Thursday, April 19, 2018


We went back on the road on Tuesday. We traveled to Syracuse last night and landed in Boston today. I've been thinking about this trip for awhile and in preparation started a new routine at the gym. I typically do an about ahour and a half, broken in two parts, one on the ergonometer and one on the cable machine. About two weeks ago I added in something else.

To get into the gym you check in at the desk and then there are a set of steps and, of course, a fairly longish ramp. When I started at the gym I couldn't push myself all the way up. I could, however, pull myself up using the handrails. But a few months into working out and I was able to push myself up, not exactly easily at first but it got better over time.

Thinking about the need to be at the best I could be for wheelchair pushing, I started doing reps of going up and down the ramp. Counting only the ups, I managed I managed between 10 and 15 reps at a time. It got me sweating and it was hard work but I felt sure that this would help me when I was faced with ramps and obstacles on the road.

The first thing I noticed in Syracuse, where we stayed at a hotel where we always stay, is that the long, long roll down very thick carpet to the room wasn't as horrid as I'd remembered it. In fact I even wondered if they'd laid new carpet since my last visit. I asked. They hadn't. It wasn't the carpet it was my strength gained over the winter that had made the difference.


The hotel here in Boston is attached to a mall and after checking in and dumping stuff in the room we headed out to the mall. We accessed the mall by a sky-walk from the hotel and it was on a fairly steep grade down. Suddenly I realized that I was excited about trying to go back up the walk. We took a tour of the mall and I began to worry because my arms were tiring.

But we got back to the sky-way and I pushed up with almost ease!

On the road again.

And ready for what comes.

Wednesday, April 18, 2018

Chapter Title

She was seated at the next table over. She had seen me come in and had lit up. I understood immediately and waved "hello". I know what it's like to suddenly, at the appearance of another, to not be the only disabled person in the room. She, like me, a wheelchair user, pointed to the table beside her as a welcome to Joe and me.

She had been alone when we came in. Her coffee steamed from the cup in front of her.

We took our seats, Joe and I, and got the food off the trays. We were at one of those Interstate stops where you can gas up your car, and depending on what you decide to eat, gas up yourself. I turned to her and asked where she was journeying from and too. It was then that I discovered that her voice also had to journey, from the formulation of thought to word, from words to breath, from breath to speech. I took a few moments for the words to be spoken. They came out softly, but without hesitation.

I was listening to her tell me a story from her travels as a disabled woman, a very funny story, and had just taken a bite when her travelling companion arrived on the scene. She listened for two seconds to take in what was being said and then began to speak over her. Speeding up the conversation. I looked at her and said, "I was speaking with her, please let her finish." I was polite but firm.

I looked back at the woman who had been in the middle of her story when she was hijacked. She seemed a bit dumbfounded that she had been given a space to finish her stories. Tears formed in her eyes as she continued on, and a couple of times I could see her fighting for the tears not to fall. She had the bearing of a woman with dignity. I knew here friend, or companion, or whomever, was annoyed, at me or at the time it was taking, I don't know or care.

Her story had a surprise at the end and Joe and I burst out laughing. Now her tears did fall. We chatted for a few minutes more and then she apologized and said she needed to be on her way. We wished them both well on their trip. She stopped her chair beside me, put her hand on my arm and said, "Thank you."

I wondered, to myself, if this moment, our shared moment, would become a story in her life like she has become one in mine. I wondered at all the stories that are told. At all the opportunities our behaviours and actions will have to be recounted by another. Do we think of ourselves as characters in the novels of other people lives? What will be the chapter heading for the moment we make our appearance or the moment we leave?

One day I hope I'm worth the breath of this woman who loves to tell a story.

Monday, April 16, 2018

Going Pee: A Question About Bigotry

Am I a bigot?

I think maybe.

Thing is I can't trust the opinions of the people I ask, who all assure me that I'm not, because I think maybe that the bigotry against those who have mental illness is deep and pervasive. So, I've come to ask you. I'd really like to know what you think.

