Wednesday, March 21, 2018

it hurts because

A long time ago, when I first became disabled, a little boy stopped, looked at me, and asked, "Does it hurt?" I knew the question was about my disability and my use of a wheelchair and I was touched by the softness in his voice, he was young enough, still, to care for everyone's well being. I told him that no it didn't hurt and that the wheelchair could even be fun. He smiled. He was glad.

But now, years later, I'm going to tell the truth about disability, "Yes, it hurts."

I am lucky because, for me, my physical disability isn't accompanied much by pain any more. That has reduced significantly over time. So when I say that it hurts, and it really does, I mean a different deeper kind of hurt.

The kind of hurt when you find out at the last minute that the room you booked for that night isn't wheelchair accessible as you were guaranteed. The painful panic that accompanies the next 10 phone calls to be told over and over again that there's no room in any inn. And when you end up having to stay 40 kilometers away from everyone else, in a small town that has a hotel with a room.

The kind of hurt you feel when you've planned to go to an event and have been guaranteed that the place is accessible so you plan to go with a bunch of friends. Only to find out that accessible means a step and a narrow entrance and suddenly you are the problem and everyone's concerned about your feelings and you are tired of having people feel for you and want it all to stop.

The kind of hurt you feel when you find out that people simply don't ask you to join them simply because they don't want to have to worry about accessibility and it's just easier. When you find out they've talked themselves into believing that you don't really want to belong anyways.

Disability hurts.

I lied to that little boy.

I hadn't meant to.

But yesterday I bashed myself around for even being disabled. I didn't want to have to go through the frustration and the energy and the whole whack of shit that comes with needing what people don't care to give, with dealing with sham guarantees, with dealing with the sudden panic of being suddenly a problem again.

I have to keep solving the same problem over and over again.

It hurts because it shouldn't.

It hurts because it shouldn't.

It hurts because it shouldn't.

Monday, March 19, 2018


On Sunday Joe and I, along with Marissa and the girls, went to see 'Love, Simon." For those of you that don't know, this is a movie about a teenage boy who is dealing with coming out as gay. The movie has the critics strongly on its side and the gay community holding its breath waiting to see if anyone will go. As elders in the LGBTQ+ community, Joe and I went in a little unprepared for our emotional reaction to the film. That it exists. That it tells a story that we can relate to. That it's a love story. Those things, which we knew going in, well, the experience was more powerful than the anticipation. Something that is almost never true.

But I wanted to write about the fact that there were a lot of teens in the theatre. Both young men and young women. We heard them chatting, too loudly. We heard them eating, too loudly. We heard them switching seats, too loudly. They took up much more space than the seats would have predicted. But they were there and we were glad of it. Glad that they chose to come to this movie, and glad of the support that their presence would mean to the box office. If we want more of these, we need money in the registers, we know that.

Throughout the movie Joe and I just didn't look at each other. We didn't decide this going in but we both knew that it was the best approach. We didn't want the kids to see us laying on the floor crying. So we held it together and just cried and cried and cried. I can't explain to you why if you don't already know. The movie was bright and funny and moving. But wow.

The thing was, at the end, at one of the pivotal points of the movie, the teens who had been silenced by the story they were seeing, starting applauding and cheering. Out of the blue, and their cheers were authentic, they, like us, were unused to seeing what we just saw. And they cheered.

Throughout the last few minutes there was more cheering and hooting and applauding, these kids were into it. When it was over, there was a final burst of applause and then the noise started as they talked about the film and how brilliant it had been.

We loved the movie.

But we loved it even more that teens could go and see a movie about a fellow gay teen and react with love and hope rather than with jeers and revulsion.

Because that has been our journey. And "Love, Simon" is another stop along the way.

Saturday, March 17, 2018

The Powerful Act of Just Living

We arrived at the hotel yesterday after a long ride and were looking forward to getting out of the car and into our room. The lineup to check in was simple and we had our keys in moments. We'd asked for help with our luggage and the porter followed us along towards the elevators. The elevator is at the top of a mucky big ramp and I asked him to go along with Joe and I'd follow behind. He said that he would hurry back to help me up the ramp.

Um, no. I grabbed the handrails on either side and was at the top of the ramp before he had a chance to park the luggage cart. Then he suggested that I go up with Joe and he'd follow. We've had our luggage disappear on us once in a hotel years ago and we never leave it unattended. I asked him to go with Joe and I would follow. He agreed but he had this shocked look on his face.

When the next elevator came I was on it and up to our floor and pushing towards our room. When I got there the door was propped open and he was unloading the last piece of luggage. He turned and saw me and almost jumped out of his skin. "You're here," he said, shocked.

I waited for him to get the cart our of the room so I could enter and we wished him a good night. Joe told me that he was stunned at my ability to get around and to be 'out there alone.' Joe said that I don't really need a lot of help.

He made noises about learning something every day.

And you know what, I hope he did.

Thursday, March 15, 2018

The Rescue

I could feel it in my hands, even though it wasn't there. I was sitting in my wheelchair, alone and overwhelmed. I felt my inadequacies keenly. It's in moments like these that I come closest to despair. It's in moments like these that I question who I am, who I'm supposed to be, and feel that the world has been cheated by getting this Dave and not that Dave.

I was immobilized. Not by my disability. Not by the wheelchair. But by the weakness of that comes when the darkness within cast shade on any possible light. I knew I had to do something.

This is not the first time that I've experienced this.

I've had messages for most of my life about my worth as a human being.

Not good enough.

Not smart enough.

Too fat.

Too ugly.

Too stupid.

I hear the words attached to those messages. I no longer wonder if those who used them realize that I, by the nature of my construction, would have to bear their weight my whole life long. I think not of them, but of me. And what I am.

