Monday, April 23, 2018

Who Was She?

We've driven well over a thousand miles in two days. This has meant hours and hours of sitting in a car, I finished a long book, with a punishingly small font, somewhere near the end of the trip. This has also meant that we've seen our share of food courts.

This is our preferred form of dining on the road, it's quick, it's cheap, it's full of choice and it's always accessible. We find a mall near the interstate and then head in. For me the other benefit of food courts is that they are so democratic. They offer entrance to all, and that invitation is accepted. Perfect for people watching, perfect source for blog writing.

Our last food court, until we head home, was packed when we arrived. But we found a table easily enough because they had designated table for people with disabilities and the little blue symbol, surprisingly, had been respected by the mob.

As we ate I noticed a little child, a girl, maybe 2, in company of a woman with Down Syndrome. They were just finishing up their lunch when we took our places at our table. The child was crawling all over the woman who was laughing and playing with her.

And it struck me.

I can't even guess what the relationship of that woman with Down Syndrome is to that child. She was clearly there alone with her. The child was clearly and definitely in love with her. And while some in the court, because you always need to remember the word 'court' when you are in one, she shruggled off their disapproving stares.

Was she the child's mother?

People with intellectual disabilities often have their children snatched from them by those in agnecies which believe that it's acceptable to take kids based on who a person is rather than what a person does. But I know recently there have been cases fought and won by people with intellectual disabilities to be allowed to parent and unless parenting goes wrong are left alone.

Was she one of them?

I don't know.

But I never thought to see the day that a once impossible dream becomes real to the woken.

Sunday, April 22, 2018

Where Lies Community

Google maps found us a mall where we could stop for lunch. We were on a 12 hour drive heading to Georgia where I am presenting for a couple of days and we were getting a bit hungry. The mall, as promised, was just off the Interstate so it was perfectly placed for a quick get off, get back on.

We found a parking space and headed in. Right at the door there was a directory and we found that we had parked at the furthest point from the food court and both of us were pleased. Joe would get a short walk and I would be able to have a bit of a push and stretch some muscles. It became clear that this was a mall that had fallen out of favour and there were few people there and there were signs that stores were slowly dying.

We got to the food court, found a local eatery that served bean burgers, and placed our order. Just after we arrived four people arrived, some with physical and all with intellectual disabilities. accompanied by staff. They went about and ordered their food and then came back together at a table.

Once together they were eating, talking, laughing, they looked and sounded like they were simply enjoying one another's company. Around them sat couples or families, each on their own phones, there were also several tables where people sat alone, some reading, some simply people watching.

It looked for all the world like they had found community and the others needed social workers to help them integrate, or maybe they needed a movement for inclusion to have them more socially engaged.

Of course, this impression was made only because the direct support professionals were doing their job right. They were there, they were attentive, they helped this happen - they had also obviously fostered social skills and social interaction between each of those there. Everyone, not just the staff, were treated as if they had value.

Sometimes we are the community and the power of that should never be diminished.

Friday, April 20, 2018

The Spot at The Table

Something rather wonderful happened last night. I was scheduled to have a dinner meeting with several people who I work with on a committee. I was a tad nervous because I'm new to the committee and really only know the person who invited me to participate. Also, I'm a bit socially, um, inelegant.

As is my habit, I arrived early. We always leave time to get lost even though with modern technology that's less and less likely to happen. Joe parked and we went up the elevator to the floor where the restaurant was. We talked details about where we would meet afterwards for Joe to drive us both home.

Then he and I went into the restaurant and gave the name of the organization hosting the meeting. We were guided to a small private room and when the door was opened I saw something amazing. Lovely amazing.

Exactly in the spot which was most accessible at the table, there was no chair. I could roll and pull right into place. No pulling a chair out, no wait staff to wrestle the table into an inconvenient spot. It was the perfect thing to do to demonstrate welcome.

My reaction may sound silly as if I'm exaggerating my reaction. And I acknowledge that it shouldn't be a big deal, but it is. It's never happened before. Ever. I've had business meetings in restaurants before, but never, ever, have I arrived without fuss.

This mattered to me.

A lot.

I write this simply to demonstrate how simple gestures matter. Non disabled people expect to arrive at a table with chairs. Disabled people expect to arrive at tables with bother. But not this time.

Because I was made welcome.

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.