Some background. The first thing I realized about having a disability and being a wheelchair user was that I was more of a target for social, and even physical, violence than I was before. That fact combined with the next realization: that I was less able to protect myself from either of those two things. These realizations have stayed with me throughout the many years that I've been a wheelchair user. I guard my safety and make decisions about my safety in ways that I never had to before the chair.

On Saturday we were out trying to get a few things done before the storm slammed into us. Ice pellets were falling hard and fast but the freezing rain had not yet started. We were almost ready to go, I told Joe that I needed to use the washroom. As I rolled over to the bench where Joe was going to sit and wait, where I could take my coat and hat off, I noticed a man noticing me.

He clearly had mental health issues and it looked as if he had slipped into the place to get some warmth. When he saw me he started mumbling loudly to himself, I couldn't make out the words, but as he spoke he was looking directly at me. I became increasingly uncomfortable. Then I saw that he was standing right beside the washroom door. I was going to have to roll past him and then turn in through the bathroom door.

Here's what I did:

I asked Joe to keep an eye on me as I went in and if he followed me in to come in quickly to ensure I was safe. I didn't want to be alone with him in a room out of sight of the crowd when he'd been looking at me and mumbling.

I rolled by him.

Nothing happened.

I went into the washroom.

He didn't follow.

Everything was just fine.

Now I know that people with mental health issues are more likely to be victims, rather than perpetrators, of violence. I know that the stereotypes of people with mental heath concerns breed fear, not understanding. I know all that.

Yet I feared him.

I feared for my safety around him.

I think I may be a bigot.

I think that I have some work to do, in my mind and in my heart, to rid myself of prejudice. I think I do.

What do you think?

Tuesday, April 10, 2018

The Answer

I met a married couple, both had an intellectual disability, and I asked them the same question I like to ask when I get to know two people in love with each other. I am curious about how the connection was made, how did they find each other, what were the circumstances that brought them together. So I asked, "How did you meet?"

Their answer shocked me.

Maybe even rocked me.

They met in such an ordinary way for people without disabilities but an extraordinary way for people with disabilities. I've met and asked that question of many, traditional and non-traditional, couples with intellectual disabilities. I've heard the kind of things you expect to hear.

At work.

At a dance.

At a party.

These answers thrill me. They really do. You do realize that only a short time ago, people with intellectual disabilities were so often restricted and monitored and shackled by sex phobic policies that these answers, ordinary answers, simply weren't even options. Relationships were punished. From love came punishment, programing and pain. So these kinds of ordinary answers are new to many people with intellectual disabilities.

But the answer that shocked me, rocked me, was one I had never heard before, every, not once. I didn't even notice that I'd excluded it as an impossibility until it was said:

"We were set up for a blind date by an uncle."


They were set up by family to go on a date and then when the time came supported to be married. Forgive me for my surprise. I know that many of you who are reading this are members of families who would have no difficulty with doing this for your kids. I know that. But the couple I'm talking about comes from a different era, from a time when we held hearts in our grasps and forbade them from beating rapidly. All of us. Parents and families included.

In that one answer, I knew the world was changing.

In that one answer, I knew there was hope.

Because love does something powerful.

It forces people to reckon with their biases and prejudices in a way that nothing else does. It cuts to the core of what we believe. Love is a powerful act. It has the power to cut down stereotypes and to raise high lowly set expectations. Love between two people barely seen as people raises a mirror that reflects the face of bigotry.




Sunday, April 08, 2018

the list

My new wheelchair has been ordered.

It's all done now but the waiting and the final fitting. The chair is going to take a little longer because I've chosen to personalize it by having it painted. But soon I'll be riding around on a new chair. We are both  excited because this one is faster for me to push and lighter for Joe to lift. We were both in on the choice and are both happy about it.

It took a long time until we got a wheelchair guy to assist us by doing things like answering calls and returning emails. That might not sound exciting to you but when it's about something as important as you mobility, it's terrific.

When I thanked him, after coming to an agreement about the chair, he looked a bit confused about why I was thanking him for simply providing me the service that he was supposed to provide me. I thought about that and I realized I was actually thanking him for understanding that he job was important and that people depended on him in deeply personal ways.

