag but to put what happened in context. I am clearly someone who, wheelchair and all, lives a fairly active life, at least with respect to travel.

Joe went upstairs to get our bread, we travel with our own bread and we'd forgotten it in the room. A fellow at the next table, on walking to the buffet, stopped and told me to 'cheer up' and suggested that I think happy thoughts. Annoying but innocuous. I smiled, which probably looked like a grimace, but, whatever.

On his way back he said, "You know there are probably solutions for life,' he patted the armrest of my wheelchair, 'in this.' I was dumbfounded. I was confused. I didn't know what he meant, or how to take what he said. When Joe got back and we were having our breakfast, I quietly pointed out the man who had spoken to me and told Joe what he said. Joe looked shocked, "Have you overheard their conversation?" he asked me. I told him that I hadn't paid much attention to him or the people at his table. "They are all doctors," Joe said.

Doctors.

The guy was a Doctor.

I don't want to go all paranoid but, I have to say, that I realized that one of the things he may have been referring to, as a suggestion for how to deal with my life, was death. He could have also been suggesting weight loss or some other medical intervention less drastic than death.

But here's the thing ... it's a possibility he meant that, from his perspective as a doctor, I'd be better off dead.

All because I have a face that, at rest, looks unhappy.

All because I look unhappy while sitting in a wheelchair.

A Son's Wisdom

Joe had gone to park the car and I was pushing myself into the Metrocenter, a really large mall close to our hotel in Newcastle. There was a slight rise and I was working to get myself up and over to the accessible door. An elderly woman and her son with an intellectual disability were walking towards the same door but from a different direction. I saw her concern as she watched me work to push up to the door and I knew that she desperately wanted to help me. I also knew that, at her age, that simple act could kill her.

We each neared each other and then, she darted towards me. Her son's hand shot out and took hold of his mother's arm. "Ask first," he said, "remember, ask first." A bit of annoyance and a bit of anger crossed her face at his direction, but she slowed to a stop and asked, "Could I give you a push?" I told her that I was just fine and didn't need any help. I glanced at her son and said, "Thanks."

And I meant it.

On arrival here in Heathrow I was grabbed and pushed, almost violently, by someone wishing to appear helpful, with is different than actually being helpful, and as a result I've been in pain all week. It's beginning to lessen, but my neck and back have bothered me ever since he grabbed the back of the chair and pushed me, hard, forward. I flew back in my chair and my neck snapped backwards. The pain for the first couple of days resulted in me needing some fairly strong pain medication.

So, yes, I thanked him and yes, I meant it.

"Ask first, remember, ask first," he had said. I don't know the story behind his quick response and or what personal experience he has had as a person with a disability that led him to such a skillful intervention, but what ever it was, I'm thankful.

"Ask first, remember, ask first."

Friday, March 10, 2017

this morning

I lay in bed this morning, waking up a few minutes before having to get up. I could see my wheelchair, parked off to the side outlined by the faint light of morning. I felt this powerful sense of gratitude towards it. Even in the dimness of the light, I could see the wear and tear of travel and of constant use. I could see bumps and bruises, the lost arm rest, the ripped seat, the worn out rubber on the tires.

And I loved it.

It's taken me to the Yukon and to Florida to San Francisco and Vancouver and Edmonton and New York and Halifax and Boston and London and now Newcastle Upon Tyne. Even this list is abbreviated ... so many other places, so many other events, it's taken me there, it's brought me home.

It's part of me, even when it's sitting across the room from me, in early morning, waiting.

It's part of my identity, even when I'm not in it.

It frees me, to be here now, to do what I am going to do today.

They say it confines me, and maybe it does ... to a life of freedom, and of movement and of participation.

A few minutes later, I am up, shaving, showering and sitting here writing this. All done in the chair that waited for me all night.

I owe the life I have to a part of me that others see, but simply can't understand.

Thursday, March 09, 2017

Feelings

I had the opportunity day before yesterday to teach a kind of 'train the trainer' session which focused on the abuse prevention curriculum that I developed, and then refined later, years ago. Several people with intellectual disabilities came along, volunteering to be taught in front of an audience of staff, and, to a one, they were willing to participate and allow me to demonstrate how the class runs.

This is always tricky and my anxiety is always high. I've done this a fair bit and there are times where those who volunteer to be part of the group who are taking the class become intimidated by those who are there to learn how to teach the class. That makes things really difficult, of course, and it's worthy of a worry or two. But, the group who gathered here in Newcastle were ready to participate, and eager to help out.

The class was going swimmingly and we were having fun doing role plays and playing games. Then, near the middle, the class slows down a bit so that we can talk about feelings. The basic feelings, glad, sad, mad and scared, are introduced and then people are asked what things make them feel in these four different ways. We always start with happy as it's the easiest of the emotions to talk about.

When teaching a class within a class, at this point I break the wall between the two and include the support professionals there to learn. It's a nice way to include everyone and to make the point we all have feelings and, often, share with each other the causes for those feelings. So I asked, "What makes you happy?" and a woman with a disability put her hand up. I went to her.

