Monday, September 28, 2020

A Wee Bit Peckish

 Sometimes power gets hungry.

Sometimes power wants a snack.

A young woman wants to see her boyfriend. They both live in the same agency but within different group homes. The agency has been adhering to what they call 'best practice' as determined by the province they live in. It's all to keep people safe. Doing something for someone's own good is sometimes a nearly invisible tyranny.

This couple had been moving towards marriage. They have the support of both families and nearly all their friends. But like many all of their planning and dreaming go put on hold at the arrival of the Coronavirus. Their province responded swiftly and suddenly, without warning, they were in quarantine. They never got to say goodbye to each other and they weren't allowed to connect. When asked why "the house phone needs to be kept free for an emergency call."

Many of the staff are not supportive of the relationship. They don't believe that the two understand what love and marriage mean. They don't think they will be able to survive without 24 staffing. "And what about babies?" is the refrain that comes from almost every level of management.

From the parent's point of view, their daughter and future son-in-law are on an unnecessary lockdown. Now that there are bubbles, surely they would be in each other's, but it seems that bubbles are for baths not for unwanted and unsupported relationships. At every turn, COVID-19 is raised as the reason.

Trust me, I'm not an anti-masker and I'm as frightened of the virus as any other 67-year-old diabetic. But I think that when prejudice and limitations are put on someone 'for their own good' it had better be 'for their own good.'

Even the slightest creativity could solve this.

This is what I'm consulting on I said to both parties?

We zoomed to a solution in less than half an hour. This is not because I'm a master negotiator, it's because it was easily understood that the power that the agency had, didn't need to take a bite out of the lives of two people in love.

AND, they are letting me tell the story.

Sunday, September 27, 2020

Sadie's View of the World

 Yesterday we took Ruby and Sadie down to the Art Gallery of Ontario, known locally as the AGO. Our goal was not to walk through and view portraits or landscapes or sculptures but to have an interactive visit. Joe and I had picked up each girl a drawing pad and some coloured markers. When we got in, we told them if they wanted to draw one of the pictures or if they were inspired to draw something that came from seeing one of the pictures, they could.

Sadie took us at our word and after a quick view Emily Carr and some of the Group of Seven, she chose a landscape and plopped down beside it. Ruby made a quick sketch of the only Van Gogh in the museum and was ready to head into another room. Joe went with her and I waited quietly offering neither encouragement nor direction as she needed neither. She was in a world that existed of only the art and her drawing.

She stopped several times and sat up really straight and looked at the picture for a bit and then leaned back like I do when my back gets sore. She was sitting on the floor and I wondered if she were comfortable. So the next time she did it, I asked her, "Sadie, are you okay?"

Glancing at me, she said, "I need to see it, I mean I need to see all of it."

Then she went back to work drawing with intensity and as she drew she saw things in the picture that were there but that I hadn't seen. We left only when she said she was finished.

On the way home I thought about what she had said, "I need to see it, I mean I need to see all of it." That's such a wise thing to say and applies in so many situations.

Twice in my career, I was offered the opportunity to become an Executive Director of an agency. I always refused much to people's surprise. But this is the reason why I'm not good at seeing all of it. I have always needed a boss that had the capacity to see more than I did, 'the bigger picture' they call it but now I think they should call it 'the clearer picture.'

Sadie, right now in the world, may be a bit of a prophet.

We all need to see the bigger picture, we all need to lean back and just take it in. We need to see really see, beyond the boundaries of our own prejudices and own parameters. One little girl, sitting in front of a painting, with a drawing pad in front of her, understands that if she wants to get the picture right, she has to see it, all of it.

Saturday, September 26, 2020

Done For

 I found a new seated exercise routine on-line and decided to give it a go. The instructor was a young man, very physically fit, who knew his audience would be those who were in wheelchairs or those who by accident or age needed to do a good workout while sitting down. It was a hard routine and I wasn't used to the rhythms of it so I was struggling a bit to keep up. Then, in the cool down, he was leading viewers through stretches.

It was here that he gave a bit of a lecture. He talked about the point of the exercises was to gain strength and flexibility to enhance our ability to participate in the running of our lives. Why work to reach up in an exercise class never to reach up and put a cup away in the real world?

The fact is that when you have a disability, it's easy to let your life slip into other people's hands. It's quicker for them to mop up, so they do it. It's easier for them to do the laundry, so they do it. Sometimes it's not about the disability it's about the lack of expectation and the sense of charity that comes with doing 'for' someone.

All this was in my mind and I turned from my desk to look into the kitchen.

There were dishes piled up waiting for Joe to do them. Well, in fact there are things I can't do because of my disability but dishes aren't on that list. I shut down the video and rolled into the kitchen and put paid to the stack of dishes needing doing. I could put everything away except what was on the upper shelves.

When Joe came home, he was in a bit of a shock. All he had to do was take the cups and plates and put them into the cupboards, pots, pans and cutlery was all put away.

It felt good.

Like I'd made a contribution.

I think I have to stand on guard not to give over the tasks of my life to another. I think family and staff supporting someone with a disability needs to do the same. Each of us in our lives have tasks that are suited to our hands only. And sometimes those tasks are what seems mundane. But they aren't, no favours are done for those who are done for.

What I'm telling you that I did an exercise programme on the computer and then I did another round in the kichen.

Friday, September 25, 2020

What I did and What I shouldn't do again.

 A young woman, someone close, someone I respect, posted on Facebook her reaction to the loss of Justice Ginsburg. In it, she stated that with the loss of one woman, one vote, women could lose ground in the constant battle against institutionalized sexism. How close to the precipice we are.

Then me.