Sometimes I think that those who provide service don't realize the amount of emotion, a lot of which is fear, which is wrapped up in someones dependence on you just not being an asshole. It doesn't take much for you to be an anchor for someone during a difficult time.

Showing up.

And caring.


And hearing.

Taking action.


When he left with my order in his hands all that had been done. Funny, not a difficult checklist when you look at them as discrete items. But wow, it's tough to do them all together.

Saturday, April 07, 2018

heroes everywhere

There was a huge portico that seemed to us to indicate the buildings front door. There was no parking in the area so Joe set to drop me off and then go find parking. The doors were big and heavy and narrow. We figured it impossible to get in our typical way because there were no door openers. Joe pushed the chair through and then I took his arm to be steady as he walked me in.

I got in and the building interior was quite ornate. I pulled myself back out of the way in the large rotunda that was full of young teens. Apparently there was a big semi-formal dance happening in the room right next to where I was going to a retirement party for a really, really, good friend. The parking must have been hard to find because Joe took his time. I was enjoying the excitement and the nervousness and the scrubbed up and well dressed group of kids coming in and greeting each other and speaking in voices that they one day wanted to have.

Then I noticed two boys come in, they stepped briefly into a hidden spot, that I could see because I had pushed myself out of the way of the crowd. They briefly held hands, looked into each others eyes, the hand let go and they bravely came into the room with their friends. Friends you have to lie to for safety, they will learn one day, are not friends.

They all joked around a bit, the boys presenting themselves as being without dates because they want to have freedom to meet as many girls as they could. Friends would have seen the look of sadness and desperation in their eyes.

We're not done.

We've not arrived.

We fought for marriage equality and somehow everyone thought we were done then. That we'd achieved the goal of equality. That maybe we should silence down, what else do we want for god's sake?

We want all people, including young gay couples, to feel safe where ever they go.


I heard the music through the part wall that had been created to divide one huge room into two large rooms. At one point where the music and the noise was particularly forceful. I let my self think that they were dancing together and that they were safe and that their love would not get them beaten or that their public display of their hearts would lead to the abandonment of love from the hearts of others.

They came together, they are not alone.

I hope for now that this is enough to sustain them.

There are heroes everywhere.

Thursday, April 05, 2018

Unnecessary Doors

It looked planned, scripted, a snippet of a sit com.

I was lapping the mall, just wanting to burn off some stress from work. The mall is very particular with it's mall walkers club about the exact route you need to take to get the full distance marks. The only one of the stipulations that annoy me is where, downstairs, I have to dip into a sort hallway that leads to exit doors. I go down one side, cross in front of the doors to the other side and then turn and head back. It's short but it involves difficult pushing.

There are lots of people coming in and going out that need to be maneuvered by, the aria in front of the door is carpeted, and crossing in front of the doors is always very difficult because everyone thinks that what I'm doing is wrong. They keep dashing to open doors which I don't want to go through and I have to keep explaining what I'm doing. The explaining is hard because by then I'm puffing as I speak and I lose a lot of energy with the talk.

But a couple of days ago, it was hilarious. I pushed down to the doors and a woman coming in the door that I was heading to, opened that door and stood by to let me pass. I just shook my head and turned the chair so she dashed to the next door to open it. I was by that one before she'd managed to get it open, then she dashed as fast as she could to get to the next door, trying to figure out exactly where I was going to exit. Then when she got to the last door, the first time that I wasn't a little ahead of her, having the carpet and traffic to navigate, I puffed out, "I'm just lapping the mall, but thanks."

To her credit she saw the humour in the situation.

And then she said, "Good for you!" like she was complimenting a puppy.

I just shook my head and rolled away. Once I rounded the corner I stopped and laughed. Her dash across the entrance needlessly opening doors and the desperate look on her face to help me - it was funny. And so was the look on the faces of the people she nearly pushed over trying to get to doors to open them for me.

Ah, the good times just keep on rolling.