I've done this a long time. I am used to answers like, sunny days, going out dancing, being with family, going on holiday, pay day, watching movies ... the usual things that people mention when talking about things or activities that make them happy, that give them a good time.

She said none of those things.

In a small, gentle and quiet voice, she said, "Feeling loved."

I felt sucker punched. I wasn't expecting that answer. I've not had one like it before. It was profound, it was true and it was intensely human. I agreed with her, thanked her for the answer and continued the class, I had no other option.

As a service provider, I sit at tables where needs are discussed and where goals are set and where dreams are talked about, even if distractedly. Seldom do we talk about someone's need to feel loved. Seldom to we talk about what it is to be human, what it is to be lonely, what it is to live without love. Love isn't a big part of our vocabulary. Love is messy. Love is confusing. Love is cause for reports, for meetings and for consultation.

"Feeling loved," she said in answer to the question, "What makes you happy?"

On Friday I will give my last lecture here in the UK and it's about love, relationships and sexuality. I hope that I do it justice ... no, I hope I do her justice.

Happiness, love, belonging ... and again I learn, never ask a person with an intellectual disability a question unless you are prepared to hear the answer.

Wednesday, March 08, 2017

those, here

Just after picking up a ready meal at the grocery store, I left Joe to go and use the loo. I was pleased because it was a very long push from where we had finished shopping and, because the store wasn't really busy, I got up a real head of steam. It felt good to have a bit of a run. I got to when I had to make a sharp turn and I spun round with precision. It was perfect and I felt great.

I went down down the much narrower hallway to the toilets and turned to the accessible loo. I'd been there before so moved with confidence to the exact doorway. The door was open and I began to roll in. A woman, walking with her husband, said, "I'll close the door for you."

I didn't want her help, I found it an intrusion, I'm an adult man going into a toilet, there is a degree of privacy that I expect in regards to certain bodily functions. And, of course, I didn't need help. I said, "It's okay," and before I could say more she stated, "I don't mind."

And that's supposed to be it, she doesn't mind, the idea that I might doesn't enter the equation. I said, then firmly, "No, I don't need help."

Her face hardened and she turned from me saying to her husband, "He's one of those kind."

"Those kind?"

I get it, I'm one of those kind of disabled people who want to determine when, where and by whom I receive help.

I want to say to those of 'my kind' here in Great Britain, "I'm proud to join your number, and there must be a lot of you. You who demand respect, who say 'no' when you don't want help, who operate in the word with the expectation of equal treatment and a degree of dignity. You've entered the consciousness of some of your non-disabled peers ... that is a victory because it is, in my mind, the beginning of real change.

Monday, March 06, 2017

The Girl at Tesco

I was pushing myself down an aisle at Tesco here in Newcastle and I was slowing down because a young man with a little girl was standing, texting something into this phone. The little girl was looking at me coming, looking at the space that was left for me and then looking back up at her dad, he was oblivious all but his phone. As I got closer, I heard her call to her 'Daddy' to get his attention. I don't think he heard her and I saw a wee bit of annoyance cross her face.

I was slowing to a stop when she called up, "Daddy, you are standing that that man's way." I liked the firmness with which she spoke, not rude but assertive. He looked down at her and then over at me. I was stopped then and I smiled and waved.

"Oh, sorry," he said, "I was just ..." and then he realized that the sentenced didn't need finishing and he just shrugged. "Daddy," she said, "you have to look out for other people." This kids vocabulary was big but her heart even moreso. I told her as I rolled by that I appreciated her watching out for me. She suddenly got very shy and whispered a 'welcome' back to me.

It was such a nice interchange with a nice little kid. I liked it, but it also reminded me that the issue of watching out for others is something that is something that little kids understand so easily.

Pity that this kind of thing is called, disrespectfully, 'the innocence of children.' Because it's not, it's the wisdom of children. It shows were we all have come from and where we all could, if we wished, return.

Sunday, March 05, 2017

Missed The Training Day

We arrived in the custom hall and I busting for a pee. We found the loos and it was immediately evident that we were back in the UK. I love the accessible toilets here, it's one of my favourite things, as a disabled person, about the place. Nice, though medical looking, toilets. I made use of the facilities, and got back in my chair several pounds lighter. Joe met me, also looking relieved, and we headed off to find the queue that we belonged in.

A woman, looking like she'd never been to a training on disability or any other form of disability, pointed at us and then at a line and said, "You, medical, you go to medical, it's number one. Number one, medical. That's you. Medical."

I was caught up short and said, "Medical?" I was concerned because I thought that she thought I had some condition that I needed to be grilled about. She nodded and said, "Wheelchair, is medical, you are medical, go there, line one, medical."

I got in line one behind two wee, small, buses with people with canes and walkers in them. The were questioned and then the buses moved on and it was me. I rolled up prepared for medical questions, I didn't get any, my disability wasn't mentioned at all.