I read it and wrote a lengthy response talking about Ginsburg's loss and what it means to the gay community. Marriage equality passed by one vote. I expressed this in what you might call a fulsome way.

Here's what I thought I was doing:

Adding to the conversation.

Here's what I actually did:

Derail the conversation.

When she wrote her post, she wrote from the point of view of a woman and her reaction to a situation she saw as dangerous. The fact that she didn't mention all the ways that Ginsburg will be missed doesn't mean that she's unaware of those things and needs someone (me) to remind her. People are allowed to talk about their personal feelings and reactions from their lived experience and the point of view that grows from that experience. They are allowed to talk about that and have it validated. They don't need someone saying 'me too, me too, me too,' all the way through their conversation. But that's what I did.

I think that's part of the reaction to Black Lives Matter - people are inept at listening to one point of view without having other people drown them out with ego and self-centeredness. Sometimes, even if we have experiences that we feel parallels the discussion, we need to stop playing oppression football. Shutting up, listening to another, and processing what's been heard is becoming harder and harder in a world that has i-phones and i-consciousness - if it's not about me, I'm out.

So that's my long way of saying sorry Shannon, I should have just listened and validated.

I will do better.

Thursday, September 24, 2020


 I've started a new exercise challenge. I don' want to bore you about my new commitment to fitness, but that's part of this story. When we go to the mall, we park in the disabled parking spots and go in. When we leave, I roll down to the bottom of the hill. You see the parking is at the top of a long, very long, slope downwards to the duck pond. I roll all the way down, turn around, and push myself back up.

Now I'm not a skinny kid, I'm a fat old man. I have to push all my weight, and the weight of my chair, and the weight of the bag that hangs behind me. So, one day I was pushing uphill. It's hard work so I was breathing hard. A fellow approached me and I knew help was going to be offered. I said, "No thanks" before even being asked. 

He said, "Oh you are working on your guns, huh?" I said that I was, and still did not look at him. I pushed a couple more times and he walked beside me and said, "Want me to keep you company and keep people from helping??" I said, sure. He chatted lightly and was really amusing. Just as I was nearing the car another fellow came to help, my breathing now was hard and he was told, nicely, "No, he can do it on his own." The offer of help persisted, "Leave him be!"

I got to the car and turned the chair to face him. I said, "Thanks," he said, "I know what it's like to get help I don't want."

I'm sure he did. He had Down Syndrome and was a perfectly charming gentleman. I was impressed with his assertive skills, and I say that not because he had Down Syndrome, but because most people don't have the assertiveness skills they need.

He did and I needed them. My  job of pushing up a hill was made easier by someone who didn't let other people make it easier. 

Wednesday, September 23, 2020


 Joe zipped off to go to the bathroom. It's amazing how, as we've gotten older, a lot of stories begin this way. I headed to the car and was pushing myself towards the elevator. I saw ahead of me a Mom with two small children. Her son, the oldest, looked to be about 5. He saw me and his eyes went wide. There was curiosity all over his face and his grin was cute and infections. I grinned back.

He headed towards me without a thought of his mother, in that way that kids do when they become suddenly singleminded, when they have not yet learned the dangers of this world. He wanted to see my chair. But he only got a few steps and his mother grabbed him and pulled him back. I think she thought she was clearing my path. But I had already begun to slow and I'm good enough in my wheelchair that I don't leave a trail of dead children behind me.

It was what she said.

"Don't go anywhere near that man!!"

He protested.

"I said DON'T."

The sharpness of her reply cut him and he began to cry.

I know better than to intervene in these situations. And besides, Mom had her hands full in just managing his tears and upset all the while watching her daughter. It's not a learning moment.


I think she scared him about me and people like me.

I think she planted a seed in his heart about disabled people and our place in the world.

I don't think I'm over-stating it because I believe that prejudice is taught. I believe the lessons we give kids, intended or not, are learned.

His friendly attempt to talk to someone different than him ended in pain.

I hope one day an innocent encounter that he has with someone different doesn't end in pain again.

Tuesday, September 22, 2020

Bringing Myself Down to Earth

I had a few days after retirement planned. They were good. Relaxing. Happy. Varied. All that you want in the early days of owning your days. We literally gloried in them. I also had time to think about and appreciate all that had happened at my retirement party. The people, the good wishes, the gifts, and finally the naming of the clinic after me. The last one was so huge that I am still processing what that means and firmly committing to live a life worthy of that honour. I felt lauded. 

Then the second week came, it was one full of appointments. I had the nurse on Monday, the doctor on Tuesday, a trip to a clinic in Toronto for a second opinion on Wednesday and on Thursday I had to prepare for a colonoscopy. Drinking huge amounts of foul-tasting 'flavoured' liquid only to later expel huge amounts of foul-smelling liquid. I wondered at the idea of giving someone who moves very slowly, the runs. But it did what it was supposed to do.

Friday I went for the test. I arrived and they agreed to let Joe in with me to help. Soon, I was laying on a bed in the hallway, trying to relax for a test that I was scared of. I'd never had one before. I spent time thinking again about the last few days, the retirement, the people, the time, everything. Then suddenly they were there taking me into the examination room. I met my doctor for the first time and he told me that he'd be gentle. I was shown a huge video monitor. I was told that I could watch the procedure if I wanted.

The camera was turned on. I saw the floor and the doctors feet and legs. Then it was brought up and closed in. I thought "what's that" before realizing with a shock that I was seeing my bumhole. Really up close. Huge on the screen. It looked like it wanted a cookie.

That's life for me.

One day a beautiful day.

The next day.

My butt on the screen.

I am always brought to earth, quickly, my feet walk firmly on the ground.

(ps. I am fine, I'm just getting check-ups, the colonoscopy was good)