It's in moments like these that I forget that I have it. Hidden away. Far away and deep inside, I have kept it safe.

It's a photograph, not the kind taken by cameras but the kind taken when a moment in time intersects with magic and flashed by joy. I have a few of these. But there is one. It's far to personal to describe, but it's there. I look at it sparingly because the light from it hurts me. Like when a bandage closes a wound, it hurts.

I felt it in my hands, this picture.

And I looked at it.

From the photograph slowly came strength. Slowly came a new language into my mind. Language that suggested that I do have strength, that my own voice is as powerful as the ones that ripped me down, that I can go and I can do.

And that.

Of course.

Doing Damns The Darkness.

Wednesday, March 14, 2018


It was a demonstration of drumming and the kids, at least 70 of them, were totally into it. The instructors were having fun and were clearly well trained in both drumming and how to control a mob of kids. They taught them a rhythm for stop and another for start. The kids loved understanding the message of the drum, probably tired of voices and instructions and things that felt like school. Ruby and Sadie had a drum and a rhythmic noisemaker which they shared between the two of them.

There were enough for every kid to have something but the drums were the most popular. When they were distributed a young girl with Down Syndrome's mother helped her carry the drum to a space on the floor. Mom had just got her situated on the drum and returned to sit in a chair when two kids, also girls, who had noisemakers saw her as an easy victim. They headed towards her with the obvious purpose of pushing her off the drum and taking it from her.

When they got there they told her to get of the drum and give it to them. Mother is now alert but she didn't get up, she just watched intently. The little girl with the drum looked at the two towering over her and said, clearly, loudly and firmly. "No, it's mine."

One of the kids reached to take the drum and the girl with Down Syndrome stood up, the drum held in place with her feet. She said, "I said NO!" Several people turned now and saw the confrontation. Mother had risen about half an inch off her chair ready to dash, but she didn't move.

The standoff was only a microsecond long but it felt longer. The girls who had come over to this 'easy victim' backed down. One even said, "Sorry."

And it was over.

That little girl.

That mother.

That family.

They all understand the importance of the word 'no' and 'mine'. People with disabilities have a right to both those words. NO! MINE! All kids have a right to those words. Parents need to teach and then after teaching, trust their child to fight their own battles and only intervene when necessary.

Mom's teaching had been needed.

In the moment, she had not been needed.

I salute parents who do the job of getting kids strong enough to use the voice they have and to stand alone and strong when they need to.

When it was all over the little girl with Down Syndrome got to beat the drum she was given, the drum she didn't let be taken away.

It's not a minor victory.

Tuesday, March 13, 2018

Daddy Daddy

Joe was in a long line up. I would have been with him but the area was cramped and I didn't feel like having people towering above me. One of the shocks of becoming a wheelchair user is that my 6'1" frame is always folded down into a seated position so I went from being TALL to being not tall. Joe jokes, sometimes without much humour, that he never used to have difficulty finding me in a store but, now with my disability, he really has to search for me. So, didn't want to be there, and because I didn't have to be, I wasn't.

After only a few seconds of waiting, I indicated to Joe that I was going to go for a run. He nodded. I turned the chair and looked at the long stretch of the mall in front of me. There were few shoppers about, and I gave the wheels a shove and went on a joyride in my chair. I love it when I've got the space and the time to just fly in the chair. I'm no paralympian by any stretch of the imagination, but I'm not slow either I can create breeze.

When I reached the end my muscles knew that they had worked. My chair is old and clunky and now has a very poor roll. My push isn't aided by the chair any more but that doesn't mean that the engine isn't able to make up for it. It took a second to get my breath and then I flew back. I was going so fast that I couldn't hear the words of those I passed by. People startled by a wheelchair passing them are sometimes unkind, the world turned upside down for a moment.

Joe was nearer the front of the line when I got back, panting, at the start point. It felt good. It felt good to have a run, it felt good to just enjoy the chair and the pushing and the work it took.

People misunderstand wheelchairs.

They misunderstand life in a wheelchair.

But not kids. The one comment that I heard as I passed a father and his little boy was, "Daddy, Daddy, I want one of those." his finger pointed solidly at my chair.

Monday, March 12, 2018


We had taken our seats in the movie theatre and were enjoying the trailers. People were still pouring in and choosing seats whispering louder than a normal speaking voice. I love the movies, I love being in a room full of people there for the same experience. I was relaxed into my wheelchair and just enjoying the feel of being there.

Most people chose to come in, turn immediately to their left and go up the stairs to choose their seats. But two women entered, the one in the lead chose to cross in front of us and go up the far staircase. When she passed in front of us I recognized that she had an intellectual disability and was being accompanied by her staff. Just past us she stopped and looked up at the seats.

You can tell the quality of service that an individual gets almost instantly. The first words that come out of a staff's mouth, the tone, the texture, the content and the feel of those words will tell you everything. The staff leaned into her and said, "Where do you want to sit?" The woman considered for a moment and then pointed at seats that would have been about midway up the theatre. She lead and the staff followed.

That was it.

That was the whole interaction.

Those were the only words spoken.

But I know a lot. I noticed that the woman had a choice and she showed no fear or hesitation in making that choice. She didn't look back at her staff for affirmation that she'd made the right choice.

There is no choice where there is fear.

I noticed that the woman led the two into the theatre, she was not guided to a 'right way' of finding a seat. She didn't follow the crowd and was not expected to nor was she urged to make the same choice.

There is no choice where there is expectation of conformity.

I noticed that the woman's sense of leadership, the sense that she was at the helm of her own ship, was not once compromised. The staff was comfortable with supporting without leading. supporting without questioning, supporting without lessening. She was not diminished by the fact that she needed support. She is vulnerable to the ability of staff to know how to assist rather than insist and that vulnerability was not preyed upon.

When you support someone, you are always being watched.