We left and went to get our luggage, which we were relieved, wasn't on a belt with a sign over it saying, "Medical, You, there. Medical here."

Saturday, March 04, 2017

Training Kicking In

It all started very early in the morning. We'd requested a ride such that we'd arrive at 6AM but we were offered a ride that would get there at 5AM with a pick up time of just after 4AM. So when the alarm went off we woke and then moved with blistering speed. Even so, the bus was waiting and the driver tapping his foot as we came out the door.

We relaxed into the ride and watched Toronto sleep and marvelled at how many others of us were in cars or on the street at that time in the morning. By the look of some of them, they were simply trying to find their way home from the night before. Given that the traffic was really, really, light, we got to the airport in record time and were in and ready to get in a line up long before our scheduled arrival time. Talk about being ready.

It took a few minutes of figuring out the monitors to be able to determine where we were supposed to go to get checked in, but eventually we did and we made our way over to the check in counters. I thought we were to use the computerized check in stands but Joe went over and spoke to a woman who directed us to a serpentine pathway to a series of check in desks. I rolled over to him while asking whether or not we had to check in electronically.

The woman, who had spoken to Joe, then spoke to me.

Let me stop for a second and ask you a question. Have you ever seen someone's diversity training just click in a second after they started talking? Me either, but it was funny to see it happen.

She said, "Wheeeee ..." starting the word, "Wheelchairs ..." while indicating, "go here" with her hand. But she didn't say that and the "eeeeee" part of the world just stretched out. She knew, probably from some training she had with some trainer somewhere, that she shouldn't refer to people as "wheelchairs" but she was stuck, she'd started the word. But then, her eyes sparkled, she'd figured out what to say.

"Wheeeeeee ..," she began but finished with ... "....llll, help you here.

"We'll help you here,"

A good save.

Joe and I glanced at each other and held back our laughter. We wanted to give her the impression that we didn't notice, because it was a really, really, good save.

Friday, March 03, 2017

Two Feet

The plane landed and I looked at Joe and said, "Here goes!" I was excited by the prospect of taking on Heathrow, I had done laps, I had lifted weights, I had visualized the push. I was met on board by two men offering to get me off the plane, through customs and on to luggage. It was ironic that the first time I decided to do it on my one was also the first time that the wheelchair assistants were at the plane on arrival. I said that I thought I could do it on my own. They told me it was a long way, I said that I thought I was up to it. They stayed with me for a bit and then, shaking their heads, left.

OK, made it to the customs hall. Got a bit of a break because, though it was a long way, there were lots of downhills. Once through customs and through luggage, we were heading over to the rental car area. This was a really long push and I was working hard, I slowed to go through a door and suddenly my head jerked back. I was so shocked that I didn't know what happened. A guy was behind me, not an airport pusher but just a random guy, he declared, loudly, that he would help me. I grabbed my tires and screamed, "NO!" He used real force to push me and I told him to leave me alone.

He left angry. His help spurned and my guts were churning with anger and stress and violation. I continued on, Joe catching up just after this had happened. He just said quietly that he'd seen what had happened.

I got to the bus for the rental car.

I got to the car, a long push from the desk.

I got to the hotel room, through plush carpet.

And you know what?

I feel defeated.

Two feet, two fucking feet. He pushed me two fucking feet and took away my victory. How dare he do that to me? He grabbed me. He assaulted me. He inflicted himself on me.

And he took my victory.

Two fucking feet. I pushed it all, except two damn feet.

You may think me weak or over emotional.

But I'm crying as I write this.

Wednesday, March 01, 2017

When Nothing is Something

We had stopped for a cup of tea. I was comfortably in place and about to take my first sip when I was approached by a tall tired looking black man who asked me for some change in order to get a sandwich. I virtually never have change as I always pay by debit, but I do carry $5.00 Tim's cards so that he could go and get a coffee and something to eat when he wanted to. I told him where the Tim's was in the mall and he nodded a thank you and then continued along the tables.

Most people politely refused him, a few gave him change, but then he hit a table with two women, both white and both looking quite wealthy. One of them, and I know you will find this hard to believe because we did and we were both there, refused to give him change but then set about telling him how he could improve his approach to people for money. She instructed him on the etiquette of begging!!

She told him that he should approach with a friendly smile.

She told him that he should always thank someone who gave.

She told him that if someone refused he should just say 'thanks anyway' and move along.

She adopted the attitude of helpfulness.

This was all happening behind me and I had to turn. I watched him stand there patiently, knowing she was not going to give him any money, and let her lecture him on the basics of asking for change. His patience with her was extraordinary because I found myself wanting to butt in and say something but I also knew it would be unwelcome by both of them.

He was handling the situation.

He didn't need another person doing something for him when he was dealing with it himself.

When the lecture was done, he set off, went to a table or two more and then started down the elevator. He saw me and pointed with a question mark on his face, and I indicated that yes, Tim's was straight ahead. He nodded thanks.

I nodded back.

Sometimes doing nothing is doing something.

That goes for both him and me in that particular situation.